tag:blogger.com,1999:blog-30463322761918157112024-03-13T14:03:03.438-04:00With Every Little Beat...We're a regular family dealing with extraordinary circumstances! Our children are Zachary, Eli, & Charlotte. Eli was diagnosed with multiple heart defects when he was 10 weeks old. This blog is a way to follow the progress Eli & our whole family makes as he lives a whole life with half a heart. We have been blessed in so many ways. We chose the title "With Every Little Beat..." because we've come to realize what a gift every moment truly is.Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.comBlogger164125tag:blogger.com,1999:blog-3046332276191815711.post-80402334200155797022018-11-01T12:55:00.000-04:002018-11-01T12:55:01.385-04:00Eli's 8th Birthday and paracentesis #11So, Eli is 8! It's been an amazing eight years. If I say more, I'll get too sentimental and there's not time for that right now! <br />
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<tr><td class="tr-caption" style="text-align: center;">Second grade </td></tr>
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Thank you to everyone who send cards for his birthday. He LOVED opening them! We let him open them Friday night (night before his birthday) at the hospital. He was doing really well after paracentesis #11 and we figured we'd get to leave early Saturday. Letting him open them Friday was the best choice because he took about three hours to do it! Eli exclaimed over each card, had me help him read them, and kissed several cards. Many of you went beyond the cards and sent gifts (definitely did not have to do that, but he was very excited by everything!). I lost count of how many times he said "This is so special" about a specific card or gift he opened. He is really beginning to understand that people don't have to do these things for him. Well, sometimes understands!<br />
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After he opened all the cards & gifts that were mailed to us, he had more cards to open from his classmates. He was very tired by then so I read those to him, but he looked over each one, front and back, before moving on to the next. They were filled with drawings of basketball players, baseball players, dinosaurs, and lots of hearts. Many of them included messages that brought me to tears from his fellow second graders "I'm so glad you're in my class" "I can't wait for you to come back Monday" "Always be yourself" "Eli is my best friend" It was precious. <br />
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<tr><td class="tr-caption" style="text-align: center;">The cards and gifts he opened at the hospital</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cards from his classmates!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I don't remember what was so funny, but he was cracking up!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">People did lots of special things to make the cards memorable for him</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Kissing one of the cards that was so special to him</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbllGTGPJ_2fzScBxqmv960M1LUNBIFsjg_Y2UnS5blptYCgiw3tr9TIaX03cWjA6RVMe7SBHDAISO_jkgoG5txZw1c2r31K0S6UB_VdK_o-RqKJk71qE4XnPpm-Ohceaks8fmkhZz5UO5/s1600/20181026_230856.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbllGTGPJ_2fzScBxqmv960M1LUNBIFsjg_Y2UnS5blptYCgiw3tr9TIaX03cWjA6RVMe7SBHDAISO_jkgoG5txZw1c2r31K0S6UB_VdK_o-RqKJk71qE4XnPpm-Ohceaks8fmkhZz5UO5/s400/20181026_230856.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A new Paw Patrol blanket from one of his teachers, a new baseball pillowcase from the hospital staff, and his snuggle guys all laid out across the bed. He is a loved little boy!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhndKhxEs3A2Ws2IBAJUYSQjRqspDZfAfA5tZo9yUdMZRgWHzTpMtkqdWmkZEr6uVr1AS_si_TERJf5asS9D9BtPYxMdfguP3qu2ahsRZ0XBKy915d5FxsQAr2OZ4B4xxke4JJkmWZGZQZK/s1600/20181026_210754.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhndKhxEs3A2Ws2IBAJUYSQjRqspDZfAfA5tZo9yUdMZRgWHzTpMtkqdWmkZEr6uVr1AS_si_TERJf5asS9D9BtPYxMdfguP3qu2ahsRZ0XBKy915d5FxsQAr2OZ4B4xxke4JJkmWZGZQZK/s400/20181026_210754.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is an extra special gift! It is from Steph who was a tech on our unit when Eli was first diagnosed. She is one who has seen him through surgeries, feeding tubes, strokes, therapy, and all sorts of struggles and celebrations over the last eight years. Likewise, we've seen her work as a tech as she put herself through nursing school, got married, had a baby, and is now a licensed nurse practitioner. She isn't on the unit any longer, but still in the St. V family and always part of our hearts. She made this shirt for Eli. The front has a baseball with crossed bats behind it and the back shows his name and an 8. All the white parts glow in the dark! She also gave him a water bottle with his name on it and a really nice Hot Wheels set that the three kids have played with for several hours already!</td></tr>
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After he went to sleep, I hung three posters in his room. One was a large one signed by all the second graders at his school. Another was a heart shaped one with baseball seams that was signed by most of the teachers and staff at school. Lastly was one from the hospital that was signed by many of the nurses, techs, and other staff. He also had a stack of three gifts from the Child Life Department and they later brought him some gourmet cupcakes from a nearby bakery. <br />
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<tr><td class="tr-caption" style="text-align: center;">Signed by all the second graders at school</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHFgEOomn8NTueHLw9nQcTEPcFz1-MX8G9-gzF9vkfw01tHmCGhf5u1V1eE4ZIPkmX6dfFRdLY2pLH38UfBvX_TPHNR1bgYhY7PK5tIxsG63zBTh5jhRQLGwOYIqOC27cS23jLy-MW7JHT/s1600/20181027_012339.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHFgEOomn8NTueHLw9nQcTEPcFz1-MX8G9-gzF9vkfw01tHmCGhf5u1V1eE4ZIPkmX6dfFRdLY2pLH38UfBvX_TPHNR1bgYhY7PK5tIxsG63zBTh5jhRQLGwOYIqOC27cS23jLy-MW7JHT/s640/20181027_012339.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Signed by the teachers and staff</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8epheWHc_VLSGz7n16pv7aPOiV6xgUE9Lzxxsy-e5G1OZvFF-aVPzFfhJOFju711azOYzD8rX0oSh_ZsGJYqFT5ElFZVh5DkFdkiiaXBP066XbAZgr3jnf1aveMB7mnAjU9yzyZ5P_E1j/s1600/20181027_082550.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8epheWHc_VLSGz7n16pv7aPOiV6xgUE9Lzxxsy-e5G1OZvFF-aVPzFfhJOFju711azOYzD8rX0oSh_ZsGJYqFT5ElFZVh5DkFdkiiaXBP066XbAZgr3jnf1aveMB7mnAjU9yzyZ5P_E1j/s400/20181027_082550.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not a great picture, I must've deleted my good one (or someone else did!), but this is the banner from the hospital staff.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwy6AoASCmYQbtvQOlayFMtH_5BiECycqL0Sf3_Q0kKLCEf4iQpj1Zz-RqgfbBIm0hzfO7IRaNujDKrVuKDHpYFNELZVJ55NQHyhN9xZNqWu-PlMYb5xi3j3vI2tafi7luqlX9lHj__PyU/s1600/20181027_090003.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwy6AoASCmYQbtvQOlayFMtH_5BiECycqL0Sf3_Q0kKLCEf4iQpj1Zz-RqgfbBIm0hzfO7IRaNujDKrVuKDHpYFNELZVJ55NQHyhN9xZNqWu-PlMYb5xi3j3vI2tafi7luqlX9lHj__PyU/s400/20181027_090003.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The birthday boy with gifts from Child Life. This is after waking up, checking out his birthday banners, getting dressed in his new shirt from Steph, and ordering chicken noodle soup for breakfast!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfYS9MB2PES-nGNOzVeFn7wYmp0FZkcok97QX9kfuYS3z-5gbxzFlEjZ8s_KEQbDiHSUK3GGh-ZxQ2iRtqwRzifaBKXb-uEbvT524RntR_OhxMi-2Qfg9I1uVm1hamNOmBtsTrqeBmSn9c/s1600/20181027_090034.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfYS9MB2PES-nGNOzVeFn7wYmp0FZkcok97QX9kfuYS3z-5gbxzFlEjZ8s_KEQbDiHSUK3GGh-ZxQ2iRtqwRzifaBKXb-uEbvT524RntR_OhxMi-2Qfg9I1uVm1hamNOmBtsTrqeBmSn9c/s400/20181027_090034.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">His nurse took this for us and he rubbed my chin the whole time. After the picture he complained that my chin isn't hairy like Daddy's. Then he didn't understand why I was so happy about that! haha!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU4EXL0QaXVt5BbyHzvyiYRkwwfzg-OWlzsJ4Y0WYU3aQas4ksAVLM-oylO9ryFRfnMsHqulmF1CLwBVYpQxI6HsWDn3DY-Ym3XvZlKwGkXQjgch-wt0PF0_BHEiX7lGgh7QIov7ktraPn/s1600/20181027_111850.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU4EXL0QaXVt5BbyHzvyiYRkwwfzg-OWlzsJ4Y0WYU3aQas4ksAVLM-oylO9ryFRfnMsHqulmF1CLwBVYpQxI6HsWDn3DY-Ym3XvZlKwGkXQjgch-wt0PF0_BHEiX7lGgh7QIov7ktraPn/s400/20181027_111850.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">As we were leaving, the staff at the nurses station sang Happy Birthday to him. Even though he loved it, he got embarrassed and covered his ears. Then Dawn (Bath Dawn) gave him eight kisses on his cheeks and head. Again, he loved it but wouldn't admit it....until we left the hospital when he said it was sweet!</td></tr>
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During the night, he woke a little and asked me to get in bed with him (he always does!). When he woke for the day, he rolled over with his arms around me and sleepily asked "Mommy, how old am I?" I kissed him and said "You're eight today!" He smiled really big and said "YES! It's finally here! I'm really eight now!" It was adorable!<br />
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He had a list of things he wanted to do at the hospital (playroom, wagon ride, air hockey...). The doctor had everything ready to go for his discharge but said she could drag her feet a little if he wanted to get his To Do List completed. Two hours later I convinced him to leave only because I promised lunch with Aunt Ashley and Aunt Ashley (yes, Bryan and I each have sisters named Ashley and both live in Indy!). After lunch we finally started the drive home and got here about 3pm. Zachary, Charlotte, and Bryan had gifts wrapped for him and Z had a game tournament planned for all of us. We spent the next few hours playing board games (Eli won the tournament!) showing off Eli's cards and gifts, and opening his gifts from us. Then he had more cards to open that came after he had left for Indy. For supper the five of us went to Mi Pueblo. We let him have cheese dip and everything. It's hard for us to go out to eat with his fat free diet, but we made a big exception on his birthday and he REALLY enjoyed himself!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5tjXvuFnL_uV52ER9uFWbw2Odn6edFwHN7buWCUyc8uU_KcOECA5oxqcKdFVApCVtfjrKe_JgWeCDV4ALk9m-4IYx-zA05Itn6I9QFhIvAJUWQORehnoxDyKs-hrkPP71CBGW0DwTlnLP/s1600/20181027_165337.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5tjXvuFnL_uV52ER9uFWbw2Odn6edFwHN7buWCUyc8uU_KcOECA5oxqcKdFVApCVtfjrKe_JgWeCDV4ALk9m-4IYx-zA05Itn6I9QFhIvAJUWQORehnoxDyKs-hrkPP71CBGW0DwTlnLP/s400/20181027_165337.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli wants an Ice Age party this year, so here he is after he opened his Ice Age birthday shirt from us.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR4rT4rZcz3Y1W0HZ4rP0CngHrdoLrPijJA8Yand1STOBbghho_xosbfVkj32FoMwgpbh2B0wXY_9_NVB6baeus7Gsw5fg-tp4_IiqKzyXDTpqfH4NP_VWsDiyjq9FyK-PIuzWAE-vYiNp/s1600/20181028_195018.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR4rT4rZcz3Y1W0HZ4rP0CngHrdoLrPijJA8Yand1STOBbghho_xosbfVkj32FoMwgpbh2B0wXY_9_NVB6baeus7Gsw5fg-tp4_IiqKzyXDTpqfH4NP_VWsDiyjq9FyK-PIuzWAE-vYiNp/s400/20181028_195018.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eating his birthday cupcakes from the hospital. There were six in the package and each were different flavors with different icings and decorations. We cut them up and everyone tried bits of different ones. Eli did not like touching them because of all the icing, but obviously he had no problem eating them! His favorite was the lemon :)</td></tr>
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<br />
Thanks to everyone who made it so special! Eli received almost 60 cards! He was very, very happy! And his birthday just continues! He was celebrated at school on Tuesday by his classmates who sang to him. Saturday, he and Daddy are going to a Pacer game! Sunday will be his family party with grandparents, cousins, and aunts & uncles. We didn't do it on the weekend of his birthday since we didn't know for sure how he'd feel after his procedure. <br />
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The paracentesis itself went very well. Normally, only 1.5L of fluid is removed, but this time 2L was taken off. He has much more than that, but when more is taken off he often has blood pressure issues. This time, the decision was made to remove 2L because he's been filling up so much. After the previous two procedures (where 1.5 was removed each time) there wasn't much difference in the size of his belly. It was softer and not as tight as before removing fluid, but still very large. This time after removing 2L, there was a visible difference in size.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAmrMtuNZ40lkj3YP3UXDIK5meWk5qGpQVBi-TTzIoNUa9KL1cz7hgPdkWLFGmspIOnehZOrUXuPkQ12AuuA-wqvNX8sQj_ZPzr4sygSyn6BPknZh6pBwJhiI_zr52HSlaTnqDPS6F4OfJ/s1600/20181026_130746.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAmrMtuNZ40lkj3YP3UXDIK5meWk5qGpQVBi-TTzIoNUa9KL1cz7hgPdkWLFGmspIOnehZOrUXuPkQ12AuuA-wqvNX8sQj_ZPzr4sygSyn6BPknZh6pBwJhiI_zr52HSlaTnqDPS6F4OfJ/s400/20181026_130746.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My handsome seven year old waiting at registration to check in. He kept asking if he was still seven or if he was eight yet!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaATz5hHFVbmS-p_5jsWaoH1HcH5knWttZp24MMmKS1bcfcOU2KcAxTgdPb1o9ntLkPY4MltEqwromOfpex-KRfiOGVbbjswnKsbH1DbpZo6u5qVJEYxPA4JKxOwb1-mGNuYHBziOGWtS5/s1600/20181026_135927.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaATz5hHFVbmS-p_5jsWaoH1HcH5knWttZp24MMmKS1bcfcOU2KcAxTgdPb1o9ntLkPY4MltEqwromOfpex-KRfiOGVbbjswnKsbH1DbpZo6u5qVJEYxPA4JKxOwb1-mGNuYHBziOGWtS5/s400/20181026_135927.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">His sedation nurse is really good at getting his IV started. This time, even though it was in correctly, it was up against a valve and we couldn't get any blood out of his IV for the labs that were needed. She had to start a second IV and this time used a special 'flashlight' to help highlight the veins and valves. It's not a great picture of this, but I thought you might like to see it. It definitely helps.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5AE5ie15TdH1VJeiN0CQ-IxltXpjUUH9pH_VJOgLeEw2x2aip3yMkALed5syzm4fEILBJ4soT-hH2KOcyL6fipjhs6-Wo8WR9mwf9sY7NV5jTQLIHMjCKqtj8aCSzj729bAxGJQiw2was/s1600/20181026_143334.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5AE5ie15TdH1VJeiN0CQ-IxltXpjUUH9pH_VJOgLeEw2x2aip3yMkALed5syzm4fEILBJ4soT-hH2KOcyL6fipjhs6-Wo8WR9mwf9sY7NV5jTQLIHMjCKqtj8aCSzj729bAxGJQiw2was/s400/20181026_143334.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of the canisters of his fluid. Not as clear as we'd like, but it is much better than before his fat free diet!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-NmzBtZphXbi1vrLnFzpbuDs1hrCQ_50rbbQ79DJyHuK_LyTG0uGyQlfi-Dmh3LQk6T0r_kCC6T7FNj6QAbwzRk41F9bWAB0-TpJr3V1Ez_lzP0f5TnoyFSCzFEPcGDM9OfBEZ065bIAc/s1600/2018-10-31_10.59.54.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1080" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-NmzBtZphXbi1vrLnFzpbuDs1hrCQ_50rbbQ79DJyHuK_LyTG0uGyQlfi-Dmh3LQk6T0r_kCC6T7FNj6QAbwzRk41F9bWAB0-TpJr3V1Ez_lzP0f5TnoyFSCzFEPcGDM9OfBEZ065bIAc/s400/2018-10-31_10.59.54.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A good comparison of his stomach before and after the procedure. These were six days apart. What we can't compare in the picture is just how much softer his abdomen is now. Before the fluid was removed, his abdomen was just stretched to the max and so tight. It's beginning to stretch the skin around his feeding tube and cause a lot of irritation around it. </td></tr>
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After the procedure, he was monitored very carefully for blood pressure issues. He always is, but this time more so since more fluid was taken off than he was used to. Fortunately, he did very well. During the night his pressure did drop to 70/30s, but he had other good vital signs and he maintained good perfusion and was warm. So they monitored his BP every hour or so for a while through the night and did not have to do any interventions. Overall, this was probably the best recovery he's had from one of these. Thank you for all the prayers and help!<br />
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He is scheduled for two more paracenteses before Thanksgiving. The next is next Friday, November 9 and then again on Nov 20. Those two won't be two weeks apart, but it works well with how the holiday falls. Hopefully he'll do well with both of them and we'll be home to celebrate Thanksgiving together.<br />
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By the way, we are doing another fundraiser for Eli right now. We are selling gift cards with storage boxes. There are four assortments (two choices of all occasion, one kids birthday assortment, and one is a combination of thank you cards and blank cards). Each assortment is $30 and contains 30 cards and the storage box. These are good, quality cards so this is a great deal. Money raised from this fundraiser will go toward our travel expenses for CHOP and Indianapolis and some medical bills. Orders are due November 6 (money is due at that time also) and will be delivered within a couple weeks. These would also make wonderful Christmas gifts for someone or for a Christmas gift exchange. If you'd like to order please email us at elismvps@yahoo.com, text/call me at 812-617-0589, or send us a message through Eli's MVPs Facebook page.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl9iS2bD3jK_b5PsoVFfcJYwpg3TJn8HTj0lx73TOYU92ShaH5f_QnoUYalThbqNh08Ea_6M65BHqIydklfxXx8yX_ATygZj1A3Sh6H-J7DcCf2xuun4BsLjLeS911Jv9I__M1QtvpNB74/s1600/20181023_094125.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl9iS2bD3jK_b5PsoVFfcJYwpg3TJn8HTj0lx73TOYU92ShaH5f_QnoUYalThbqNh08Ea_6M65BHqIydklfxXx8yX_ATygZj1A3Sh6H-J7DcCf2xuun4BsLjLeS911Jv9I__M1QtvpNB74/s640/20181023_094125.jpg" width="480" /></a></div>
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Speaking of fundraisers, Zachary is selling a couple things also. These help fund his travel baseball team. We are looking forward to a fun season with the 11U Southern Indiana Eagles team. He is selling 2019 St. Louis Cardinals Calendars for $15 (great photos in a 15"x 22" calendar). His other item is candles. $14 for 12oz candles and $16 for 14oz candles. There are a variety of scents and each candle comes gift boxed. Again, these could be great Christmas gifts! If you'd like to purchase a calendar or candle, please contact us via the methods listed above. Thank you so much for considering it!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtGFKDdPxV6_RlpOYhnjNJee0-u3RXMJQvM9oG9_okKN5wTLeasSNjXUFgo0AOm_IVwSBHn5zfVbMdIWkpuEgWi2UAnC3hUJTCts2W2sqc9BUi4YqtVK8gXhAY9Dly_cNtK8DwkeEz4fmf/s1600/20181101_103141.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtGFKDdPxV6_RlpOYhnjNJee0-u3RXMJQvM9oG9_okKN5wTLeasSNjXUFgo0AOm_IVwSBHn5zfVbMdIWkpuEgWi2UAnC3hUJTCts2W2sqc9BUi4YqtVK8gXhAY9Dly_cNtK8DwkeEz4fmf/s400/20181101_103141.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">$15 St. Louis Cardinals 2019 Calendars</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjmi_l-P5jKdEJUBAfOalLfJSubkPstAF4scL-18g09SXpNyU25cSPT5zkzPA7XgQCWvotYaUiTPIaZNM75exE9bG4mKdxj5W-_PX5D53JAwV8jU-56f-pPuQo_LVtB7psFsq6v0CUuOnF/s1600/20181101_103059.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1454" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjmi_l-P5jKdEJUBAfOalLfJSubkPstAF4scL-18g09SXpNyU25cSPT5zkzPA7XgQCWvotYaUiTPIaZNM75exE9bG4mKdxj5W-_PX5D53JAwV8jU-56f-pPuQo_LVtB7psFsq6v0CUuOnF/s400/20181101_103059.jpg" width="362" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">12oz candles are $14</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia4jRv7-KE1djb2oJhlcAAQyM8FrCn2KYEQEtvTTKwjWHlNnfJLfNa0CDpsSgTDe7l9sudDgG7lq1gZVFU4ELxX1x5_Wg5cXZ73Cp2_peVVXtcYmIW80z-N91q17jFRz20MXxN8onLpRLL/s1600/20181101_103030.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1293" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia4jRv7-KE1djb2oJhlcAAQyM8FrCn2KYEQEtvTTKwjWHlNnfJLfNa0CDpsSgTDe7l9sudDgG7lq1gZVFU4ELxX1x5_Wg5cXZ73Cp2_peVVXtcYmIW80z-N91q17jFRz20MXxN8onLpRLL/s400/20181101_103030.jpg" width="322" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">14oz candles are $16</td></tr>
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Believe it or not, I really don't like doing fundraisers. It is so weird to me to ask people to help us like this. But I promise, Eli's fundraiser truly goes for expenses directly related to him. All three things we're selling right now are good items (yes, it's hard for us as a Reds family to say the Cardinals calendar is a good item!). Mostly, we ask for your continued prayers. We are so thankful for those! <br />
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My next post will have an update on Eli's referral to CHOP. I wanted to keep it separate from his birthday post! That will be coming soon. Thanks again! And remember to cherish Every Little Beat....Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-8511896563118471142018-10-06T22:03:00.000-04:002018-10-06T22:20:32.929-04:00Eli and Family UpdateHi, everyone! Here's a quick update of what's going on with the Veales. <br />
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I'll start with <b><span style="color: blue;">Eli</span></b>. Just yesterday we got some news about Eli's referral to Children's Hospital of Philadelphia (CHOP). Our cardiology team received an email from CHOP requesting a conference call with us and Dr. Steinberg (one of Eli's cardiologists in Indianapolis, the one who made the referral). The conference call is set for this coming Friday, October 12.<br />
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In the meantime, we continue to go to PMCH every 2-3 weeks for a paracentesis. His next one is coming up on Tuesday. The kids are on Fall Break next week so instead of a family vacation or anything super exciting, Eli will be hospitalized for a couple days. I'm sure we'll work in some fun things with the kids during their time off as well! This will be his 10th paracentesis since May. Since my last blog update, Eli has stayed relatively stable. He did have a seizure early one Sunday morning in August. It was nothing like the two times he had seizures in the past. This was much shorter, but there's very little doubt it was a seizure. We don't know exactly why he had it though. It could be from all the stress his body is under. One of his cardiologists also said it could possibly be due to his low heart rate. He had been sleeping and if the rate gets low enough it could have caused a seizure. Cardiology had already decided to decrease the dose of one of Eli's meds in hopes it would allow his heart rate to come up a little bit and that has made a difference. Although by decreasing the dose, Eli's heart is more likely to go into SVT again (the extremely fast rate >200/minute). So far he's tolerating that change well along with the increase in his anti seizure medication. <br />
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We've also had a meeting about his IEP (Individual Education Program) at school. Eli is struggling (although I don't think he realizes it). He's always had a shortened spelling list, varied testing methods, and extra help, but adjusting to the increasing requirements is tough. He is very far behind his peers in reading, spelling, and writing. Math is a foreign language to him. He will be tested again by the school psychologists (he was due for it at this age anyway) and we will meet as a group again after that. This will help us determine more specifically what learning disabilities he has and how we can better help him at school and at home with schoolwork. We are lucky to have so many people on his team!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlG79SFKZxq2aBtYE4ZwsV7Tiqya_CCTzqs37mYKFk34ktJQVhnWT8g_B9JaZx6hPl-5uaoWPhzcM72sh-wlAXago22z7C-tihHGECvN9z4P-7owRJmQg1_ich1fFLFqSZOLJ4H9EoJUFw/s1600/20180926_075612.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlG79SFKZxq2aBtYE4ZwsV7Tiqya_CCTzqs37mYKFk34ktJQVhnWT8g_B9JaZx6hPl-5uaoWPhzcM72sh-wlAXago22z7C-tihHGECvN9z4P-7owRJmQg1_ich1fFLFqSZOLJ4H9EoJUFw/s400/20180926_075612.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's as cute as ever!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLY7dS7x1IIl1nMN5X5yRFyxPAhuwR5uxpGBqqF345OTAtwpjyscYrjINyA4TNZeYvr0-sDessVdFW9sHhJwFTDlwCzNCFi9dBvLIDBQBtXOklv8P3m1x8RFUud-CiTGMTwQ_2UFrEom_y/s1600/20180914_135903.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLY7dS7x1IIl1nMN5X5yRFyxPAhuwR5uxpGBqqF345OTAtwpjyscYrjINyA4TNZeYvr0-sDessVdFW9sHhJwFTDlwCzNCFi9dBvLIDBQBtXOklv8P3m1x8RFUud-CiTGMTwQ_2UFrEom_y/s400/20180914_135903.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy and Eli just before paracentesis #9 in mid September</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWzRYXZuPIZFp4ufC4onFc14zVyZHfaJbNCtSCLUvif6PEXr_7zbpsMDTraa3F-eWkdKQtSgLSU9TOq0zYGT_O4w4B2JohP41Jm6EzdO6qVARYr5MusvN7WnaLMxkUTPO-hkGidld7gHUs/s1600/20180927_163225.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWzRYXZuPIZFp4ufC4onFc14zVyZHfaJbNCtSCLUvif6PEXr_7zbpsMDTraa3F-eWkdKQtSgLSU9TOq0zYGT_O4w4B2JohP41Jm6EzdO6qVARYr5MusvN7WnaLMxkUTPO-hkGidld7gHUs/s400/20180927_163225.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary, Eli, and Charlotte in front of the helicopter that Eli rode in back in May. There was an event recently that involved local law enforcement, firefighters, and other first responders. There were two helicopters there and this is the one that Eli flew in. The other one may have been the one he flew in when he was two and had his first seizure. It was nice for him to see those and know he didn't have to get on them. He was shy talking to the pilots but he really did enjoy checking them out. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUR45HFL3llVW8qUzDql__22wjWzHpabUQaqmwApCAFfSxCOHWUrRq4jF_rkAeS4UTyWDEHSRU1l74IAMmQhUdbMxrwefU5fVrjB1dAzcL-8FmDI6C5ywIpEeUw2qTTiVT2hTUKiLZ2UJO/s1600/20180927_221947.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUR45HFL3llVW8qUzDql__22wjWzHpabUQaqmwApCAFfSxCOHWUrRq4jF_rkAeS4UTyWDEHSRU1l74IAMmQhUdbMxrwefU5fVrjB1dAzcL-8FmDI6C5ywIpEeUw2qTTiVT2hTUKiLZ2UJO/s400/20180927_221947.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">These two fight all the time. Truly, All. The. Time. But they love each other as fiercely as they fight. They have to snuggle together most nights. Many times, I have to unwind them from each other to be able to do Eli's tube feeding or nighttime meds. It's adorable!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJjsOVo7vl0x4zY7a2conhYcBFTgjVpJAoteaWc5FNqLcIfB1aOhFfzW6PIIR1r2cwKI7RMtuCDx5jDNmvnsAvWeUj3R2P_yop4l1D0Irs66DoBMkJe0mEXSjW_nS0SxZl7aNVinDUo5uy/s1600/20180803_103603.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1414" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJjsOVo7vl0x4zY7a2conhYcBFTgjVpJAoteaWc5FNqLcIfB1aOhFfzW6PIIR1r2cwKI7RMtuCDx5jDNmvnsAvWeUj3R2P_yop4l1D0Irs66DoBMkJe0mEXSjW_nS0SxZl7aNVinDUo5uy/s400/20180803_103603.jpg" width="352" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our sweet guys walking into school together on the first day</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivA0nO9pC7FRcJiNE9DqjLhjWlKGbrlYpjrJr9s-xDeCnhX-oZstAKr1Fpnw5E2BqzplmLdVuYdphwW1tawJcxGqMnq9VCCutOXE48wXYqM9Pic7ZvRvep-h0BE1Idm3oetgLByyUpifxK/s1600/20180803_145524.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivA0nO9pC7FRcJiNE9DqjLhjWlKGbrlYpjrJr9s-xDeCnhX-oZstAKr1Fpnw5E2BqzplmLdVuYdphwW1tawJcxGqMnq9VCCutOXE48wXYqM9Pic7ZvRvep-h0BE1Idm3oetgLByyUpifxK/s400/20180803_145524.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A group hug after school. Charlotte missed her brothers so much their first day back. They had their group hug and then were fighting before we got home. Typical!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDkFqpAEnPtURpDJSrNGw5pd5aJX6d_dOw3ci-obrw3xpEzgaA1KvZ8OAuicYrXvv0bLrLpDa7toOg4pgYvnvAFitCnznIweCPmDV33GOshAESBlaeZRZo5LbBa7qlghNb5TYk0YZmhOpL/s1600/20180802_155900.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDkFqpAEnPtURpDJSrNGw5pd5aJX6d_dOw3ci-obrw3xpEzgaA1KvZ8OAuicYrXvv0bLrLpDa7toOg4pgYvnvAFitCnznIweCPmDV33GOshAESBlaeZRZo5LbBa7qlghNb5TYk0YZmhOpL/s400/20180802_155900.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli is a big second grader now! This is him with his teacher, Mrs. Elsey. He loves school and enjoys going. Despite his troubles, he is making advancements and learning. We are so lucky to have such a great system with wonderful people who want the best for him.</td></tr>
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<b><span style="color: lime;">Zachary</span></b> has been busy studying after school three days a week in hopes of making the Spell Bowl team. He has a list of 700+ words to study. I had no idea what all goes into preparing for this and it is quite impressive! It takes a lot of dedication from the students and the teachers who lead this. I hope he makes it after all the hard work he's put in. Zachary's birthday was in mid-September. He's eleven now! Standing at 5'7" and 160lbs, he's often assumed to be and treated as much older than eleven. A couple weeks ago he got glasses. It isn't a strong prescription, but the doctor recommended glasses now. We knew last year at his appointment this was a possibility. With the glasses this fall and likely getting braces after the new year, his looks are changing! In addition to Spell Bowl and doing great in school, he is getting ready for elementary basketball and is still working out in preparation for travel baseball. He is a great kid and I love getting to hang out with him. He's very smart, caring, and funny. He still loves dinosaurs and is planning to be a paleontologist when he grows up.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQsH0NmVIqLzbKh1LPsZa0z7lTqzplYddqp9vw2TcxSm0t5-A5QyHzzb24R4DZGkr31cT6oWHc4NtGTHGh3H66HaXERDRPmEJoqUhttyFHEo_FWGtGvexNHic-B0UON614PYIij30GdKlw/s1600/20180926_075616.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQsH0NmVIqLzbKh1LPsZa0z7lTqzplYddqp9vw2TcxSm0t5-A5QyHzzb24R4DZGkr31cT6oWHc4NtGTHGh3H66HaXERDRPmEJoqUhttyFHEo_FWGtGvexNHic-B0UON614PYIij30GdKlw/s400/20180926_075616.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary in his new glasses and all dressed up for Dress for Success Day at school</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHQAah7tQI8vG0OgCEBbYcuQZNe9yzkRDKq6pujwdH9-StGwTffJwxTWv-Rzs05nMz1jnVDwWHl5QRVAguK6v7JngwM-5BpE6sAVNk-CbhkuPEeAUkHJTjjcy7nBsFVGVVlLwMX9-z8Viw/s1600/20180916_155052.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHQAah7tQI8vG0OgCEBbYcuQZNe9yzkRDKq6pujwdH9-StGwTffJwxTWv-Rzs05nMz1jnVDwWHl5QRVAguK6v7JngwM-5BpE6sAVNk-CbhkuPEeAUkHJTjjcy7nBsFVGVVlLwMX9-z8Viw/s400/20180916_155052.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family picture in front of the Jurassic World photo scene for Zachary's birthday</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7o24fn_5eldI71UQmRdiuPfoBq6kmsKhz6I4wBVV-NQjdJnqCd8PfLhCHYWqsx-TMzmmEBOahhr0RdRuMMozXQqtXlXG-Qep1DP_mdkCfo_SONK-DdAdpxXPwucUxqYIeRiz5k-q6zTx6/s1600/20180802_185534.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7o24fn_5eldI71UQmRdiuPfoBq6kmsKhz6I4wBVV-NQjdJnqCd8PfLhCHYWqsx-TMzmmEBOahhr0RdRuMMozXQqtXlXG-Qep1DP_mdkCfo_SONK-DdAdpxXPwucUxqYIeRiz5k-q6zTx6/s400/20180802_185534.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary with his homeroom teacher for fifth grade. Yes, she is wearing heels and he is still taller than her.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirnd61VLTvstuyU1ToeIWXgUqY3ForQ9P4JNmZj8qyqO5zzILyM2RrxfR8FYXPAZf6G0Sb1SSfzAwYwkBoZ55Ea7SBoO0f0QeWXQhXGVPIeKT9V7LugHWJUhpeq4fR5OzViIk4uSTW4Egi/s1600/20180803_075243.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirnd61VLTvstuyU1ToeIWXgUqY3ForQ9P4JNmZj8qyqO5zzILyM2RrxfR8FYXPAZf6G0Sb1SSfzAwYwkBoZ55Ea7SBoO0f0QeWXQhXGVPIeKT9V7LugHWJUhpeq4fR5OzViIk4uSTW4Egi/s400/20180803_075243.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First day of fifth grade and second grade. Eli was happy about going to school, just not about having his picture taken.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAjhjVFmU2iLRQlbPzDG6YaiQjzkkrqwJPYn5n8gqUTF2OSOcfdifhw8Zwjc-iFDjhWJXuP3gnRrZrFeAmeXpTysUPz0Wv4PYOc0oM5snidx4NI8H2b5hzI8yHc9utt9D_RCKHo1JABleX/s1600/20180803_075951.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAjhjVFmU2iLRQlbPzDG6YaiQjzkkrqwJPYn5n8gqUTF2OSOcfdifhw8Zwjc-iFDjhWJXuP3gnRrZrFeAmeXpTysUPz0Wv4PYOc0oM5snidx4NI8H2b5hzI8yHc9utt9D_RCKHo1JABleX/s400/20180803_075951.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was in a much better mood and asked to have his picture taken outside school. Love my boys and their matching shirts!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtDJXMEM09rfHW006QYTHA9fzrSvYZLFlOIcD_fQIC1QQeoamTvbGanlOdkgAMfN2pj4uEEnggJHXFIPn5jcuGpIlzcY9EbINsk9U3h9JoH3fzfeIVkgQyPopm6L9WQ_iWXwar6eliwvGM/s1600/20181006_181610.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtDJXMEM09rfHW006QYTHA9fzrSvYZLFlOIcD_fQIC1QQeoamTvbGanlOdkgAMfN2pj4uEEnggJHXFIPn5jcuGpIlzcY9EbINsk9U3h9JoH3fzfeIVkgQyPopm6L9WQ_iWXwar6eliwvGM/s400/20181006_181610.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary came to me and Bryan this afternoon asking what we wanted for supper. He said he was cooking for us since I didn't feel well and Bryan had been busy. He made baked chicken, macaroni and cheese, and biscuits. All of this is within Eli's fat free diet too. He did it all himself and it was very good. He also made pink lemonade. Such a sweet kid!</td></tr>
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<b><span style="color: purple;">Charlotte</span></b> has started preschool. In fact, picture day was this week. She is loving school. She was very reluctant at first, saying she didn't want to go to her preschool but wanted to go to the same school her brothers go to. She sees them walking in and out of their elementary together every day so it just made sense to her that she should go there too! She had her first day and did fine. Some nerves, but no tears. When she came out, she ran straight into my arms with a big smile on her face and lots of great things to say about her morning. After she was done talking I asked her if she had fun and she said yes! I asked if she was excited to go back and with a smile on her face she immediately replied "No. Never going back to preschool. Never, ever, ever." She did go back and so far has not missed a day. She loves it and it is so good to see her getting to play with kids her own age. It's bittersweet to see my baby transitioning from being a baby, to a toddler, to a preschooler, but it is so good to see her flourish. She's also started a baseball class for kids age 3 & 4. She's had two classes so far and loves it. We're thinking of enrolling her in dance class because she is ALWAYS dancing around the house. Dance class is new territory for us! When we asked her she said she doesn't want to do it, but she also didn't want to do baseball or go back to preschool.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiH4WvgdcCNnI4_wExPYm7gLl_cQFtolKLHEkK3OXzow9lxeqVPszwp-68t_K3ExLvKH0IKUmVEXMv2wKtDk00UVoe8yiFs2T34TOBHcz5AKK6bK7PHfRvCa5MlMQAvXuycesxFCAbu-3_/s1600/20180814_081835.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiH4WvgdcCNnI4_wExPYm7gLl_cQFtolKLHEkK3OXzow9lxeqVPszwp-68t_K3ExLvKH0IKUmVEXMv2wKtDk00UVoe8yiFs2T34TOBHcz5AKK6bK7PHfRvCa5MlMQAvXuycesxFCAbu-3_/s400/20180814_081835.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our baby is growing up!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGEcVoPv3jZbGVzotUzWbnHL3-gdsoz9X9uXML0TdtWhmffx6oPrmDMwV2dxkuGHZ7qwql5_EYJEmFCOIcxV_tlSPRzYf4jXI1qYNNuQ0XfzpYiw5MqBYwonD-PCnZrYcNXCmt_ogpdJtQ/s1600/20180807_113227.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGEcVoPv3jZbGVzotUzWbnHL3-gdsoz9X9uXML0TdtWhmffx6oPrmDMwV2dxkuGHZ7qwql5_EYJEmFCOIcxV_tlSPRzYf4jXI1qYNNuQ0XfzpYiw5MqBYwonD-PCnZrYcNXCmt_ogpdJtQ/s400/20180807_113227.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A rare occasion of them awake and not fighting. They took turns walking on the ledge and always held hands so they could help each other. When they get along it is amazing, sweet, and beautiful....but when they don't it's loud, rude, and exhausting!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ61ZjcdNKzDrU91AOkQdhDjsG_ed9iU8Iu2KyY8YCWNQxg1-Zpj0k7q9KkYaGWlfiC1QZdXTR-xyT0WVG5nZTV6BgwZX-UGfkCxv70BrhRhbmUgJhcqVnCazAo2wWhxz_GufkTx42QBRm/s1600/20180928_180442.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ61ZjcdNKzDrU91AOkQdhDjsG_ed9iU8Iu2KyY8YCWNQxg1-Zpj0k7q9KkYaGWlfiC1QZdXTR-xyT0WVG5nZTV6BgwZX-UGfkCxv70BrhRhbmUgJhcqVnCazAo2wWhxz_GufkTx42QBRm/s400/20180928_180442.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At her first baseball practice. This drill had them pointing with their glove where they wanted to throw the ball. She did pretty well!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjikIzvIHOZbdK-8dTHmCtDrexsRSpZ_J1VY2QyqbjKILz_8Pkd0p9bZm0pt_N3EArnshcuVRDzcY7_9z9QwKwLhS8qTxreV1x27bK-6Bd2ytZREjI8REHpH3y044fmapTURGFNQC86prtD/s1600/20181004_081925.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjikIzvIHOZbdK-8dTHmCtDrexsRSpZ_J1VY2QyqbjKILz_8Pkd0p9bZm0pt_N3EArnshcuVRDzcY7_9z9QwKwLhS8qTxreV1x27bK-6Bd2ytZREjI8REHpH3y044fmapTURGFNQC86prtD/s400/20181004_081925.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being silly on Picture Day at preschool!</td></tr>
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Speaking of transitions, we had a big one over the summer. Charlotte was not too into potty training. She liked wearing a diaper, didn't like the toilet, and really didn't care if she was potty trained. Over the summer we told her to go to school she had to wear underwear and put all her pee pees in the potty. She's a pretty smart little thing and once she was consistently going in the potty she refused to wear underwear & wanted her diapers back. After questioning her, she simply said "I want my diapers now and save my underwear for school." (sigh) Anyway, that's all straightened out now and she has been fully potty trained since mid-summer. So for the first time in almost 11 years....we are a diaper free house!!!! Hopefully we can stay that way for a few more years before Bryan or I need them. It blows my mind a little to think I've only had a handful of days in the last eleven years that I didn't change a diaper. I'm slowly making the transition from carrying a diaper bag to carrying a purse. I still carry wipes because, well because we'll probably never stop needing those! I also usually carry some equipment to assess Eli if we need to (stethoscope, blood pressure cuff, pulse ox monitor, and bandaids because the boy has a serious picking problem). But it's not a diaper bag!<br />
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I think that's most of what's been happening with the kids. Bryan and I are busy as usual as we keep up with their schedules, homework, and make lots of good memories! Bryan has been busy taking care of me the last couple days I've recently had a flare up of my eye issues (inflammation of the iris and fluids within the eye). Bryan took me to my ophthalmologist yesterday and I got a steroid injection inside my lower lid. I've had many of those before and although they're not fun, they do help. Today I feel better, but still have a lot of vision disturbances and headache. I'll keep taking my steroid drops multiple times a day, keep my eye dilated, and go back in two weeks. Hopefully then I can be well enough to start tapering off my meds. <span style="background-color: transparent; color: black; display: inline; float: none; font-family: "times new roman"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">This is nothing new to me, I've dealt with this condition for over 20 years and probably had 10 injections in each eye over the years, but each flare up reminds me how precious vision is.</span><br />
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I do have a list of <span style="color: red;">prayer requests</span>:<br />
- that Eli's procedure Tuesday goes well. If you can, please wear your Eli shirts and/or bracelets on Tuesday October 9.<br />
- that we get good information from our phone conference with CHOP next week<br />
- we've accepted an offer on the old house so PLEASE pray that it goes through. We need the buyer's financing and all the inspections and appraisals to happen without much trouble because we would love to have this stress off our minds<br />
- for my eye to get better. <br />
- for us to handle everything going on<br />
- that all of you know how much we appreciate every bit of prayer, support, encouragement, and love we've received from all of you. It helps us more than you can imagine!<br />
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Thank you all for reading and keeping up with our craziness! There are a few more pictures at the end of this post. They are from the fundraiser that was had for Eli at the start of the school year. Several teachers at the boys' school worked really hard to put together a concession stand, pool party, and raffle. It was an amazing evening. Eli said several times "Are all these people here for me?" Physically seeing the support we have was overwhelming for him and us. Thank you to everyone who organized, worked, and donated to this event. About $2500 was raised for Eli's expenses! We were shocked! Again, thank you!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0akUBzE9VplPfXa3S7sB4mvHFTaEXFibwzwFa190fq0Yk_QJGlIYproiFR00BVIwG3bn7HOTxADKW4uvlueJurHhKx5B4rB1mA2BUY1CqPnjcm9te17uAgNkcYrw5Z_zktai_B-NpuUVl/s1600/20180803_190206.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0akUBzE9VplPfXa3S7sB4mvHFTaEXFibwzwFa190fq0Yk_QJGlIYproiFR00BVIwG3bn7HOTxADKW4uvlueJurHhKx5B4rB1mA2BUY1CqPnjcm9te17uAgNkcYrw5Z_zktai_B-NpuUVl/s400/20180803_190206.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What was on the sidewalk outside the concession area</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBJc16ei7sv3Kc6oUm00Y6k6CMry2M-MmZ7036y9wuSgmocOu6Mrj-6Sq92GaK7duoGxcDdEXpA10guzgCFpWwCFWrwB1dTq5kvOUW6urmSV4s90PA7opNwmIfPf-sDwXbI74rBueB85jA/s1600/20180803_180454.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBJc16ei7sv3Kc6oUm00Y6k6CMry2M-MmZ7036y9wuSgmocOu6Mrj-6Sq92GaK7duoGxcDdEXpA10guzgCFpWwCFWrwB1dTq5kvOUW6urmSV4s90PA7opNwmIfPf-sDwXbI74rBueB85jA/s400/20180803_180454.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary and Eli working concessions as Charlotte tries to decide what to order</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdOgqpyBPD-z24yAwQ2yo4cFXkBaRP2tVXRiDtWLa7ruipbgTHWKIj8SLzY9Ps0V_8mv52Ju3Twb0_IcBf2-9c9gEmXdgsl1ZFGVYlMlUQlWqWFi8Ai7Icnk_DBhCQaLF218q8LEB_m33u/s1600/20180803_190214.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdOgqpyBPD-z24yAwQ2yo4cFXkBaRP2tVXRiDtWLa7ruipbgTHWKIj8SLzY9Ps0V_8mv52Ju3Twb0_IcBf2-9c9gEmXdgsl1ZFGVYlMlUQlWqWFi8Ai7Icnk_DBhCQaLF218q8LEB_m33u/s400/20180803_190214.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of the people enjoying hot dogs or walking tacos</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMBL4qCdH7AzCNKOq2rkgHoLy31xOuDi1D98Y8T7_HeU5dHljPt40HCFF9h4x_g1XWJP_EFI-4g2W2dlFnpWN8-pRI5AMp8JEPQvsWgcn8rnVaMTEFXeSTZULg2VKVlOG_iaD0pgiVEBfD/s1600/20180803_180433.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMBL4qCdH7AzCNKOq2rkgHoLy31xOuDi1D98Y8T7_HeU5dHljPt40HCFF9h4x_g1XWJP_EFI-4g2W2dlFnpWN8-pRI5AMp8JEPQvsWgcn8rnVaMTEFXeSTZULg2VKVlOG_iaD0pgiVEBfD/s400/20180803_180433.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary LOVED working the concession stand</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0BJKIJxZYSn-qTwU4EjsO7Hp5-Vs_9PtnC8MqGTBxTp5_sZFhTn9TQ7Za3Wd30eZs0Y0dSLkYtBCSeIlE5biqNFuXWLpmw3UgLNfbZnoJzLIBZPvmxsbfPewCNMZ5Dx25dF9zDj96bdzj/s1600/20180803_190404.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0BJKIJxZYSn-qTwU4EjsO7Hp5-Vs_9PtnC8MqGTBxTp5_sZFhTn9TQ7Za3Wd30eZs0Y0dSLkYtBCSeIlE5biqNFuXWLpmw3UgLNfbZnoJzLIBZPvmxsbfPewCNMZ5Dx25dF9zDj96bdzj/s400/20180803_190404.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of the family who came to the fundraiser</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhStQLlwriUiQc3MJrRItKsYhs7R4lAn68efQTqkBLiRo9GMMdmD9BcPFFjQKJsJeGpltpBlQvFX3soTBvkIfGKUlsADeeBjqQbrqld1RxxXM7xWrj3K75NKDiEDMG_oKwh41MglIn4L7vu/s1600/20180803_195910.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhStQLlwriUiQc3MJrRItKsYhs7R4lAn68efQTqkBLiRo9GMMdmD9BcPFFjQKJsJeGpltpBlQvFX3soTBvkIfGKUlsADeeBjqQbrqld1RxxXM7xWrj3K75NKDiEDMG_oKwh41MglIn4L7vu/s400/20180803_195910.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The guest of honor exiting the pool after having played for a long time!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho3PlnBwDD8SZbrnMcXutqcKj7-8k1N7fVsGxGn-RCpNNTQfDkk6OiXrnBIK8NNcyGOeg8JxYxaHpBGTANcppPfwNpL_WqK10WXFtk59L2mg8jRQV1-oNaINF4NKDKGX4WBJQ2Du_LTs4L/s1600/20180803_200159.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho3PlnBwDD8SZbrnMcXutqcKj7-8k1N7fVsGxGn-RCpNNTQfDkk6OiXrnBIK8NNcyGOeg8JxYxaHpBGTANcppPfwNpL_WqK10WXFtk59L2mg8jRQV1-oNaINF4NKDKGX4WBJQ2Du_LTs4L/s400/20180803_200159.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charlotte loved the slide!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBcuc-saXtnnmjLHE7qg88t00AIbwzJLL2o6hRH1v7CfSFGDGMsTCt2K0-NzuJEduX7wf7bJNOihqgY_H0rOzorX6nncCdNIrNb1vrKdES9S_0mc8JYlGNmAnBSI_OI2UojpHB16w7RSUM/s1600/20180803_180205.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBcuc-saXtnnmjLHE7qg88t00AIbwzJLL2o6hRH1v7CfSFGDGMsTCt2K0-NzuJEduX7wf7bJNOihqgY_H0rOzorX6nncCdNIrNb1vrKdES9S_0mc8JYlGNmAnBSI_OI2UojpHB16w7RSUM/s400/20180803_180205.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">They had Eli autograph a baseball and it was raffled off. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO3YdIGnxshKTjZGT6RvvhjBdx87IVloAvW7QBvIhr9XbOk7HbEMzASeO58jT8m5rQjvNyG9RFhGPLvynix71epeiAtDOqJGm5W3YAZ778bJmZhkdx0cOQvTJkOZXWiueMCTcIQ76AggKh/s1600/20180803_202645.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO3YdIGnxshKTjZGT6RvvhjBdx87IVloAvW7QBvIhr9XbOk7HbEMzASeO58jT8m5rQjvNyG9RFhGPLvynix71epeiAtDOqJGm5W3YAZ778bJmZhkdx0cOQvTJkOZXWiueMCTcIQ76AggKh/s400/20180803_202645.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mamaw Linda won the autographed baseball! What's so funny about it, is she didn't buy the ticket. Our realtor was there and he put Linda's name on the tickets he bought for the baseball. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFKpsd4Ad_CVh2OvhUXjAidOYrQ1YXx7GXhXN0TZtSHwWrBaI0E6aSi3X7X0X3Lkp9EMQ9nfHFBs1hFCrJmnxv8lBtC-GV7TSdApGUQ3Yu_zumplM0qMlA9qjLEilLacs9RjT1jIUD9ZNy/s1600/20180803_202602.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFKpsd4Ad_CVh2OvhUXjAidOYrQ1YXx7GXhXN0TZtSHwWrBaI0E6aSi3X7X0X3Lkp9EMQ9nfHFBs1hFCrJmnxv8lBtC-GV7TSdApGUQ3Yu_zumplM0qMlA9qjLEilLacs9RjT1jIUD9ZNy/s400/20180803_202602.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A family photo at the end of the night. We were all wet, tired, and so happy!</td></tr>
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<br />Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-20644430858839925542018-07-02T16:31:00.001-04:002018-07-02T16:31:28.544-04:00We Owe his Liver an ApologyOn Tuesday, June 26, Eli and I left for Indy about 4am. He had to be checked in really early for a paracentesis. Off topic, but that day was our 19th wedding anniversary (awwww!)<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieBhuUey7tG1Y-uYF7eYJiK0s3F8JsDhQ3RzRm8goaX5OwYukDECcSwiilHCnva6jL8NxBND5GPOJfeJpt4Ld8Rem43EMHaKqMG3zTrJAhbJyfQ2BsNeDCVTuMdGU9hTOmOBTNr53wLSyK/s1600/Wedding+Day+1999.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="758" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieBhuUey7tG1Y-uYF7eYJiK0s3F8JsDhQ3RzRm8goaX5OwYukDECcSwiilHCnva6jL8NxBND5GPOJfeJpt4Ld8Rem43EMHaKqMG3zTrJAhbJyfQ2BsNeDCVTuMdGU9hTOmOBTNr53wLSyK/s400/Wedding+Day+1999.jpg" width="315" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We were so young! Happy Anniversary!</td></tr>
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So we arrive and check in. He did great getting the IV started and we went to the procedure room. He was given Ketamine for sedation and they got started. Because we don't want to remove a lot of fluid at once and risk throwing his blood pressure off, the doctor only wanted to remove 2 liters from Eli. That was easily done and he was stable throughout. He was transported up to the third floor (our home at PMCH) and got settled in his room, all by 8am. Eli did great and was slowly coming out of his sedation trance. Soon he was asking for food and drink, then was up playing. His blood pressures were great all day long. Overall, he was doing wonderfully. So well, in fact, that by late afternoon, the doctors said he could go home instead of spending the night which was our original plan. So the suitcase went back to the van, the IV came out, and we were waiting for discharge paperwork. Then the GI doc came in. Plans had changed. All because of a picture I took while Eli was getting his paracentesis done. I took a picture of the fluid that was drained out of him. It didn't look like it should (should be clear, kind of yellow). Eli's looked like a thick, tan formula was poured into the container (there's a picture at the end of this post if anyone is curious what it looked like). No one had mentioned that it looked that way before. No tests were ordered on this drainage since it was his fourth in a six weeks. When we got up to his room, I started asking questions about the fluid color and consistency from his previous paracentesis procedures. It did not look like that. My picture circulated from the Infectious Disease and Cardiac NPs, to one of Eli's cardiac doctors, to his GI doctor. They all thought the same thing: chylous (I'll explain more about that further down).<br />
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Because no samples were taken, everyone agreed Eli needed another paracentesis to obtain a sample so they can confirm. So Eli was scheduled for a paracentesis the next day. We were not going home, but that was okay because we had originally planned to stay the night anyway. Knowing there's a specific diet that goes with the diagnosis of chylous, I asked the GI doc if he had any dietary restrictions for supper that night because his aunts were coming and brining food. She looked at him as he absorbed the news that he was not going home until the next day at the earliest, knowing he'd have to have another IV and more sedation. She looked right at me and said he could have whatever he wanted that night! So he ordered a Happy Meal...then proceeded to eat not only that, but half of my sister's Quarter Pounder as well! His aunts also taught him a new trick with his French fries: <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8wEL2vKWWy-MtIeqqPdAc_RpIb8tShVxH6f3OtIPf6VpPJyeyIusR_5MiW5wdBXuFBawOILWkFQUyqwh4BBalgC5ybaNiAaAWde-X-tXzCZlvjnyoo_eH6-1F-QBO596GHQKtzBuKOEMN/s1600/20180626_203328.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8wEL2vKWWy-MtIeqqPdAc_RpIb8tShVxH6f3OtIPf6VpPJyeyIusR_5MiW5wdBXuFBawOILWkFQUyqwh4BBalgC5ybaNiAaAWde-X-tXzCZlvjnyoo_eH6-1F-QBO596GHQKtzBuKOEMN/s400/20180626_203328.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sticking a French fry out of the hole left by his latest lost tooth! Goofy kid!</td></tr>
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The next day Eli was busy all morning in the playroom. First they had play doh time. He mixed play doh and glitter and used hospital equipment {medicine cups, oral syringes, emesis (puke) buckets} to play with the play doh. He had a blast. Then the Civic Theatre came for interactive storytime. He really enjoyed that as well. It helped pass the time until 12:30 when he went for the paracentesis. He got another IV started and did great again with the sedation medication. The doctor drew off a large syringe to be sent to the lab. Then he drew more fluid off Eli. His blood pressure was dropping some so the sedation nurse said it was time to stop. Another 1.8 liters was off his belly. When we left the procedure room Eli's BP was 90/40. It was taken as soon as he got back in his room which was less than five minutes later. In those few minutes it had dropped to 70/32. Fluids were immediately started. Fluids were going, but they had not had time to bump his pressure up and he dropped as low as 40/20 before coming back up. Of course I was concerned, but I really wasn't worried. He had just had 4 liters of fluid taken off in just over 24 hours, it made sense that his body was redistributing and adjusting to not having the extra pressure of fluid on his belly. As his blood pressure was going down, the sedation nurse practitioner, her nurse, the unit nurse practitioner, the hospitalist, and Eli's nurse were all present. We just had to keep monitoring him and wait for the IV fluids to do their job. And they did. Soon he was back up to 80s/40s where he stayed most of the evening. He woke up well from the sedation and was ready to eat. The art cart came by and Eli received a bunch of new goodies (colorworks pens and book, glitter glue, a sketch pad, colored pencils, and modeling clay). Soon after he was visited by the book cart and selected two sticker activity books. We didn't have any visitors Wednesday night which was fine with me. I was exhausted and wanted to get him to sleep early so I could sleep. There was a real chance we were going home the next day. We did wind up getting discharged, but it was late afternoon when we left. Throughout the day, his blood pressures were hanging out in the 80s/40s. He was very active, playing, eating well, being silly, but his numbers were lower than his normal. They came up some in the afternoon and cardiology cleared him for discharge. In hindsight, I realize his medication schedule in the hospital was different than the one we use at home and the way some of his meds were given affected his BP. Now we know better for next time!<br />
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Now for some questions:<br />
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<b><u>What is chylous?</u></b> <br />
Chyle (pronounced like the name Kyle) is something we all have in our lymphatic system. It is a milky bodily fluid consisting of lymph and fats. The lymphatic system carries the fluid to our veins where it returns to the bloodstream. This fluid helps with immune function and fat and protein transport. <br />
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<b><u>Why is it in Eli's abdomen?</u></b> <br />
Apparently there is a leak in Eli's lymphatic system. It is draining chyle in his abdominal cavity which then must be drained off every so often. <br />
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<b><u>What do we do about it?</u></b><br />
Immediately what we do is test the fluid and wait for confirmation that the fluid drained off his belly is chyle. We also start Eli on a fat free diet. Yes, fat free. Not low fat, not low saturated fat, NO FAT diet. He is allowed 3-5 grams of fat per day. That is not much. The goal with the fat free diet is to slow the leak down so he doesn't have to have a paracentesis as often. <br />
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The next step is to consult with a doctor who specializes in surgical repair of the lymphatic system. That is not a common specialty. No one at PMCH does that. We are waiting for a referral to one of the top children's hospitals in the nation. Eli will be referred to Children's Hospital of Philadelphia. We don't know how long it will take to gather his pertinent records or for the team at CHOP to review them. We don't know if we will be going in the next couple weeks or if it will be a month or two. We don't know how long we will be there when we do go. All that will be figured out soon. Bryan and I haven't talked a lot about what we'll do. All we've decided is that we will opt to drive rather than fly. Having our own vehicle while there and not worrying about having to change flight plans due to a change in discharge will be much easier. I have several heart momma friends on FB whose kids have been treated there so I will be reaching out to them for guidance. I also have an aunt and uncle who live close to Philadelphia so I can reach out to them for support as needed when we are there. <br />
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From looking at CHOP's webpage, I have gained a little knowledge of what they may do for Eli. Of course each case is different and we all know Eli's body does things its own way, but to have a general idea is helpful to me. It looks like the procedures they do to repair a leak in the lymphatic system are interventional procedures, which means they aren't big huge operations. That is comforting. It also looks like (again, in most cases!) the long-term outlook is good. I'll type exactly what the website has in that section:<br />
<blockquote class="tr_bq">
"The long-term outlook for many patients with chylothorax is very good. Nearly all patients with thoracic duct trauma can be cured. Experts at CHOP have also seen encouraging results when treating patients with other types of chylothorax. Treatment often provides a long-term cure."</blockquote>
***clarification: Eli does not technically have chylothorax which is the accumulation of chyle in the chest cavity, but from what I've read, the accumulation in the abdominal cavity is treated the same. The accumulation of lymph can be in the chest, abdomen, or other body cavities. <br />
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<b><u>What caused the leak?</u></b><br />
We don't know. It's most likely a leak of his thoracic duct (the main lymph vessel). That can happen because of an injury to the thoracic duct (such as being nicked during a surgery), congenital abnormalities (meaning the patient was born with issues of the thoracic duct), or excessively high venous pressures due to heart failure, pulmonary hypertension, or congenital heart surgery. <br />
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<b><u>Hasn't he dealt with this before?</u></b><br />
Actually, yes. Eli had chylothorax after his third heart surgery, the Fontan. He had several pleural effusions (pockets of fluid) in the lining of his chest wall and the fluid drained off had chyle in it. It was treated with a very low fat diet and time. It's not unusual to have it happen after heart surgery, especially in a young child. There are many, many vessels in a very small space. He recovered from that and did well. We have no idea if the two are related. The fluid drained off Eli's abdomen last month wasn't the same appearance as what it is now. Many tests were run and I'm pretty sure they tested for fats in it. If it were positive, his treatment would have been different a month ago.<br />
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<b><u>What about his liver?</u></b><br />
Apparently Eli's liver is not the criminal we were making it out to be. His liver does have some damage. He does have liver congestion and some fibrosis, but they are not believed to be the cause of all this fluid. Even when we blamed the liver for it last month, it kind of made sense, but there were still holes in that theory. Too many of Eli's other test results were normal for it to solely be the liver. Chylous makes more sense on many levels.<br />
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<b><u>How much fun is a no fat diet?</u></b><br />
Well, it's not horrible! Like I said before, the no fat diet is to slow down the leak, it will not stop it. Eli is also on a different formula for his nighttime feeds. That way he can get enough calories without the fat. Overall, Eli has been adjusting well to the diet. We're all trying to follow it with him, but we need to make sure we still get our fats, especially Zachary and Charlotte as they need them for healthy growth. We've scoured our local grocery store and two local Walmarts for options. We have a lot of turkey and chicken. Since we can't use any oils or butter for cooking, I've used chicken stock a lot. There are many things fat free that I didn't realize and chicken stock is one of them. Last night we had grilled turkey cutlets with bbq sauce for dip, mashed potatoes made with chicken stock and skim milk, gravy, sautéed zucchini, mushrooms, cabbage, and brussels sprouts (sautéed with chicken stock, salt and pepper), and corn on the cob. The bbq sauce and gravy were the normal ones we use and they're both fat free. Snacks have been hard. He loves salsa, but we couldn't find a fat free chip for it. There were many 'low fat' options, but those still had 5-10 grams per serving which is two or three days of his allowed amount! We found some soft tortilla shells that are 0.5g each. After going in the toaster for a few minutes they're crunchy like chips and he is happy with them! He also eats carrot sticks or fat free pretzels with his salsa. We're working on more recipes and snack options for him, but we've done well so far. Did you know you can make a pretty good potato chip in the microwave? Thinly slice a potato, season it, and put it in the microwave on parchment paper for 6 minutes. We've all liked those! So thank you to all you sweet people who have recently sent us gift cards for Walmart! I just used those to buy a lot of fat free items to get us started on this journey. Please know your generosity went directly to providing something that would've been an expensive hit to our budget and is necessary for Eli. Thank you!<br />
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<b><u>What about his pacemaker?</u></b><br />
Well, it's cancelled..... Priorities, you know? This lymphatic problem has to be resolved before proceeding with the pacemaker so it's on hold indefinitely. And once it's back on the horizon, the cardiac schedulers get to schedule it for a fourth time. I hate that for them! But it is what it is. <br />
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So that's where we are now. It will take some time for Eli's records to be sent to CHOP and for them to be reviewed. In the meantime, we keep an eye on his belly and watch for more fluid to accumulate. It's fully expected that he will need another paracentesis (or two?) before we get to Philly. He's still on five doses of diuretics each day, so there are a lot of bathroom trips. Meal prep takes more time these days because of dietary restrictions, Every day he gets weighed, his belly measured, and his blood pressure taken. Not to mention all the phone calls to and from providers about his status, keeping meds refilled, and having follow up appointments. He is a busy kid who keeps us very busy as well! But he is worth all of it! Thank you for all the prayers and support. We will update as we can with new information.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2YONFnvsL2UNAvZIQbh9bdMoe4ofzly1c9FVHUV4JbfhIlHfvs7VkNx9acRSbIVmbheZR9vGMvKI1P9SRv4yKW540-9AxDdGmU3K5WKhg67LxnWGYGuwC-V2wy0XAfIGrXSP4cTDcVRrP/s1600/20180626_074852.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2YONFnvsL2UNAvZIQbh9bdMoe4ofzly1c9FVHUV4JbfhIlHfvs7VkNx9acRSbIVmbheZR9vGMvKI1P9SRv4yKW540-9AxDdGmU3K5WKhg67LxnWGYGuwC-V2wy0XAfIGrXSP4cTDcVRrP/s400/20180626_074852.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">During the paracentesis on Tuesday. His buddy Pablo right there with him as always.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGCgq48eDcBAhW0K1UbkAWh470gZPkQU_sq7v1TCNGrkwYqXB-deIlWfJ-7FqyLSNHVeSbhrI1xJjXy9q898tmTgLaASBLU_enLCYI2am9Nh-IIG2vxRlhcCi3C2UthAtS3I90ERjNKAzl/s1600/20180626_122034.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGCgq48eDcBAhW0K1UbkAWh470gZPkQU_sq7v1TCNGrkwYqXB-deIlWfJ-7FqyLSNHVeSbhrI1xJjXy9q898tmTgLaASBLU_enLCYI2am9Nh-IIG2vxRlhcCi3C2UthAtS3I90ERjNKAzl/s400/20180626_122034.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The playroom has a new touch screen game table since we were there last month. Eli enjoyed many of the games offered on this. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUy5q9MkY0Vmyec9apOyzxT41KWZCMfy15yVCJ1BFhafGgW6upnV1R5dALnCODxQsxvf3sD196D3G4epm3HhWIF9moIounIfEwCaWgKumYwRSH_B8ME2kxvvdvDwZ40FcfnoDZUf5UY_YI/s1600/20180626_163858.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUy5q9MkY0Vmyec9apOyzxT41KWZCMfy15yVCJ1BFhafGgW6upnV1R5dALnCODxQsxvf3sD196D3G4epm3HhWIF9moIounIfEwCaWgKumYwRSH_B8ME2kxvvdvDwZ40FcfnoDZUf5UY_YI/s400/20180626_163858.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli took this picture (and many others) of his dinosaur themed room.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjyg7qhGPP0OE5P5PNm32oD-mb0PkOrBwDDc0Y7PeSNvnczcWW1b1n4ouzc2yLVbNbkjtQVAsKK0vYrUSkfWY3UNUxVxdVo1F_qZ5-ezZhzXq9qm8Fest4y91_Ef8-9ePk_p-Vi1QWEcR1/s1600/20180627_140644.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjyg7qhGPP0OE5P5PNm32oD-mb0PkOrBwDDc0Y7PeSNvnczcWW1b1n4ouzc2yLVbNbkjtQVAsKK0vYrUSkfWY3UNUxVxdVo1F_qZ5-ezZhzXq9qm8Fest4y91_Ef8-9ePk_p-Vi1QWEcR1/s400/20180627_140644.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This boy was still a little loopy from the sedation meds after the paracentesis on Wednesday, but looking pretty good for just having a blood pressure of 40/20!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhochGzjLuVl9MREzzImVsNizCtNpj6VLVGZqEtZfOlDhGKqybfZlvJk1_U6QMcOVsATJ-_xC3u0414nYpZB9aDK9sv0btIrMan2OKvcl1ON3xQxAMRnFEuNN7iZSGLTcvW6Z3Ax5H6USTV/s1600/20180626_165856.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhochGzjLuVl9MREzzImVsNizCtNpj6VLVGZqEtZfOlDhGKqybfZlvJk1_U6QMcOVsATJ-_xC3u0414nYpZB9aDK9sv0btIrMan2OKvcl1ON3xQxAMRnFEuNN7iZSGLTcvW6Z3Ax5H6USTV/s400/20180626_165856.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another picture of his cool dinosaur room</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuIyYkOTIA1DwqjZZc04FdnffEB0EzOx6r7fY2UBeGIeHm9bjC8sQz0KxbRfQS2tRbWc-AiPSryTgcIeJ_FsCFGASERPlHxiCvUWBw4Wa9-IZ_O9pcRgnRTObr9vEv-wUGMhPTKyCTkBFg/s1600/20180627_114132.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuIyYkOTIA1DwqjZZc04FdnffEB0EzOx6r7fY2UBeGIeHm9bjC8sQz0KxbRfQS2tRbWc-AiPSryTgcIeJ_FsCFGASERPlHxiCvUWBw4Wa9-IZ_O9pcRgnRTObr9vEv-wUGMhPTKyCTkBFg/s400/20180627_114132.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking the halls like a boss!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGKpEhbJ3lhTWuyKvxNJULC3biNKCke4yFPQaFmpxuu7bDddq1l8xnVdTTV8Su5OYU4Qn6IFBLVEIfnTpPkgCH5syd8UvwVb1nDW4rbjX11SnYiwNXR37XV3WCIxAujqy0r37waNCvNAC5/s1600/20180627_165726.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGKpEhbJ3lhTWuyKvxNJULC3biNKCke4yFPQaFmpxuu7bDddq1l8xnVdTTV8Su5OYU4Qn6IFBLVEIfnTpPkgCH5syd8UvwVb1nDW4rbjX11SnYiwNXR37XV3WCIxAujqy0r37waNCvNAC5/s400/20180627_165726.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was always ready to shed the hospital clothes and put on his own. This was on Wednesday evening as we walked the halls again (it happens many, many times a day!)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_kFvZPaoBZ9gxjALBl9JmmJoATcORAjOoSkRz_f9FAuZ7pU-RSIeEnibG8xC8TAF-rRJnV23MI41UpZSnDLdYUODsK9h10wwf3UdIwl4GuxgroUmHVR4a3j6ueH4X828pYHIqi-aReN9/s1600/20180627_171439.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_kFvZPaoBZ9gxjALBl9JmmJoATcORAjOoSkRz_f9FAuZ7pU-RSIeEnibG8xC8TAF-rRJnV23MI41UpZSnDLdYUODsK9h10wwf3UdIwl4GuxgroUmHVR4a3j6ueH4X828pYHIqi-aReN9/s400/20180627_171439.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sent this picture to Bryan and Zachary as a way of saying 'Good luck!' before Z's tourney game that night.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv05jlwovJj-e8SMjuFWCsE4BY4uqBhlqpdjUExjSZRohyphenhyphenvBpfJD5YZxqlFIbwN3ep7zkkD5esmN1PuXl2dGOfjfMLxf3VA_pSt4YaCmuw1F0ryXm4JU7LLcY_55FUJoCZcHcup7OkShOG/s1600/20180628_111206.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv05jlwovJj-e8SMjuFWCsE4BY4uqBhlqpdjUExjSZRohyphenhyphenvBpfJD5YZxqlFIbwN3ep7zkkD5esmN1PuXl2dGOfjfMLxf3VA_pSt4YaCmuw1F0ryXm4JU7LLcY_55FUJoCZcHcup7OkShOG/s400/20180628_111206.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">If you look at the little square window above the trash can, you'll see a goofy little guy!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-yNkL5IKvS6ajhj4A-vIiMD7KYLBvrT0IU6TjEvC4uyy9L1TcSqru3AknkY5Wffl-hStDSHVGeMPZe-9gJzHm-K1Zprgp9_I8idYvD4OQGQMdMgi7xwCoTdr2OHJQIL2OQo6rAIyMDOh4/s1600/20180628_133444.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-yNkL5IKvS6ajhj4A-vIiMD7KYLBvrT0IU6TjEvC4uyy9L1TcSqru3AknkY5Wffl-hStDSHVGeMPZe-9gJzHm-K1Zprgp9_I8idYvD4OQGQMdMgi7xwCoTdr2OHJQIL2OQo6rAIyMDOh4/s400/20180628_133444.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thursday afternoon waiting to go home. Here he's in the playroom shopping for fat free foods!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN9wq3QWC5vSnyJVApzta6egiQUeRRPtS4DaVKbR1r7OLtsF3m7bMaZS7b0CnIAn287Hj1LP3V_t6L838eQwuKGODqdxPGO10YPoYnFVYAQnUto_Tzhsv49o0NQ_yMFJ-XtRoQEmciRB5z/s1600/20180628_172841.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN9wq3QWC5vSnyJVApzta6egiQUeRRPtS4DaVKbR1r7OLtsF3m7bMaZS7b0CnIAn287Hj1LP3V_t6L838eQwuKGODqdxPGO10YPoYnFVYAQnUto_Tzhsv49o0NQ_yMFJ-XtRoQEmciRB5z/s400/20180628_172841.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Walking out of the hospital!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0mU5omxFSwI4Xij32WQ7FSs2jwRp9Fz5f21jlU7MfIKbrJHHGia4Eg08NNe1gFO3hdVl0RZwm2ban5BPQPLop63lXGtZpybWjINVRHKLhEGdQV2PK4CnTUMfDaJKbnglNhcqoXUWBh2LE/s1600/20180628_172951.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0mU5omxFSwI4Xij32WQ7FSs2jwRp9Fz5f21jlU7MfIKbrJHHGia4Eg08NNe1gFO3hdVl0RZwm2ban5BPQPLop63lXGtZpybWjINVRHKLhEGdQV2PK4CnTUMfDaJKbnglNhcqoXUWBh2LE/s400/20180628_172951.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bye, PMCH! See you next time!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYfzA2VSkJCfTEtvhP3Dp9fgU8cTsugeCt9anE0GSfgHLCJWiESikKxp4Ve8T9N7_RhsDb-pNChOoCKIba-lTkNwkmKKUpAObq7gtsrmAlxfe1ZzvTpsJw_Pq36GgeIEr0UGBY_Q_dvOHi/s1600/20180628_201204.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYfzA2VSkJCfTEtvhP3Dp9fgU8cTsugeCt9anE0GSfgHLCJWiESikKxp4Ve8T9N7_RhsDb-pNChOoCKIba-lTkNwkmKKUpAObq7gtsrmAlxfe1ZzvTpsJw_Pq36GgeIEr0UGBY_Q_dvOHi/s400/20180628_201204.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Riding the pony at Meijer where we stopped for a few fat free supplies before heading home</td></tr>
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Warning! The next picture is of the fluid drained Tuesday in his paracentesis. I don't think it's gross, but things like that don't bother me. Just warning you this is your last chance to stop scrolling if you don't want to see it!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZgroj2yC_43B2fuZyJWWsYrx1rqtsGzqSdwNjDnj_HCrnoIE0FIaG8ygJ90Q-j70QWroVnJWtHDIAZRwQMQTrQQhD_LADHe9FA-9-_ays8ogCPoj-Jn2SIR74sVhqxYKtskIVgoVf2kYT/s1600/20180626_074827.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZgroj2yC_43B2fuZyJWWsYrx1rqtsGzqSdwNjDnj_HCrnoIE0FIaG8ygJ90Q-j70QWroVnJWtHDIAZRwQMQTrQQhD_LADHe9FA-9-_ays8ogCPoj-Jn2SIR74sVhqxYKtskIVgoVf2kYT/s400/20180626_074827.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This should be a clear, somewhat yellow fluid. Instead it's thick, tan, and definitely not clear.</td></tr>
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<br />Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-6737235843751588622018-06-25T12:32:00.002-04:002018-06-25T12:32:27.258-04:00Liver Biopsy Results and Future PlansWhen Eli was hospitalized with his heart rhythm issues in May it was also discovered that he had liver problems. We asked for many prayers during multiple tests including a liver biopsy, but we were reluctant to share what exactly was going on. At the time, we didn't know anything for sure and what the doctors feared was very bad news. We just couldn't explain until we knew more. Outside of our medical team, we didn't talk about it with anyone, even our immediate family. We had to know more before we could share. Thank you for all the prayers even without us disclosing exactly why we needed them. The power of prayer is amazing and Eli's results were much better than anticipated. First, let me explain what we thought was going on and what Eli was being tested for, then I'll explain what the tests showed and a plan for him. <br />
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<b><u>What we thought:</u></b><br />
<b></b><u></u><br />
During his May admission, once his heart rhythm was more stable, the focus shifted to his growing abdomen. After an abdominal ultrasound he had a liver ultrasound. Then he had a more specialized liver ultrasound. Then he had a CT. Then a liver biopsy. From what the team had seen on ultrasounds and the CT, they were fairly certain he had an advanced case of liver cirrhosis. They wanted the biopsy done to confirm that and to show what stage of cirrhosis he was at. Liver cirrhosis is a disease of liver damage from a variety of causes which lead to scarring and liver failure. There's no reversal of the damage done from cirrhosis. Kids with Eli's type of circulation (also known as Fontan circulation) are known to have liver problems later in life, but cirrhosis is rare. His gastrointestinal team, cardiology team, and the hospitalists had never had experience with a Fontan kid having cirrhosis. The research they did yielded very little help. It looked like Eli was once again blazing his own medical trail and doing things no one else has done. <br />
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{Let me get off track here just a bit and say something about his heart and treatment so far. The heart surgeries Eli has had done are still relatively new in medicine. Twenty five years ago, most babies born with his defects were sent for a transplant right away (which gets rid of the defective heart, but brings about a whole lot of other problems and issues to deal with in addition to the fact that a transplanted heart doesn't last as long as a natural heart....studies estimate a heart transplant averages 13 years). If the baby wasn't a good transplant candidate, then they were made as comfortable as possible and let nature take its course. As time passed, less and less baby hearts were available. Why? Because of stricter car seat laws. We were keeping our kids safer in our vehicles (which is a VERY good thing!) which meant fewer infant/child deaths which in turn meant a major decrease in the availability of donor hearts. Some surgical options had been developed and trialed in heart defect children, but weren't routinely used. With transplant options becoming less prominent, these surgical options became more prevalent. My point with all this is, there are not a lot of adults living with Fontan circulation. Most of the patients are still children. We don't have a large medical base to study the long term effects of Fontan circulation on other parts of the body. So although we do know liver disease is common with Fontan kids, there's still a lot of research going on to discover other negative effects or problems the Fontan will bring. However, we don't regret undergoing the Fontan. The goal for Eli has always been have this series of surgeries which is believed to help get him to his late teens/early adulthood before needing a heart transplant.}<br />
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Back to now, we don't have other cases or research to compare Eli to. But the fact remains he is suspected to have severe liver cirrhosis based on his radiology studies. The CT and ultrasounds showed that his liver was hardening and had many nodules in it. The good news is that the ducts going into and out of the liver showed good flow and his liver function tests were good. But we've always known Eli's body compensates for many defects very well, so the fact they thought he had those good things didn't mean the bad things weren't happening. One doctor even had a discussion with me about the immediate plan for Eli once the liver biopsy results were in. This talk was only two days after the biopsy when we had no more information than we did two days before the biopsy, so in hindsight this talk was a very premature discussion that I now believe she did not need to have with me, but I'm sharing here to further explain how serious and worried we were at the time. She said Eli would need to be listed soon for a liver and heart transplant. The reason for both was to have both organs come from one donor which would greatly minimize the risk of rejection. If he were to be listed, it would happen in the next few weeks (as in yet this summer). PMCH does not do pediatric transplants. In fact, if Eli needed to have both done, not many places do that. We were likely looking at going to Cincinnati or Philadelphia for an undetermined amount of time for him to be listed, wait for the perfect donor, then have the surgery, and begin recovery from that. So not only were we facing a very uncertain medical future for Eli, but we thought our family would be further broken up for a long time as one of us (probably me) would move with Eli and the other stay with Zachary and Charlotte. All that in addition to having just moved and our old house still being on the market (had an offer 11 days after listing. After working on that deal for six weeks, it fell through just prior to closing so it is back on the market and we technically still have two homes). <br />
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And that's not all that was going on. When Eli was to have the liver biopsy, he also had a lymph node biopsy. Yep, more concerns about Eli's health. Through all the imaging that was done, it was discovered that he had several enlarged lymph nodes. The teams wanted to biopsy one of those to rule out lymphoma. That's right. There was a slight concern that Eli could be battling cancer of the lymphatic system. Overwhelmed doesn't begin to describe the emotions Bryan and I were feeling. There was too much going on, too many unanswered questions to explain publicly at the time. <br />
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<b><u>What we know:</u></b><br />
<b><u><br /></u></b>
On Wednesday, May 23, Eli had a big day. He had a heart cath, liver biopsies, lymph node biopsies, and paracentesis. So he had a cardiologist, an interventional radiologist, a pathologist, and an anesthesiologist in the procedure room in addition to the staff of nurses and technicians necessary to accomplish everything that needed to be done. None of his procedures were actually that difficult or dangerous for him, but just scheduling all that together is so complicated. Major kudos to the hospitalist staff and others involved who made it all happen for our little guy. He tolerated everything very well. We had the heart cath info immediately from Dr. Parikh and it was all good. Eli's Fontan was intact and working just as it should. Eli has several (many, many!) collateral veins that have grown off of some of his major vessels. Sometimes those are closed off with coils, but Dr. Parikh said Eli's are too small and too numerous to do. Also he said if the body grows them and we close them off, the body will grow more. He doesn't believe these are hurting Eli and saw no reason to spend hours coiling each of them, even if he could. Any other problems he saw from the cath were things that he thinks can be corrected or at least improved with a pacemaker. Overall, it was great heart news. We knew the biopsy results would take many days to come back so we were happy with what we knew.<br />
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A few days after the biopsies were done, he was sedated again. He had more fluid removed from his abdomen for testing as well as drainage of an abscess located deep in his abdomen. We had to be sure he didn't have any active infection going on before proceeding with a pacemaker in the future. <br />
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As answers came in we confirmed Eli has no active infection going on in his body. At an appointment with Eli's regular GI doctor (not the one who had the transplant talk with me), we got the biopsy results. We actually had the results before that so I had a good idea of what was or wasn't happening, but we didn't have results as far as how they pertained to Eli and what the next step was, so we didn't share them yet.<br />
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The liver biopsy showed liver congestion and mild fibrosis...NO CIRRHOSIS!!!! Fibrosis is scarring of the liver, but it's an early stage and Eli's is classified as mild. What damage has been done is not reversible, but if we can alleviate and control some of the liver congestion, then the progression can be significantly slowed. So he does have liver damage, but honestly the news we got is basically best case scenario. I made it a point to discuss with her the conversation had with the other doctor about transplant and she confirmed my thoughts that we are no where close to needing to go that route for Eli. Although it may be in the cards for him one day, it's not anything to worry about at this time or likely even in the near future! The lymph node biopsy also did not show anything of concern so we were blessed with amazing news on many of our fears!<br />
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<b><u>What's next:</u></b><br />
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It is believed that the liver congestion and resulting fibrosis are related to Eli's heart rate and rhythm. He is still in his slow junctional rhythm and also has some breakthrough SVT. Everyone has agreed he needs a pacemaker, but cardiology did not want to do surgery to place one until we knew he had no infection and what the status was of his liver disease. Now that cardiology has clearance (and even encouragement) from Infectious Disease and Gastroenterology, they got to work getting surgery set. Of course it's not that simple as picking a date on the calendar. I do not envy the scheduler in their office. This is the third time this poor person has had to coordinate all this for him. As of now, he is set for pacemaker placement the week of July 23. The day before his pacemaker placement, he will undergo a few tests. One will be another paracentesis to drain fluid from his abdomen. We'll talk about that more a little later. The other will be a test by Dr. Steinberg, his pacemaker doctor, to further investigate Eli's heart rhythm. He wants to see if there's a chance Eli could have a pacemaker with just one lead. The significance of this is pretty major. If one lead would work for Eli, then the surgery to place it is a lot easier than if he needs multiple leads. Of course we want what's easiest for Eli, but what's easiest now may not be easiest in the long run. I'm curious to see what will happen.<br />
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While Eli was in the hospital in May he had three paracentesis procedures done. Nearly seven liters of fluid was taken from his abdomen. Because test results were still pending, nothing was done about the cause of the fluid, so we knew it would come back. And it has. At his GI appointment last week the doctor said he needed it drained off. She waited a while to see if we could coordinate with cardiology to have the paracentesis and pacemaker closer together. Now we know pacemaker can't happen for another month, so he needs to have a paracentesis soon. Actually she's recommending three between now and pacemaker placement. He has a significant amount of fluid to remove and he will likely accumulate more as time passes. When they took four liters off the first time, he did not do well that night. We don't want to wait and do a large amount the day before pacemaker surgery and risk him crashing and not being stable enough for surgery. That's why she wants to do three between now and then, so they can remove smaller amounts each time. <br />
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Eli is scheduled for tomorrow (June 26) to have a paracentesis. He has to be checked in at 6:30am so he and I will leave town a little before 4am. We opted not to spend the night up there somewhere, it just makes more work and Zachary has a ball game we'd like to see tonight. After the procedure, he will be admitted so they can monitor him closely. The plan is to just stay the night and come home on Wednesday. I will pack for multiple nights! He will have another paracentesis done in early/mid July, then a third one the day before pacemaker surgery. <br />
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The thought process now is that once his heart is in a regular rhythm with a higher rate, it can decrease the amount of liver congestion he's experiencing, thereby decreasing the progression of fibrosis. <br />
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We would appreciate your prayers tomorrow as he undergoes this procedure, for safe travels, and for Zachary and Charlotte. Zachary understands what is going on and is doing okay with it, but Charlotte is not pleased to hear about Mommy and Eli leaving again, especially overnight. She will be fine, but it's a lot for her to take in. <br />
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Thank you all for your prayers! Eli is proof they work! In closing, I'll add a few pictures of events that have happened since we've been home. We have been BUSY! Eli has had baseball, Zachary has had baseball, Bryan's sister got married, we've had a family reunion, and we're still trying to unpack from the move. Busy times! But always time to cherish Every Little Beat...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQOiHyeTwNbKWvQ0WSPDgRrOU2T67bNzb6uk7ODkGNN0Np7Kvi4uhyBqipHJRm915fe2vjTizy3pCN5B57RBqWcFYNVaX0FwYKbfCO12j6krhTTSkRad_2L16RxbOAIQHbipkeQRAhwH6K/s1600/20180614_191300.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQOiHyeTwNbKWvQ0WSPDgRrOU2T67bNzb6uk7ODkGNN0Np7Kvi4uhyBqipHJRm915fe2vjTizy3pCN5B57RBqWcFYNVaX0FwYKbfCO12j6krhTTSkRad_2L16RxbOAIQHbipkeQRAhwH6K/s400/20180614_191300.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli and his little league team after their last game together</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipY_juoriA2QOoWSYME2AB3FNsPv3ycbOXK_qJbuVa5R4xOMypzvTKlhuAnrAFCikM2LhNVtRqHE2Sg97DYy5wVmsZkzqenBGQFVUb7Kyw3bT3DsqTJKpuogzx37P8HcPVieRK970KukWA/s1600/20180614_191337.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipY_juoriA2QOoWSYME2AB3FNsPv3ycbOXK_qJbuVa5R4xOMypzvTKlhuAnrAFCikM2LhNVtRqHE2Sg97DYy5wVmsZkzqenBGQFVUb7Kyw3bT3DsqTJKpuogzx37P8HcPVieRK970KukWA/s400/20180614_191337.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Receiving his medal from the league president</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9YvuNhyphenhyphenf34Au7i_nXbss25ZVjhJGxQVb6-V_Or1_mUXz0DucNqWdNm06b3L7TgrOtVh0RaBhME_O5sFQyF-WHFERsMi06KB_iSftF5JzVQN25JODTPJ0pI5DLzxFoRBGOdV7QZteL2DOe/s1600/20180621_120052.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9YvuNhyphenhyphenf34Au7i_nXbss25ZVjhJGxQVb6-V_Or1_mUXz0DucNqWdNm06b3L7TgrOtVh0RaBhME_O5sFQyF-WHFERsMi06KB_iSftF5JzVQN25JODTPJ0pI5DLzxFoRBGOdV7QZteL2DOe/s400/20180621_120052.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not really sure what these three were up to, but they're so cute!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjabqj-z2-6d0d7ulTMcLDDfvSJEVvr3MoNYNfWB0YitKC-AaNJVnJvOesXobsboOm3oozyYGbrBEYPmEjbF0WngrhU0H2ouKvAWM61oWC4qWPJFs6LT7m9oyiiX9lVkvivs_P-Bo_qu5pi/s1600/20180602_142611.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjabqj-z2-6d0d7ulTMcLDDfvSJEVvr3MoNYNfWB0YitKC-AaNJVnJvOesXobsboOm3oozyYGbrBEYPmEjbF0WngrhU0H2ouKvAWM61oWC4qWPJFs6LT7m9oyiiX9lVkvivs_P-Bo_qu5pi/s400/20180602_142611.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We went shopping for me to get a dress for my sister-in-law's wedding and these two had to have a ride :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRkxbqTdioMAVa8N36EFPm70DpfTMgFaESL8KcgScMLFKOyqLHpZoYcSyGmZ1oAqfJpgEk6V-QiltfduZUBh2CWUeq-TrUvaDAiBnaoVVmtcF-AXuCasfLfQs4JMfUDr8j1OMoJzRNohHz/s1600/20180603_151910.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRkxbqTdioMAVa8N36EFPm70DpfTMgFaESL8KcgScMLFKOyqLHpZoYcSyGmZ1oAqfJpgEk6V-QiltfduZUBh2CWUeq-TrUvaDAiBnaoVVmtcF-AXuCasfLfQs4JMfUDr8j1OMoJzRNohHz/s400/20180603_151910.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli with my mom and sister at the Summer Social</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP8ycyrR5MWMM6DbrImR03gCdaDzjGjRpxQsKh8dk87m2eyNI5XdGYR0I_K5A3pMprfAEnVuuDUHGDoFzuToBBIQdsrAwOLCgblZCyA0bpn7VF8WhcVrbTydcaz-kMcfKj0j5a-lKuhM6V/s1600/20180604_160418.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP8ycyrR5MWMM6DbrImR03gCdaDzjGjRpxQsKh8dk87m2eyNI5XdGYR0I_K5A3pMprfAEnVuuDUHGDoFzuToBBIQdsrAwOLCgblZCyA0bpn7VF8WhcVrbTydcaz-kMcfKj0j5a-lKuhM6V/s400/20180604_160418.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing ball in the yard one day, these two had to have a rest....on Aunt Kendra</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmOaE2tVLfHSFa9xo3Lv-vaBYLw9QacLY0aUD2k3JFzifE_Wirk84Es0V2hCxc_fGoS2UwHXJVdU69CyJ__lcatioT5Ii4N9NycUGUC8dPFWd4R5AgrKIgntbBRdVoxwd7pA8OoDBmxL84/s1600/20180612_131014.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmOaE2tVLfHSFa9xo3Lv-vaBYLw9QacLY0aUD2k3JFzifE_Wirk84Es0V2hCxc_fGoS2UwHXJVdU69CyJ__lcatioT5Ii4N9NycUGUC8dPFWd4R5AgrKIgntbBRdVoxwd7pA8OoDBmxL84/s400/20180612_131014.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Throwing coins in the fountain at St. Vincent the day of his appointment</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMRbod_2-NRH-NyQfsf_lSFPI_1IJm6MxLz1S9Zi0X2T_9eb8EIdVIAU7wsF0PZi7M8BLrCs7rJLz0jYHMDi_gGVue5db3n9VC9_CqkI4MD5U1CovwlXW_hE5IyxQNJ87oDv1phDYDmhyphenhypheny/s1600/20180613_132054.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMRbod_2-NRH-NyQfsf_lSFPI_1IJm6MxLz1S9Zi0X2T_9eb8EIdVIAU7wsF0PZi7M8BLrCs7rJLz0jYHMDi_gGVue5db3n9VC9_CqkI4MD5U1CovwlXW_hE5IyxQNJ87oDv1phDYDmhyphenhypheny/s400/20180613_132054.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing with kinetic sand in the kitchen. Not really sure why his foot is in it.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim7WoeK_8cKiXo5jttVn4WDyvGUqnM9hz403XQ4lU0VKC-SjlhkoaR8wFlFRr2M3KFdfyNWzl2Ncl1XPkS6zdDCsTnO4lJ5Lqm04ExvkE4L4BJPwShVaKFQJdtjN0NUgu9Ir1-EsL1Qf_A/s1600/20180624_174931.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim7WoeK_8cKiXo5jttVn4WDyvGUqnM9hz403XQ4lU0VKC-SjlhkoaR8wFlFRr2M3KFdfyNWzl2Ncl1XPkS6zdDCsTnO4lJ5Lqm04ExvkE4L4BJPwShVaKFQJdtjN0NUgu9Ir1-EsL1Qf_A/s400/20180624_174931.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli receiving a special blessing from the pastor who performed Kendra's wedding ceremony. He listened intently but did not put down his bag of chips.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE0DL6bKroo3VYCzBjq50v3vP458m3OpouZQrt5Jrb7VxoXQ4wY8RcL0N44YFMRsVf-xXO8kWNJJc_5rlgByvhLxCVMbVWf5QG02rIfSm9kyQ6yKrJs6PVCMrZJZXnxhr1dgcJyqua6GWD/s1600/20180622_182656.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE0DL6bKroo3VYCzBjq50v3vP458m3OpouZQrt5Jrb7VxoXQ4wY8RcL0N44YFMRsVf-xXO8kWNJJc_5rlgByvhLxCVMbVWf5QG02rIfSm9kyQ6yKrJs6PVCMrZJZXnxhr1dgcJyqua6GWD/s400/20180622_182656.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the rehearsal. From left to right: Alyssa, Charlotte, Eli, Gunner, and Zachary. All five were flower girls and ring bearers for the ceremony.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihV4c3hpXMXKNXlAzPuYmB4xaYAsFT4rjgRGCV84kNRwZL4DASZYkLvLnc6o8FILjbPpvKputjdiS0H3d1kSPSMCNo1v85SRb8GKGwBi5SBIsd0G5pSc0xX-ignTa5i3k0Nnc1UgDFfLLf/s1600/20180623_194659.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihV4c3hpXMXKNXlAzPuYmB4xaYAsFT4rjgRGCV84kNRwZL4DASZYkLvLnc6o8FILjbPpvKputjdiS0H3d1kSPSMCNo1v85SRb8GKGwBi5SBIsd0G5pSc0xX-ignTa5i3k0Nnc1UgDFfLLf/s400/20180623_194659.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taking pictures after the wedding. All five kids were very good through the ceremony and getting pictures after. So proud of all of them! Then they danced the night away and provided lots of entertainment!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_O7D9v3AkpBc5AqfO2GTgV6wD6YhAoZg7CqLKaJ1Z8nyCpQSou7ExXkdlqih35iezyQ__b5ooPoGPSL_1kz24U_uqX1QffDzDfbYoCfJvczEiIyt_TjBfe7VHuoU4JKu6QRdjOQdVQ_ZP/s1600/20180623_195159.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_O7D9v3AkpBc5AqfO2GTgV6wD6YhAoZg7CqLKaJ1Z8nyCpQSou7ExXkdlqih35iezyQ__b5ooPoGPSL_1kz24U_uqX1QffDzDfbYoCfJvczEiIyt_TjBfe7VHuoU4JKu6QRdjOQdVQ_ZP/s400/20180623_195159.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not an official photo, but the Veale family in full force. We were blessed with a beautiful evening for the wedding. The temperature was good, the rain held off, and it was gorgeous. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7tUyjrtBSPsdxuC13GbMOeXtuON_FRlnEqc1hp3UFztKJQ32sEF8QAk5tH2eaxKFvAbc-S_h_R-skOPKo-Zz_W1HOL32SJYx5CSxHo3F7lk-YLvAIg4vmlIk8LqkxY6QmEc6X-vqYkKBy/s1600/20180623_195416.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7tUyjrtBSPsdxuC13GbMOeXtuON_FRlnEqc1hp3UFztKJQ32sEF8QAk5tH2eaxKFvAbc-S_h_R-skOPKo-Zz_W1HOL32SJYx5CSxHo3F7lk-YLvAIg4vmlIk8LqkxY6QmEc6X-vqYkKBy/s400/20180623_195416.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bryan, Eli, and family friend Tom. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGBN_aFMWmStPSyYf68wStRyTv60zd1PX30UaImlLU1iqIOZaUB4vRPLatM20bhbJVsQGtXMN4UcIZAoPWw1r1Q-eyRtvlGyg4PGhaHwQOk559ueyK13YFUZk1EC2mkk6oTbhV7VGonN6N/s1600/20180623_221638.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGBN_aFMWmStPSyYf68wStRyTv60zd1PX30UaImlLU1iqIOZaUB4vRPLatM20bhbJVsQGtXMN4UcIZAoPWw1r1Q-eyRtvlGyg4PGhaHwQOk559ueyK13YFUZk1EC2mkk6oTbhV7VGonN6N/s400/20180623_221638.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary, Ashley, Eli, and Bryan having some fun at the reception</td></tr>
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<br />Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com1tag:blogger.com,1999:blog-3046332276191815711.post-83970727779416483702018-05-21T02:34:00.002-04:002018-05-21T02:37:01.654-04:00May 17-20: Passing Time and Enjoying Each Other<div class="separator" style="clear: both; text-align: center;">
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Thursday, May 17<br />
The cardiology team as well as a representative from the GI team met early Thursday morning. They discussed Eli for an hour (I later joked with Dr. Parikh "only an hour" to which he replied with a smile "well, maybe an hour and fifteen minutes"). Basically what they need before proceeding further is to know what type and severity of liver disease Eli has. The best way to do that is through a biopsy. While he's under the anesthesia for that, the team wants to proceed with a heart catheterization. Eli doesn't necessarily need to have that done right now, but if he's sedated anyway, it would be a good time to do it. And the information they glean from that will be helpful. So that's really all that we got from them that day. And that's okay. It makes sense that they can't plan for what they don't know. The hospitalist team got busy trying to schedule Eli for both of those procedures. Getting all that coordinated takes a lot of time and we didn't hear anything else about it the rest of the day. Eli was in a pretty good mood all day. He took a long nap in the middle of the afternoon, but when he was awake he's very much himself. He's being silly, getting more comfortable with the staff, and wanting to play more. We both happened to have shirts that say "HUSTLE" so he insisted we wear them together today. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ3pr2-aAjCVbk6EmG3k3lRhqwnQr7do0ZmzoylT_ava3sNMZkCVBUq49aNuf3fij6i6Uf5FsGlCvdFK-_Wi9yGwab8aAMllr0vVIAyhdAWLM1dwHxRKzd_Vm9K3sJl-nx-LkitMG2qjpD/s1600/20180517_124153.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ3pr2-aAjCVbk6EmG3k3lRhqwnQr7do0ZmzoylT_ava3sNMZkCVBUq49aNuf3fij6i6Uf5FsGlCvdFK-_Wi9yGwab8aAMllr0vVIAyhdAWLM1dwHxRKzd_Vm9K3sJl-nx-LkitMG2qjpD/s400/20180517_124153.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy with her handsome little man as we both wore "hustle" shirts</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiak5Rz-lVjZP_K0Bs39tXdweODabPqkEZeuyxB_N1281qEWKbTIGaMmnzDJgu8CrlJypqRuOjP-TgNIGBJllpCfLkFvGkcq7Am5hu2_7Nr-zeYxh3wZlBJjMwLcc4Etq4pokK4wDpI-NJq/s1600/20180517_124242.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiak5Rz-lVjZP_K0Bs39tXdweODabPqkEZeuyxB_N1281qEWKbTIGaMmnzDJgu8CrlJypqRuOjP-TgNIGBJllpCfLkFvGkcq7Am5hu2_7Nr-zeYxh3wZlBJjMwLcc4Etq4pokK4wDpI-NJq/s400/20180517_124242.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is what happens when I don't take my phone to the bathroom with me.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1yVydB30XjOvOsUhPVRw_JNDY4yvNOCoHc3cpaw1Zr_KL_jSrWqM5xd8Zjo9ScRaQfq_0kfeC1fJYj_MqO58PeNs9_YlE8f6LBXcEmxtqCm01h-YIt0tOUF8NPEO5IcIVYVcRzmRGJzI7/s1600/20180517_182133.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1yVydB30XjOvOsUhPVRw_JNDY4yvNOCoHc3cpaw1Zr_KL_jSrWqM5xd8Zjo9ScRaQfq_0kfeC1fJYj_MqO58PeNs9_YlE8f6LBXcEmxtqCm01h-YIt0tOUF8NPEO5IcIVYVcRzmRGJzI7/s400/20180517_182133.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Working on some drawings as we wait for our supper tray</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQFwZpSFL2YNmbOwaUTFEUpy7N0hiRLpZHjP9I0sJijhan5yPT_ZsJ2WyNcUdp7kxQQV1cIINIuYTk37KoJ2MJjckwpsuTLpmKbLrkB0fLnQGmEsc_Tkdq479xqvWWuNiiiIN46OX_fXTK/s1600/20180517_210632.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQFwZpSFL2YNmbOwaUTFEUpy7N0hiRLpZHjP9I0sJijhan5yPT_ZsJ2WyNcUdp7kxQQV1cIINIuYTk37KoJ2MJjckwpsuTLpmKbLrkB0fLnQGmEsc_Tkdq479xqvWWuNiiiIN46OX_fXTK/s400/20180517_210632.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goofy boy balancing our nighttime movie on his head.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ECB1BCkv83OKpXhgjzF0rjQQFXV2X5ggYg3l11G6kCjMV9dyeuZYgIRta0mhTiLQ4fIekjOXfXaLGc7mlc8ncpyEF4r1nuxnHwAUgi7BWmsfAMUjSmjqCAxopbtj6LEv8D7J5zyw8-BP/s1600/20180518_223257.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4ECB1BCkv83OKpXhgjzF0rjQQFXV2X5ggYg3l11G6kCjMV9dyeuZYgIRta0mhTiLQ4fIekjOXfXaLGc7mlc8ncpyEF4r1nuxnHwAUgi7BWmsfAMUjSmjqCAxopbtj6LEv8D7J5zyw8-BP/s400/20180518_223257.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ending the visit with Ashley by doing SnapChat videos. I love how snuggled up to her he is and the big smiles on their faces. She's brought us many meals and helped provide a comforting distraction over the last nine days.</td></tr>
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Friday, May 18<br />
Another good day for Eli. He ate pretty well, drank more, and played a lot. After lounging around for a couple hours in the morning, we went to the playroom where there was a Project Sunshine representative in there. Project Sunshine brings creative arts materials to pediatric patients. Eli stayed in there for two hours. He painted a birdhouse, strung beads on a pipecleaner and made a bracelet, painted a suncatcher, painted a clipboard easel, and painted a plastic cup (they gave him gold coins to keep in his cup). After that we came to the room to order his lunch. While we waited for lunch we took turns hiding the coins around the room for the other to find (we're still looking for one!). After lunch, he went with the art therapist. The art therapist and Eli had been planning this for a couple days, but our timing with each other was always off. Finally it was working out for him to go with her. They used shaving cream, glue, and food coloring to make puffy paint in baggies. Then they snip off the corner of a baggie and squeeze the paint out to create their drawing. Eli drew a dragon. It's very impressive. When he came back from art therapy, I thought he'd be tired. But I was wrong. In fact, he wanted to play football. We have a small foam football in his room thanks to Zachary's baseball team. The room is too small and crowded for us to really throw a ball around, so we went just outside of our unit where there's a pretty open area that isn't typically used. I thought we were just going to throw the ball around, but Eli had grander ideas than that. He marked off our end zones, set the rules, and then we played. At times it was full on tackle football. That game lasted about an hour. I told him I was getting tired and his reply was a very non-compassionate "That's okay. Now catch this...." We finally got to come back to our room. After supper, we ended the night like we have all the others....watching a movie. We snuggle up in his bed together and watch a movie, either on our dvd player or one of the ones provided through their tv system. We often fall asleep together. I later wake up and move to the couch. Sometimes in the early morning hours, he'll call me back to his bed and other times not. I love all the snuggles! At some point in the day, we found out Eli's procedures had been scheduled. On Wednesday, May 23 at noon, he will have a liver biopsy and heart cath. More information to come on those closer to time.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGtmXHQmh4xBve4Nmb8RdQvdczrbZEK-bQPFZAR-LZ3aJnDY_Liv1yHfS9Bg9njt-m-7gN11tOhN9Rlv5fTgvQKqqKIEYXRbhNSFrnknSmRPxF0M2sz-UaZ2v6orkjO7b4lH55OomMfKM5/s1600/20180518_112011.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGtmXHQmh4xBve4Nmb8RdQvdczrbZEK-bQPFZAR-LZ3aJnDY_Liv1yHfS9Bg9njt-m-7gN11tOhN9Rlv5fTgvQKqqKIEYXRbhNSFrnknSmRPxF0M2sz-UaZ2v6orkjO7b4lH55OomMfKM5/s400/20180518_112011.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Painting the birdhouse</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8opz7ROqoIUnKz6W1VdnLi88Dk6Q8ppRuuGJ48PLjFAS_aI3ZV-VgydCx-LkABLcBhro2hZYc8YSiXep8l7kW2yFC4j9VXDoaTL4piOtUnmWqhU0tVvT6a_0zmivgqQzMU0oHzi5xtqwf/s1600/20180518_121032.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8opz7ROqoIUnKz6W1VdnLi88Dk6Q8ppRuuGJ48PLjFAS_aI3ZV-VgydCx-LkABLcBhro2hZYc8YSiXep8l7kW2yFC4j9VXDoaTL4piOtUnmWqhU0tVvT6a_0zmivgqQzMU0oHzi5xtqwf/s400/20180518_121032.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A sticker project</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMay9Qus5aYKcj4S_RG40Dlx2-zqeC2Nwuu-_tcGBvBNTy34OhuQ21KFq4zfoj-ElL_H1A1-uP6-C5u5hfepwsnyXb44MZUDnLw_s-JDZl25kISmUtjYTsxFrUAJ2W2hTzBJMVVeBsy6HK/s1600/20180518_123417.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMay9Qus5aYKcj4S_RG40Dlx2-zqeC2Nwuu-_tcGBvBNTy34OhuQ21KFq4zfoj-ElL_H1A1-uP6-C5u5hfepwsnyXb44MZUDnLw_s-JDZl25kISmUtjYTsxFrUAJ2W2hTzBJMVVeBsy6HK/s400/20180518_123417.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Painting his clipboard/easel</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhouiSZYDJ0xaYCpKU6UkOEFGjX2mTshHdNPQWp20058JsYBaaxAm1pRVxPHChalirQ5H07QMF9NqbXZbCR2aaMM-3n2dC7L3CLgC7MrMm6pJNs2WiamOCt5LvjCZR4yva0csIU0fIOKEXd/s1600/20180518_160215.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhouiSZYDJ0xaYCpKU6UkOEFGjX2mTshHdNPQWp20058JsYBaaxAm1pRVxPHChalirQ5H07QMF9NqbXZbCR2aaMM-3n2dC7L3CLgC7MrMm6pJNs2WiamOCt5LvjCZR4yva0csIU0fIOKEXd/s400/20180518_160215.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing football in the unused hallway. He's trying to get past me to score.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDQmQWgCla8zuRm8LeqGkVxxYBUgOXRMRlvnM2UJ_TJUKw0CH9v2SH475R3BNIhqEmyzFcNP1OJG_J7uNwmhnSyCvsEGo8lVzB9aq1iWhz1Tbri0xFnI1jo3KkK52afxzEyvfbVLBloUv2/s1600/20180518_160347.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDQmQWgCla8zuRm8LeqGkVxxYBUgOXRMRlvnM2UJ_TJUKw0CH9v2SH475R3BNIhqEmyzFcNP1OJG_J7uNwmhnSyCvsEGo8lVzB9aq1iWhz1Tbri0xFnI1jo3KkK52afxzEyvfbVLBloUv2/s400/20180518_160347.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More football. He tackled me. A lot. </td></tr>
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Saturday, May 19<br />
Most mornings I'm woken up about 7:30 by a cute little voice saying, "Mommy, I have to go to the bathroom" He gets Lasix through his feeding tube around 6am, so by 7:30 it's time to get up and start peeing! Today was no different. I had plans to wake early for a shower and start watching some of the royal wedding because why not? I didn't set an alarm though. Unless I need to be up for something, I've learned over the years to get sleep in here whenever I can and not make it harder on myself. So even though I was up for the day, I didn't shower yet. When the urge hits, Eli has go to quickly and he needs help. He is still monitored 24/7 by telemetry which means he basically has continuous EKG leads attached all the time. Those are attached to a small box. We have a bag for the box that ties across his body and makes it easier for him to be mobile with it, but it's still difficult for him to handle that, his shirts that are larger to accommodate his belly, and the urgency he feels with the medications. After a couple hours and breakfast, I ushered my protesting son into the bathroom for a scrub. He got his hair washed in the sink, his body washed, lotion applied, new stickers for his telemetry leads, and fresh clothes. He smelled soooo good! After he was done and settled in with the iPad, I finally got my shower. <br />
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We knew we were having some visitors that day, but we soon found out we were getting more than we originally realized. We knew Eli's kindergarten teacher and classroom helper were coming and I also knew there was a chance his principal would come. What was a surprise was that because of weather, Zachary's weekend baseball tourney was changed to Sunday only, so Daddy and Zachary got to come visit too!!!! Eli was ecstatic to find out they were coming. He's gotten much more comfortable over the last few days and the mention of home doesn't automatically bring tears. The last time they came, he was determined to not have a good time so saying goodbye wouldn't be too hard. This time he couldn't contain his excitement. They got here first. He hid from them at first but it was just so he could let them find him. He had hugs all around for his guys. It also helped they were carrying gifts from back home. A classmate and his family sent a bag of treats, matchbox cars, and activity books. A neighbor and classmate of Zachary's had sent a coloring book with crayons. Eli's Little League team had all signed a card and sent a box of baseball cards for him to open. He loved everything and took great joy in opening each thing, however the baseball cards were a big hit! He was still opening them when his principal came in. Eli had no idea he was coming, so he was thoroughly surprised to see him. It probably took Eli a minute to recognize Mr. Wildman without a tie (or rooster costume). I'm not sure Eli ever directly spoke to Mr. Wildman, but I know he showed him some baseball cards and enjoyed seeing the activity books and crayons he brought for him. Soon after Mr. Wildman was here, Mrs. Strange and Mrs. Mayhorn came. Eli knew they were coming, but was his typical shy self at the beginning. Like a typical kid who is getting spoiled, Eli whispered to me "what did they bring me?" They didn't disappoint and gave him a baggie of coins he can toss into the fountain when we go for walks (just that morning we were given permission to take him off the unit for short periods. Although we've not had time to go yet, he's very excited to visit fountain in the main hospital lobby) Eli wouldn't play, but the teachers played CandyLand on Eli's bed. Soon, Eli and Zachary were helping. We all had a very nice visit. Eli has talked several times about all of them being here. We know two of his current teachers are planning on coming this week and he's excited about that. In addition to visits, members of the school have a meal train going for Bryan, Zachary, and Charlotte and have promised to take care of mowing both our yards in Washington. All that and they take care of and teach our kids things. They are definitely teaching by example and we are so happy our boys are at this school. <br />
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We ended the day with a meal brought to us by Bryan's sister Ashley. She also brought some food for the fridge we can use for snacks or meals this week as well as some broenies Bryan and Z had to get home and get some sleep before heading out early Sunday to Z's tourney. A late night for our guys, but we are so glad they came. Eli went to sleep quickly that night, but up until a few minutes before drifting off, he was talking about all the people and events of the day. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCCoRWIcD5znl13Lkkz70ztr46MICvlukCuqKHIgK8GKPyi8ShIALPn_xCLiTO2s-WH_sTALPsPOWgnvb2NxodsdYx8RDtp3BixBYSHmpshB2Z2_1jnmvQdzEgsV1RKhukdRFcUo82rqbR/s1600/20180519_142929.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCCoRWIcD5znl13Lkkz70ztr46MICvlukCuqKHIgK8GKPyi8ShIALPn_xCLiTO2s-WH_sTALPsPOWgnvb2NxodsdYx8RDtp3BixBYSHmpshB2Z2_1jnmvQdzEgsV1RKhukdRFcUo82rqbR/s400/20180519_142929.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Peeking around from his hiding spot every time he heard the elevator.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Excitedly waiting!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiC0OiMYyJLUICNI2F0HCRRHmItuV7a2VT8fZZ-P3CzEIcj9JFgWZpHIM8vUvsnU1mh30HEHVhCO6xGLLuj7qD2o-IhNSzFpUGvQeQiG63k_DlzOYwlqWtOTcta3QvwIWVhs8JxasZw75C/s1600/20180519_144529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiC0OiMYyJLUICNI2F0HCRRHmItuV7a2VT8fZZ-P3CzEIcj9JFgWZpHIM8vUvsnU1mh30HEHVhCO6xGLLuj7qD2o-IhNSzFpUGvQeQiG63k_DlzOYwlqWtOTcta3QvwIWVhs8JxasZw75C/s400/20180519_144529.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Opening baseball cards from his team with Zachary</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Helping play the game he wasn't going to play.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoswzucUJEUINDhY5WmWmPhpaKgToroqN5FAlztvXgK103cKzZw_8FydZ3HQqCrCYvbKvdJFdrqK8Qb4Stu2yTpDWYfuFfrOmqKS3IJ0YBbt9E89B5OtvvFCLXZJN2tAtbdY3BawLe3YR7/s1600/20180519_153844.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoswzucUJEUINDhY5WmWmPhpaKgToroqN5FAlztvXgK103cKzZw_8FydZ3HQqCrCYvbKvdJFdrqK8Qb4Stu2yTpDWYfuFfrOmqKS3IJ0YBbt9E89B5OtvvFCLXZJN2tAtbdY3BawLe3YR7/s400/20180519_153844.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Laughing as he protests having his picture taken. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQbAD9bda9UInHHb0l5J1cD1Y_5lSIjcTmlpUBiaPYDy1nFmyXS4txgtA7rftbl6ihSPhw_4FkvZ3I3b3g_rpXCIihSz1KotkE09IW2Nk_jnbGm2ZHsmXD06COcRd0e41sl3v0AyJIwqLO/s1600/20180519_153924.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQbAD9bda9UInHHb0l5J1cD1Y_5lSIjcTmlpUBiaPYDy1nFmyXS4txgtA7rftbl6ihSPhw_4FkvZ3I3b3g_rpXCIihSz1KotkE09IW2Nk_jnbGm2ZHsmXD06COcRd0e41sl3v0AyJIwqLO/s400/20180519_153924.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli took a picture of Daddy holding Pablo. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-xVwin1AYypIrWYaNe1LKb-3iLf4hY_iUREto4DouPYTql2MTKOXQQCe0Y2UXF1ML06NLEwpKOAjJu_J_3l9qDQbj7JzP315LWyolhF0vEw3hD1Jk_Jy2tF4qX_htUX7hgnoOHyXfcbKy/s1600/20180519_165111.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-xVwin1AYypIrWYaNe1LKb-3iLf4hY_iUREto4DouPYTql2MTKOXQQCe0Y2UXF1ML06NLEwpKOAjJu_J_3l9qDQbj7JzP315LWyolhF0vEw3hD1Jk_Jy2tF4qX_htUX7hgnoOHyXfcbKy/s400/20180519_165111.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli and Mrs. Strange playing ball on the couch.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-NzeCzmLC3heDXP9OP7EkJ5u9pSa1lNLExA7M6cixxVPCSrLweE5-LKOGpIZ9B2hI58_Y4vrbPV27U5RE96wUlAsqh0nnF700F-GRVqNSPCXnYQmJo-KOzVpIaVF-jRRhG2cGXWOAPUXw/s1600/20180519_175043.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-NzeCzmLC3heDXP9OP7EkJ5u9pSa1lNLExA7M6cixxVPCSrLweE5-LKOGpIZ9B2hI58_Y4vrbPV27U5RE96wUlAsqh0nnF700F-GRVqNSPCXnYQmJo-KOzVpIaVF-jRRhG2cGXWOAPUXw/s400/20180519_175043.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mrs. Mayhorn, Mommy holding a squirmy Eli, and Mrs. Strange</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioZVNXX0Hcu1JEhsKyCj37N8a_vsBhU1lWp4pYRAaXFAqgQtCTEB6zEZoOfE540ZeixS_W19943mjWW1niw8elqQiOY6R7JHrPvp2CVWEuGkMmEmPAyKfp1EKWg_fporNrxi5YzPj6N0UO/s1600/20180519_190726.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioZVNXX0Hcu1JEhsKyCj37N8a_vsBhU1lWp4pYRAaXFAqgQtCTEB6zEZoOfE540ZeixS_W19943mjWW1niw8elqQiOY6R7JHrPvp2CVWEuGkMmEmPAyKfp1EKWg_fporNrxi5YzPj6N0UO/s400/20180519_190726.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our dinner crew eating in the family room.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPFj-GsObWtwM_TAczTDYDWOiJYrdlDTNXCAFb1KZFjA0eerX10_AJeCkqEMyPh3exCnYM4rQkhKT8f7X5-e9UJLVJy4mcUsZ_6U6UqLjCtr5eclL7-se8XPcRNfAefyIIN9m0MQGe6zFl/s1600/20180519_200237.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPFj-GsObWtwM_TAczTDYDWOiJYrdlDTNXCAFb1KZFjA0eerX10_AJeCkqEMyPh3exCnYM4rQkhKT8f7X5-e9UJLVJy4mcUsZ_6U6UqLjCtr5eclL7-se8XPcRNfAefyIIN9m0MQGe6zFl/s400/20180519_200237.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brothers</td></tr>
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Sunday, May 20<br />
This day was the least busy we've had the entire admission. Eli was worn out from all his visitors the day before (and playing with Zachary), so after his Lasix had worn off and his breakfast was eaten, he laid on the couch to watch the iPad. Soon after that he fell asleep. I worked on some things in the room while he was sleeping dozed a little myself. We also had a visitor who brought Eli a handmade blanket with baseballs on it. I put it on him while he was sleeping. When he woke, he wanted to play Legos. When he found out B and Z were coming the day before, he asked for three things: 1) his large Lego blocks, 2) his Paw Patrol watch, and 3) Daddy's chin. He got all three! So while we were playing blocks, Dr. Parikh (his main cardiologist) came in to check on him. He built a small tower with some blocks and helped Eli finish what he'd started while we discussed a few things. Nothing major to cover, today was just a check in day for him. After Wednesday we'll have more business to cover. <br />
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When he was done with blocks, he ate lunch, then we went to the playroom. While we were playing in there, Ashley (my sister) came in. She came to stay with him a couple hours while I left. Since getting here nine days ago, I've stepped outside twice. I needed a couple hours away. I retreated to Target where I bought a few toiletries I was running out of, a couple shirts for Eli, too many clothes for Charlotte, and some things for each of the kids. I found some large clear plastic bags that zip so I bought one for each kiddo and put some stickers, silly toys, cards, and other items in there. Just a little something for Zachary and Charlotte back home to know we're still thinking of them and miss them like crazy. It's been really difficult with Charlotte. She has never been through any of this before so she does not understand why Mommy and Eli are suddenly gone all the time. I've not been able to talk to her on the phone when I get to talk with Bryan and Zachary because she just asks "Mommy, when are you coming home?" That's mainly why she didn't come with the guys yesterday, the separation at the end would be too confusing (and she had big plans with cousin Alyssa so she had a lot of fun yesterday without us). Like Eli, she has gotten better about it and just today she enjoyed a little video I sent to Kendra. She told Kendra she wanted more 'real pictures' of Mommy and Eli. Kendra said Charlotte really enjoyed it and it didn't make her sad, so there's progress! I need to send those more often. <br />
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After my Target trip, a stop at the gas station, and grabbing Taco Bell as Eli requested, I came back to the hospital. When I came in, Eli was being pulled around the unit in a wagon. He and Ashley had drawn pictures for me in addition to making lots of silly pictures and videos on SnapChat. They had fun. After we ate, he wanted me to pull him in the wagon. I'm a little meaner and told him he had to walk two laps around the unit before I'd pull him five laps. He protested, but eventually began walking. He loves circling past the nurses station whether he's walking or riding a wagon and getting their attention. After six laps (I'm meaner, but also a big softie), I convinced him we were going to start our movie early tonight so we could watch all of it instead of falling asleep. By the time we both changed, brushed our teeth, chose a movie, and got settled under his new blanket, it was time for his nighttime meds. During his medications, Bryan called with news. The little league in town is making Eli an honorary member of the 7 year old All Star team! He gets a jersey, just like the players who are on the team. He was so excited. He immediately chose #19 which is Jay Bruce's number with the Mets (Eli's favorite player). What support this boy has! Meds were finished and we snuggled up to watch Ice Age: Dawn of the Dinosaurs. Eli watched some of the movie, but he kept saying things about his baseball team and asking if we can go watch the All Stars play. We didn't make it very far into the movie before he was sound asleep. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgchmP74P7azb2xX36gY5DEIuMil5OS9DN2_zBlPA8rFAixEe7BElBYVAhcpi3vXJFwy_HWtU4mq5lfHH76mN25cecOviIrHT6ItGgg4itZ6kOaKbZ267zeWA6t5US3y-wnj4EgAxdXgkDf/s1600/20180520_104509.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgchmP74P7azb2xX36gY5DEIuMil5OS9DN2_zBlPA8rFAixEe7BElBYVAhcpi3vXJFwy_HWtU4mq5lfHH76mN25cecOviIrHT6ItGgg4itZ6kOaKbZ267zeWA6t5US3y-wnj4EgAxdXgkDf/s400/20180520_104509.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli napping under his warm new blanket</td></tr>
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Additional News:</div>
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I hope my delay in reporting the recommendations from Thursday's meeting didn't worry anyone too much. Even on slow days, we are so busy here with many doctors coming in to examine him, medications multiple times a day, and many other things. It's hard to describe how quickly the time does pass in here. I'm often asked if it's boring waiting around in a hospital all the time and it makes me laugh every time! It's a fast paced, constantly active environment that either excites or exhausts my little boy. I am at his beck and call, which is fine. He needs extra help now and he deserves it. So, again, thank you for all the messages, texts, emails, and offers of support, encouragement, and help. They are so appreciated. Please know that I have read them all but really can't take the time to respond to each one no matter how much I'd like to. It's busy enough here that I don't even get to talk to Bryan on the phone every day. I'm not complaining about this, just wanting to stress that I do not mean to be rude or leave anyone out. </div>
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While speaking of offers of help, please know we appreciate all of them. It's difficult to be in a position of asking for help. And we realize most of these offers are so we don't have to ask, but it's hard sometimes to think of things to ask people to do for us. We are proud that we asked for help getting the yards mowed. On that note, a huge help to us would be selling our house! So if you know of anyone looking, please send them to our realtor (Jerry Durnil with ReMax 812-444-9695).</div>
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Eli does love to get mail, so if you'd like to send a card to him here at the hospital, he would love it! You do not have to send gifts, he truly enjoys opening the envelopes! He's beginning to read so he reads part of it and I read the rest to him. He would love a card, a short note, a picture, a funny comic cut out of the paper, etc. Just a physical reminder to him of some of the support he has behind him through these battles. Right now, we don't know how long to expect to be here. With a biopsy Wednesday, we would expect results within a couple days. Then the team will have to plan treatment based on those results. We don't know what those possible treatments could entail, we've not asked that far ahead because it's just too far ahead. The absolute earliest I see him being discharged would be next weekend (Memorial Day weekend) and I really think that's extremely optimistic. So we will be here long enough to receive mail. At the end of this post I'll have the hospital address as well as a Washington address if you want to send mail there and know it will be brought to us with family visits (or if you want to send a card to Zachary or Charlotte). </div>
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Something we will start soon is another Eli's MVPs shirt sale. The company we used for his shirts in the past is no longer in business (thanks for putting up with me all these years, Garland Graphics!), so we are working with another company for a new design. It will be very similar to what we had before because that logo is so well known for him, but we want to incorporate more of Eli's whole health into it, not just the heart. So we're looking at adding something about Congenital Heart Defect Awareness, Pediatric Stroke Awareness, and possibly Feeding Tube Awareness. In the next few days we'll have more information about design, types of shirts available, and the price. </div>
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Thank you for all the concern and prayers. We feel it. Eli has been very happy and active the last few days. It's wonderful to see him like that, but it takes a toll on him. Thankfully he's where he can rest and be constantly monitored. He is amazing and I hope I'm as strong as him one day. As always, remember to cherish Every Little Beat....</div>
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Addresses for mail:</div>
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Peyton Manning Children's Hospital at St. Vincent</div>
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attn: Eli Veale, room 3020</div>
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2001 West 86th Street</div>
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Indianapolis, IN 46260</div>
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Zachary, Eli, or Charlotte Veale</div>
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201 East Main Street #401</div>
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Washington, IN 47501</div>
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Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-28267730840860785172018-05-17T02:57:00.001-04:002018-05-17T02:57:29.589-04:00May 14-16: Paracentesis and More QuestionsMonday, May 14<br />
Eli was scheduled for a CT arteriogram. We found out late morning that it was ordered and they scheduled it for 3pm. Eli was going to be sedated for this because of how necessary it was for him to hold still. Because of what they were trying to get images of, his unique cardiac anatomy presented a challenge. The contrast dye for the CT would have to be given through IVs in his upper extremity and his lower extremity. He has an IV in his arm, but they had to start an IV in his leg. The nurse called the IV team to send someone and asked them to bring ultrasound to help find a vein. The lady who came found one vein in each lower leg that she felt comfortable trying. She used the left leg first because she 'liked that vein better'. Eli cooperated very well as she inserted the IV (he did cry but he held as still as he could and didn't fight). She got it in easily, but when she flushed it, the vein blew. So off to the other leg we went and unfortunately the exact same thing happened. After that she said she was done and didn't see any other places to try. Our last option was for the anesthesiologist to possibly start one after Eli was asleep. I hate, hate, hate that he was stuck twice and neither worked, but he doesn't have good veins. Unfortunately we have to put him through things like that sometimes. Luckily once he was asleep, the anesthesiologist was able to start one and we are still using it. It's been very helpful during the last couple days to have two IV sites. <br />
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While we were passing time waiting for the test, the GI doctor came in to examine Eli. He was not one I had met before, but he was extremely nice and explained things well. Toward the end of his visit he said they would probably do a paracentesis in the near future to remove the fluid. I asked if he knew they recently scheduled a sedated CT for that afternoon. He did not know that but was very interested. I asked if it was possible to do the CT and the paracentesis together to avoid separate sedation times and he said that's what they were going to try to do. He quickly left the room to make arrangements (the clock was ticking!). Within an hour we had confirmation that Eli would undergo both.<br />
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Eli did very well for the scan and procedure. I stayed with him until he was asleep then was taken to a waiting area. While there I ate some snacks (thanks Britton's Bullpen!) and drank a lot of water. Eli couldn't have anything to eat or drink 6 hours prior to the sedation so that meant I had nothing to eat or drink for several hours as well. (Although I did hide a water in the bathroom and snuck a few drinks through the day!). They decided to do the paracentesis first in order to remove as much fluid as possible before the scan. The interventional radiologist would be removing the fluid. He said he'd come talk to me when he was done. When he came out he told me they removed over 4 liters of fluid! I couldn't believe it. He said Eli tolerated it well and was having his scan done. Shortly I was taken to a different waiting area closer to the recovery room. He was in there for a long time (longer than he was in the procedure room). Removing that much fluid from anyone could cause problems, but even more with a heart kid. So we had to deal with his blood pressure being low. Once that came back up he was monitored quite a while longer and then brought back to his regular room.<br />
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Once here, he was still very tired. He was having his vital signs checked frequently. Around 9pm his blood pressure dropped. A lot. It was 43/29. The nurse called the doc and two doctors quickly came to him (they had been in a couple times before just checking on him anyway). Orders for some stat lab work and fluid boluses were given. Over the next few hours he was given two boluses of fluids via his two IV sites. His lab work came back pretty normal and his other vital signs were stable. He was very sleepy, but when he was awake he was talking to us. He was drinking some and even peed a little which surprised us. His pressures came back up and they continued to monitor him closely all night.<br />
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Tuesday, May 15<br />
Tuesday was a long day. Eli was very tired from the combination of the effects of the anesthesia, the lack of good sleep the night before, and the physical exhaustion of the low blood pressure. He was cranky and whiny all day. In addition, when the hospitalist team made their rounds, I found out that the GI group wanted Eli to have an MRI of the liver due to some questions brought about from the ultrasound he had a couple days earlier. At first I agreed, but later realized that couldn't happen due to the piece of pacemaker lead that was still on his left ventricle from four years ago. It's not MRI compatible. I told the team this and they said they'd talk to GI to make further plans. Later that day I was told Eli would have different liver ultrasound that afternoon. He slept a lot through the day. I wish I could say it was a laid back day, but it wasn't. Lots of specialists in and out, lots of activity, lots of whining from him, lots of vital sign checks. He didn't eat or drink anything other then popcorn in the middle of the day when he requested a movie (Alvin and the Chipmunks). He fell asleep during the movie as we laid together in his bed. I slipped out to try to give him more room to sleep. Soon after that, we had a visitor. His YMCA basketball coach and family had come to see him. I knew ahead of time they were coming but no way could I control Eli's nap. Our room is at the end of a hallway so we were able to visit for a while outside the room. At the end of the visit Eli began to wake up. Not nicely, but he was awake. His coach, Taj, went into the room a little and spoke to him some. Then he came out and asked if he could say a prayer with all of us. It was really nice and helped soothe some internal struggles I had been having that morning since hearing some of the concerns the team had. Isn't it amazing how a simple thing like that can help so much? Taj and his family left, but only after insisting on bringing me supper. After they sweetly came back with Fazoli's for us, it was time for Eli's ultrasound. It was done at his bedside and he was very good for it. When it was over, he came to the couch and sat on my lap. Moving him from the bed to the couch wasn't easy since he had fluids going through his upper IV and an albumin infusion going through the lower IV (albumin infusions help replace the protein lost from all this fluid he's accumulating. It pulls the protein back where it 'should be' then an IV diuretic is given to help flush off the fluid). Luckily we had a student nurse with us all day so she and another student helped maneuver his equipment as I carried him from the bed (he can walk, but he was tired and we weren't taking any chances with accidentally pulling out one of those precious IV sites!) It was wonderful to sit with him on my lap for a while, I hadn't gotten to hold him yet that day! I opened up the food and he started eating the spaghetti. I couldn't believe it, but he ate half the serving! He let me order a tray for him and he ate good amounts of some of those items. He still didn't drink much, but he continued to eat little bits all evening. I was able to talk to Bryan for a few minutes and got some news we didn't want. You may remember, we moved at the beginning of the year. We moved then put our former house on the market. Fortunately we had and accepted an offer less than two weeks later. Tuesday, we found out the buyer's loan fell through after a month and a half of working on it. The deal is off. So our house is back on the market. I tried not to think about that too much, but it's getting hard to not be overwhelmed every time I turn around. Child Life services had brought in a PlayStation 3 over the weekend and it's still in our room. We played baseball for a couple hours and Eli's trash talk helped perk me up. We ended the evening snuggled back in his bed, eating popcorn, and watching a movie (Ice Age: Dawn of the Dinosaurs). Both of us fell asleep until I woke to move over to the couch. <br />
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Wednesday, May 16</div>
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Eli seemed to be much better Wednesday. He woke up happier (not happy, just happier than he was the day before!). He requested a breakfast try and ate most of it. He watched tv for a while which was the first time he watched the tv. Later he changed to the iPad and watched videos of mascots from his favorite teams. While he watched those, we had our typical influx of doctors and nurses each doing their own assessment for him. The biggest battle of today, as well as yesterday and likely the next several days, is managing his fluid balance. He's been given albumin infusions three days in a row to help with that. He's on two diuretics multiple times a day. We painstakingly count every ounce of fluid he drinks, every milliliter of medicine given, and every bit of urine that he pees. Obviously his belly was smaller Monday night after having four liters drained from it, but the next morning it was already larger than the night before. Through the day today, I think it has gotten a little larger still. It's nowhere near as big as it was prior to the paracentesis, but the fluid is reaccumulating. GI visited and said in light of the results from the two types of ultrasounds on his liver, their next recommendation is a liver biopsy. We don't have anything set for that, partly because there is a big meeting tomorrow where Eli will be the main topic of discussion. The cardiac group has their weekly meeting on Thursday mornings. All the cardiologists, the cardiac surgeons, and anyone else necessary will gather to discuss cases that need figured out. We've known since the weekend that Eli's case would be presented so they can work out what is the best plan for him. I found out today they've asked Dr. Tibesar (the GI doc on Eli's case) to be there as well. We should know what they recommend sometime tomorrow. I am not elaborating on the concerns with his liver right now. It's not that I don't think they're right, it's that I don't understand it all well enough right now to fully explain. You all know we're pretty honest with our news about him, so it will be shared, but not until we know what we're sharing. Let's just be clear that it's pretty serious and not what we expected. We are way beyond the point of "let's get him a pacemaker and everything will be fine." Eli is very complicated. All heart kids have a degree of complication, but Eli is beyond that. In talking with specialists today I heard him called "unique" and "different" once each and "an enigma" twice. Once again, Eli is blazing his own trail and taking us along for the ride. We're all on this ride.</div>
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Specific Prayer Requests:</div>
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- that the team is able to have a plan for Eli regarding his needs with his heart and his liver.</div>
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- for Eli's fluid balance to be stable, as well as his vital signs and heart rhythm</div>
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- for me and Bryan as we process whatever news the team gives us tomorrow</div>
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- for all of our kids who are each dealing with this separation in their own ways </div>
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- that we find out for sure why he's accumulated so much fluid in his abdomen and are able to treat it</div>
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- that our house sells soon so we don't have to worry about the upkeep of two homes while we're living separately under these circumstances. </div>
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Thank you for all the calls, messages, meals, visits, offers of help, prayers, and everything else you've done for us. I don't see this admission being over soon so we may be accepting more of those offers of help in the near future. We are so grateful for all of you. Trying to end on a positive note, here are a few photos from the last couple days:</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFNCZvz9pjjHiTjdQtxYnKUPx4hTv-WJAzvc7RzbMEe36qvSyA_KID68Ots4EHUdRA1NPYUClh2P7vMQJMCmD6nbslbAtvnW9ZCPbYEpV9D7tQZiZh6O0IBIeYAly7ov46VKP_24bz_hqg/s1600/20180514_013650.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFNCZvz9pjjHiTjdQtxYnKUPx4hTv-WJAzvc7RzbMEe36qvSyA_KID68Ots4EHUdRA1NPYUClh2P7vMQJMCmD6nbslbAtvnW9ZCPbYEpV9D7tQZiZh6O0IBIeYAly7ov46VKP_24bz_hqg/s400/20180514_013650.jpg" width="400" /></a></td></tr>
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Eli's special guys who help Pablo take care of him. In the back is a pillow from Heart Hugs. Left to right we have Austin, Tasha, Giraffy (given to him by Mady and family), Giraffy (given to him by Zachary the night before his first heart surgery), Uniqua, and Tyrone.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsFpCusOlLkekewuviTNNKtyRVwI0AD1O45xqeziVRQN3Qe_ZBM70YmugRKEwAstqXlcpcha96BwU0eZrvvLJiva63J6h9eXnDlFdNOwqelnvpjH6nOT0bprUWlGS903GoHHCJ9-4BBZv3/s1600/20180514_200938.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsFpCusOlLkekewuviTNNKtyRVwI0AD1O45xqeziVRQN3Qe_ZBM70YmugRKEwAstqXlcpcha96BwU0eZrvvLJiva63J6h9eXnDlFdNOwqelnvpjH6nOT0bprUWlGS903GoHHCJ9-4BBZv3/s400/20180514_200938.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not a great picture, but this is the pic I got of his belly Monday night after they drained 4 liters</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheISR01iOsbxiQd5oOBXqiYIfr1_ytspHJl4o4Do9vagkyQpMlr4WyXIbSrxIiMXXBxyrB81b2FrRBbBvndWTex7i13ikUTJWZSN4kLUWDjZAs8IAfnaoeghRYBxzICIZXKQNoMg0DxTHZ/s1600/20180515_125837.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheISR01iOsbxiQd5oOBXqiYIfr1_ytspHJl4o4Do9vagkyQpMlr4WyXIbSrxIiMXXBxyrB81b2FrRBbBvndWTex7i13ikUTJWZSN4kLUWDjZAs8IAfnaoeghRYBxzICIZXKQNoMg0DxTHZ/s400/20180515_125837.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy, Eli, and Pablo cuddled in bed Tuesday with some popcorn and a movie. This was a rare smile and I happened to catch it on camera!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsaJ8pEMQeWhc4aUNQdE5B03QGfv4dBWN-A_Cp3FRD0dVbxP5zcXH4Fwc_VNzfimh0pQJgrmyII599gTROqpiUyN0hSK3LH6aacQ-DBoYDiA8PIUNeVzPvnMcqxqFNY2xUZOZmxoZImJzX/s1600/20180516_182351.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsaJ8pEMQeWhc4aUNQdE5B03QGfv4dBWN-A_Cp3FRD0dVbxP5zcXH4Fwc_VNzfimh0pQJgrmyII599gTROqpiUyN0hSK3LH6aacQ-DBoYDiA8PIUNeVzPvnMcqxqFNY2xUZOZmxoZImJzX/s400/20180516_182351.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He walked around the unit once and out to the laundry area to help me bring in our clean clothes. The deal was a wagon ride if he walked for a while, so here he is in the wagon. Doesn't everyone read Pete the Cat when riding in a wagon?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqG5AzMkihlrVVlzShwVP9l9eF0RW8hUGHimM3c-alcRXTXABeSp9she3a2GwPiig5tak127nrog9Tueg0ljyTPZU83t2JCZKmFQTOl3fwyMmuxdfDcMOmAHXvLz7UBSwsznidoSYMTbad/s1600/20180517_002541.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqG5AzMkihlrVVlzShwVP9l9eF0RW8hUGHimM3c-alcRXTXABeSp9she3a2GwPiig5tak127nrog9Tueg0ljyTPZU83t2JCZKmFQTOl3fwyMmuxdfDcMOmAHXvLz7UBSwsznidoSYMTbad/s400/20180517_002541.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He still sleeps like a frog sometimes!</td></tr>
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Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-4680722633587417972018-05-14T02:52:00.002-04:002018-05-14T02:52:22.135-04:00Pacing Ourselves and Flying High<div style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; font-family: Times New Roman; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">
Many of you know that Eli's been having heart rhythm issues. He's been in a junctional heart rhythm since his second open heart surgery in 2011 when he was 11 months old. That just means his heart doesn't 'fire' at all the places a normal heart does to create a smooth, regular rhythm. It also results in him having a lower than normal heart rate. He tolerated this lower rate well, so doctors were content to monitor him and intervene if he were to have issues. In April 2013 he had his third heart surgery. Since they were doing surgery anyway, his team decided to place a pacemaker at that time. He wasn't experiencing any problems with the junctional rhythm, but it's not a good idea for his already stressed heart to have the additional stress of an irregular rhythm. So the pacemaker went in during surgery. After surgery, he was doing well cardiac wise, but he developed a staph infection that he fought for months. Eventually it was determined the graft placed during that third surgery was harboring staph. The only way to get rid of the infection was to remove and replace the graft. They couldn't tell if the pacemaker and wiring were also colonized so they opted to remove it as well. Better to be safe than sorry. As we all remember, that fourth surgery is when Eli had his strokes. Without the pacemaker, he was back in his junctional rhythm and did well with it for several years. Over those years, his resting heart rate declined from the upper 70s to the mid 50s. Even with those low rates, he was active and tolerated it well. </div>
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In January of this year he wore a 24 hour Holter monitor (like an EKG that records for 24 hours). That showed he has another rhythm slipping in. Eli has been having 2-3 minute runs of atrial tachycardia (possibly atrial fibrillation) with a rate of over 200! Dr. Steinberg, Eli's cardiologist who specializes in electrophysiology (the pacemaker doc!), said as long as Eli tolerates the low rates, he isn't overly concerned with how low it goes. However, he is not comfortable with Eli breaking into a high atrial rate multiple times a day. We've always known Eli would very likely need another pacemaker, Dr. S just always wanted to wait as long as possible before placing another foreign object in Eli because of his history with staph. In an effort to prolong that even with this new development, Eli was started on Atenolol. It's often used as a blood pressure medication, but a side effect is that it lowers the heart rate. Here, we were using it to keep him out of that high atrial rate, but that would also lower his resting rate even more. Dr. Steinberg stressed that this medication was a temporary use to put off going straight to a pacemaker and to give Eli's cardiac team time to review his case and make more plans. After several weeks on the Atenolol, a Holter done in March showed that Eli was not experiencing the high atrial rate (yea!), but his resting rate was down to the mid 40s. When he was asleep his heart was only beating 30 times a minute! In addition, he's experiencing several symptoms caused by this lower rate. He's more tired, not necessarily sleepy tired, but shorter attention span and very cranky. He's also more blue around the mouth, fingers, toes, even nose and ears sometimes. This tells us his heart isn't pumping the oxygenated blood as well as it used to. He's harder to wake up from a deep sleep. In fact, he sometimes sleeps so soundly that he has actually slept through some nighttime accidents which is very unusual for him. After he began experiencing problems, he had an echocardiogram and appointment with Dr. Kumbar (Evansville cardiologist). His echocardiogram showed some changes since his last one in January. She believes any changes she noticed in his heart function is because of his low heart rate now being able to keep the blood flowing smoothly, not because of a weaker heart. Another issue he's experiencing is a distended abdomen. He has always had a round belly, but it is huge these days. We aren't completely sure if he's retaining fluid, or if he's having liver issues which is very common with post Fontan kids.</div>
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So all of this was relayed to his team in Indy. With Eli's complicated heart, there's not a simple answer. What they decided needs done (and this surprises none of us) is to proceed with pacemaker placement. Sometimes pacemakers can be placed without actual surgery, but that is not an option for Eli for several reasons, mostly because of his unique cardiac anatomy. So Eli will be heading to the operating room for his fifth open heart surgery. Surgery was scheduled for the 31st of May. </div>
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As that day draws closer, Eli's symptoms with the low heart rate are more pronounced. He's not doing as well in school because he can't concentrate and many evenings he falls asleep on the couch very early. Dr. Steinberg was concerned with these developments. He's also always been very cautious of putting another pacemaker in Eli because of how complicated he is. Dr. Steinberg wanted to take Eli off the Atenolol because of all the issues he was having with the low rates. He was also hoping that Eli would well off of it and not need a pacemaker, or at least not yet. So Monday, May 7 was the last dose of Atenolol we gave Eli. We had a very busy weekend and early week. Lots of travel and busy times. We didn't intend to be that busy, but knowing he isn't going to get a fun summer break led us to accept a couple opportunities for experiences he would enjoy. When I got word from one of his teachers Thursday that he wasn't playing at recess and he was not acting like himself, I figured he was just really, really tired. I considered going to school to check on him myself, but they hadn't asked me to and I know anytime I go check on him in person, he'll want to come home. So I decided to wait and see if they needed me. I picked him up at the end of the day like usual and he was acting pretty normal. I asked if he was excited for his baseball game that night and he said "YES!" He did seem tired, but not anything I wasn't expecting. He and the other two were playing in the basement. After a while he came upstairs and was very whiny. As I hugged him I could feel his heart beat and it was very fast. I had him sit with me and used our small pulse ox to check his rate and oxygen saturation. His oxygen was pretty good for him, but his rate was over 200. Then I used my stethoscope to count it for myself and got the same numbers. Through this, Eli was alert and answering questions, he just said he felt yucky. I called his cardiologist and left a message. Eli was still in the high rate (between 200-230). I went back and forth checking him and packing a bag. Just as we were about to take him to the ER, his rate changed from 200+ to 77! Within a couple minutes of that change, the cardiologist called back and we had a long discussion about what to do if it happened again. Eli had been scheduled for a Holter next week, but we decided to change it to Friday. We watched him closely through the night and kept him home from school. Friday he did go to the hospital and got his Holter put on. He was in good spirits all day (I really think he feels like he conned me into letting him stay home from school even though we never had any intention of him going Friday!). He and Charlotte played all day and had lots of fun. Eli thought it was great fun to pick up Zachary after school since he didn't have to go at all! That evening we went to Zachary's Little League game. I've been taking our wagon to the games so I can pull him instead of him walking that far (he just can't make those distances lately). He was fine at the game, but very whiny by the time we got home. It was 9pm when we got in. After he & Charlotte used the bathroom, I began changing them into their pjs. Eli was incredibly fussy and crying. As I changed his shirt, I felt his chest. His heart was racing again. I checked the time (9:15pm) and grabbed the pulse ox and my stethoscope. His special heart was beating 250 and above. He was wearing the Holter, but all that does is record the event. It had happened twice within 30 hours and we weren't waiting to see what would happen next. One thing the cardiologist said was if it happened again, it would be very helpful to have a recording of it. That's what the Holter was doing, but it wouldn't be read until Monday. Even more important, we couldn't count on Eli's heart to come out of it on its own like the day before. He was still alert and answering questions, but very upset and crying. We quickly decided to take him to the ER. </div>
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As fate would have it, Bryan's dad was at our house to drop something off. As Bryan scooped up Eli and I grabbed his medical binder & keys (and Pablo!), Mark moved his truck away from the van and came in to stay with Zachary and Charlotte. Bryan set Eli in his car seat and we pulled out before the van doors were shut. Bryan just knelt in front of Eli the whole time (we live fairly close to the hospital) to hold him in his seat as I drove. With our small pulse ox that was still on Eli, we could see that the rate was still in the 250s. I dropped the guys off at the ER door and was going to park and meet them. As he was getting Eli out, Bryan asked "Where exactly do I take him and what do I say?" I said "Right inside the door is registration, tell them you have a child with a complex heart history and his rate is 250 right now...they'll come to you." I parked and ran back inside. Bryan and Eli were sitting at a registration desk with two people at the computer working on his information. Bryan didn't have his wallet so I handed over what they needed. Bryan and Eli were taken back about two minutes after they got in there. After I completed the paperwork, they took me back. Eli had only been back there three or four minutes when I was let in. He already had a respiratory therapist putting leads on his chest to get an EKG, a nurse had other leads already placed and a pulse ox on so his vitals were already showing on the monitor in the room (still 250 range), and another nurse was almost done placing an IV to draw labs from. I had been in the room about a minute when the doctor came in to get Eli's history and examine him. He was quickly placing a call to our Indy cardiology group. As he waited for the call back, they prepared Eli for administration of drugs that act very quickly to break rhythms like that. Through all of this Eli was awake. He was crying some, but would mostly just stare at the bed. He wanted to hold my hand all the time (fine with me!). His oxygenation was dropping a little due to the stress his body was under, so he was placed on oxygen. We tried different things to get him to bear down and perform what's called a Valsalva Maneuver. If he bears down like trying to poop, if he would cough, if he would hold his mouth shut and try to blow air out, then any of that could potentially help break the rhythm. But he refused. He was grunting a lot which is something he often does when he's upset. He seemed cold, so the nurse tried to put a blanket on him. He got mad and grunted her away. She left the room and he settled back on his bed. He closed his eyes and suddenly his heart rate was 77! After 55 minutes of over 250, he converted on his own! The doctor was on the phone at the nurses station talking with the on call cardiologist. Just as I was about to go there to tell him about the change, I hear one of the nurses in the hallway excitedly say "he converted!" Everyone came back in and checked him over. He was getting really mad again (too bad, kid!). It was a huge relief, but we weren't done. This couldn't keep happening. The cardiologist said to transport Eli to Indy for admission and evaluation. </div>
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***We have only praise for the ER staff at Daviess Community Hospital. It's a small hospital with limited capabilities, but it's what is closest to us. We've had Eli there several times (twice in true emergent situations like this) and have been well taken care of each time. A kid like Eli has to scare them, but they don't show it. They listen to what we tell them about his defects and health history and we are included in his care from start to finish. And, what you can't teach in any health care school, they care about him.***</div>
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The flight team arrived quickly. Eli wanted me to fly with him, but there's no extra room on most of those flights and this one was no exception. If they had room I would've gone with him, but instead we had to send our little guy off into the air with three capable strangers to get the help he needed. For the third time in his life we watched him being loaded onto a helicopter and take off into the sky. It was a beautiful, clear night. "Perfect for a night flight" one of them said as we wheeled Eli to the helipad. It was a slight comfort. He was loaded, headphones were placed on his head to help drown out the noise and he could hear the crew talking to each other. Pablo was tucked in just below Eli's chin and kisses were given. We broke ourselves away from him and retreated a safe distance. The chopper took off about 11:25pm. Once his flight was out of sight, I started to cry. With the challenges in our life, every day is an extra task or struggle of some sort. But for several years, we've not had extremely serious daily concerns. With the scheduling of his pacemaker surgery, we knew that our hiatus was ending, but to suddenly be immersed in it as deep as we were with our son in the air and two more children at home to be cared for, it was suddenly overwhelming. After my quick cry, we hustled to the van. We had decisions to make, packing to do, and a beautiful brown eyed boy to get to three hours away.</div>
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We knew I was going to Indy to be with Eli. Bryan had to make a decision whether he was coming to Indy or staying in Washington with our other two. Zachary had a tourney to play the next morning and Bryan is one of the coaches. Of course he had good reason to miss, but there was no reason for Zachary to miss. It would be good for him to play. It would be good for him to have his dad with him. Bryan agonized over the decision, but in the end decided to stay in town to be with Z and C. As much as I wanted him with me, I knew it was the right decision. It would help the other two to have Daddy there and, to be totally honest, it would help Bryan to have baseball as a distraction. Eli was stable and in very good hands. </div>
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I left town right at midnight, after peeling Charlotte off me. Zachary has been through this before and although he was emotional, he was very calm and practical. Charlotte has never been through any of this and didn't understand why her mommy was leaving in the night with a suitcase. Once I got to Indy, it was so good to see his sweet face and kiss those cheeks again. He was asleep and my sister was in the room with him (such a benefit to having family live in Indy!). After the hubbub of his arrival and admission settled down, she promised him he would see me when he woke up if he went to sleep soon. He woke about 4:30 and cried when he saw me. A hug, a kiss, and more hand holding helped him fall asleep again. His heart rate was in the 50s which was lovely to see! </div>
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I know this post is long and I haven't even begun to discuss his stay here at PMCH (Peyton Manning Children's Hospital). It's late Sunday night, actually Monday morning. We've been here two full days and have been very, very busy. The good news is that Eli has not had any episodes of SVT (supraventricular tachycardia). Other good news is that doctors are finally seeing the size of his swollen belly and realizing it's something that needs addressed now. Prior to all this, we had talked about it with a couple of his specialists and there were a variety of reasons they thought explained what was happening. But now, seeing is believing and there is more action being taken. His abdomen is very large, so large that the skin is stretched tight over it and he no longer has a belly button, but just a flat area of skin where he used to have a cute little innie. He really doesn't have any other edema (swelling) anywhere else on his body. Saturday he had more bloodwork drawn to test for multiple things, including liver function. He had an echocardiogram, an EKG, and ultrasounds of his abdomen and liver also done on Saturday. We met with the on call cardiologist, gastrointestinal physician, and the hospitalist, each of whom had different concerns. Through Sunday, we saw each of those doctors again. No new testing was done Sunday, but some new medications were started. He is now on two diuretics (water pills) to help flush the fluid off his belly. He's not been eating or drinking well over the last couple weeks so we really need to encourage the fluids now. But it's a balancing act and we don't want to supplement with too much. </div>
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We're at the point now that the reason he was admitted has been moved to the lower end of the list of worries about Eli. His abdomen is at the top of the list, but a close second is his blue lips and fingers. His oxygen levels haven't been very low, yet he's still sporting a bluish tint to those areas. It's been more pronounced in the last few weeks with his lower heart rates. The cardiologist is concerned that Eli may have developed extra veins called collaterals. These little buggars can be beneficial in some cases, but here they are not. They are veins that develop between already existing blood vessels (basic description, but I'm tired and don't fully understand all of this either). In Eli's case, if collaterals are present, they're robbing him of some oxygen by allowing the blood to pass through them instead of the paths the blood is supposed to take. So now cardiology is talking about doing a CT Arteriogram (specialized, specific cardiac CT) and a heart catheterization. There was also talk of moving his pacemaker surgery to this admission. So there is a lot going on. A lot of specialties need to work together and discuss several things. Frankly, that's difficult to do on the weekend. The cardiologist we've had this weekend is a very nice, capable physician, but he's not one of the two main ones we've dealt with in Indy before. The same goes for GI. It would be wonderful if those who truly have followed Eli all these years could hash this out and develop a plan. So right now, I don't know what to expect, other than we're here for minimum a couple more days, very likely longer. </div>
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Eli is very emotional this time. He's older and hasn't had a hospitalization for several years. His last one 3 years ago was for one night after his tonsils were removed. Prior to that, we pretty much lived here, but he doesn't remember a lot of that because he was so young. This time he is scared, he wants to go home, and he doesn't fully understand what's going on. We had a video call with Bryan, Zachary, and Charlotte Saturday night. While it was good to see & hear each other, I feel like it did more harm than good for both Eli and Charlotte. Sunday (Mother's Day!), Bryan, Zachary, and -Charlotte were able to come here after Z's tourney. At first Eli was glad to hear they were coming, but before they arrived he asked if they were staying here or if we were going home with them. I knew he already knew the answers to both were no before he even asked because of the tears in his eyes and his trembling lips. It broke my heart to tell him we would stay here and they would go home. I kept promising him I was staying too. Mommy's good, but not enough when you want to be home with family. Before they arrived, he was beginning to act out and wasn't excited. He cuddled very little with Daddy, was rude to Charlotte, and didn't have much to do with Z. It's like he was protecting himself from getting hurt by not letting himself enjoy the time we had together. He wasn't bad or mean, just emotional and guarded. He chose me over Daddy most of the time even though I know he wanted Bryan a lot yesterday. So sad to see him have to work these feelings out and I feel helpless. </div>
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He did have a bright spot with the visit. Zachary's teammates all signed a card for him and the families sent a care package. Truthfully, it was multiple care packages! Many, many snacks and drinks, some small toys (most have been opened already), some books, and lots of love was sent from our baseball family. During the games both days, I've been sent videos of Zachary at bat since I can't be there in person to see. Many texts and messages of support also. We haven't known these people very long, but we are very grateful to be friends with them. </div>
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Many people have messaged me over the weekend and I am so thankful for the interest, support, love, prayers, and concern. As always, it's overwhelming to feel it. I have answered very few of these messages and I'm sorry for that. There are many reasons. Mostly it's because I'm busy! There are so many people in and out of our room, questions to answer, & tests to be taken to in other areas of the hospital. On top of that, Eli is very clingy and won't let me out of his sight. Plus he needs help with many tasks since he already has limited use of Lefty, an IV in his right arm, telemetry wires and box attached to him all the time, and often has a pulse ox on. He needs help with feeding, toileting, dressing, etc. None of that even mentions trying to keep him entertained enough. He's had many times of laughter and fun, but overall he's very stressed out during this admission and doesn't understand why I can't even tell him when we get to go home. Adding to his confusion, he has to be tired after his heart working so hard for so long those two evenings. So if I don't answer your message, please don't take it personally. Also, I'm tired! I only slept 90 minutes after arriving Saturday morning, so I slept hard Saturday night (with several hospital necessary interruptions). I barely have time to talk to Bryan to keep him updated.</div>
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Specific prayer requests:</div>
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- we think Eli's rate and rhythm issues are controlled now, please pray that they are!</div>
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- that we figure out what is causing his abdominal swelling and are able to reduce it.</div>
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- that a plan is figured out between specialties</div>
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- for Eli to tolerate all the upcoming testing that is being discussed for the next two days</div>
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- for Eli's peace of mind. He's so stressed out and tense, that isn't helping his health</div>
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- for Zachary and Charlotte. Z is all too familiar with much of this and Charlotte is being thrown in for her first time. </div>
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- for Bryan and myself as we try to keep our family together despite our distance</div>
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Thank you for bearing with me for such a long post. I had written about Eli's upcoming surgery, but hadn't posted it yet because we didn't want to before we told the boys about it. Well then everything blew up and to fully explain why we're in the situation we're currently in, I had to backtrack and explain. It's an understatement to say we appreciate all the support and concern that's been extended. Thank you isn't enough, but it's where we'll start. THANK YOU! I'll try to be better at keeping the posts more current as I update his status, but until then remember to cherish Every Little Beat....</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6iQ-Tya5TsP4CikSn5dKTjznbENHAdJ4XssJi8SulfLLRqJVAyv6JAGs7ZPZIxB0gR2okefttxtRPNbpLf7dJK3xOzD3D10il3tMJmiP5EnEAsR3j0FRDtQzQN5yBHZWvdGV5cvFvVwIs/s1600/20180511_214143.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6iQ-Tya5TsP4CikSn5dKTjznbENHAdJ4XssJi8SulfLLRqJVAyv6JAGs7ZPZIxB0gR2okefttxtRPNbpLf7dJK3xOzD3D10il3tMJmiP5EnEAsR3j0FRDtQzQN5yBHZWvdGV5cvFvVwIs/s400/20180511_214143.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A look at his rhythm while in the ER. His heart rate was 265 here.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie-8iZNQnfQZmTPjZUFONhaQdcyv0eI07PxDzHWduwlCXcP-9YCO3tkgF4wBeM056vvfHhR-XKcYoZjpfM-8wMUjmY3-IyqoKWEP92J6KEkb5HBXkj4StyV2SaMVI4X9Ye2MgVOywiKH8j/s1600/20180511_232144.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie-8iZNQnfQZmTPjZUFONhaQdcyv0eI07PxDzHWduwlCXcP-9YCO3tkgF4wBeM056vvfHhR-XKcYoZjpfM-8wMUjmY3-IyqoKWEP92J6KEkb5HBXkj4StyV2SaMVI4X9Ye2MgVOywiKH8j/s400/20180511_232144.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Locked and loaded into the helicopter under the close watch of Pablo. Eli said he didn't sleep on the flight (maybe didn't, it was less than an hour for him) and that Pablo was given a set of headphones too.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilzjpHtox-pZ9EueslJbOypv8giUTl-d3u9DFtBrOYgEMO__b-vlbfIp9VAEHYvsG8jKSfWhKWbbBKkwYKTQfNUb1a3T3Vt0zqpaVGvQNTS7_AWQFmNZuocmFly4xtVqjhMSgOX1osFnOx/s1600/20180511_232542.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilzjpHtox-pZ9EueslJbOypv8giUTl-d3u9DFtBrOYgEMO__b-vlbfIp9VAEHYvsG8jKSfWhKWbbBKkwYKTQfNUb1a3T3Vt0zqpaVGvQNTS7_AWQFmNZuocmFly4xtVqjhMSgOX1osFnOx/s400/20180511_232542.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The helicopter leaving with our baby</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6ZObcI0y_apteKshjaBzIChJDk-al7aWz3A5MuQDwMPQws6js0kZfftYQFxrmJHBgtGVJnQdEOhoL1SYsKxmvR7srwBLfPJbgvQCU1LTEdNI3FcmBjz2XJOb_az2eXh-SO-kW2QxkB3br/s1600/20180512_030636.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6ZObcI0y_apteKshjaBzIChJDk-al7aWz3A5MuQDwMPQws6js0kZfftYQFxrmJHBgtGVJnQdEOhoL1SYsKxmvR7srwBLfPJbgvQCU1LTEdNI3FcmBjz2XJOb_az2eXh-SO-kW2QxkB3br/s400/20180512_030636.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sweet sleeping boy after I arrived at 2:30 in the morning. I brought other stuffed animals for him and his green Elmo blanket. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh44DYIvUxB4iYvq34Nk_b1-1rv-cgLdhI5EFkgsxRq7-y3ma4B1ssby5xzZ9gHW03OPUXCnJZBpqUq2BUbwqM8-8lCmvxUSgV33NhyphenhyphenUSG9nsvPIEzwynXbRdf-Nrs2Y0h8e5DmCf4XvjGQ/s1600/20180511_213950.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh44DYIvUxB4iYvq34Nk_b1-1rv-cgLdhI5EFkgsxRq7-y3ma4B1ssby5xzZ9gHW03OPUXCnJZBpqUq2BUbwqM8-8lCmvxUSgV33NhyphenhyphenUSG9nsvPIEzwynXbRdf-Nrs2Y0h8e5DmCf4XvjGQ/s400/20180511_213950.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was taken in the ER at home, but it shows what the staff had on him when I got in the room just minutes after him. It also shows the size of his belly these days.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_Vt7bhPdjKXoX5to6QrEOOZTXwfIUihGpLv2PE1iaJ9Ag3jpmIem63Bt_hIfZtbsOWbfhZOSSSpl0qKoXKNRjEuXCYnODGfiN9FNnc3nZigikllcZgsPaNDl-LiT9NdzY1BmK4wLZ_2yJ/s1600/20180512_101155.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_Vt7bhPdjKXoX5to6QrEOOZTXwfIUihGpLv2PE1iaJ9Ag3jpmIem63Bt_hIfZtbsOWbfhZOSSSpl0qKoXKNRjEuXCYnODGfiN9FNnc3nZigikllcZgsPaNDl-LiT9NdzY1BmK4wLZ_2yJ/s400/20180512_101155.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli has always liked the pancakes here! This was Saturday morning.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4rjgd6a0oRYbwE_hog_hbDaoiCv56BcLJWYOys7H3NomuvsHr54KYxPbosPf0JGhqTtYhyy6tnuooyo0tjycz2gBSynMphHLVRrKTtvLy_xjjeVCkzE908lhxdxby6aiDjIZJwlcfWUuO/s1600/20180512_135443.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4rjgd6a0oRYbwE_hog_hbDaoiCv56BcLJWYOys7H3NomuvsHr54KYxPbosPf0JGhqTtYhyy6tnuooyo0tjycz2gBSynMphHLVRrKTtvLy_xjjeVCkzE908lhxdxby6aiDjIZJwlcfWUuO/s400/20180512_135443.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli took this picture of his friend as we were waiting for transport after his ultrasounds Saturday afternoon.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKB-UDXRCy14bOJYlhKaCy62Bi4wzSkkgWFg-DA1V2W4uq99fvqZOuSGeFM8apZZ0_UfObhEPc0b7xh9q_tBdVlFAOK-Hl8o1u1Wh3CYzFcnngL19zu4OzbDEi6WKkZ-uMzw0Yc9ap6GGK/s1600/20180512_181635.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKB-UDXRCy14bOJYlhKaCy62Bi4wzSkkgWFg-DA1V2W4uq99fvqZOuSGeFM8apZZ0_UfObhEPc0b7xh9q_tBdVlFAOK-Hl8o1u1Wh3CYzFcnngL19zu4OzbDEi6WKkZ-uMzw0Yc9ap6GGK/s400/20180512_181635.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Momma and her brown eyed boy!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy-M8YXZww3QAE0jOgJs7FoHJFsQYSdTPT5b2hdAF5NkxZUIBmr4O91Ok9-yn0vgywqP3CDqXejK69ROVOeEPZhMXm1_azU7MjQftVTnm0mhNRZEgd_D2wnssec7tmJPCen3WGAaGgmlym/s1600/20180513_090113.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy-M8YXZww3QAE0jOgJs7FoHJFsQYSdTPT5b2hdAF5NkxZUIBmr4O91Ok9-yn0vgywqP3CDqXejK69ROVOeEPZhMXm1_azU7MjQftVTnm0mhNRZEgd_D2wnssec7tmJPCen3WGAaGgmlym/s400/20180513_090113.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunday morning CandyLand before a bath</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBK_xIjYrd0XfoWSVkgHD9To2hB3KGrIpMqO2fKdmgqz9IBh8BC8P-IIN-LOYGelUsY2e39Rh1-gcN4YQvSN6vO3LQ1yOA-BItREaTzuQaGUmlel8jztJrLmGO__gsSkh6S_DWOjP68Dhi/s1600/20180513_123719.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBK_xIjYrd0XfoWSVkgHD9To2hB3KGrIpMqO2fKdmgqz9IBh8BC8P-IIN-LOYGelUsY2e39Rh1-gcN4YQvSN6vO3LQ1yOA-BItREaTzuQaGUmlel8jztJrLmGO__gsSkh6S_DWOjP68Dhi/s400/20180513_123719.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Air hockey after a bath (he won....again)</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD4DRfH9qTwDHnGjJSOxSRM-UicRymfGjTLP9OkdTmUmWCvqlBrxwM9NBbswaOa4-r8s4EGbYch_Fs_Mzea1T0ljfb7esanj4Svebs5rMzkNtADiSkc7A7UB61s8a-7hlGVf6qY36Pgme_/s1600/20180513_181133.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD4DRfH9qTwDHnGjJSOxSRM-UicRymfGjTLP9OkdTmUmWCvqlBrxwM9NBbswaOa4-r8s4EGbYch_Fs_Mzea1T0ljfb7esanj4Svebs5rMzkNtADiSkc7A7UB61s8a-7hlGVf6qY36Pgme_/s400/20180513_181133.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In a nice moment together, Eli and Charlotte were finding our van in the parking lot.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipL8OK2pVnFawAUoeQ_IXavZtJ4J3hPFXuBtm0Uta0uJvAE9z89OrTdfOlve9B5i7NJOCyvf5kMdsBePIq58KrcQQIv0ZhuiiKJKTSMc_1R1yjmxhAi-6si_UWQJ2pXEVFRb1cWD6VPs70/s1600/20180513_182212.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipL8OK2pVnFawAUoeQ_IXavZtJ4J3hPFXuBtm0Uta0uJvAE9z89OrTdfOlve9B5i7NJOCyvf5kMdsBePIq58KrcQQIv0ZhuiiKJKTSMc_1R1yjmxhAi-6si_UWQJ2pXEVFRb1cWD6VPs70/s400/20180513_182212.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli unpacking some of his goodies from Z's baseball team</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGQLQU3-bncl-jxFUAvock928_BYJKTwJFiZ3KTS4E_BgnIgA7p5vpRgdaviJEffLT6dwY14LwQKFKfq6794KijbT4qkkhiJSiIeznQcDWiR2EcmgqQQLQdRFVsIkPJpGLhut0O58vS9sU/s1600/20180513_183911.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGQLQU3-bncl-jxFUAvock928_BYJKTwJFiZ3KTS4E_BgnIgA7p5vpRgdaviJEffLT6dwY14LwQKFKfq6794KijbT4qkkhiJSiIeznQcDWiR2EcmgqQQLQdRFVsIkPJpGLhut0O58vS9sU/s400/20180513_183911.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More goodies!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsxuvjv1SOny00WuLnfkhowEFSVYnNDsgbPy6YTuYmRMeuGLu_94n9_CRco7PyxltF0NJdLUIxiGMko4YaO-_OCKG08jcqHsnEGamEx9cEObvAMmnTbrULl2RxcsOwNugUEMuDp5PYV2NB/s1600/20180514_015218.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1597" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsxuvjv1SOny00WuLnfkhowEFSVYnNDsgbPy6YTuYmRMeuGLu_94n9_CRco7PyxltF0NJdLUIxiGMko4YaO-_OCKG08jcqHsnEGamEx9cEObvAMmnTbrULl2RxcsOwNugUEMuDp5PYV2NB/s400/20180514_015218.jpg" width="398" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is most of what our baseball family sent. No trouble for me to find a late night snack tonight!</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhEJ7N5Swkj4f5u8WN2FaRkX-Ul5cSPSza7DU_A5hfjb0H653ekO3YMNynmncGqsVO4roppw0hVhwKjAf7YerlDb_avoqicy8D1GVhF5XuIgN56hry0Ksf955Oa_R002tLjLA1E-lHWWnD/s1600/20180514_015321.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhEJ7N5Swkj4f5u8WN2FaRkX-Ul5cSPSza7DU_A5hfjb0H653ekO3YMNynmncGqsVO4roppw0hVhwKjAf7YerlDb_avoqicy8D1GVhF5XuIgN56hry0Ksf955Oa_R002tLjLA1E-lHWWnD/s400/20180514_015321.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli's card from Zachary's team</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Each team member signed it for Eli</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Playing together in the playroom</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Of the fourteen pictures taken, this was the 'best' one. It was at the end of our visit and the two littles were not wanting to do this!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mommy with her baby girl</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiziKtlooYJLFBVVz84Fg0sB9hLdjgybH0txzDntWmJYEa9IWtHbceBfahyphenhyphenwYQDOBiO670bAtVxvoBQJ-9Gzl4Edh7mufiWmOM21Vz__lHIJfkrDMKfiOTOnf_Ig6LoJhfBoOtQf-PXV9Ls/s1600/20180513_123756_1526229493213.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiziKtlooYJLFBVVz84Fg0sB9hLdjgybH0txzDntWmJYEa9IWtHbceBfahyphenhyphenwYQDOBiO670bAtVxvoBQJ-9Gzl4Edh7mufiWmOM21Vz__lHIJfkrDMKfiOTOnf_Ig6LoJhfBoOtQf-PXV9Ls/s400/20180513_123756_1526229493213.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Picture Bryan texted to me of Zachary at his baseball game with the flower he had for me. At this time, we didn't know if the games would be done early enough for them to come to Indy.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Zachary giving me the flower and card all the ball players gave their mothers for this Mother's Day Tournament</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Front of the card</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh36omCiNe-5SKkMLBpR9II0jauaBZx88_gP_Yn7zf5nQggkRKxdnXKC7gU5C79xFtCSWqavO4B2xcoez3vmBSZfFYMnxML4CGrLPOcfTq0OWEGi3BBljCOPNMJGwLRSE3JeH0auAIyGY-b/s1600/20180514_013725.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh36omCiNe-5SKkMLBpR9II0jauaBZx88_gP_Yn7zf5nQggkRKxdnXKC7gU5C79xFtCSWqavO4B2xcoez3vmBSZfFYMnxML4CGrLPOcfTq0OWEGi3BBljCOPNMJGwLRSE3JeH0auAIyGY-b/s400/20180514_013725.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The message he wrote on the back of the card brought me to tears. I feel like I'm so hard on him and that he has to deal with more emotional stress than most kids do, but this shows he doesn't always think I'm a bossy dictator! It was exactly what I needed at that moment. And I love that he worked in his love of dinosaurs!</td></tr>
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Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com2tag:blogger.com,1999:blog-3046332276191815711.post-91517140737803470192018-04-11T09:08:00.000-04:002018-04-12T08:11:02.215-04:00Spring Break 2018 Fun!<div class="separator" style="clear: both; text-align: center;">
I know many of you are waiting for an update on Eli. I promise there is one coming, we are just waiting for a couple more things to be decided before posting a full update. He is doing about the same, but instead of playing basketball it's now baseball season. His heart rate is very low, but he is tolerating it well enough to play, go to school, and pester his siblings. This update is about all of us. WE WENT ON VACATION!!!!</div>
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It was a much needed vacation for all of us. We had it planned since January, before Eli really began having issues. Because of his health, we didn't know if we would be allowed to go or if we'd even want to go that far. The Wednesday before the boys' Spring Break began, we were told by two of Eli's cardiologists to go and have fun. We had nothing packed or ready to go. And we had a house to get ready to put on the market. But we did it all! We got clothes packed, got the medication refills ready to go, supplies packed, the house listed, and took off at bedtime Saturday evening. "Funny" story about leaving: We were going to leave Sunday after Z's travel team had a double header. It was cancelled because of the weather, so Bryan and I hustled and got everything ready to go Saturday night, but we didn't tell the kids that. We got the kids in pajamas, had bedtime meds done, teeth brushed, etc. Then instead of telling them to get in bed, we told them to get in the van because we were leaving for Florida! They were ecstatic! Except Charlotte who had already fallen asleep. Everyone gets in the van, we're buckled in and ready to go....and the van wouldn't start! Our battery was dead! So after the we jumped the van and made sure our battery cables were easily accessible, we finally left about 10:30pm! We drove all night and arrived mid morning Sunday. </div>
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We went to Navarre Beach, Florida. It's between Destin and Pensacola. We have been to the Destin area several times, but had always stayed east of Destin. This is west of it. The traffic was so much better in this area. It has the same sugar sand beaches, several attractions in the area, and is close enough to Destin to drive there for the things we wanted to do there. We didn't do anything major, just lots of relaxing and having fun. It was a little cool (not like home where it rained all week long!), but the highest temps we had were 77 one day. Most days were low 70s, but it was windy almost all week which made it feel cooler too. The only thing we didn't do as much as we'd hoped was be in the pool. It was a heated pool, but anything out of the water that was wet was subject to the wind and it was COLD! Eli's poor little hands, feet, lips, and nose were purple in no time. He was shivering and begging to stay even though he was miserable. Once he was dried off and changed clothes he was much happier! He wasn't happy at the beach much either, but at least once a day we'd hear "this is the best day ever!" so I think he managed some fun!</div>
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<tr><td class="tr-caption" style="text-align: center;">Our last day at the beach. Eli was cold and ready to go back, but we made him get in the picture with us. By the grace of God, we were able to have one photo with all five of us looking at the camera.</td></tr>
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Our condo was actually right on the beach. We had to drive across a bridge to get to the grocery store and several other places in Navarre. At the other end of the bridge was the Navarre Beach Welcome Center. Eli found this in one of the tourist books and wanted to go there. We are so glad we went. The playground was fun for all three kids, they had a large pond full of turtles (I counted at least 50 at one point), a butterfly exhibit will open in May, and it was right on the beach so there was a lot of ground for Zachary and Aunt Ashley Veale to explore. We were there for 2-3 hours and only left because we were hungry. Eli chose a pizza place (not sure why because he NEVER wants pizza). It was the perfect choice that day because their special that day was kids eat free with a paid adult. Since we had six adults (me and Bryan plus Bryan's mom, grandma, and two of his sisters) and three kids it worked out well for us. Eli got lots of credit that day for lots of great choices!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinfc6nZTkg93NiXdGUc37y9DOMzlgDJuj3Pc40xobU5x4M9N1609xOOKso31ccSOaU-hf1fBX9k4u-RLuWo2YlxWZI3Wx4u3GPX8azO4D9dn2iwLtxZUwD1Oe4E0U6tTr_jJtATXo2K8Z1/s1600/20180326_115633.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinfc6nZTkg93NiXdGUc37y9DOMzlgDJuj3Pc40xobU5x4M9N1609xOOKso31ccSOaU-hf1fBX9k4u-RLuWo2YlxWZI3Wx4u3GPX8azO4D9dn2iwLtxZUwD1Oe4E0U6tTr_jJtATXo2K8Z1/s400/20180326_115633.jpg" width="300" /></a></div>
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<tr><td class="tr-caption" style="text-align: center;">This is the view from the Welcome Center. You can see part of the bridge on the left. Our condo is the building on the left. From the front of our condo we could see the Welcome Center. From the back of it, was our beach view. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Tired kids, but this is the selfie we took at New York Pizza Depot in Navarre Beach. Great food and great service.</td></tr>
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We all went back to the condo after lunch. Bryan and I were heading back into Navarre to grab some groceries and other supplies. Granny sat out on the balcony watching the ocean. The rest of the group went to the beach. It was too cool to swim, but they wanted to build sand castles and play. Before Bryan and I left we got this picture of all of them on the beach. This was taken from our balcony. </div>
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From left to right: Linda, Ashley holding Eli, Kendra holding Charlotte, and Zachary.</div>
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One lazy morning we were all just playing around as we figured out what to do that day. First picture is Granny, Bryan, Eli and Charlotte just being silly. Later, I was in the bedroom making plans with one of Bryan's sisters. More people kept coming in and we got this goofy selfie of seven of us in the big bed!</div>
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Once we finally made plans, we headed into Destin. The kids wanted to feed the alligators at Fudpuckers and play at the arcade next door.</div>
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<tr><td class="tr-caption" style="text-align: center;">Lots of lazy gators sunbathing.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Charlotte's first time feeding the gators. She loved it! She kept telling us over and over a long story of every move an alligator made before taking her bait.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Eli didn't want to feed them so that was left up to Zachary and Charlotte. He had a great time watching and directing how to do it though. Ashley took my camera and got a picture of the five of us.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Charlotte is squished, but once again, we're all looking at the camera!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgczkfyjzQWJ7IJAezvz_NRQ2Au_kbtmUpYwvUIkYFvOyh8duEENrdkofVlRBfzJsbWP9Jc04YKWC6ud4UrKAOO5FIs0uCt2ra4sW0-h0DnAya0gY_pvyj2zTj-Q4vWxPT_v67B1-uyF5jJ/s1600/20180327_153026.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgczkfyjzQWJ7IJAezvz_NRQ2Au_kbtmUpYwvUIkYFvOyh8duEENrdkofVlRBfzJsbWP9Jc04YKWC6ud4UrKAOO5FIs0uCt2ra4sW0-h0DnAya0gY_pvyj2zTj-Q4vWxPT_v67B1-uyF5jJ/s400/20180327_153026.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See that smile? He did have fun!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ6j-tdvzsHTCM4ZOoRZH-oFVE9rIeKuud64V7HjTAKpqg3z687Vy_1Xq3mxdQZFxdNmiu3de_Dvbw9JBTqG3SGoTZFDGRb4kgrtRwpvKZmytzpCoPtmcmznKyb-7WQpLoeL7WTRU_Wbc-/s1600/20180327_153039.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ6j-tdvzsHTCM4ZOoRZH-oFVE9rIeKuud64V7HjTAKpqg3z687Vy_1Xq3mxdQZFxdNmiu3de_Dvbw9JBTqG3SGoTZFDGRb4kgrtRwpvKZmytzpCoPtmcmznKyb-7WQpLoeL7WTRU_Wbc-/s400/20180327_153039.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goofballs</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ2rjZ2G27WruYg7ypTfk5hY59y8XASdPOk4lOJF2TESMxVEIAeckTdCrlwkthCm9Y23Qe36HiU4a-m4cweprJkJ4uaNBhkqtLOxls2LenhMvXYn-L_CwA71ikKhZ05WnIzbkqwM90EMp2/s1600/20180327_153256.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ2rjZ2G27WruYg7ypTfk5hY59y8XASdPOk4lOJF2TESMxVEIAeckTdCrlwkthCm9Y23Qe36HiU4a-m4cweprJkJ4uaNBhkqtLOxls2LenhMvXYn-L_CwA71ikKhZ05WnIzbkqwM90EMp2/s400/20180327_153256.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charlotte was gatored out by this point, but Eli, Kendra, Ashley, and Zachary posed for a great picture.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidj6d3ywclf5zqQkn6nf2o2X8MKCXrMnhzhgDkqLCEj69vcMzUBfYM7wnoMrwAp49Zy9ofKZqcBlhRYISVwygMPKQIYiH2pAlY0kbROKZaB5FwsQ8YmsQklMIHOGWuwNSLn08UeO62cw72/s1600/20180327_193001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidj6d3ywclf5zqQkn6nf2o2X8MKCXrMnhzhgDkqLCEj69vcMzUBfYM7wnoMrwAp49Zy9ofKZqcBlhRYISVwygMPKQIYiH2pAlY0kbROKZaB5FwsQ8YmsQklMIHOGWuwNSLn08UeO62cw72/s400/20180327_193001.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashley, Eli, Charlotte, and Z looking out at the nighttime view at supper that night. We were at Gilligan's in Destin, which has been one of our favorite places for several years. </td></tr>
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The next day, we were going to go fishing on the pier. The pier was literally next door to our condo. We packed our drink cooler, bait/catch cooler, hats, long sleeves (it was VERY windy), and sunscreened ourselves. We walked across the parking lot and found out they had no more fishing poles to rent. So most of us headed down to the beach while Bryan and Ashley went to the nearby Walmart. They bought two poles and had fun for the rest of the day. Well, mostly had fun. After fishing through the afternoon with some luck, we took a break for a while. Since they had paid for the whole day, Ashley and Bryan headed back to the pier for some evening fishing. They came back about 9pm. They had caught some ocean catfish. One had cut Ashley's middle finger on her left hand. It had bled pretty well, but was a deep cut that actually went through to the other side of her finger. Mean fish. So after a quick supper, she and Linda headed to a local ER. No stitches, but she definitely needed it cleaned well, started antibiotics, and got a tetanus shot. But other than that, they had fun fishing! In addition to Ashley's excitement, as Kendra and I tried to leave to go grocery shopping for that night's dinner, our van wouldn't start again. It was dead, dead, dead. So the next morning, Bryan used his mom's van to jump start ours. Then he took it to buy a new battery. So we got windburnt and a battery on vacation!</div>
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<tr><td class="tr-caption" style="text-align: center;">Zachary waiting at the beach. He is a water bug!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">There was a no swim advisory because of the riptide, but we let him stand where the waves would get him. He was happy with that! On our last day he was able to get the boogie board out and get into the water a while.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Fisherman Zachary</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mommy and Charlotte enjoying the views off the pier</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ0LEkS5M8yA6002u1Pe4MrC9KUYE3qK7nMf6Iuw-l1YnjqOOvTcHE4txdJy0onHbbTtSHv0xcO_o2deWqZUsaQGyprddN4QB9FHYT-dSDWGBre5mN2zzgmBDn2ZntIfrWNTjM4Hh3xcOg/s1600/20180328_131225.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ0LEkS5M8yA6002u1Pe4MrC9KUYE3qK7nMf6Iuw-l1YnjqOOvTcHE4txdJy0onHbbTtSHv0xcO_o2deWqZUsaQGyprddN4QB9FHYT-dSDWGBre5mN2zzgmBDn2ZntIfrWNTjM4Hh3xcOg/s400/20180328_131225.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bryan caused quite a stir when he caught this 16" pompano. Other fisherman around there couldn't believe he caught it using shrimp. That was his best catch of the day.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYijb37gLyMvhLnlCVbh87B0Vve-zc6_thA6QZK34UsgnyoyQwzovRen4SrbxNvTlx38jAWGul8Xl7IAEw-5mFD366qWHUZ-73XNblbHAOD0YReJ7NxUxWi5NYkbqd9j7Yzaq30DSHY-Gb/s1600/20180328_132319.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYijb37gLyMvhLnlCVbh87B0Vve-zc6_thA6QZK34UsgnyoyQwzovRen4SrbxNvTlx38jAWGul8Xl7IAEw-5mFD366qWHUZ-73XNblbHAOD0YReJ7NxUxWi5NYkbqd9j7Yzaq30DSHY-Gb/s400/20180328_132319.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The pompano</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtXCwManeFsvSy48gEWF98gE_RUm_WyVF-ZbF9DUYdu-gSIuPVuClCfldCoaLrAnGhDcWg5ws7s8R9Me4j0qfBCFVdLAx8yS7w-G0JN470bPMio59hZpvGO6dZCP5li5ZsMXewmqXqqsH_/s1600/20180328_133807.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtXCwManeFsvSy48gEWF98gE_RUm_WyVF-ZbF9DUYdu-gSIuPVuClCfldCoaLrAnGhDcWg5ws7s8R9Me4j0qfBCFVdLAx8yS7w-G0JN470bPMio59hZpvGO6dZCP5li5ZsMXewmqXqqsH_/s400/20180328_133807.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of our guys couldn't take it. The fierce wind was too much for Eli and he snuggled up on my lap and fell asleep. He was wearing his long sleeve shirt, a t shirt, Zachary's long sleeve shirt, my long sleeve hooded jacket over him like a blanket, and Kendra's long sleeve shirt on his legs. He slept there for nearly two hours. </td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7hhpveZw3IORRDrqC_MzAoFgBzl6ZrKTiTuBUxlP3RVatgTtWQkdH6qXl_9YQs83cNMJRgYiTxBCc5KftRfA9ErHkf0tZsFmvaNhjGVmFRfpP-GkrSHJRr-txC5jLMjPx54W9DRBrr7Z4/s1600/20180328_165422.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7hhpveZw3IORRDrqC_MzAoFgBzl6ZrKTiTuBUxlP3RVatgTtWQkdH6qXl_9YQs83cNMJRgYiTxBCc5KftRfA9ErHkf0tZsFmvaNhjGVmFRfpP-GkrSHJRr-txC5jLMjPx54W9DRBrr7Z4/s400/20180328_165422.jpg" width="400" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1Ymg3JyoXH8NBz-GQ86uAiShSBTvGeCbBDH_WEhLhMI-AQWuB9CgmNP9c6FD5tj5JnGWbixd3ecCJOSekMU8gF7u0dV-64s0JmRbXxi9Adt2TxLuV0svilX4-VwKpY557YpWIF-AZ1GWa/s1600/20180328_170055.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1Ymg3JyoXH8NBz-GQ86uAiShSBTvGeCbBDH_WEhLhMI-AQWuB9CgmNP9c6FD5tj5JnGWbixd3ecCJOSekMU8gF7u0dV-64s0JmRbXxi9Adt2TxLuV0svilX4-VwKpY557YpWIF-AZ1GWa/s400/20180328_170055.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On our honeymoon, Bryan and I took a sandy feet picture. Since then we've tried to take a sandy feet picture every time we get to go to the beach.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu3QcvEwGmbKc5tOClFn414YSE9d-dkID60uAOjA6UXmKuHOGbNwFhAwSvcYhds7SXFYKL1Gdu7TTdiN1kj5E_SXvnwHz3Y0PmGj32sC_ODoDDlMac5OW__ZvhkF0jXIB53qPNTwrqliEs/s1600/20180328_172003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu3QcvEwGmbKc5tOClFn414YSE9d-dkID60uAOjA6UXmKuHOGbNwFhAwSvcYhds7SXFYKL1Gdu7TTdiN1kj5E_SXvnwHz3Y0PmGj32sC_ODoDDlMac5OW__ZvhkF0jXIB53qPNTwrqliEs/s400/20180328_172003.jpg" width="400" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyA3GSK7f2t1vuFm0LwGdCRRSUYnDZxZDRiVIOc6FVLnAmsnasrubOQrv4CyY4yQzsDAF_bp8XWoSTZc3fPghRnbVu7Wav3lXpWrFwaRp_64RBiiUp62liBaefx7gAbj4bSKxEXBQBV0se/s1600/20180328_172031.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyA3GSK7f2t1vuFm0LwGdCRRSUYnDZxZDRiVIOc6FVLnAmsnasrubOQrv4CyY4yQzsDAF_bp8XWoSTZc3fPghRnbVu7Wav3lXpWrFwaRp_64RBiiUp62liBaefx7gAbj4bSKxEXBQBV0se/s400/20180328_172031.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our photobomber!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpCoiMR3an21zPLI2cc55BrILipSbduwgjjd7jiEFCLYo4o7sXGMVTtkPtftmSTbaba_dRIGlnfRkh7gyAb2j39MvPYQOcFR_L3hUuMUGxZZgIaqCVJY230hVPmuY6z6KYU5SspRSpO28I/s1600/20180328_172044.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpCoiMR3an21zPLI2cc55BrILipSbduwgjjd7jiEFCLYo4o7sXGMVTtkPtftmSTbaba_dRIGlnfRkh7gyAb2j39MvPYQOcFR_L3hUuMUGxZZgIaqCVJY230hVPmuY6z6KYU5SspRSpO28I/s400/20180328_172044.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We got him to quit being goofy for a minute and pose with us.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ84w-ArHJ60T4F2XE9cd81nzTJVUJ9kEo0CzHycuoIoHYy1XOcqqivWOBf4B7ARfxfKiv3JRLTiC0A_EmXsdpzE1Q6-QDy24D8truVte_oMYKvECaOVxo44GAW5ZR4ob7Zj17XEwe4Ktk/s1600/20180328_172207.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ84w-ArHJ60T4F2XE9cd81nzTJVUJ9kEo0CzHycuoIoHYy1XOcqqivWOBf4B7ARfxfKiv3JRLTiC0A_EmXsdpzE1Q6-QDy24D8truVte_oMYKvECaOVxo44GAW5ZR4ob7Zj17XEwe4Ktk/s400/20180328_172207.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charlotte LOVED the water....if someone held her & let her get splashed just a little.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Pzdhwi-2Ob91P5OcNwG2Gn_1L1Jpx9P31jFPnY3BfqFD11v_H8baHKEInS3SXO54PHDwzP2IntsyKPJufby34gcg9TNnU3isZwI0prcR7A-9OwbAzdUySE1KotXKMcdq74reAwQrWNpk/s1600/20180328_172259.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Pzdhwi-2Ob91P5OcNwG2Gn_1L1Jpx9P31jFPnY3BfqFD11v_H8baHKEInS3SXO54PHDwzP2IntsyKPJufby34gcg9TNnU3isZwI0prcR7A-9OwbAzdUySE1KotXKMcdq74reAwQrWNpk/s400/20180328_172259.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy & Daddy with their sweet girl!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtsTDTmnX6T6AdjaPsBtXzvWoYsPtTaflMiN5sPE9-PyTfmwZwii7BCkWU5e_7R2M0uivguDGJOWEcWLFZOhme1LdWWpSkNTDA_wyS69BVIjSgd7Os-gZJDFzJV6O6Tn2zqfsz2PAmyUTx/s1600/20180328_172417%25280%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtsTDTmnX6T6AdjaPsBtXzvWoYsPtTaflMiN5sPE9-PyTfmwZwii7BCkWU5e_7R2M0uivguDGJOWEcWLFZOhme1LdWWpSkNTDA_wyS69BVIjSgd7Os-gZJDFzJV6O6Tn2zqfsz2PAmyUTx/s400/20180328_172417%25280%2529.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Linda with Ashley, Bryan, and Kendra. I made them pose for this, but they all cooperated very nicely!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKVnZPztBI9c6X5yWG_Sqq7cWlpCHUR-h1zrECrHWL7WFmgTkda_1-QdDFkjPo2MMVWk4vsowISoOljjTDKS8kfjr7Smw6dkQSvYG8FDf7f6H5f6HoX92djpjsnYSficbjKO5vnHmuCFQu/s1600/20180328_172511.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKVnZPztBI9c6X5yWG_Sqq7cWlpCHUR-h1zrECrHWL7WFmgTkda_1-QdDFkjPo2MMVWk4vsowISoOljjTDKS8kfjr7Smw6dkQSvYG8FDf7f6H5f6HoX92djpjsnYSficbjKO5vnHmuCFQu/s400/20180328_172511.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Granny with Ashley, Kendra, & Bryan. In Ashley's hand is a crab she tried to give Granny :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVSOGCRkxTryMGjtyzQG0pLybFnK6rhSNKo4gBvjze-umJdPKxhZnes4fyAofX8DxfuPEpKz0Ld8KBi6S85zKmkBqG2NDGtw_sqz4E8xc4NtXhKdZkLcAjg-FVl5g-vlJlpJtLHFeN1LwU/s1600/20180328_172549.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVSOGCRkxTryMGjtyzQG0pLybFnK6rhSNKo4gBvjze-umJdPKxhZnes4fyAofX8DxfuPEpKz0Ld8KBi6S85zKmkBqG2NDGtw_sqz4E8xc4NtXhKdZkLcAjg-FVl5g-vlJlpJtLHFeN1LwU/s400/20180328_172549.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ashley, Linda, Granny, Kendra, and Bryan. You can see our condo in the back. We were on the second level, left side of the photo. Wonderful views.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwYiJYPGu9qxhGft7HtEnwW1bGqcyZRESVaClyzZPCVbFTuo-FjAANEqz6xnMIoniwT9O2F2XYkMwh7EAvMP4cNMvnHmStX9IK9VUzpxAPtJIOSkE_-BpOVQmLdb8sh9vl3AwhPTESv9uR/s1600/20180328_172808.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwYiJYPGu9qxhGft7HtEnwW1bGqcyZRESVaClyzZPCVbFTuo-FjAANEqz6xnMIoniwT9O2F2XYkMwh7EAvMP4cNMvnHmStX9IK9VUzpxAPtJIOSkE_-BpOVQmLdb8sh9vl3AwhPTESv9uR/s400/20180328_172808.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bryan and I couldn't get Eli to pose with the two of us, but we got this one as he pretended to sleep before going inside.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlsxjad1YXdAIltrPXeOpIAWUFt_PsASVSqnpo0HeM0SW4Y2iXiFUciZ6ChKV8XMDYObeUtY9VLZH6tTRHQwDKwB3t8nNf89HNVGcJtzoTVgsMNEvICmKfERZReyKbUYnw9B0wV3fq0ZIg/s1600/20180328_185930.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlsxjad1YXdAIltrPXeOpIAWUFt_PsASVSqnpo0HeM0SW4Y2iXiFUciZ6ChKV8XMDYObeUtY9VLZH6tTRHQwDKwB3t8nNf89HNVGcJtzoTVgsMNEvICmKfERZReyKbUYnw9B0wV3fq0ZIg/s400/20180328_185930.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli and Ashley in our living room. Ashley was getting ready to go somewhere and Eli stole her shoes. He's wearing them in this picture.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtQw-9VGpaykofn3tyz0eBUgUBFoSwgbNtcWLVUsQhqwMRiR4ErvQiffd0yfpKHLLKGNcWLFDrjblcgIHlmFcz8qL-lTUmqxsB-qPEpSKFJOlPtfqrGoHnZ5XIRu6RvyaIrW9UpuEJic6c/s1600/20180329_121711%25280%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtQw-9VGpaykofn3tyz0eBUgUBFoSwgbNtcWLVUsQhqwMRiR4ErvQiffd0yfpKHLLKGNcWLFDrjblcgIHlmFcz8qL-lTUmqxsB-qPEpSKFJOlPtfqrGoHnZ5XIRu6RvyaIrW9UpuEJic6c/s400/20180329_121711%25280%2529.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli and Charlotte relaxing on our balcony.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlNidV92vEsuAqoyrJTRe_HqOIxumx_UF3L9h-Y8PFxvH3r14QCp1wyR6PtP28HFft2faJffNcjxnIj7KU3vQA-YMbCrG3xTHhdFvCP6rFKVVHO56UrvyrWHrdW6hXGUMvlFh_nCIM2Xex/s1600/20180329_152110.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlNidV92vEsuAqoyrJTRe_HqOIxumx_UF3L9h-Y8PFxvH3r14QCp1wyR6PtP28HFft2faJffNcjxnIj7KU3vQA-YMbCrG3xTHhdFvCP6rFKVVHO56UrvyrWHrdW6hXGUMvlFh_nCIM2Xex/s400/20180329_152110.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One afternoon we went to a dinosaur themed miniature golf and arcade. Since we had done an arcade a couple days before, we just golfed and got some cool dinosaur pictures.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil4rFJy2fNcxsm-y7o102DVPyhBwzyzE3ke5aTw1HabOIB4rYQhCtw-d7CEO-wrSBdDF4a2bzQdCM-5upipXe4xiBR57RI6W8g2QYnvoCezm3ZlmExozrm2Yyjw7F_PMs0xdK99owbpbDx/s1600/20180329_160030.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil4rFJy2fNcxsm-y7o102DVPyhBwzyzE3ke5aTw1HabOIB4rYQhCtw-d7CEO-wrSBdDF4a2bzQdCM-5upipXe4xiBR57RI6W8g2QYnvoCezm3ZlmExozrm2Yyjw7F_PMs0xdK99owbpbDx/s400/20180329_160030.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Turns out Eli is a pretty serious golfer!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPfzbrgd-Vqd68r_RZULPgZqkV-ep6BhZZ6em-hsiybRXUAjSjordfPD9SZ2DWALdwo8-toW5X1qwSmsvPrmHbxWiIgRusKjaq3Lj39N_vsUpguR_0-SnFFi8sMVFQ1LH40q8YDgyQJQ6l/s1600/20180329_162540.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPfzbrgd-Vqd68r_RZULPgZqkV-ep6BhZZ6em-hsiybRXUAjSjordfPD9SZ2DWALdwo8-toW5X1qwSmsvPrmHbxWiIgRusKjaq3Lj39N_vsUpguR_0-SnFFi8sMVFQ1LH40q8YDgyQJQ6l/s400/20180329_162540.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lots of dinosaurs along the golf course. Thankfully we all made it out alive.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUMNHD3sCs6Pej9ygOXM_NeV2AmOiQlR7Q3lRCVsU0-eRiGK6oLJc0CkdZeD4bFUZUhHDZOOCDOVdK1HN4SsjupabMBhVxd_NbOA1h2Z5PXy2zTNllwa53-ho2vPgyCXhEdX3K76d0ro3P/s1600/20180329_184403.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUMNHD3sCs6Pej9ygOXM_NeV2AmOiQlR7Q3lRCVsU0-eRiGK6oLJc0CkdZeD4bFUZUhHDZOOCDOVdK1HN4SsjupabMBhVxd_NbOA1h2Z5PXy2zTNllwa53-ho2vPgyCXhEdX3K76d0ro3P/s400/20180329_184403.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After golfing, we shopped at the outlet mall nearby. Eli got comfortable watching something on Kendra's phone while Z tried on new shoes.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc6sPXkLtsQjipCOVbNW8kwR-_pzvF88oXz_YpOQX6VN8-IyasUiUCra5IuTQsXggby6CxCwPUIVFIRrNZ8iRTB5ZHugpt_LKq_JUT3NULzSDP3zq14g51DCxrRwbN9yDw4AbxOtW5aRPV/s1600/20180329_184824.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc6sPXkLtsQjipCOVbNW8kwR-_pzvF88oXz_YpOQX6VN8-IyasUiUCra5IuTQsXggby6CxCwPUIVFIRrNZ8iRTB5ZHugpt_LKq_JUT3NULzSDP3zq14g51DCxrRwbN9yDw4AbxOtW5aRPV/s400/20180329_184824.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bryan and Zachary. Can you tell whose foot is whose? If not, it's because they're wearing the same size now! Zachary was wearing men's 10.5 when we walked in the store. I decided to check and see how much room he had left in those only to find his big toe was hanging over the edge! So we began trying larger sizes and wound up with a 12. He and Bryan are in the same size shoe....for a few months anyway! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7YjiJApl07vthXgVYXCuaFx6cXXDrcDIod02F6h9as3ULhxc2WFmi17CScfX9f4DBnyqFI6aTYbeO_6sCw5IwcCOnhgByIdsTwfyrei4l375RgppLrvsl8TmOBcYeWQK8AUzlHtnq7_Et/s1600/20180329_185300.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7YjiJApl07vthXgVYXCuaFx6cXXDrcDIod02F6h9as3ULhxc2WFmi17CScfX9f4DBnyqFI6aTYbeO_6sCw5IwcCOnhgByIdsTwfyrei4l375RgppLrvsl8TmOBcYeWQK8AUzlHtnq7_Et/s400/20180329_185300.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">As we waited for Bryan to pay for our purchases, I commented how the mannequin's pose was so unnatural. So Kendra mimicked the pose!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioW4R2_4zw2Is9dECzrTzdtoC-AigQI5gfnEJmcI9V9tbNFOoQCD9A2Lomg7dwoBQTv-QrUOnBC_9Kq5iRjsKsmPuH_HmCVAPc38bB_nQB9SfyBg-_gUu9Q1wbVF9tG5wPkLUh0OvwW2dW/s1600/20180329_185322.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioW4R2_4zw2Is9dECzrTzdtoC-AigQI5gfnEJmcI9V9tbNFOoQCD9A2Lomg7dwoBQTv-QrUOnBC_9Kq5iRjsKsmPuH_HmCVAPc38bB_nQB9SfyBg-_gUu9Q1wbVF9tG5wPkLUh0OvwW2dW/s400/20180329_185322.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Then Zachary did!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXPrx6sGehoO7Thzwkt3tReY4U1Q3rUWArQ_tVLS6jNiTtXmxpsMXz8_9h_E6TCxQfC4Oxz_B7lXSCEdkRlCJJJZ01ohqMMrV3yyaIbQtQ2LhnWjkAUZjFiq8CBVdgul9CNWXSuRYlD6ph/s1600/20180329_185356.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXPrx6sGehoO7Thzwkt3tReY4U1Q3rUWArQ_tVLS6jNiTtXmxpsMXz8_9h_E6TCxQfC4Oxz_B7lXSCEdkRlCJJJZ01ohqMMrV3yyaIbQtQ2LhnWjkAUZjFiq8CBVdgul9CNWXSuRYlD6ph/s400/20180329_185356.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Then Eli did!</td></tr>
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<div align="center">
On our last day in Florida, the weather was really nice. We went to the National Naval Aviation Museum in Pensacola. We've been a couple times before, but it's always fun. And it's free! That afternoon we spent at the beach. It was getting cool, but we played in the sand and prepared ourselves to leave the next day. Even though our weather was slightly cool, it was a wonderful vacation that we really needed. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNbn4b7dPDaXEEGGKCHh8utDonUrEKNxbgEJJMBvYS-jqTIjioSy9Hg5Mad2WZfs_gIEqbm0PuGtoJK2Y4UywIb4D1U2o9_vnGWaALcta4RPT80YK2tedVzsAnpwmlaKcN0G6gU_v7UIbV/s1600/20180330_132133.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNbn4b7dPDaXEEGGKCHh8utDonUrEKNxbgEJJMBvYS-jqTIjioSy9Hg5Mad2WZfs_gIEqbm0PuGtoJK2Y4UywIb4D1U2o9_vnGWaALcta4RPT80YK2tedVzsAnpwmlaKcN0G6gU_v7UIbV/s400/20180330_132133.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary asked for my phone so he could take this picture. It's in the belly of a submarine. This particular area was where someone would sit to intercept and translate Japanese telegraphs. The clipboards on the wall and desk have directions for translating. After seeing the picture he took, I asked Zachary what specifically about this interested him. Was it the map? The machinery? The idea of being in there, doing that kind of work? "No, Mom. I thought this was funny" as he zoomed in on my phone to point out the pinup photo hanging on the wall (left of the clipboards). Ugh!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My loves. </td></tr>
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So there's a little bit of our trip. It was mostly relaxing (as relaxing as vacationing with three kids can get!), it was a lot of fun, and it was very appreciated to be able to get away from things for a while. Thanks for reading and remember to cherish Every Little Beat...Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-89643180367229700112018-01-28T19:58:00.001-05:002018-01-28T20:27:08.446-05:00Cardiac Update<div class="separator" style="clear: both; text-align: left;">
Well, a year and a half ago I published about Eli's first day of kindergarten. Then life happened and I chose to live in it instead of documenting so much of it. I wish I had blogged more, but by not blogging, I did get more sleep and playtime with the kids!</div>
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Eli has some things coming up and I thought it was time to update here. Two years ago we saw Dr. Steinberg who is one of Eli's cardiologists. Basically he is Eli's pacemaker doctor. Now Eli does not have a pacemaker, but he did at one time. Because of the staph infection he acquired, the pacer had to be removed which fortunately was an option for Eli. Without the pacemaker, Eli's baseline rhythm is called a junctional rhythm. I won't get into all the details of it, but in layman's terms, it basically means his heart rate is much lower than that of a heart healthy seven year old (yes, he's seven now!!!). Eli's average heart rate is 58 beats per minute, but can go much lower. For example, when he's sleeping he will drop to the upper 30s. Those are low numbers for an adult, but especially for a kiddo Eli's age. However, Eli has always tolerated that rhythm pretty well so as long as he's asymptomatic, we just let him go. Because he's done so well with it, Dr. Steinberg said for Eli to continue follow ups with his regular cardiologist (Dr. Kumbar) every six months and not to see him again for two years. <br />
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So we've seen Dr. Kumbar every six months. Once a year Eli wears a Holter monitor for 24 hours (like an EKG that shows his heart rhythm for a full day) and he has an echocardiogram (an ultrasound of the heart that shows the vessels, chambers, Fontan structure, and blood flow). Our most recent appointment was the middle of January and it was with Drs. Kumbar and Steinberg since it had been two years. Eli's echo looked pretty good. Dr. Kumbar said it was essentially unchanged from the year before (which had very few changes from the year prior to that). So structurally his heart is in pretty good shape (for a kiddo with his type of defects). <br />
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However, the Holter monitor showed a different story. Eli's baseline heart rhythm is still that junctional rhythm. But now he's having some runs of a different rhythm. Previous Holters showed that too, but it was just two or three beats here and there. This Holter showed he's sustaining that rhythm for 2-3 minutes and it's happening a couple times a day. They're saying this rhythm is an atrial tachycardia, which just means a fast heart rate initiating from the atrial part of the heart (upper chambers) instead of the area it's supposed to come from. When he's in this rhythm, his heart rate is around 200 beats per minute. The good news is that Eli doesn't show any physical signs of going into or out of this rhythm. However, it's not a good rhythm to be in and we can't expect him to stay symptom-free from it. And it's also not good for him to slip into and out of that rhythm. It's too much stress on his already stressed heart.<br />
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Long story short, we are likely looking at Eli having the pacemaker placed again. Before going that route, Dr. Steinberg wants to try to control it with medicine first. If we can do something simple to control it, of course we need to go with that. So Eli is now on a beta blocker once a day. He's been on it for a week at a low dose. The goal is for him to be on it at this dose for two weeks then double it. After two weeks on that dose, then add another half dose to reach the maximum dose for his weight. The reason he's being slowly acclimated to this is because the medicine has the potential to lower his already low heart rate. His average is 58, with this medicine it could easily be lower than that. He may or may not tolerate an average rate lower than what he's already at. So while on this medicine we have to watch him very closely to see how it is affecting him. Because he's at school most of the day, we've had to add to the workload of his teacher and school nurse to make sure they're aware of what's going on with him and have them help us watch for symptoms. What symptoms? Most likely it would be excessive tiredness. His low heart rate would not provide enough blood flow to keep his energy level up. <br />
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After six weeks, he will have another Holter monitor to see if there's any change to his rhythm. If he has any trouble adjusting to the increased in medication, then the Holter will be done sooner. If Eli doesn't tolerate this beta blocker, Dr. Steinberg said there is another medication he could try. It's a lot stronger and to start it, Eli would be hospitalized to closely monitor him as he has the first few doses. We're hopeful these medications can help him, but realistically we know he will require a pacemaker again at some point. We'd just like to keep pushing that off as long as we can, but will do it whenever Eli needs it. One benefit of having the pacemaker is that Eli wouldn't have to do the Holter monitor anymore. The pacemaker would record everything and the doctors could read the reports from that instead of having additional testing. <br />
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In slightly unrelated news, Eli is having some dental work done tomorrow (Monday). Peyton Manning Children's Hospital doesn't have a pediatric dentistry department, so we are going to Riley. Eli has a large cavity that has to be taken care of soon. In addition, he has a couple smaller ones and needs some sealants. The doctor feels like it's possible to get it all done as an outpatient with nitrous oxide (laughing gas) and cardiology has okayed the plan. If he requires anything more than the gas, he will need to be hospitalized and have the work done under sedation. The plan is to get it all done as an outpatient tomorrow, but it could change depending on his cooperation level and if she finds any other work that needs to be done more invasively. <br />
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As usual, thank you for your prayers and support. Eli is a happy first grader who is learning to read. He's doing pretty well in school although it takes a lot of patience to get him through! Our family recently moved (just last weekend! I really need to blog about that!) and we are beginning to get settled in our new home. Eli is playing YMCA basketball this season and his first game is next Saturday. He is very excited for it and is also excited for baseball this spring. He still loves sports! He's recently developed a love of video games too. We're seeing that as a good thing as he has to use Lefty some to use the controller. He gets very animated during his video games (usually basketball, football, or hockey games) and is funny to watch. <br />
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I promise to not wait so long between posts. Thankfully we've not had anything major to update regarding his health until now. Thank you for following along and caring about us!<br />
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<tr><td class="tr-caption" style="text-align: center;">Not a great picture, but it's the last photo of us in our old house. It was the morning of the move and everyone had to crowd into our bed....yes, Pablo is still an important part of our life!<br />
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Getting his vital signs before his echo. You see the blood pressure cuff on his left arm. His hands were cold so we had trouble getting an accurate pulse ox. She used one that went on his ear to get a better reading. If you look at the box, it's showing Eli's pulse ox of 90% and a heart rate of 59. Both those numbers are pretty average for him.</div>
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This was toward the end of the echo. Eli's Fontan circulation isn't just 'at his heart' as many would think. It involves vessels going to his lungs and the tech has to get up under his neck to get all the images the doctors need.</div>
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After Eli's initial dental consult a few weeks ago, we visited the Pacers Pro Shop. While there, we found a deal on this outfit and had to get it. We got the same deal on a cheerleader outfit for Charlotte and they each got a new Pacer basketball. Eli is extremely proud of his new outfit and wants to wear it all the time.</div>
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Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-47649853235955677042016-08-04T15:58:00.000-04:002016-08-04T15:58:31.003-04:002016-2017 School Year BeginsIt's been a long time since I've posted here. I often think about it as different events occur, but I have opted to spend time with my family rather than at the computer. But today is different. Today I must inform you of the latest news in our family. <br />
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Today is Eli's first day of kindergarten! That's right, Eli is in kindergarten and Zachary started third grade! Our babies are growing so quickly!<br />
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Getting him ready for kindergarten has been a long time in the making. He had two years of preschool (both years were at developmental preschool and one year was also at a regular preschool). Through the summer he attended weekly tutoring sessions just to get some extra help with his letters, phonics, and other aspects. He is still in outpatient therapy and a lot of the therapy has been geared toward kindergarten prep such as cutting, walking stairs, managing his backpack and lunch box well, and playing safely on the playground equipment. Eli will continue to have PT and OT through school services and we've opted to also continue his outpatient therapy (pending insurance approval) for the time being. Back in April we had a meeting with several members at his school about him and what needs we could anticipate him requiring before starting kindergarten. We've planned and prepped as much as we can, now we are at the point that we see how it goes and adjust accordingly. The most important thing is that Eli is in an environment that we are comfortable with and with people who are very welcoming to him. The boys love the fact they are in the same school now. Last night at Open House we found out the 3rd grade and kindergarten recess times overlap, so they'll get to see each other some in the middle of the day!<br />
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We wondered if Eli would be upset when it came time to actually leave him at school. The first couple days, parents are allowed to walk them into the classroom so that's what I did. After a hug and a kiss he got settled at his table. I snapped a picture or two (didn't ask him to look at me because things were going well and I wasn't going to chance making him mad!!!), then I left. He waved bye to me, but was fine! Once I got to the van I had a few tears. Not a bunch, but just tears of thankfulness for many things. Mainly for the fact that he has overcome so much and worked so hard to get to this point. Also because of the willingness of so many areas of the school staff to be excited for him to be there and work so hard to do what is best for him. Thankful for the boys being together and for me to have this one on one time with Charlotte. There are many more things I'm thankful for about this, but those cover the major points!<br />
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Enough sappiness (for now!). Here are some photos of the boys as they start the 2016-2017 school year! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnJFHQb7bivzHKJAxXrCGSoFi6bBOBYnHHticoN9Nm6VsLEaMj6zmWB6d1RiOnMzV4e2VWh8M4PSh7dEjo4L637uN7tHx83X11dEtmmsFIwXe6KNa-Cs3tE9Td4XfjjAkoQoHMftfhWtCt/s1600/20160707_081509.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnJFHQb7bivzHKJAxXrCGSoFi6bBOBYnHHticoN9Nm6VsLEaMj6zmWB6d1RiOnMzV4e2VWh8M4PSh7dEjo4L637uN7tHx83X11dEtmmsFIwXe6KNa-Cs3tE9Td4XfjjAkoQoHMftfhWtCt/s400/20160707_081509.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli working with Ms Brooke (one of his therapists) on the school playground this summer. We were trying to get him used to the playground equipment before it was full of other kids trying to play as well!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0l-sEChZzgAsRhhd-XeorTaKUzscft0VM06QwTXJQjsl9Uon7R6YuDJhbDu7XtIl8byvVK9U1DtPdtrJYwcvWZ0ad97eT5054_p8J9XE0h-c0EC7w-NUKPi0CS56iMrvQxg20XSF7s4Ex/s1600/20160707_082654.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0l-sEChZzgAsRhhd-XeorTaKUzscft0VM06QwTXJQjsl9Uon7R6YuDJhbDu7XtIl8byvVK9U1DtPdtrJYwcvWZ0ad97eT5054_p8J9XE0h-c0EC7w-NUKPi0CS56iMrvQxg20XSF7s4Ex/s400/20160707_082654.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Working hard on this curved ladder!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxBbyITyEVtTi4gGeo7rJBp6CjpwXXPIYqBiZqubRk26V3RFCBdrX0UmJ-se113vUAnG3HgcxB9-oFJ08GnPLSh1STeLqc0shzSax4OSdGwzWG3VjWmAxXM2V3hRAh0zBBO4Jb6ZVsd7uf/s1600/20160707_082830.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxBbyITyEVtTi4gGeo7rJBp6CjpwXXPIYqBiZqubRk26V3RFCBdrX0UmJ-se113vUAnG3HgcxB9-oFJ08GnPLSh1STeLqc0shzSax4OSdGwzWG3VjWmAxXM2V3hRAh0zBBO4Jb6ZVsd7uf/s400/20160707_082830.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Almost there, Eli! He worked really hard that morning and we learned a lot about what he was and wasn't comfortable with.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHwChocFcVa_iknqXLqtf7rT3UMB7W9OcCjiBx7wZhEsKVraT0xYrzrIcLvGtDLEPABNyPtxDJ1YRT7rZZMg0og14a6A5hpEY9bI-HsTSEqZ3FSrv_YOFDbZGdSP5zvywM_AUQgw13rLQ3/s1600/20160707_083024.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHwChocFcVa_iknqXLqtf7rT3UMB7W9OcCjiBx7wZhEsKVraT0xYrzrIcLvGtDLEPABNyPtxDJ1YRT7rZZMg0og14a6A5hpEY9bI-HsTSEqZ3FSrv_YOFDbZGdSP5zvywM_AUQgw13rLQ3/s400/20160707_083024.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Making his way across the suspended bridge.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh891CvUrPw-yZjZvtttdzUS7gbsvWidkTuiRB4eme7OhW-YdAMWjT1WJ4T1A66xBvcLIq3NJ0R9YOD8ihjPq2zBlGQSClRa0GQySLO8JTW_cx1ftCZqxTU_I98Azb0TtyWI0U0n-s3hK6L/s1600/20160803_184329.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh891CvUrPw-yZjZvtttdzUS7gbsvWidkTuiRB4eme7OhW-YdAMWjT1WJ4T1A66xBvcLIq3NJ0R9YOD8ihjPq2zBlGQSClRa0GQySLO8JTW_cx1ftCZqxTU_I98Azb0TtyWI0U0n-s3hK6L/s400/20160803_184329.jpeg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary with his third grade teacher, Mrs. Wadsworth. The glasses on top of her head make her taller than him for now! Eli had to get in on this picture, but wouldn't let me take one of him with his teacher!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIlLuEPuLyKAT09d17tyO7HS17wqW73fFo7BhiU9O2c4oWFmisEsVEUFy3bclXjkXwa_whK7eDWG46dqch-6XI8PFC1t0OCQ8XIjdNKYBNuXD1Pmu8hjATh51WI0QtFB1eDAGGOUccp9Qe/s1600/20160803_190527.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIlLuEPuLyKAT09d17tyO7HS17wqW73fFo7BhiU9O2c4oWFmisEsVEUFy3bclXjkXwa_whK7eDWG46dqch-6XI8PFC1t0OCQ8XIjdNKYBNuXD1Pmu8hjATh51WI0QtFB1eDAGGOUccp9Qe/s400/20160803_190527.jpeg" width="225" /></a></td></tr>
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Some major attitude coming out of this one the night of Open House. I had to plead, bribe, and threaten for this picture.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihf39-kTearvXyiM-J_e64argCApN6qjYB-ewnxYx2MwUsZLaqIbWcM8v8kCgiGFQqiMpuesgNp2JiuTSf48BESFVWOuzLqvgXH7Jo6uRdmB-gR_RUglncJONMlRnn8g4CzLeUXyf0qctU/s1600/20160804_075037.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihf39-kTearvXyiM-J_e64argCApN6qjYB-ewnxYx2MwUsZLaqIbWcM8v8kCgiGFQqiMpuesgNp2JiuTSf48BESFVWOuzLqvgXH7Jo6uRdmB-gR_RUglncJONMlRnn8g4CzLeUXyf0qctU/s400/20160804_075037.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our third grader! He's getting so grown up!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-IJynC9bsaJmTkfUf_qSR_g0bwwTXrewKjN7FQSLgLEB6VVZMT1HUlOTUDJYDDKOluxeOoBeh1npa88e4uYkGCfmFmPeeqY3aN-lA8QJOS2YpwxdK5_t9euYkdtcowVhamX52Gb-RdRPU/s1600/20160804_075213.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-IJynC9bsaJmTkfUf_qSR_g0bwwTXrewKjN7FQSLgLEB6VVZMT1HUlOTUDJYDDKOluxeOoBeh1npa88e4uYkGCfmFmPeeqY3aN-lA8QJOS2YpwxdK5_t9euYkdtcowVhamX52Gb-RdRPU/s400/20160804_075213.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's a little more photogenic this morning!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-srJxRydAK4WiAAck5BnJRny2Pm7Ue0QqxzX7icCxbBqcwcDj_C92PANLJO9Hrb0lyUyBV21wVPa0URKB4wtREqeXfG6OPyXvX1NDs647laElchRqhLS0DxpmxmDomtXZRhUYr6QkYGtp/s1600/20160804_075616.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-srJxRydAK4WiAAck5BnJRny2Pm7Ue0QqxzX7icCxbBqcwcDj_C92PANLJO9Hrb0lyUyBV21wVPa0URKB4wtREqeXfG6OPyXvX1NDs647laElchRqhLS0DxpmxmDomtXZRhUYr6QkYGtp/s400/20160804_075616.jpg" width="201" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goodbyes for baby sister before the first day.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgscdBEEmeSqlIz5xGkJ6qB7G5K0MStrdRWfFS_BytZXDZlFFdhDvOM0PlUCqGCO55j3GyGsrORVHtqbH5FiDb3aPB3iF8CXML2bUJy1Gio9piBFyt13idYy006jnYQ_psJBiP3UGLFYV5F/s1600/20160804_081148.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgscdBEEmeSqlIz5xGkJ6qB7G5K0MStrdRWfFS_BytZXDZlFFdhDvOM0PlUCqGCO55j3GyGsrORVHtqbH5FiDb3aPB3iF8CXML2bUJy1Gio9piBFyt13idYy006jnYQ_psJBiP3UGLFYV5F/s400/20160804_081148.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At his table checking out his classmates. I didn't dare ask him to look at me or smile!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHYTtoSY1XP7wrlObBToo_ALtGOwj-srmSrg1cqDm7GGEi9_KVtqxZonuS2SGxgmtkWmMFtxBaAsa95Is_46_R4bLpzhNGqiZtSVftwkV4J4AINcdo6_VxyIftBFy-m7e8CEoWn8Hnrcuz/s1600/20160804_080420.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="280" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHYTtoSY1XP7wrlObBToo_ALtGOwj-srmSrg1cqDm7GGEi9_KVtqxZonuS2SGxgmtkWmMFtxBaAsa95Is_46_R4bLpzhNGqiZtSVftwkV4J4AINcdo6_VxyIftBFy-m7e8CEoWn8Hnrcuz/s400/20160804_080420.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div>
💚💙 Be still my heart 💙💚</div>
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I pray they're always close and look out for each other. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifHjMWxpl2lpgNn0DjoVKss9cw8ts1tx-Js9DkAE9-2iigi2TleydWlMjgapVfJdkWnhk11Ccdl4PwPq47GPawywVSgeAEca9JXIZ_q9FNsqP0NTs6N4sTlqKQ6cr7bQb5iiRv1Yu4-07h/s1600/20160804_144609.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifHjMWxpl2lpgNn0DjoVKss9cw8ts1tx-Js9DkAE9-2iigi2TleydWlMjgapVfJdkWnhk11Ccdl4PwPq47GPawywVSgeAEca9JXIZ_q9FNsqP0NTs6N4sTlqKQ6cr7bQb5iiRv1Yu4-07h/s400/20160804_144609.jpg" width="226" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">To reduce traffic congestion, the school has staggered release times for car riders and walkers. Kindergarteners are let out first, then groups of siblings, and lastly the rest of the car riders and walkers. For a couple days, Eli will be leaving just a few minutes before the other kindergarteners so he can get accustomed to the hallways and routine before having to navigate it with the other kids around him. Today, Zachary was released with Eli and I got this precious picture of them coming out together. Zachary was using Eli's lunchbox to shade him from the intense sun. Such an amazing big brother!</td></tr>
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The first day was a success! Neither boy had any disciplinary reports in their folders, no blood was shed, and they both plan on going back tomorrow....I don't think it's fair to ask for much more on the first day!!!<br />
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Everyone, please keep all students, teachers, administrators, and school staff in your prayers as this 2016-2017 year begins. There are so many negative things in the world these days and school should be a safe, fun, productive place for everyone.<br />
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<b><i><span style="font-family: "verdana" , sans-serif;">~~~~~~ The days are long, but the years are short ~~~~~~</span></i></b></div>
<br />Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-27867201482500654092016-01-05T16:06:00.003-05:002016-01-06T10:02:34.019-05:00Five Years...and Counting!Five years ago today, Eli was ten weeks old. Exactly ten weeks old. We took him to the doctor for his 2 month check up. We had a few other questions in addition to his routine check up. He'd been vomiting a lot. No, it wasn't spit up. He was vomiting. There was no rhyme or reason to it. He might vomit a few minutes after a feeding, hours after a feeding, during a feeding, or he might go days without doing it. He didn't seem to be gaining much weight. Also, he was sleeping more. But when that beautiful, brown eyed baby was awake, he was so alert! He followed us around with those eyes, he knew who we were, he knew his big brother, and he was smiling at us a lot. He had wet diapers, he had poopy diapers, he took a pacifier, and he nursed well with the exception of the two days before the appointment. So we weren't overly worried...but we were still worried.<br />
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Five years ago today, I took him for a check up. There, we found out not only was he not gaining weight anymore, but he had lost weight! He was 8lbs 12oz at birth. We know he got up to about 9 1/2lbs. Five years ago today he was 8lbs 5oz. He weighed less than he did at birth. Later that day, he was admitted to our local hospital. Later that night, after a chest x-ray showed his enlarged heart, he was transferred by ambulance to St. Mary's in Evansville. A few hours into the next morning (really the middle of the night), we had a pediatric cardiologist standing in front of us drawing pictures of a normal heart and pictures of Eli's heart. Those pictures were so different from each other it was terrifying. (Yes, I still have those drawings!). Even more terrifying than her pictures were some of her words, such as "open heart surgery" and "survival rates". Less than 24 hours after our appointment Dr. Amy's office, Eli was baptized and loaded into a helicopter to be transported to Indianapolis. Bryan & I drove home. We had to pack and make arrangements for Zachary before we headed to Indy.<br />
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Once in Indy, we were given more information. A lot of information. Information we didn't want but had to face. Surgery was inevitable, but his case was very complicated. They had never seen or heard of a ten week old baby just receiving a diagnosis like his. (Not 100%, but I'm not sure they have since then either). Doctors needed to confer and determine which surgery would benefit Eli the most. Surgery was set for January 10. In the meantime, we waited. We held him, we kissed him, and we watched him. Basically, we watched him deteriorate. He was dying. In the few days between his diagnosis and surgery, we saw his energy level plummet. He was being tube fed because it took too much energy for him to eat. He was on multiple medications that were slowly increased as his heart function decreased. We told him goodbye, not because we thought he would die, but because we knew there was a chance (a one in three chance) that he wouldn't come out of the OR. So, yes, we had to tell him goodbye, just in case that happened. As we did that, every fiber of our being was pleading and begging with God to let him live. <br />
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I won't go into more details of the next five years because most of you have been following us that long. Let's just say he made it out of that OR. And through three more heart surgeries. And battled a staph infection for over a year. And has had a tough road to recovery from massive strokes. And has been in multiple therapies for well over half his life just to keep up with developmental milestones and stroke rehab. And has had many, many echocardiograms, heart catheterizations, blood draws, doctor appointments, and countless other procedures and tests.<br />
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But he's alive. And just this morning, on the fifth anniversary of the appointment that began this journey for us, he got dressed almost completely by himself. He's been pretty consistent doing his pants, socks, and underwear (YES! He's fully potty trained now!!!). Shirts are harder for him because of the limited range of motion of his left hand and arm, but today he took initiative. He asked for help getting his pjs off his right arm, but then he removed his shirt alone (he has done that before). Then, this is the exciting part, he put on a long sleeve shirt BY HIMSELF! It took a while and he asked a few times for help. I showed him how to do it, but then started him back at the point he was at before asking. After several attempts, HE DID IT! Let me tell you, once this kid decides to do something, he can accomplish anything. <br />
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So, for those of you who think you're having a bad day, suck it up. No, I don't mean all the time. Everyone is allowed a complaint now and then. But, overall, get some perspective and suck it up. If that five year old can go through the hells he's been through and still smile, tell jokes that make no sense, and laugh, then I promise you'll get through your bad day. (That little speech is directed at myself too. None of us are exempt from feeling sorry for ourselves, but we all need to learn to handle it better.)<br />
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The following are a few pictures from the night before Eli's first surgery. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQsDE76K292O8dNMCv_EtDcifSn-vWCvqVyqAo85wpo_gS9w_2NzC3WkzKPhFjp_3wO0KX2YoYXa-ju2spz1hX5aav4kHykIhXfMEfMccwE4-6Mh-g4eucLPf4Zea6RfsKDXJmXh5Fiv3D/s1600/100_1878.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQsDE76K292O8dNMCv_EtDcifSn-vWCvqVyqAo85wpo_gS9w_2NzC3WkzKPhFjp_3wO0KX2YoYXa-ju2spz1hX5aav4kHykIhXfMEfMccwE4-6Mh-g4eucLPf4Zea6RfsKDXJmXh5Fiv3D/s400/100_1878.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary was 3 years old and didn't really understand what was going on. We told him he didn't have to, but he could kiss Eli bye before he left. Zachary immediately wanted in bed beside him and snuggled his baby brother. The tubes and wires didn't phase him a bit.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">We were so afraid this was our last family photo. Bryan and I don't look the greatest here, but we had both our boys with us and nothing else really mattered.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The last picture we had of him before he was taken to the OR. Obviously neither of us had any sleep the night before but we needed to take as many photos as possible and give him one more kiss again and again and again.</td></tr>
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This was just hours after the surgery he wasn't supposed to survive. I realize it's very hard to look at him with all these machines, wires, IVs, and monitors, but please understand how exciting it was for us to see all that. If he didn't make it, none of that would be there. Each thing was an important piece to his well-being. And honestly, we didn't even notice most of it, we just saw our perfect baby boy with a beating heart!</div>
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And this is the boy wonder who wouldn't pose for a picture today. He's the most stubborn, head strong, and determined to get his own way boy I've ever met. And I'm so thankful for those qualities because those (along with all his good ones!) have made him the fighter that he is!</div>
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As always, thank you for reading. We are grateful to have your support on this journey. Please continue to keep us in your prayers. Who knows what the next five years will bring. Heck, some days, it's hard to make it five minutes at a time! Thank you and remember to cherish Every Little Beat...Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-46161893783584239132015-12-31T00:53:00.001-05:002015-12-31T01:26:30.716-05:00Happy Holidays? Not All the TimeThe holidays are a tough time for many people. I'm becoming one of those people, but not necessarily for the same reasons as many others. The holidays are supposed to be about families spending time together, being thankful for our many blessings, and for celebrating. Well, I do all those things and I do them joyously, but in the back of my mind I am remembering our holiday season five years ago. You see, Eli was born in late October 2010. We had a wonderful Thanksgiving together. Our first Christmas as a family of four was so much fun! Christmas with a baby is always special. We rang in the new year with dear friends and were excited to start 2011. <br />
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Five days into the new year, Eli was diagnosed. Our lives were forever changed. Please don't get me wrong, I am and forever will be grateful that I can say he was diagnosed and not have to say he died. It's truly a miracle (not a phrase I have ever used lightly) that he lived as long as he did before finding out something was wrong.<br />
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However, I cannot look back at any pictures from the holiday season of 2010 without feeling some sadness. I see his sweet little face with those beautiful dark brown eyes and chubby cheeks and I search. I search for a bluish tint to his lips or fingers. I search for signs of not growing appropriately. I search for a listless, sleepy baby who was, unknown to us, fighting for his life.<br />
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It's not that I think I personally missed something or am looking to place blame on anyone else. I just have a lot of conflicting feelings about that time. Mostly I just remember how carefree we were. Yes, we had two young children so that came with a lot of stress & worries, but they weren't life or death worries. Looking at those pictures I remember being thankful for my little family, but these days I feel like I have even more insight about what it means to be thankful. Every day is a gift. Every hour, every breath, every single thing said or done, is a gift. In those pictures, I see the innocence we once had. The baby in my arms had a body without scars. He was unblemished and perfect. But looks can be deceiving. He was fighting a fight none of us knew about. Fortunately for us, he is stronger than we could ever imagine. Fortunately for us, we were able to figure it out before it was too late. Fortunately for us, we had access to the proper treatment so we could help him fight. <br />
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I wish Eli didn't have to fight so hard. He's had to fight for so many things, and had to fight for many of them multiple times. Nearly every child learns to walk, talk, & eat, but not every child has to learn to do so twice in their lifetime. Both times were with the help of talented, caring therapists. I vividly remember his first steps...both times. Both first smiles brought tears to my eyes. Seeing him struggle with simple tasks that so many of us take for granted was and is very hard. As a parent I want to make things easy for him, but that's not what's going to help him the most. He has to work through those struggles and really learn from them. It's very difficult to sit in a surgical waiting room while our little boy is having his chest cracked open. But it's almost just as difficult to properly help him recover from his strokes. These are not the things taught in parenting classes. They're not taught in nursing school and they're not taught when your little one is diagnosed with such awful things. Live, learn, and pray for guidance. <br />
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So, the holidays bring a lot of conflicting emotions out for me. I'm grateful for the time we had before he was diagnosed. Ignorance is bliss? But in hindsight I see how lucky we were. I probably sound like a broken record, but it's amazing that he lived through those weeks. Just how precious each of those moments were screams out at me in those pictures.<br />
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Today (December 30, 2015) marks another anniversary for Eli. Two years ago today we were in Dr. Amy's office for an urgent visit. Eli had woken up vomiting on Christmas Day 2013. When he finally started walking that day we noticed he was limping. It got worse and we even went to the ER for xrays. Nothing showed up so we thought it was possibly a hairline fracture and we watched him for another couple days. The morning of the 30th he was running a fever. By then, Bryan & I both knew it probably was more than a simple hairline fracture. Once at Dr. Amy's, we had plans to get labs, blood cultures, and other x-rays. Also, an appointment with a pediatric orthopedic doctor was made. It was in Indy and we had less than three hours to pack and get up there. Eli & I took off and made it. On the way I was calling Eli's other specialists and leaving messages updating them on his condition. By the time the ortho doctor examined him, Eli was feeling pretty bad and looking like a very sick little boy. He was admitted to Peyton Manning Children's Hospital that day. He didn't leave there until March 6, 2014. His staph infection was back and we had no choice but to send him to the OR again. If you've followed his story at all, you know the rest. Fourth open heart surgery, strokes, intensive inpatient rehab. Once he left PMCH in early March, it was a transfer to St. Mary's in Evansville for more inpatient therapy. On the 21st of March, exactly two months after his strokes, he WALKED out of the hospital. He came home with a wheelchair, a walker, swallowing restrictions, countless stretches & exercises, and a whole lot of work ahead of him, but he was home. <br />
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So just another date that I don't try to remember, but it won't leave my head. And just another memory tied to the holidays that leads to unpleasant thoughts and memories. It's been a little harder this year because just yesterday was my grandmother's funeral. At times during the service, Eli was on my lap. It was his first funeral and he kept whispering questions to me. "Where is Grandma Great?" "She's not hurting anymore?" "Her soul is in heaven with God now and her body is in there?" Of course we'd talked before then, but naturally he still had questions. As I held him and sat there, I was very emotional. Toward the end, he looked up at me and whispered "I love you." I was already crying and suddenly all I could do was hold on to him and pray. I was praying thanks that I had him with me, praying that I would not be attending his funeral, and praying for strength to get through whatever is next on our journey. <br />
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So, now that I've shared all those yucky little thoughts, let me assure you I don't dwell on them. I don't think about them all the time. I enjoy the holidays with our family of five and our extended family & friends. The good times and good memories heavily outweigh the bad ones. We have to have those bad times to truly appreciate the good ones. And now, at this late hour, I'm off to snuggle and feed one of my greatest blessings in life. She's fussy because she's going through a tough time too....teething. My other three blessings are snoozing together on the couch after watching a movie. See how rough we have it??? ;)<br />
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I hope you all had a very Merry Christmas and that 2016 brings you health and happiness! I will make a New Year's resolution to be more consistent updating this blog! Do you make resolutions? If so, what are you working on this year?Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-47242043667233970882015-06-23T19:43:00.001-04:002015-06-23T19:47:06.152-04:00Two Months!Charlotte is two months old already! Well, yesterday she was two months old, today she's two months and one day :)<br />
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This sweet little gal is very cuddly, loves bright lights, and is giving lots of smiles. She's been testing her soft little voice sometimes with darling little coos and ahhs. She recognizes her big brothers, is a good nurser, and is pretty happy most of the time. But she does have a quick temper and can be very loud! She prefers a shower over a bath in her baby tub and hates to be in a wet/dirty diaper (not that I blame her!). She still wants held a lot at night, but lately has been sleeping about 4 solid hours so Mommy is beginning to get a little more rest. She weighs about 10 1/2lbs and still has blue eyes. She's outgrown all her newborn sizes and is in 0-3 or 3 month clothes. No matter what size she is, she's a perfect fit for us!</div>
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This bear was made by the four of us at Build A Bear while I was pregnant with her. Bryan and I started <br />
the tradition of making a bear for our unborn baby when I was pregnant with Zachary. <br />
Zachary's bear is Giggles, Eli's is Happy, and Charlotte's is Laffy. <br />
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We always have to be a little different. So instead of being like everyone else doing the monthly stickers, we got the boys in on the action too! My original idea was to have one with the three of them and their stickers...but posing three kids for one photo is not easy and the individual pictures turned out just fine!</div>
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Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-75395777533856543432015-06-19T17:23:00.003-04:002015-06-19T17:23:56.562-04:00Sleep Study Number TwoAsking for prayers again. Eli had a sleep study last night. It's being done because we need to find out if removing his tonsils and adenoids improved his quality of sleep. We think it did because he's not snoring anymore, but that isn't enough information for us to go on! His sleep study prior to the T & A showed many recurrent episodes of sleep apnea where his oxygen saturations would drop into the mid 70s. Oxygen sats that low put a lot of stress on the heart and lungs. His heart and lungs are already stressed because of his heart defects so we want to minimize or eliminate any additional stressors we can! If this sleep study hasn't improved from the last one, our next option is likely a cpap machine for him to wear when sleeping. Of course we'll do whatever is required, but we really, really don't want him to have to have cpap! It was a chore getting him to wear oxygen tubing at night when he required oxygen, I can't imagine getting him to strap a mask over his mouth and nose every night!<br />
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Please pray that his sleep study has improved. We'll probably have the results later next week. <br />
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Bryan took him for this one and I stayed home with Zachary & Charlotte. Here are some pictures he sent after Eli was hooked up and ready for bed.<br />
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It all looks very comfy, doesn't it? Bryan said Eli woke twice in the night but easily went back to sleep when Bryan snuggled him. They were woken at 5:45am to disconnect and go home. </div>
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Here are a couple funny stories from yesterday:</div>
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1) The boys were playing in the playroom and it was nearly time for Bryan & Eli to leave. I told the boys to pick up. Eli puts a few things away then sprawls out on the floor saying "I can't do dis anymore. I'm tired. Too tired for mine sweep study." Too tired for his sleep study? Funny boy!</div>
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2) Zachary, Charlotte, & I went to Evansville for supper and a little shopping. We stopped in Petersburg for gas and on the way out I told Zachary Hwy 57 is the way we went to Evansville all the time before I69. Here's that conversation:</div>
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Z: This is how you went when you were a kid?</div>
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Me: Yes, as a kid and a grown up.</div>
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Z: Wow. Some of these buildings look really old. Like they were built in 1981.</div>
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Following that we had a brief discussion about time perspective!</div>
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3) And a Charlotte update. She was 8 weeks old on Wednesday and she'll be 2 months old Monday. (I really don't like how quickly time is going by!) As I carried her through the store someone asked me how old she was. As I had those two numbers in my head I promptly replied "8 months" Then I had to correct myself. She's getting to the point where I don't know if I should reply in weeks or months & I confused myself!</div>
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Thank you for the prayers and for following our family. I'll update with Eli's results when we get them. And I'll try to be better about updating with Charlotte pictures. Life is busy with three kids and I'm making my health and rest more of a priority than I have in the past. But I will get better about this. It's not just for you, it's for Zachary, Eli, and Charlotte too! I would like to do an update on the boys' baseball seasons. Both have finished and we took lots of pictures throughout. I was still pregnant when the season began and a lot has happened since then!</div>
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God bless you all and remember to cherish Every Little Beat...</div>
Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-286782577339959562015-04-27T01:15:00.000-04:002015-04-27T01:19:36.674-04:00Baby Veale #3 is here and it's a.......<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA7Gk8dfQ38pQCSWx17tG5W6RkNKmQSb9ZMHoD_rP9FmTHKoosXEnnozFObbR9cK3ud7A2d3o7UBXpLLuQqGsc9aLHejurOzJ_Ia0bzK4hm7qJ76JuD87OS6oV7zgfVyanIJ20FtsjLDgc/s1600/IMG_5958.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA7Gk8dfQ38pQCSWx17tG5W6RkNKmQSb9ZMHoD_rP9FmTHKoosXEnnozFObbR9cK3ud7A2d3o7UBXpLLuQqGsc9aLHejurOzJ_Ia0bzK4hm7qJ76JuD87OS6oV7zgfVyanIJ20FtsjLDgc/s1600/IMG_5958.JPG" height="320" width="245" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her first close up. She's so pretty! We think she favors Zachary quite a bit, but definitely see some Eli features in her as well.</td></tr>
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<span style="color: magenta;">GIRL</span>!!!! We welcomed our daughter to the world on Wednesday, April 22 at 10:55pm. Charlotte Grace weighed a petite 7lbs 11oz and was 20 1/2 inches long. I'm being serious saying petite because a) I never dreamed I'd have a child that small and b) she's still so curled up she seems like she's only about 15 inches long!<br />
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When I announced her arrival on Facebook, I also promised the story of her birth. I've not meant to drag it out, we've just been busy and tired so I'm finally getting around to it. It's nothing like Zachary or Eli's labors (which were quite different from each other as well). So here goes, the story of Charlotte Grace's arrival:<br />
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Because my blood pressure had been high for a couple weeks, my OB (Dr. Frances) wanted to induce labor. He felt it was safe for me and the baby since I would be just over 38 weeks along at the time of induction. I was admitted to the hospital on Tuesday night to begin a medicine to get my body ready to labor. The medicine (Cytotec) was to start thinning my cervix overnight so that Pitocin could be started in the morning which would get the contractions started. When we got to the hospital and the monitors were attached, we found out I was already contracting. I knew I'd had some contractions, but hadn't felt anything regular. These contractions were about every 3-6 minutes but they were not strong at all. My first dose of Cytotec was at 9pm. I was supposed to have another at 1am, but my contractions were showing up very close together. I was still only 1 centimeter dilated. They skipped the second dose of Cytotec in hopes that my contractions would either get stronger on their own or relax and have more time in between. I was still contracting through the night so Pitocin was started at 4am. I also got my first dose of penicillin because I had tested positive on my strep test (very common).<br />
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Dr. Frances came in about 9am and broke my water. I was two centimeters at that time and still contracting, although they weren't all that strong. He hoped that breaking my water would help get the process going more naturally and the contractions would get stronger. During my two previous labors, breaking my water made a huge difference in how much I felt the contractions and how quickly I progressed so we assumed the same to be true this time. <br />
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Not so much.<br />
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We spent the day waiting for progress. It came, but very slowly. I rested, I turned from side to side, I walked some in the room, I made many trips to the bathroom, I sat on a medicine ball, I ate jello and drank broth, I watched a lot of tv, I talked with my boys who were both there as well as other family members, I assured anesthesia over and over I didn't need an epidural (truly I didn't yet), and we waited. My Pitocin was adjusted higher and lower throughout the day as my contractions would get too close together and then fade off some. Overall my blood pressure was doing very well, but we had started this process and couldn't abandon it now! By 5pm, eleven hours after the Pitocin begain, I was four centimeters (sigh). I was starting to feel defeated, but also knew we were getting there. This was nothing like the labors I'd had with Zachary or Eli. I was getting very tired by then so I laid in bed for a while in an attempt to rest between the contractions I could feel. Of course I'd been closely monitored throughout the entire process and when my nurse came in at one point she said, "With the level of Pitocin you're on you should be doubled over in pain, not sleeping!" I laughed and said I couldn't fake it. Some changes were made to my Pitocin and the contractions got stronger. A lot stronger. And more regular. I was actually feeling them every 2-3 minutes. By 7pm I was ready for my epidural. I was still 4cm but the strength and regularity of contractions in addition to the fact that I'd been laboring for nearly a full day were starting to wear on me. And I still had 6cm to go and then would get to start "work" by pushing. Yes, epidural me up so I could rest a little and get ready for the event. <br />
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Dr. Graber came in and got my epidural done pretty quickly. After that I laid on my side for a while and was able to rest. No sleep but I did rest. At 9pm the nurse checked me and I was 4cm. Seriously, still a lousy FOUR?!? But she said the baby was lower and I was thinned out so she hoped things would move a little quicker. By then I was seriously doubting we'd have a baby on the 22nd. At that point I would be happy with a baby on the 23rd and to not drag it out any longer than that! <br />
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Nurse Erica checked me again at 10pm and even before she said anything I could see relief on her face. I was six centimeters! In one hour I'd gone two centimeters. It had taken 24 hours to get the first four but by golly we were on our way. Even with the epidural, I could feel some pressure in my abdomen that went along with contractions. But that's all it was, was pressure. Definitely no pain. The nurse came back to check on me a little after 10:30. I was annoyed initially that she wanted to check me so soon because I was comfy and wanted to rest more. She said she thought I was getting close based on the baby's heart rate and my contractions. I didn't argue with her but was thinking a sarcastic "sure I'm close!" Well, I was wrong and she was right. <br />
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She said, "It's time to start pushing, baby's ready." She called other nurses into the room and in no time they had my bed changed to a delivery bed, stirrups up, the doctor called, and I was given orders (nicely!) to give my first push. Then during the second push Erica told me to stop pushing. Now I had no idea how hard it was to stop pushing in that state, but somehow I followed instructions and stopped. In a calm but firm voice Erica looked at another nurse and simply said, "Call him again." Then she looked at me and Bryan and told us the baby was very, very close so we were going to wait until Dr. Frances got there before pushing again.<br />
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So we waited. It was at least thirty seconds if not a full minute of waiting. Then Erica said, "Baby's not waiting. Here we go, give me one small push." So I pushed again and out came our baby! The umbilical cord was around her neck one time. Erica announced it was a girl and laid her on my chest. Bryan and I both thought she was so, so tiny! As I held our daughter for the first time, Dr. Frances walked in. It was probably two minutes after her arrival and less than five minutes from the first phone call to him. I teased him that he was determined not to deliver any of our children (he's been my OB for all three pregnancies but I went into labor with Zachary and Eli on days he wasn't at the hospital so his associate delivered them...I had joked with him in the office that this baby was his last chance to deliver for us!). <br />
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After nearly 26 hours of labor, our daughter couldn't wait four minutes for the doctor to arrive. <br />
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Everything went beautifully and smoothly. No one was panicked in the room and there were several nurses available. I did notice that my child chose to make her appearance right at shift change so at least there were several nurses on the unit at that time to help out. Dr. Frances clamped the cord and Bryan cut it as he had with his sons. After baby got wiped down a bit and things were ready, Bryan got Zachary and Eli from the waiting room. We had promised they would be the first to find out if they had a brother or sister and then they got to tell the rest of the family. The last update our family had from us was that I was six centimeters at 10pm, so when Bryan came out to get the boys, they were a little shocked. <br />
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Zachary and Eli saw their sister, but of course couldn't tell if she was a boy or girl just by looking. Zachary had wanted a girl very badly and Eli wanted a boy (unless you asked him if he wanted a brother or sister, then his answer was sister...he didn't quite get it!). So when we told them they had a baby sister, they were ecstatic! Zachary immediately wanted to run to the waiting room and tell family, but we made him wait a little. After our first few minutes of us being a family of five, we let Zachary get our family. He promised not to say anything until they were all in the room with us and he did a wonderful job of not telling! Once everyone was in the room, Zachary said, "Eli, you tell them." Then Eli proceeded to say, "It's a baby girl. I have a baby sister!" He did it so well, it's like he rehearsed it, but it was just pure joy and happiness. At that point Zachary couldn't contain himself anymore and began dancing, saying silly things, and just being goofy. They were both exhausted and excited. Zachary got to hold her, Eli didn't want to, and then they both got to go home after a long day. Aunt Kendra said Eli crawled under the baby swing in the living room when they got home and he fell asleep there. Zachary went to sleep on the couch and neither boy made it to school Thursday morning (Zachary did go after lunch). But we didn't care. I'm sorry they were up so late and were so tired, but we needed them there when the event happened and they needed to be there. Our family deserves to be reminded there are plenty of good things that happen within hospital walls.<br />
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Dr. Cullen examined Charlotte on Thursday and declared her healthy. He asked if we wanted an echo which he would be glad to order simply based on family history. Because we initially thought Eli was healthy and took him home not knowing how seriously ill he was, we opted to have the echo. All our prenatal testing had good results, but now she was here and we could get better views of her heart. So it was done within the hour and read by Dr. Kumbar in Evansville (Eli's Evansville cardiologist). Everything checked out normal, as we expected but needed to hear. <br />
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Charlotte was overall very quiet and easily consoled although she exhibited a bit of a temper at times. She spent Thursday sleeping a lot and pooping a lot despite not nursing much. We came home Friday afternoon and she was still a very sleepy little thing. However, Friday night she was up a lot and nursing well. Saturday night went much better and she had a little more awake time through the day Saturday and Sunday. Tonight (Sunday) she had her first home bath. We put the baby tub on the kitchen floor and we all got to help hold the squirmy, soapy girl and get her cleaned up. Even Albert was right there. She nursed and has been sleeping for a while since then. As I'm typing, she's starting to stir and will probably (hopefully) wake soon for a feeding and then go back to sleep. She's been wanting held all night rather than sleep in her bassinet so we may try her bouncy seat through the night tonight. It will definitely help my sleep if that works out!<br />
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Since she's been home, Eli has gotten more and more comfortable with her. Even in the hospital he was enamored with her, but just didn't want to touch her. Now he can't walk by without rubbing or kissing her head. He thinks she should always have her pacifier whether she's awake, asleep, upset, content, or even nursing. He's fascinated that she doesn't eat food and he's been a big help with choosing the next diaper to use at a diaper change. Zachary has been a huge helper by being able to hold her for a few minutes so I can have my hands free. He's also been walking Albert more for us if we get the dog's harness on him (Albert has back problems and can be jumpy when being harnessed so we haven't let Zachary do that part yet). Albert is his usual helpful self when it comes to our babies. He loves them and wants to be in their faces all the time. He is also very wary of visitors and other people getting near his baby. We've got three good, protective boys for this girl ;)<br />
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I want to explain a little about how we chose her name. We had more trouble buckling down to pick names this time. With the first two, it was easy to chose their middle names. We had family names picked out and since both babies turned out to be boys, we used our dads' first names. We wanted this baby to have a name that meant just as much as Glen and Mark. But narrowing that down was tough this time since we knew this was our last time. There weren't family names we loved quite as much and it was hard to choose one side of the family over another. So we branched out. What meant a lot to us? To our family. Then it was clear. If this baby was a boy, his middle name would be Vincent after Peyton Manning Children's Hospital at St. Vincent. Immediately it felt right. It wasn't necessarily the name itself we loved, but what it meant for us. It was a way to honor all those individuals who have worked so hard in many different ways to keep Eli with us. Now the pressure was on. What if baby was a girl? What name was as special to us as Vincent? We couldn't come up with anything feminine that went with Charlotte (which we just happened to agree on). So, again, we thought about our journey over these last few years. Not just Eli's health, but also the loss of a pregnancy two years ago. What's gotten us through all the ups and downs we've endured? God's grace. And she became known as Charlotte Grace. We had also considered Faith, which is why we didn't announce a middle name on Facebook when I posted she had arrived. After sleeping on it and seeing her again, Grace felt more appropriate to us. She is another gift to us through His graceful goodness. So, no, it's not a family name but we put a lot of thought into it and her name is just as special to us as Zachary and Eli's names are. <br />
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Here are some pictures to go with Charlotte's story.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_kAA2GcYhh-Zg_XgOCtWhEofQ7PaUTjskfLq_jBa-oHffL_22xt921Z4g10zGvCY6x89Zaya3DsdubKXLGoPIi1eOXEYFVSPs52VnvG5uSHuqThtUS29OXozo83N9jaxyAIpa8D7Iq8xE/s1600/IMG_5883.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_kAA2GcYhh-Zg_XgOCtWhEofQ7PaUTjskfLq_jBa-oHffL_22xt921Z4g10zGvCY6x89Zaya3DsdubKXLGoPIi1eOXEYFVSPs52VnvG5uSHuqThtUS29OXozo83N9jaxyAIpa8D7Iq8xE/s1600/IMG_5883.JPG" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My last belly shot as we headed to the hospital for induction.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTqnK4lmPSVnzZqWtgoG2EBOG1O9WRPuIw0Gizh3sMyQvVZh0Wx_GhwWAUlRkyZOs-d6msJ3pXLeeUqL_DJxV3mnuxUtQ4v2D7Lvm8R1eRq2g7-XBcoH38cu2NuhRwHNLj__4mAX1-tpZw/s1600/IMG_5894.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTqnK4lmPSVnzZqWtgoG2EBOG1O9WRPuIw0Gizh3sMyQvVZh0Wx_GhwWAUlRkyZOs-d6msJ3pXLeeUqL_DJxV3mnuxUtQ4v2D7Lvm8R1eRq2g7-XBcoH38cu2NuhRwHNLj__4mAX1-tpZw/s1600/IMG_5894.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Took a photo of my IV, or "tubes" as Eli calls it, to show him he's not the only one who has to have them.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEY7eBkxoX3nJ4hCiaK3j16uB4cXQjiCmUfX-cuZ0pjNwv7GGLipeu6LNJcTaILY5wkVYKg0I2yDDsgbzdHJuj4KWUL3yjBEqw0oebjrF_Os3HoHV1oa_svNVrKhJN1MYiZ2Tw_x9SPLia/s1600/IMG_5900.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEY7eBkxoX3nJ4hCiaK3j16uB4cXQjiCmUfX-cuZ0pjNwv7GGLipeu6LNJcTaILY5wkVYKg0I2yDDsgbzdHJuj4KWUL3yjBEqw0oebjrF_Os3HoHV1oa_svNVrKhJN1MYiZ2Tw_x9SPLia/s1600/IMG_5900.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our last picture as a family of four.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnWfWx0yDrSEHOkD-ENqpHNDLK6xFft7WjSyzKQncjRmylI0LSCngCfNJj1M0I6ncAHALKT1gVpkSCWkImT88l3CnK4VhlVGTzPGjKW3c4YYfl45XsIfqtSnl41UFgXfRZB0YaFQrB-H5q/s1600/IMG_5906.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnWfWx0yDrSEHOkD-ENqpHNDLK6xFft7WjSyzKQncjRmylI0LSCngCfNJj1M0I6ncAHALKT1gVpkSCWkImT88l3CnK4VhlVGTzPGjKW3c4YYfl45XsIfqtSnl41UFgXfRZB0YaFQrB-H5q/s1600/IMG_5906.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying to get some rest after my epidural.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzIFJLDuGP40EhQJihyphenhyphenT0OYT2EpQ7xYXK55BKrLkfBnmOt_IIG6Y3kE34W9E1AhEdkmDuYwisNPwTHHKDsMMsE6vi3JXoBNzE7uidWMMMkLAhqRibGqOMY2hf8ilErITdZKla4vBjYVQIn/s1600/IMG_5913.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzIFJLDuGP40EhQJihyphenhyphenT0OYT2EpQ7xYXK55BKrLkfBnmOt_IIG6Y3kE34W9E1AhEdkmDuYwisNPwTHHKDsMMsE6vi3JXoBNzE7uidWMMMkLAhqRibGqOMY2hf8ilErITdZKla4vBjYVQIn/s1600/IMG_5913.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She's here!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn7PqXNgW3RYWNKo7UCYrpmgvSSgfgjfelRuqmMRrY4dUw2whHeUZQJBHVj3QR5uthhB1u9FolHZAryQ0VqhjGo2D353meU03pPJe_9wuPuAyjUL3m-QzzWGTqfryavquPgGbhrOZnY60g/s1600/IMG_5912.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn7PqXNgW3RYWNKo7UCYrpmgvSSgfgjfelRuqmMRrY4dUw2whHeUZQJBHVj3QR5uthhB1u9FolHZAryQ0VqhjGo2D353meU03pPJe_9wuPuAyjUL3m-QzzWGTqfryavquPgGbhrOZnY60g/s1600/IMG_5912.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All three deliveries, Bryan has taken a picture of the clock in the delivery room when the baby is born.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Holding our daughter for the first time. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2xVKkPXYMYvT32fwT0yR6rAldzPb2_jaVP1MaK8xAzcZUpsJTuM7Gc-BncBJ47M8HogpyHh40ktHWH7r92330mcMDLGQfHkPVK-AW16fOFWcyY55cb4K9fWyR-Q9QkMawRnjkqXcxes6U/s1600/IMG_5921.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2xVKkPXYMYvT32fwT0yR6rAldzPb2_jaVP1MaK8xAzcZUpsJTuM7Gc-BncBJ47M8HogpyHh40ktHWH7r92330mcMDLGQfHkPVK-AW16fOFWcyY55cb4K9fWyR-Q9QkMawRnjkqXcxes6U/s1600/IMG_5921.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary shortly after he found out he had his much anticipated sister! (I forgot to mention that he lost his top front tooth just minutes after Bryan and I left the house Tuesday night. The Tooth Fairy waited until we were all home to switch his tooth out for his money.)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiCOCUypOczUJluNCRbJa2lLU-e4FQM1K8LfWH4a8TjAc500DgfGyRJW6AGaXQ1GgI8cDpLSZm3rKl_K2l1QdjOLg9sKAzOXh5r__lyjFt7kRrYWJ4XeAZlPDHX1LZFuo_QHDNkSHu_7kJ/s1600/IMG_5922.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiCOCUypOczUJluNCRbJa2lLU-e4FQM1K8LfWH4a8TjAc500DgfGyRJW6AGaXQ1GgI8cDpLSZm3rKl_K2l1QdjOLg9sKAzOXh5r__lyjFt7kRrYWJ4XeAZlPDHX1LZFuo_QHDNkSHu_7kJ/s1600/IMG_5922.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli checking on his baby sister...from a distance.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1K6p-0Hn1BOO6P3ZvniP08aLnkZq2MkXBriXLSW9d2wj0S4dk5UDoLfflH5Ca3zTzSYoQytWWAq0d8osOXHtLjyl2gvoyxaxyQKg2r-HsmbU0o0P7eyQBxPmWJBl8ypMLDTPrmy9fZlPB/s1600/IMG_5932.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1K6p-0Hn1BOO6P3ZvniP08aLnkZq2MkXBriXLSW9d2wj0S4dk5UDoLfflH5Ca3zTzSYoQytWWAq0d8osOXHtLjyl2gvoyxaxyQKg2r-HsmbU0o0P7eyQBxPmWJBl8ypMLDTPrmy9fZlPB/s1600/IMG_5932.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary holding his sister for the first time.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6PFTqN_1K54diPww_uMr8OwuzsS8mv53d39QYt3lRJyKSGqhAu09M2QsBGLSfPNg3w265NiplSofl15JrxPBqjT63acnSVtRJabkgj_H81CiOaTmzHMb_Htz0N0geHriLXjcNnNGmftIf/s1600/IMG_5924.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6PFTqN_1K54diPww_uMr8OwuzsS8mv53d39QYt3lRJyKSGqhAu09M2QsBGLSfPNg3w265NiplSofl15JrxPBqjT63acnSVtRJabkgj_H81CiOaTmzHMb_Htz0N0geHriLXjcNnNGmftIf/s1600/IMG_5924.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bryan holding his daughter for the first time.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCnBW4tTdMcJTsLe9F0lMFY0uq35uD8h3vIEiETk-sqS6wGOoez6M2-MFvMw8kR1oukfvGwxepPUvcevUQphu2KBxzIFpmXHfd-FcARxK3qVVCUcr6HKxOT7sk36RJBS3bI00JBaa-G4nI/s1600/IMG_5942.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCnBW4tTdMcJTsLe9F0lMFY0uq35uD8h3vIEiETk-sqS6wGOoez6M2-MFvMw8kR1oukfvGwxepPUvcevUQphu2KBxzIFpmXHfd-FcARxK3qVVCUcr6HKxOT7sk36RJBS3bI00JBaa-G4nI/s1600/IMG_5942.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our family of five. Eli and I were talking to each other in this photo, but for some reason this was my favorite.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYiblQsUec6H0X3SrzowcB_cpraSfhZdejQfeh2u-32dKXiHkT-wEcejK1nFhDn95JbIItsoiX7xZt1drCdpke7oUKmXLR0FmfHTdNn-eJ2FXIkPx4OM6mHVoqUn3KSviwsmiWjBoL0UQO/s1600/IMG_5949.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYiblQsUec6H0X3SrzowcB_cpraSfhZdejQfeh2u-32dKXiHkT-wEcejK1nFhDn95JbIItsoiX7xZt1drCdpke7oUKmXLR0FmfHTdNn-eJ2FXIkPx4OM6mHVoqUn3KSviwsmiWjBoL0UQO/s1600/IMG_5949.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She doesn't look so tiny here, but she is an itty bitty thing...for us anyway!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAQNBxb9kWPzDBrTrOWycTCNUYt4BAJhA66nPEF4N2oEJ-3vbBjurw7G3aX3r3uyue81nlRPTk5c7QzZPcm1BBXJmY6sOvSG1J6KSfT0i6AQtYwLBg_K0VKZnAzVd6l9g4xfZXdFX04C9D/s1600/IMG_5959.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAQNBxb9kWPzDBrTrOWycTCNUYt4BAJhA66nPEF4N2oEJ-3vbBjurw7G3aX3r3uyue81nlRPTk5c7QzZPcm1BBXJmY6sOvSG1J6KSfT0i6AQtYwLBg_K0VKZnAzVd6l9g4xfZXdFX04C9D/s1600/IMG_5959.JPG" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping through her echo.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbpdLZWZTEP_nV4GTRqX73d0xqmHW31_pZpQOL_wl7AEaxhuy-4yY2ZpRPsOlLx7HOhMYPhl_MOA2dryl6rd3fq_LE_dcjUMbbbH4F0f9vcYtcRUyQDhvhbFa-duRM9Jm5p_T1S4-0QuAs/s1600/IMG_5983.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbpdLZWZTEP_nV4GTRqX73d0xqmHW31_pZpQOL_wl7AEaxhuy-4yY2ZpRPsOlLx7HOhMYPhl_MOA2dryl6rd3fq_LE_dcjUMbbbH4F0f9vcYtcRUyQDhvhbFa-duRM9Jm5p_T1S4-0QuAs/s1600/IMG_5983.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She has the longest toes! Just before I grabbed the camera, she had some of them laced together like she was praying with her feet!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0mWQdvrzfSY04kMGfcJb5XHGD_1GSTqnjW49X_PGMtoEd28ERKML3hrIwtZ8MdgDvAlcyqPypVH5WjKnsysZeR2N6BhM0f6TlsvdztlwDSBLgdS6A-tEX6i4ncNObUD-_IZDDTIgg7EVJ/s1600/IMG_5985.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0mWQdvrzfSY04kMGfcJb5XHGD_1GSTqnjW49X_PGMtoEd28ERKML3hrIwtZ8MdgDvAlcyqPypVH5WjKnsysZeR2N6BhM0f6TlsvdztlwDSBLgdS6A-tEX6i4ncNObUD-_IZDDTIgg7EVJ/s1600/IMG_5985.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The sign in her hospital crib.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmtSimLuJ217NUWq1veevGrU2hLXpxnbS7Gbu8jpJD9S7dg4EHeARxzlJwS9DOwnOYAHH0fFIfi_oF6YBAaWdDoJlqIc9wE_w4cBva5tgbaTT-iqbJe6ASHGOzj9gbMCZhmNjpiv3tp5DH/s1600/IMG_5989.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmtSimLuJ217NUWq1veevGrU2hLXpxnbS7Gbu8jpJD9S7dg4EHeARxzlJwS9DOwnOYAHH0fFIfi_oF6YBAaWdDoJlqIc9wE_w4cBva5tgbaTT-iqbJe6ASHGOzj9gbMCZhmNjpiv3tp5DH/s1600/IMG_5989.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli helped me get her dressed for our hospital discharge. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH4_WBlmAgoMNbLyZw6u0aEuVBxhyphenhyphen9tkgdJqtk4N6qO_Lt7kdOp_ujjqhd-hW4ljLvHEzzO4Ofb1qKWgdDktH8siC8C7MpraGS2Kpv5lEaYxHxwSnisrcezImYr2H4mC8imDSgmFmQnAID/s1600/IMG_5997.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH4_WBlmAgoMNbLyZw6u0aEuVBxhyphenhyphen9tkgdJqtk4N6qO_Lt7kdOp_ujjqhd-hW4ljLvHEzzO4Ofb1qKWgdDktH8siC8C7MpraGS2Kpv5lEaYxHxwSnisrcezImYr2H4mC8imDSgmFmQnAID/s1600/IMG_5997.JPG" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love this hat on her! She's not too sure!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkW7rgTrWzRj_Tx5C6jeuPCTMpZvVGdikmAWSBPhnjNh0sDmr1S0F_T5D5OCwDHnAoxMb1PS9ipq8r55Jqda-Jkuy8-hHYItYTKCA4bXKRGnGZEiIZlAoqcWxHP5s70xiea9EIEdot4Yiy/s1600/IMG_6009.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkW7rgTrWzRj_Tx5C6jeuPCTMpZvVGdikmAWSBPhnjNh0sDmr1S0F_T5D5OCwDHnAoxMb1PS9ipq8r55Jqda-Jkuy8-hHYItYTKCA4bXKRGnGZEiIZlAoqcWxHP5s70xiea9EIEdot4Yiy/s1600/IMG_6009.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Does this crib make my baby look small???</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKnZvSNYgk54mO82-qoFraa3tmUoyHFfLNN9WLsA0mxxtkPAYc6GcZq-j2yVoBj8tgu1yrEEcZSZYnzc9OeaQe_mhyM3wgckwdwBc8WLVMJUvqlDaobHDmupsq3GK6tj42_kPmNfmKGtJS/s1600/IMG_6015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKnZvSNYgk54mO82-qoFraa3tmUoyHFfLNN9WLsA0mxxtkPAYc6GcZq-j2yVoBj8tgu1yrEEcZSZYnzc9OeaQe_mhyM3wgckwdwBc8WLVMJUvqlDaobHDmupsq3GK6tj42_kPmNfmKGtJS/s1600/IMG_6015.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First bath! And, yes, it was all hands on deck. Albert supervised while the rest of us washed her. Bryan washed her too when he wasn't snapping pictures of us!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnMcysO1bGZwOD8CQJO2scYF6BxyvM0VE33nZHIAE8eFGtic3lxuoKwYhms6FEV4Xme1lGOV8rGWxKiHHBYr8SQWPLy4PAoJUVos0RLXSH4OTGKkyIH0kkdGCG58DgJ2gqPFfedbGIoPjm/s1600/IMG_6016.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnMcysO1bGZwOD8CQJO2scYF6BxyvM0VE33nZHIAE8eFGtic3lxuoKwYhms6FEV4Xme1lGOV8rGWxKiHHBYr8SQWPLy4PAoJUVos0RLXSH4OTGKkyIH0kkdGCG58DgJ2gqPFfedbGIoPjm/s1600/IMG_6016.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Many hands make light work? Sure. But this many hands also resulted in a pajama change for Eli too as he soaked himself with all his help. It was fun....Charlotte wasn't sure, but it was!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVdO0Q326mBP6fwYFdaNrmtuNPDS20biD-7ol93_bFIaG8RibrMIXcCibqMVxWaVSOI2-oakmlhUxhSzq1ZcSXMK7z28Q-TCp0hwsS12_cqWnlZ07pPlNpamRDffOU9D8ZTgIDCCVj4xrd/s1600/IMG_6017.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVdO0Q326mBP6fwYFdaNrmtuNPDS20biD-7ol93_bFIaG8RibrMIXcCibqMVxWaVSOI2-oakmlhUxhSzq1ZcSXMK7z28Q-TCp0hwsS12_cqWnlZ07pPlNpamRDffOU9D8ZTgIDCCVj4xrd/s1600/IMG_6017.JPG" height="398" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The boys love helping with her.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPvVXMWuo3nSrdKoKbTSkioUIbSJP_5y_iUkH-xoWfKVZmZztjlJNPZj648ZDWezRX8RJyL_PTp1Ne024rjcBPHNP1xzi5tyI7cRTFJ7CRG1NNGXEnPS3bB6wD0NQzVOmLMuJIb4njA0dn/s1600/IMG_6022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPvVXMWuo3nSrdKoKbTSkioUIbSJP_5y_iUkH-xoWfKVZmZztjlJNPZj648ZDWezRX8RJyL_PTp1Ne024rjcBPHNP1xzi5tyI7cRTFJ7CRG1NNGXEnPS3bB6wD0NQzVOmLMuJIb4njA0dn/s1600/IMG_6022.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All snuggly, warm, and sleepy after her first home bath. And we do have pink clothes for her! We just don't have a lot of newborn sizes yet because our boys were so much bigger...and we expected her to be a lot bigger. I know 7lbs 11oz isn't actually tiny, but we fully expected a nine pound baby so she has surprised us in many ways already!</td></tr>
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And there you go. That's the story of Charlotte's birth. She's a sweet little thing who is always up for a snuggle. She's the best four day old daughter I could have asked for! Thanks for checking in on us and for any prayers you've offered up during my pregnancy and labor. As you can see, things have turned out well. God bless all of you for keeping up with us and remember to cherish Every Little Beat...<br />
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Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-27062792586772119552015-04-08T22:32:00.000-04:002015-04-08T22:32:04.032-04:00A Variety of Updates and Lots of PicturesI owe lots of updates! Actually I had to look back on the blog to see what I last posted. Apologies for it being so long since I've given updates. I have given short updates on Eli's MVPs Facebook page, but I know not everyone does Facebook. Here we go:<br />
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<strong><u>Pizza Hut Fundraiser</u></strong><br />
On Friday, February 13 we spent the entire day at Washington's Pizza Hut for Eli's fundraiser. If a customer had a voucher then Pizza Hut donated 20% of their order to Eli. The restaurant was pretty busy all day. Eli had a blast being there and the staff seemed to like having him there this year. Last year when they did this fundraiser for us, Eli was just a couple weeks out from his strokes and was still hospitalized. So this was the first time for me and him. We sold several Eli's MVPs tshirts and bracelets and also auctioned two tickets for the Indiana Pacers vs Charlotte Hornets (featuring Washington's own Cody Zeller). Those things combined with generous donations from many, many people and a couple businesses totaled about $1000. A week or two later we got the check from Pizza Hut and it was for over $550. We had a great time and once again were humbled by the amount of support shown to our family. A huge thank you to Pizza Hut and to everyone who ordered pizza that day. We are so grateful. ALL of that money goes into an account for Eli's future medical expenses, which will be substantial. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQJ44MgCQAI4vmvAkExH3ZcBwCMsGH-_Z3TS_gfl5ZCHNeUxBgIVQ-ox9loR2DND0x-8_bVGwJjulKZfRvbYVF4t-Zp33ddKpBu7iKwZJhqr5JyXXbbJASx8aWRws0F-cEFyaNbUy5eiTk/s1600/IMG_5509.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQJ44MgCQAI4vmvAkExH3ZcBwCMsGH-_Z3TS_gfl5ZCHNeUxBgIVQ-ox9loR2DND0x-8_bVGwJjulKZfRvbYVF4t-Zp33ddKpBu7iKwZJhqr5JyXXbbJASx8aWRws0F-cEFyaNbUy5eiTk/s1600/IMG_5509.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The four of us. We're all wearing Eli's MVPs shirts except for Eli. His says "I am a pediatric stroke survivor"</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhub7ZHuakthgiBcERi4zYDNRiexpNXSQ3Rt0m-PiX8QwRgOxw2PLBaAt-6tXWmw94I0hzu8E4evb_sePbuog9VDox1ejUCT24fHK1DxhaMdkQQDrjfkqRCd5K7GglRgllENkSf8bXancJM/s1600/IMG_5468.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhub7ZHuakthgiBcERi4zYDNRiexpNXSQ3Rt0m-PiX8QwRgOxw2PLBaAt-6tXWmw94I0hzu8E4evb_sePbuog9VDox1ejUCT24fHK1DxhaMdkQQDrjfkqRCd5K7GglRgllENkSf8bXancJM/s1600/IMG_5468.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A group photo of some of the workers with Eli. This was just the ones there at the beginning of the day. We meant to get one with the evening shift, but they were very busy until the end of the day and by then Eli was too tired to cooperate!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDMAsv1-28G1slAOvKfmNS9MebcyXnFEjXPCcoJ1hib0y-oamIeL0UU3IpPL_y9RejZLTdkWVCza8W8DiT6cEoxTm7f2SXi1qzsHgAp3yAN-1-QrRBVPLAi_NYCTAL6yNOtJLGvAfIAyMR/s1600/IMG_5479.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDMAsv1-28G1slAOvKfmNS9MebcyXnFEjXPCcoJ1hib0y-oamIeL0UU3IpPL_y9RejZLTdkWVCza8W8DiT6cEoxTm7f2SXi1qzsHgAp3yAN-1-QrRBVPLAi_NYCTAL6yNOtJLGvAfIAyMR/s1600/IMG_5479.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">As soon as he got out of school he wanted to come work. His after school snack was a heart-shaped pepperoni pizza and then he got busy. Zachary seated people when they came in the door, cleared tables, cleaned tables, and occasionally got some refills for people (he was too worried about spilling drinks to do that very often!). People were so sweet and generous to him and often gave him tips. He actually came home with a little over $20!!!! And I have to say he worked hard for his money!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPTPc1Cat0RwCQMBX3FWU8YiPsrURbYveiGa9srMPaxwzl0Mq0_0rZPjh5gzmeN2B-7t9FHnUxZQDzao2fVrbWCZWm3v6S38GNQioKKp8TXc7N-n3jJtFXBXYpicw2B3CF-U1w5ja6l-LD/s1600/IMG_5497.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPTPc1Cat0RwCQMBX3FWU8YiPsrURbYveiGa9srMPaxwzl0Mq0_0rZPjh5gzmeN2B-7t9FHnUxZQDzao2fVrbWCZWm3v6S38GNQioKKp8TXc7N-n3jJtFXBXYpicw2B3CF-U1w5ja6l-LD/s1600/IMG_5497.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the end of the night, they let Zachary wash up and make his own pizza. He chose to top it with pepperoni, sausage, and ham.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHEHXR1Z0B_hdbW3gHzCEUob3Dtk1Sxa_WY6QJ0ZrIkuhfdsyCTYyWQai1LgRdd6rcxXE_DSiiCtBn8yr7AWcri68KJDdU-n56bwdRggBeta_KtJW8Q7LMYHqKIaitj4pJLnzdSlYURMru/s1600/IMG_5500.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHEHXR1Z0B_hdbW3gHzCEUob3Dtk1Sxa_WY6QJ0ZrIkuhfdsyCTYyWQai1LgRdd6rcxXE_DSiiCtBn8yr7AWcri68KJDdU-n56bwdRggBeta_KtJW8Q7LMYHqKIaitj4pJLnzdSlYURMru/s1600/IMG_5500.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The finished product! It was delicious :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSDO3KewbdFR1jZGct1LnXRjjCepkGRFCzjPWRws79PB2g2QE73HLapgcfMzjwYjocCmy6XtHYzxtfDhxD5d2GgkqoC5cH-uFq3YHSmvSXIWvERbJYqWhzjIbAj4ykA4STPzUZaHTKuU_B/s1600/IMG_5516.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSDO3KewbdFR1jZGct1LnXRjjCepkGRFCzjPWRws79PB2g2QE73HLapgcfMzjwYjocCmy6XtHYzxtfDhxD5d2GgkqoC5cH-uFq3YHSmvSXIWvERbJYqWhzjIbAj4ykA4STPzUZaHTKuU_B/s1600/IMG_5516.JPG" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Of course Eli had to make one too. He made a personal pan with pepperoni, sausage, and mushrooms. It was just as good! (don't worry, there's an employee just out of the picture who was right with him as he stood on the stepstool to make his pizza)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7n53DFuwBZvtn6uNQdivNsS7fxhFV493hbjFFzg-nPopjZorql5ndokWnmcXQDjm-xqYTuktRmYW4Pi9vO-xvyLEieuoN84our_uhkBboAvAW9BV4HdEnFjpCbLoMKWcWuJ1LAHuLzFC2/s1600/IMG_5522.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7n53DFuwBZvtn6uNQdivNsS7fxhFV493hbjFFzg-nPopjZorql5ndokWnmcXQDjm-xqYTuktRmYW4Pi9vO-xvyLEieuoN84our_uhkBboAvAW9BV4HdEnFjpCbLoMKWcWuJ1LAHuLzFC2/s1600/IMG_5522.JPG" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was worn out after a long day and barely stayed awake long enough to change into his pjs!</td></tr>
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<strong><u>Tonsillectomy</u></strong><br />
Eli had his tonsillectomy on Thursday, February 26. He did very well although there were a few tears as he had to go through the double doors with a nurse & child life specialist but without mommy and daddy. We had talked about that a lot before the surgery day and he was fine with it....until time to do it! After he was in surgery the child life specialist assured us that he did fine once they were just a little way down the hall. After surgery the ENT came to talk to us and said the surgery went very well. She drained a lot of fluid from behind both ears and placed the tubes. Then she took out his tonsils and adenoids. Dr. Hamaker said both sets of those were much larger than she anticipated. Because of the severity of Eli's sleep study, his heart history, and the size of glands that were removed, she and the anesthesiologist, Dr. Monte Harrison (a pediatric cardiac anesthesiologist who has worked with Eli on multiple occasions) both felt it was in Eli's best interest to be admitted to the PICU. He was doing fine but there was too much potential for trouble. She actually said, "Dr. Harrison and I would feel much better knowing he's in the PICU tonight." Of course Bryan and I had no problem with it, we knew he would be well taken care of wherever he needed to be.<br />
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We got to see him in recovery a little while after that. He was already waking up a little and even took a couple ice chips before transport to PICU. I sat on the gurney and held him for transport. Once we got to PICU he was very awake and entertaining the staff. He was definitely not his normal self, but he did talk some, drank liquids, asked for chips (of course that didn't happen!), and had lots of visitors. Through the night he was put on oxygen for a few hours as his sats were dipping to the mid 80s. Although mid 80s are not ideal for him, we also knew that was better than the mid 70s he had been dipping into during his sleep apnea episodes before surgery so it was actually an improvement! He did have a few hours of sleep where he kept his sats up without additional oxygen. Pain control was our main concern. He was on Tylenol and Motrin every six hours and we alternated so he would get one or the other every three. That's actually the schedule he needed once he was home as well and it stayed that way for almost a week. <br />
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Eli did so well the first night that he was discharged from the PICU. We had anticipated a transfer to the general peds floor for at least a night but docs felt he was ready and wanted him out of the hospital. There were a lot of sick kiddos in there and no one wanted Eli to catch anything by being in the hospital any longer than necessary. We had prepared ourselves to stay for a week (seriously, Eli has never had an overnight stay at the hospital so why wouldn't we prepare for longer?!?!?) <br />
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We knew that even though he did very well initially, it didn't mean his entire recovery would be smooth. Overall we didn't encounter any major problems but his pain control was a big issue. A lot of kids are fine with just Tylenol and Motrin. Some require something a little stronger such as Lortab. Eli cannot take Lortab, which is a drug that is a combination of acetaminophen (Tylenol) and hydrocodone. His system cannot handle the hydrocodone. One dose will constipate him for days and cause a lot of vomiting. So we didn't have too many options. Luckily he did pretty well by staying on the Tylenol or Motrin every three hours, using heating pads on his neck, and encouraging him to drink (which he probably viewed as a form of torture). He couldn't/wouldn't sleep anywhere but upright on our couch (usually in our arms) for almost two weeks. As we expected, his oral intake was much less than normal, but as long as he was drinking enough to keep the muscles in his throat moving, we didn't care to nourish him by using the feeding tube. (Again, we're so happy he still has that and yet he isn't dependent on it). On day 10 he started acting much more like himself. He was playing again and having a lot of silly moments. He had an ENT check up the other day and things are mostly good. One tube has clogged a little with dried blood so we have to put a mixture of peroxide and water in his ear twice a day until that's cleared. We expected that to be like the two of us trying to drown an elephant, but surprisingly Eli tolerates it just fine. <br />
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While he was hospitalized, there were visitor restrictions in place due to the flu outbreak. Eli, however, had a steady stream of visitors through the evening, night, and the next morning. He is so popular and well known there that many PICU staff came to see him, nurses and staff from the third floor, and even nurse practitioners and doctors from his various specialties came to see him as they were at the hospital rounding on other patients. It was so nice to see them. It was really special for many of them to see Eli doing so well even though he wasn't himself because of the tonsillectomy. The PICU staff really enjoyed seeing him because they usually only see kids at their absolute worst. So to have Eli sitting up, talking a little, drinking, playing on the ipad, and making a few demands was nice for them!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwH6bpGAu2UTJfyziFJm07LQzODwaokaYHrhRuIAD92YaTXnrfbJrMNetkc58pm3ev6WnjKJydPq7sH_yReGHUt7oL7elw6j-duDUtNHaortBAdA1WvGqR7mGIrBIEQNW9XINtLgiZvnP1/s1600/IMG_5543.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwH6bpGAu2UTJfyziFJm07LQzODwaokaYHrhRuIAD92YaTXnrfbJrMNetkc58pm3ev6WnjKJydPq7sH_yReGHUt7oL7elw6j-duDUtNHaortBAdA1WvGqR7mGIrBIEQNW9XINtLgiZvnP1/s1600/IMG_5543.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">As we waited for surgery he got to practice driving. Eli wasn't too sure at first but got used to it pretty quickly.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1D5TCr3YM6lxMbphVuYIXUvqz740y66XKOOYST8E-2t7gmOmRwxxJVwsCSpdP0xZPhQIBGzcK1KUA7AMaP2tV5ZGqynghEQz-2DPLSkDmC6EBIRfFUibKUOnPURg5facANGuE8FKmuS1l/s1600/IMG_5555.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1D5TCr3YM6lxMbphVuYIXUvqz740y66XKOOYST8E-2t7gmOmRwxxJVwsCSpdP0xZPhQIBGzcK1KUA7AMaP2tV5ZGqynghEQz-2DPLSkDmC6EBIRfFUibKUOnPURg5facANGuE8FKmuS1l/s1600/IMG_5555.JPG" height="365" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He loved playing with bubbles Daddy blew for him in the hallways. He wanted to take them back to the OR when he went.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1ZFugMJeH2aEj13YqdtyubqDhEk7GrDRF4zjzaoF7T7T3gHKIK2SEI4QOHccIHnpGOoLq91FOLGSnPVCUGXXHB9yYEpRa-qhyphenhyphenl1BYlxclL2Agh2lIZNmL-WUHq_huOqdX-1LyVTOg1cM6/s1600/IMG_5562.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1ZFugMJeH2aEj13YqdtyubqDhEk7GrDRF4zjzaoF7T7T3gHKIK2SEI4QOHccIHnpGOoLq91FOLGSnPVCUGXXHB9yYEpRa-qhyphenhyphenl1BYlxclL2Agh2lIZNmL-WUHq_huOqdX-1LyVTOg1cM6/s1600/IMG_5562.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggled in bed in the PICU a few hours after surgery. And as always for anything medical, Pablo was with him</td></tr>
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<strong><u>Meeting Cody</u></strong><br />
Cody Zeller is a player for the Charlotte Hornets. Just in case you don't know, he's the youngest of three Zeller boys who are basketball royalty here in Washington. They all three won state championships in high school, each were chosen as Mr. Basketball, each played for a Division I college team, and each has played or is playing in the NBA. Cody and the Hornets were in Indianapolis on April 3 and we had the opportunity to get to see Cody and have a few minutes with him. Unfortunately for him, he's sidelined because of a shoulder injury right now. It worked to our advantage though because he spent a lot longer with us than we expected! During our twenty minute visit he talked with each of us and asked the boys questions about sports and school. Cody found out Zachary attends North Elementary and immediately named all the teachers he had from kindergarten to sixth grade. Zachary was amazed that although he hasn't had any of Cody's elementary teachers, he knew several of them because they're still teaching at North. He thought that was pretty cool. Cody signed several basketball cards for us and even compared shoes with Zachary. We gave him an Eli's MVPs bracelet and briefly told him about Eli's history. When he read the bracelet, Cody said "I've heard of Eli's MVPs" and he immediately put it on. After he left to shower before the game (he is able to do some running drills during warm ups but doesn't dress for the games right now), one of the Hornets PR guys came out. It was the man Bryan had talked to about setting this up for us. He had a bag of Hornets tshirts for us. Each shirt was different so that was even more special. We got to stay on the sidelines before the game started and the boys got several autographs on a basketball we had brought. Everyone was very nice and friendly. We really are Pacer fans, but are sports fans in general. We really appreciated the opportunity from Cody and the Hornets. (by the way, since we were cheering for both teams, the Pacers won decidedly that night. The last few games we've been to they lost!)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4G7S3zgCv-QBpuwCDlYgCWF4uY6veO9lryhaJszbZ0Yzu-dTY9H3-DA7OR99wCitUV14yrMGnEn9qN87R3kZ6ur8TCCvt1rT5XPoKJdCZy0y1EkPMXZpbEBxncIhd5wkb0xjt8kWBigMC/s1600/IMG_5715.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4G7S3zgCv-QBpuwCDlYgCWF4uY6veO9lryhaJszbZ0Yzu-dTY9H3-DA7OR99wCitUV14yrMGnEn9qN87R3kZ6ur8TCCvt1rT5XPoKJdCZy0y1EkPMXZpbEBxncIhd5wkb0xjt8kWBigMC/s1600/IMG_5715.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The four of us with Cody.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzz63eJHZPpW8Yka5ErHLxtH5FkjKhIJSLp7Kgt7eY_-DskJZrBODtnri0r0duHmMfikgRRbvA-fXWrdzgvOD06FDmpks29dr3XZM7N2og_ZK23-ScKfULo07ymcue3wsVCNpGKUbT6l28/s1600/IMG_5733.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzz63eJHZPpW8Yka5ErHLxtH5FkjKhIJSLp7Kgt7eY_-DskJZrBODtnri0r0duHmMfikgRRbvA-fXWrdzgvOD06FDmpks29dr3XZM7N2og_ZK23-ScKfULo07ymcue3wsVCNpGKUbT6l28/s1600/IMG_5733.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zachary sitting with Noah Vonleh, former IU player and current Hornets player.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiETgLLqVe7Cl9aOJTs-v3I2kP8Q8MC9alokSFjX0MXVB39prg1z0RGvUK2_5gz9lRsXyFs9pykVEPqRPwNpctTWNYX2-ExBzSDO78W0MgfQCEjRXs71CG7yggOtdyAHKVqfOLE7ixBNqZZ/s1600/20150403_180212.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiETgLLqVe7Cl9aOJTs-v3I2kP8Q8MC9alokSFjX0MXVB39prg1z0RGvUK2_5gz9lRsXyFs9pykVEPqRPwNpctTWNYX2-ExBzSDO78W0MgfQCEjRXs71CG7yggOtdyAHKVqfOLE7ixBNqZZ/s1600/20150403_180212.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli was really enjoying talking to Noah Vonleh, but as soon as he saw me about to take a picture he walked away. You can see Noah laughing at him here.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihkc8NyOAajHnUdcgKoCwT5TIQK-zoFXUwMUUxUXURQj_RSToT0LdKK_sExDeIJBY5E4j0RTRR1nqxoRI5VTfDzINCttm-iG44OUUrxMB5erLcvhNV_00E8306v4iHRazPoNnSn_xcvjjJ/s1600/IMG_5737.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihkc8NyOAajHnUdcgKoCwT5TIQK-zoFXUwMUUxUXURQj_RSToT0LdKK_sExDeIJBY5E4j0RTRR1nqxoRI5VTfDzINCttm-iG44OUUrxMB5erLcvhNV_00E8306v4iHRazPoNnSn_xcvjjJ/s1600/IMG_5737.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The boys getting their basketball signed by Lance Stephenson who now plays for the Hornets but he played for the Pacers last year. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYNCoQwqjQar18tPeRz0SRAy-oPNPUpFRcm2k3eSLuZNxgVkovlpBKPxloRNpNzz2IHOdo6-AbTY8tU0yzKAQiyaujOXYEf55ezPljuebDi-2g3aigmsEbFrXtK4CSyLfXpTJ5TkGkFW91/s1600/IMG_5742.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYNCoQwqjQar18tPeRz0SRAy-oPNPUpFRcm2k3eSLuZNxgVkovlpBKPxloRNpNzz2IHOdo6-AbTY8tU0yzKAQiyaujOXYEf55ezPljuebDi-2g3aigmsEbFrXtK4CSyLfXpTJ5TkGkFW91/s1600/IMG_5742.JPG" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kemba Walker signing the boys' ball.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRHgdWW5YP7ifee3ngET8KKR0DKySXstdZgGR0jU9hC-MbuogXhCk-SY_yANqr6D6RuMjOGn_DBjWQqB70LPu1Quy29I8l7ghDRHzTOqr_Kwym9iEX4ibtMYNNVu_HDw96ghcja13MwpVg/s1600/IMG_5699.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRHgdWW5YP7ifee3ngET8KKR0DKySXstdZgGR0jU9hC-MbuogXhCk-SY_yANqr6D6RuMjOGn_DBjWQqB70LPu1Quy29I8l7ghDRHzTOqr_Kwym9iEX4ibtMYNNVu_HDw96ghcja13MwpVg/s1600/IMG_5699.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli sitting on the Hornet's bench during pregame warmups. He was seven seats away from NBA legend and current Hornets assistant coach Patrick Ewing. It's a shame Patrick had no idea what a celebrity was sitting at the end of his bench! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivYbDgz9pMv4_zkFCDUA1T2c5juEpRvC-WsVnPqcdgYMgPk0d7Cs607uwR3XYxK6RUopJiTfk3PWnWrj9BvyK0Q7tJb83uLYPIaQthogtNjnzYaoNoN2W8oB4xgc-oSnRzUecWybuWGh4s/s1600/IMG_5736.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivYbDgz9pMv4_zkFCDUA1T2c5juEpRvC-WsVnPqcdgYMgPk0d7Cs607uwR3XYxK6RUopJiTfk3PWnWrj9BvyK0Q7tJb83uLYPIaQthogtNjnzYaoNoN2W8oB4xgc-oSnRzUecWybuWGh4s/s1600/IMG_5736.JPG" height="400" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eli showing the ball with autographs. He wouldn't turn it around for the picture so we could actually see the signatures, but was very interested in dribbling it every chance he got.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJF0_pejw-f5f9OLviohFAs2BXaUlfIkrRvvitLwnBKFOV2AC3K1nIOI9fX9-XknOqXBYButbXnymZBdkPiAtpti7tbEqsHkKVSRe324lWvryX8RRnQ1ut8iWf7DmtxJr4VhX-pl7nDSrL/s1600/IMG_5716.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJF0_pejw-f5f9OLviohFAs2BXaUlfIkrRvvitLwnBKFOV2AC3K1nIOI9fX9-XknOqXBYButbXnymZBdkPiAtpti7tbEqsHkKVSRe324lWvryX8RRnQ1ut8iWf7DmtxJr4VhX-pl7nDSrL/s1600/IMG_5716.JPG" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The boys and Cody comparing shoes.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEaSG3vKW1YJMKsZ7ov1mCl2gLx5-qQQzHOEzlHQvvX2Ks2guP7QmDnmlhW_w31iyGv5m8nvtBmMK4OkX5RnMvbl18_ehQsdzAaNUhSoGTROpOZ1Wh-OWVvMzYttGw8y6cMIsaf2fzEQPQ/s1600/2015040395174546.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEaSG3vKW1YJMKsZ7ov1mCl2gLx5-qQQzHOEzlHQvvX2Ks2guP7QmDnmlhW_w31iyGv5m8nvtBmMK4OkX5RnMvbl18_ehQsdzAaNUhSoGTROpOZ1Wh-OWVvMzYttGw8y6cMIsaf2fzEQPQ/s1600/2015040395174546.jpg" height="225" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A really good picture of Zachary and Cody. If you see that bulge from Cody's right arm, it's not his muscle, it's my belly in the background!</td></tr>
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<strong><u>Pregnancy</u></strong><br />
I'm still pregnant. Very pregnant! I'm to the point that strangers will approach and start by saying "I usually never comment about a pregnancy because you never really know for sure, but it's obvious you're pregnant." Yes, yes, it's obvious! I'm actually outgrowing most of my maternity clothes at this point. I'm pretty sure all I have that truly fits the way they're supposed to are earrings and my glasses. And because we're pretty sure (99.9999999999999999%) this is our last one, I refuse to buy anymore clothes. So if you see me and my belly is showing slightly beneath my shirt, just remember they don't make a lot of maternity clothes in extra length!<br />
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I'm at the 36 week mark so we've got less than a month to go. And a lot of work to do! We've been so busy with Eli's surgery, the donation drive (more to come about that event in a later post), the Pizza Hut fundraiser, a few minor illnesses, and life in general, that we haven't gotten much ready for this babe. Fortunately, with this being our third, our home is pretty much a kid zone anyway! However we figure we should at least clear out the bassinet that has been a "storage" unit, shall we say, since Eli outgrew it. We don't know the gender (but we have never found out with any of our kidlets) so we have several gender neutral outfits packed away. I need to dig those out and wash them. We have had to get a couple new pieces of equipment for this kid since our infant car seat from the boys expired and those need assembled. Who says the third gets all hand-me-downs???? There are several other things to do as well, but thinking about it is a little overwhelming! <br />
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I've been in physical therapy for the last month. Since I was about six months along, I've had a lot of pain in my hips, lower back, and pelvis. This baby feels like it's lower. I don't expect to be discomfort free during pregnancy, but this was really painful and it was difficult to get through the day. It turns out I have pelvic insufficiency. Basically, my pelvis is lower on one side, tilted forward at the bottom, and twisted a little. I've been going to therapy weekly and doing exercises at home twice a day (okay, fine! sometimes it's only once a day!). All that is definitely helping, but frankly it's unrealistic to expect to be pain free as my pregnancy is progressing. During pregnancy the female body secretes a hormone called relaxin which helps "loosen" the pelvis in preparation for the birth. So all I can do is try to strengthen the muscles of my hips, upper legs, lower back, and pelvis so they can support my loosening, twisted pelvis. Yes, I've had the pregnancy waddle for a long time and it's only made worse by this! I'm really slow to walk, have trouble lifting my legs to get in our van, look absolutely ridiculous trying to get out of our low to the ground car, can't stand or sit for long periods, take Tylenol regularly, and I ice or have a heating bag on my crotch a couple times a day. It's definitely been a different experience for sure! The good news is that this shouldn't have any impact on a regular delivery, it doesn't affect the baby whatsoever, and delivery typically relieves the symptoms. The baby is growing well and moves A LOT! Especially at night or when I'm sitting in the van (babe does not like the true upright sitting position for me). My due date is May 4, but I just feel that I will go sooner. Maybe not, but in my head this is a late April baby. <br />
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<tr><td class="tr-caption" style="text-align: center;">Growing baby! 36 weeks</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Belly size is just under 48"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijOyj2wm541mWEFb_uNwAhCE7JK8Rc6rO-b40nkkPomMbWxN7hSXNo6jmYPZzZhOwPOOJIwMr3H46Yi6kyBEo6NALeSs6Owtz7yWAk3zI-VfaKVkseMJxS7YsFknvKarQPOqx98ymiBVRl/s1600/Veale+Babies+comparison.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijOyj2wm541mWEFb_uNwAhCE7JK8Rc6rO-b40nkkPomMbWxN7hSXNo6jmYPZzZhOwPOOJIwMr3H46Yi6kyBEo6NALeSs6Owtz7yWAk3zI-VfaKVkseMJxS7YsFknvKarQPOqx98ymiBVRl/s1600/Veale+Babies+comparison.jpg" height="211" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The last ultrasound we had was at 27 weeks. During other ultrasounds we thought we could see some features of Eli and some features of Zachary on the baby. However, this ultrasound was all Zachary! I can't find the profile picture I have of Eli after he was born so this is the best I could do. Zachary is six weeks old in the photo on the left. Baby Veale #3 is in the middle. Eli at about 18 hours old is on the right. I'd forgotten how Eli barely had lips because his face was all cheeks!!!</td></tr>
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<strong><u>Life in General</u></strong><br />
The boys are both doing well in school. Eli still goes three mornings a week and also receives therapy (PT and OT both) through school. The other two days, he has started physical and occupational therapies at our local hospital. He was receiving therapy at home but our insurance no longer considers him homebound because he goes to preschool (even though he was considered homebound when he started preschool in August). Our only problem with switching is our insurance will only cover 25 therapy sessions as an outpatient but it's unlimited in the home. Eli does have Medicaid now as a secondary so we're hopeful they will pick up most/all of the tab after our insurance allotment is exhausted. We had no problems with the home therapy company we were using, but we are glad for this change. He is participating more at the hospital than he was at home. He is a bit of a manipulator (I mean that with lots of love, but it's true!) and having therapy at home made it too easy for him to change the rules and get away from what the therapist was doing. At the hospital it's a little easier for them to keep him on track. He still tries to get his way though! His biggest excitement these days is that he's playing T-ball this year! Because of the rainy weather he's only had one practice so far, but he's very excited. We don't think any of his T-ball teammates will throw hard enough to hurt him, but he's got a special shirt to wear that has a lot of padding in it to protect his sternum. We wanted him to get used to wearing that for sports and he thought he was really cool wearing it for practice last weekend. I'm very curious how he'll do during the games...not so much because of physical abilities, but because of his, well, hard-headedness! Daddy and Aunt Kendra are the coaches for his team which is good so they know what he needs more help and encouragement with, but also he knows he can push their buttons. It will be an interesting season! <br />
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Zachary is in PAL league now which is the pitching machine. So far his coach (Bryan) says Zachary's hitting well and isn't afraid of the ball coming at him at all, but he needs to work on his throwing. He's excited about baseball this season as well and I love seeing him having fun like this. He's probably the biggest on the team. He told me there was one kid bigger than him at practice one day, but it turns out it was a teammate's older brother (that kid was 11, I think!). The last time we measured Z, he was 4'9" and was just over 100lbs. That's my seven year old baby! I didn't weigh 100lbs until I was a 5'8" high school freshman and now my first grader already does! He's pretty proportionate weight/height wise and he's active so we're not worried about anything. He's always been tall and looks older than his age. Because of that, it's sometimes hard to remember that as a seven year old, he's entitled to a certain amount of immaturity and he definitely deserves his "babying" time as well. I don't know what I'd do without his help around here. Zachary is so excited about this baby coming. He's hoping for a girl, but often says he's happy with either. Many times he's told me things he can do to help with the baby... but it never involves changing diapers!!!!<br />
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Well there's most of what we've been up to since my last update. I'll have another post about the donation drive, but right now I don't have my completed list of items donated and I definitely want to have that included. As always, we thank you for keeping up with our family, praying for us, and all the support we've received. We are very humbled by all our generosity and try to pay it back in ways that help others. We hope you're all doing well and remember to cherish Every Little Beat...<br />
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PS -- Eli wanted to include a message: kkkp;[ jun-\k,''; i9j<br />
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Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com1tag:blogger.com,1999:blog-3046332276191815711.post-29005175903768970222015-02-20T23:20:00.001-05:002015-02-20T23:20:43.984-05:00Hematology Update<br />
If you don't remember, Eli had some preop blood work done that resulted in bleeding times that were longer than expected. That was worrisome because of his upcoming tonsillectomy. So his ENT wanted him evaluated by a hematologist. <br />
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Eli's hematology appointment went well Wednesday. It was a long appointment as the doctor had to get a lot of family history from me and Eli got very restless. After a long discussion and a physical exam, he wanted to get some labwork drawn from Eli. They drew seven or eight vials from him :( He cried a lot but didn't fight it too much. They were retesting his bleeding times and checking for a bleeding disorder called Von Willebrand Disease.<br />
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Dr. Nakkar (hematologist) said as far as he could tell, he wasn't concerned that Eli had any underlying bleeding issues. Unless the labwork came back showing anything abnormal, he felt we could proceed with surgery as planned.<br />
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Today, he called me with some of Eli's results. The preliminaries of Von Willebrand Disease were good so far. The finals of those won't be in for several more days, but Dr. Nakkar doesn't feel that is an issue and we needn't worry about it. Eli was also had two tests of his bleeding times. One was normal and the other was increased. He discussed many different things that could affect it, but his feeling is that Eli has a slight Vitamin K deficiency. <br />
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Again, he doesn't feel this is anything that requires major intervention on his part. He wants Eli to take a prescription Vitamin K tablet for five days prior to surgery. That's all. He (or his office) will let the ENT know that from his standpoint, Eli is cleared for surgery. He did ask specifically when the surgery is, just so he can be aware and available if need be. But he was also clear that he doesn't anticipate any problems. <br />
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So, we picked up Eli's vitamin K prescription today so he can start it tomorrow (Saturday). Surgery is still set for Thursday and we'll have more details about that soon. As I type this, Eli is snoring away on the couch. It's kind of cute, but now that we know how bad his sleep apnea is, it's actually sad to me. I used to enjoy him waking in the night for snuggles, but now I realize it's because his body won't let him have the rest he needs and deserves. I still hate the thought of another surgery for him, but I know he needs this and will benefit from it. I just don't like that everything has to be so hard for him. Even a "simple" procedure like a tonsillectomy and tubes in his ears has been quite an ordeal and we're not even to the surgery yet! <br />
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Please keep him in your prayers. We've not yet talked to him much about this. We'll start more this weekend as we begin packing for several days in the hospital. He's so young, but he's so smart especially about medical events. The poor kid has been through so much and he knows more than he should. Hopefully we can assure him this is good and will help him. In four-year old terms. Thank you for the prayers. We really appreciate them and all of you!Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com1tag:blogger.com,1999:blog-3046332276191815711.post-15048048924266548622015-02-17T14:42:00.001-05:002015-02-17T14:42:44.936-05:00Prayer Request for Safe TravelsThis will be a very short update. As you all know, Eli is scheduled for surgery to remove his tonsils and adenoids as well as place tubes and culture the accumulated fluid in his ears. That is set for Feb 26. He will have a lot of labs drawn when he's in surgery (we contact each of his specialties and get lab orders so it can all be drawn while he's under anesthesia). However, the ENT must have some labs done before surgery. One set of labs ordered is a basic CBC (complete blood count, shows a variety of things including white blood cells, iron levels, etc). The other labs ordered were a PT and a PTT. Those are testing his bleeding times. Because of the hardware in his heart and his irregular rhythm, Eli is at higher risk of a blood clot. To combat that, he has taken half a baby aspirin every other day for years. The aspirin acts as a blood thinner, so he does bruise easily and bleeds a lot when he's fallen or gets a boo boo. <br />
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The ENT nurse practitioner called me last Wednesday with the results of his bleeding (coagulation) times. They were high. Much higher than anticipated even knowing he takes aspirin. As of now, surgery is still on, but we need a good plan in place if he bleeds more than expected during the procedure. One of the biggest complications of a tonsillectomy is bleeding, so this is definitely a concern and needs to be addressed. Simply stopping the aspirin therapy isn't going to solve anything at this point.<br />
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So our next step (according to cardiology and the ENT) is to go see a hematologist/oncologist. That doctor will examine Eli, draw more blood for testing, and make a plan based on Eli's levels that will guide the ENT during the surgery. That appointment is for tomorrow. Our original plan was for me and Eli to leave very early in the morning to make our 9am appointment. But in the last hour, the weather forecast has changed and our area is expecting another inch to two inches of snow (on top of the 6 or so inches we received in the last couple days). Now we've decided it would be best for me and Eli to get up to Indy tonight and spend the night with my sister. <br />
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We would appreciate prayers that we have a safe trip, get good news with the hematologist, and have a safe trip home. We're hopeful that we don't have to delay his surgery. Since getting the diagnosis of Eli's severe sleep apnea, we've put more pieces together and realized just how much this is affecting him and we are anxious to get him some relief...and a good night's sleep! What we thought was him just waking for cuddles in the night is really him in such a light sleep that he's not ever getting the rest his body deserves and needs. <br />
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I have lots of pictures from our Pizza Hut day, but do not have time right now to post them. For now, please know that we are so grateful and humbled by the turnout. We don't have any totals yet except that Zachary made $21.25 in tips. He earned those by being the host and seating people when they came in, cleared tables, got a couple drinks, and checked on every table multiple times during their meal. He worked hard! Thank you to everyone who helped make him feel so special!<br />
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I will update as soon as I can after the appointment, but I have no idea when it will be! Thank you for the concern and prayers. We appreciate it! Enjoy the snow! It's beautiful but I know it causes problems for a lot of people. Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-56320113424715313782015-02-08T17:46:00.001-05:002015-02-08T17:46:20.796-05:00Eli's ENT Update & Sleep Study ResultsEli had a sleep study on Friday January 30. The purpose is to see if he has any obstructive airway issues that would require his tonsils and adenoids to be removed when the ENT doctor places tubes in his ears. That way he only has one time under anesthesia for issues that can be done together. We got the call on Wednesday of that week and she happened to have a cancellation for Friday, so we took it. If we hadn't, it would have been mid to late February before their next pediatric opening. <br />
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So we got everything thrown together quickly (yes, it often takes more than 48 hours to get everything we need to be gone for less than 24 hours). Since this was taking place in an outpatient center, we were responsible for all of his medicine, tube feeding, supplies, pump, etc in addition to packing all the usual stuff of pjs, clothes, favorite stuffed animals and blankets, as well as a few snacks and drinks. Anyway, we got it all together! <br />
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Check in was 7pm, but they don't want Eli sleeping after 3pm the day of the study. Since we knew he'd sleep on the way to Indy, he and I left about 1:30 that day and went to my sister's until it was time to head to the office. That way his nap was done in plenty of time and shouldn't affect his nighttime sleep. <br />
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We checked in before 7 and were taken to a huge room. It had a hospital bed, a couch that pulled out for me to sleep on, a tv with DVD player, and lots of room for Eli to use for showing off. And he put it all to good use. About 8, the tech came in to start attaching everything Eli was going to have to sleep with. He had three or four EKG patches on his chest, about 15 electrodes on his head, five electrodes attached near his eyes and on his cheeks, three electrodes taped to his left leg, and a sensor taped on his neck under his chin. In addition to that he had a wire that ran over his head down to his nose. Attached to that wire were two small wires that went into one nostril each. Over all that he had another tube that went into his nose and hooked over his top lip into his mouth. That was for monitoring his breathing whether it be through the nose or through the mouth. He also had a pulse ox taped to his toe (gave him his "red toe" he was used to wearing during hospitalizations). To finish off the ensemble he had two sensors individually strapped to his chest to monitor the rate and depth of his nighttime breathing. There was a video monitor over his bed and an audio monitor so the tech would not only see his vital signs, but she would also be able to see and hear him every moment of the night. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxjIZxWKDuHWAs1kMpMzycUUhe1Qv2C-w-qrRqPxGz65ItbggWNh3NllgWDSd9GxutPIYJz82pue4MvaKfV9wIvlmd4rr-0_eXpWW30dA2LPdq0HtoCCVuBs-z-dP5Ar9KbJDmpV1GkyVC/s1600/Sleep+Study+Photo+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxjIZxWKDuHWAs1kMpMzycUUhe1Qv2C-w-qrRqPxGz65ItbggWNh3NllgWDSd9GxutPIYJz82pue4MvaKfV9wIvlmd4rr-0_eXpWW30dA2LPdq0HtoCCVuBs-z-dP5Ar9KbJDmpV1GkyVC/s1600/Sleep+Study+Photo+1.jpg" height="271" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looks comfy, doesn't it? If you look closely, you can see the wires going into his nose and the small tube that went over his top lip. The blue tape on his head secured all the wires and electrodes attached to his head and face. That way his nighttime movements didn't affect them much. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This is from the other side of his bed. Again, you can see the tape securing all his wires. There's a box in the front of the picture, just by the pillow. That's the "brain" that all those electrodes fed into. A blanket was kept over it so Eli wouldn't be tempted to fidget with it. There were more monitors to the left of his bed that had different readings on them as he slept. Most of them were quiet and we didn't really notice those through the night. </td></tr>
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I was worried that he would have trouble falling asleep in a strange place, especially after all the equipment was hooked up to him, but he did well. He fussed a lot as the wires and electrodes were being attached, but once they were on he just snuggled on my lap and went to sleep watching a movie. He woke about 3:30am and went back to sleep once I weaseled my nearly six-foot pregnant self into his narrow hospital bed with him and his equipment so we could snuggle. The real challenge was getting OUT of the bed without falling. I asked the tech in the morning if she saw me and she said they did (three techs in the monitor room) and they were impressed. He woke up again about 4:20 but quickly went back to sleep with the same snuggling. Again, I weaseled out and back onto my couch. I had just fallen asleep when the tech came in at 5:10 to unhook him and release us. We had been told he'd be out between 5 and 6 in the morning. It took about an hour to get him unhooked, cleaned up from all the sticky residue, dressed, and pack all our stuff. He asked for doughnuts so we stopped at Dunkin' Donuts and at McDonald's before heading home. He slept most the way home and woke as we pulled into our driveway at 9am.<br />
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We had been told it would be about a week before getting the results. On Thursday we had a call from the ENT nurse practitioner, Jenni. She said there's no doubt Eli needs his tonsils and adenoids removed. His sleep study came back showing severe sleep apnea. Eli's normal oxygen saturation range is 88-92%. During episodes of sleep apnea his sats dropped to the upper 70s. The whole night he was sleeping, he never got into a deep sleep. They're actually surprised he doesn't wake up more through the night than he currently does. Our only guess for that is because he is a heart kiddo, he gets whatever rest he can. Even with his severe sleep apnea, we don't see him not breathing through the night. Jenni said she's not surprised that we can't see it. His body has compensated for a variety of things over his short life and this is just another thing it's covering for. <br />
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Sleep apnea is very hard on the body, especially the heart and lungs. It puts a lot of stress on those organs and Eli's are already very stressed. We also think this may help his daytime activity. Most of us will be very tired and slow the day after a night of little or bad sleep. Kids react differently. They often do the opposite, meaning they are hyper or very, very active through the day. That describes Eli perfectly. He's a very busy boy who doesn't have much attention span, is constantly on the move, and doesn't listen to mommy or daddy like we'd hope. We've had several explanations for this behavior including he may have some chemical imbalance in his brain due to his strokes, he could have Attention Deficit Disorder, or it could be that he's a busy four year old boy. Also, he has said some things lately that confirms to me he has some memory of being in his hospital bed after his strokes and not being able to move. Maybe he's making up for lost time! And maybe none of his behavior is related to his poor sleep, but regardless he needs this done so his heart and lungs don't have to work harder than they already have to.<br />
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So the plan is to take him to the OR to place tubes in his ears, culture the fluid trapped in his ears that will be released with the tubes, and remove his tonsils and adenoids. Surgery is set for Thursday February 26. We don't have a time yet, as they are trying to work him in. We'll find out more details the week before surgery. <br />
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What we do know is that even though a tonsillectomy and tube placement is fairly routine, Eli will not be coming home that night. Often kids do, but any child (forget Eli's special heart and other issues) whose sleep study comes back with the severe results Eli's did will have to spend the night. Jenni said it's sometimes on the regular unit and sometimes it's in the PICU. She cannot imagine a scenario where Eli would not be in the PICU. When she said that, I told her she hadn't said anything that frightened me yet! These kids with severe sleep apnea need their tonsils out, but the initial post op period can be tough. They often have trouble controlling their oxygen saturations so that would be especially concerning for Eli. He could possibly come home the next day if his sats are continually within his normal range and if he's swallowing well. However, she cautioned us that he could be there for two or three days. Again, that's not any information we didn't expect! <br />
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Eli's surgery will be up in Indy at Peyton Manning Children's Hospital where all his other surgeries have been. We know he'll have a pediatric cardiac anesthesiologist for the surgery and we've been asked to give a couple choices of who we want. Of course we're nervous for yet another surgery (because nothing is ever simple with any heart kid, especially with Eli's complex issues, strokes, and history of staph) but we know it's for the best for him. He snores like no child should and the results of this study are alarming. He needs this.<br />
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We'll update with more information as it falls into place. Thanks for the continued prayers and support! Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-35957843369014003422015-02-01T23:48:00.001-05:002015-02-01T23:48:10.076-05:00It's Here, It's Finally Here!!!Alrighty folks, it's finally here! February!!!! And you all know what we celebrate in February....Groundhog Day :) Okay, just kidding. What we really celebrate overshadows Groundhog Day (haha, see what I did there? <em>overshadows Groundhog Day? </em>I am very tired right now and a little slaphappy). <br />
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February is known as Heart Month. Specifically the week of February 7-14 is CHD Awareness Week. While that's not yet nationally recognized we're working on it, and we in the heart community still work our tired tushies off to draw more awareness to Congenital Heart Defects, especially during that week. <br />
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As you know, we are still collecting items to donate to Peyton Manning Children's Hospital. Originally we hoped to deliver them during CHD Awareness Week, but our personal schedule isn't going to allow for a trip to Indy that week, so as of now we are looking at the end of February. The good news with that is we will be collecting items pretty much all through the month of February, so there's plenty of time to get a donation to us if you wish to help out. Again, any questions regarding the donation drive, please contact us via email (<a href="mailto:elismvps@yahoo.com">elismvps@yahoo.com</a>) or call us (812-254-7359). <br />
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Many of you may remember last year at this time while Eli was still in the hospital, there was a hugely successful fundraiser for Eli sponsored by our local Pizza Hut. Well the managers there contacted us and are excited to do it again! So on Friday February 13th, it will be Eli's MVPs Fundraiser Day at Washington's Pizza Hut!!! <br />
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To participate, you have to have one of the vouchers pictured below. The vouchers are free, but for Eli's MVPs to receive any donation from your order you must have a voucher. What percentage does Eli receive? That depends on how much the total sales are for the day. The more they do in sales, the higher the percentage for Eli. If net sales are >$600, then Pizza Hut will donate 20% which is what happened last time. Last year this fundraiser was unbelievably successful and raised nearly $1000 for Eli. Thank you, Thank You, THANK YOU!!!! The managers at Pizza Hut have told me they will have even more employees available that day for this fundraiser now that they've seen just how incredible the support for Eli is. <br />
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Again, the vouchers are free, but you must have one for your order. Your order can be anytime during the day of the fundraiser, and it can be dine in, carry out, or delivery. Online orders use the code given at the bottom of the voucher. We will have these vouchers available at Daviess County Abstract (4th floor German American Bank) and hopefully some other places, but I've not had time to arrange that yet. Those places will be announced soon as that is next on my To Do List! If you want us to email a voucher to you, please let us know via Facebook or emailing us (<a href="mailto:elismvps@yahoo.com">elismvps@yahoo.com</a>) If you're able to, you're welcome to copy and paste from the voucher pictured below. Also, you may make copies of your voucher for others who may be interested. <br />
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We have found out about a special that will be available at Pizza Hut the day of Eli's fundraiser. Since it's so close to Valentine's Day, they are offering one topping heart shaped pizzas for $9.99 or a heart shaped pizza and a cookie for $13.99! What a cute way to celebrate Valentine's Day with your kids and to celebrate Eli's special heart than with a heart shaped pizza?!? So appropriate at this time!<br />
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Also available during the fundraiser at Pizza Hut:<br />
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- a pair of tickets for the Indiana Pacers on the night they host the Charlotte Hornets featuring Washington's very own Cody Zeller. This would be a great opportunity to watch Cody play professionally. He's having a great season and has been starting a lot of games. The game is Friday, April 3rd, and the seats are in section 208, row 12, seats 11 & 12. They will be sold by a silent auction, and the starting bid is $25 for the pair. <br />
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- Eli's MVPs bracelets will be sold again this year. They're the same as what we began selling last year and are $3 each. <br />
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We are planning on all four of us (and the baby bump!) to be present at Pizza Hut this year. We haven't decided what times we'll go but we'll definitely be there for supper and hopefully earlier in the day as well. Zachary had an absolute blast "working" last year, and he is sooo excited to do it again. Bryan and I are just excited that Eli's home and not in the hospital!<br />
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Thank you for all the support you've shown in the past. Your prayers, kind words, and offers of help mean so much to us and we are very grateful. Eli has been doing extremely well, but (and I don't mean to be pessimistic, just realistic) please remember that every single day is a battle for him. His heart works at least twice as hard as most of ours do. He is still in therapy almost daily to try to regain what the strokes took from him. Every day he has is a gift and we are lucky to still have him with us. However, we cannot let our guard down and we have to realize that Eli's heart could further weaken at any time. He has no guarantees other than this is probably the best he will ever be. When will he deteriorate? We don't know. To what degree? We don't know. It could be something that can be temporarily helped by a pacemaker or medicine, or it could require a heart transplant. Or there may be no options. We don't know what will come. Again, we're not trying to be negative but this <u>is</u> our life. Eli is doing well now, but about the only guarantee we have is that he will have problems, likely major problems, at some point. These fundraisers are to financially help him through those times. We had an incredible, unbelievable turnout for the Pizza Hut fundraiser last year. I feel like a large part of that is because his strokes had just happened and he was still in the acute recovery phase in the hospital. This time, he's home and nothing major has negatively affected him since his strokes, but that doesn't mean he doesn't need our help and support just as much as he did last year. <br />
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Again, thank you for reading and caring about our family. We hope to see you at Pizza Hut on Friday the 13th because only good things will happen that day! We are excited for our family to be there so we can thank you in person. And as always, remember to cherish Every Little Beat...Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-30079634659546563712015-01-22T10:14:00.003-05:002015-01-22T10:14:57.048-05:00CHD Awareness Week PetitionAs you probably know, spreading awareness about Congenital Heart Defects is a passion for our family. In all honesty, we didn't know much about them before Eli's diagnosis, so please don't feel guilty if you're the same way. However, we now know so much and realize how important it is for the general public to know more about CHDs as well. As the knowledge base grows, more people are more passionate about finding causes and cures, and that leads to more research, more treatment options, and a better life for these kiddos and their families. <br />
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I don't have time right now to get into a lot of facts and figures, but CHDs affect many more people than I ever imagined. It kills more children every year than all forms of childhood cancer do. We all know how awful cancer is, CHDs are taking away more of our children than that nasty disease. And those living with CHDs don't go into remission, they live with it every single day, every single minute, every single breath and heartbeat of their lives. <br />
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Please help us out by clicking <a href="https://petitions.whitehouse.gov/petition/nationally-recognize-february-7-14-congenital-heart-defect-awareness-week/Lq612tQ0" target="_blank">HERE</a> to sign a petition. The purpose of this petition to make Congenital Heart Defect Awareness Week recognized nationally from February 7-14 each year. Right now, it's up to a few heart organizations, families, and individuals to promote the week. It's never been anything official, but these kids and babies suffering from CHDs deserve to have a nationally recognized week. To sign the petition, you simply go to the link provided above, enter your name, email address, and zip code. To confirm you want to sign it, an email will be sent to you which you open and confirm. It's easy and it means a lot to us. Once you sign it, you also have the option of sharing it on your Facebook or Twitter account. Please consider doing that as well, we are far from the required amount of signatures to make this happen. Thank you for taking the time to do this!!!<br />
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Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-78362102111634842162015-01-15T02:20:00.001-05:002015-01-15T15:36:35.335-05:00News from our Fetal Echo and Eli's ENT AppointmentIt's been a long, busy two days and I am worn out! So glad to be back home tonight. I'm pretty tired, but this baby is practicing gymnastics right now and that prevents me from sleeping so here's a rundown of our news from Tuesday and Wednesday's appointments.<br />
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Tuesday was our fetal echo and other scanning to check for any physical defects with our unborn baby. Bryan and I went alone to this for a couple reasons. First of all, we didn't know how long it would take (we'd been told to expect 2 hours or more for the scans) as it mainly depended on how much the baby moved around. Secondly, not that we were thinking negatively, but in case we did have some news to process we didn't want one or both boys around as we worked through that. After we checked in I had my initial ultrasound by a tech. We had told her we didn't know the gender and were trying to keep it that way. We watched the majority of the ultrasound she did but she had us look away at one point so she could check the genitals. Her ultrasound revealed two arms, two legs, two kidneys, and other things that I had made up in my mind would be missing. She tried to get us a good 3D4D picture of the baby's face, but the little squirt had its legs up over its head. So we got a picture of that but the facial features weren't very clear. That really didn't bother us because although it would have been nice to see more detail of the face, that wasn't our purpose for getting specialty ultrasounds nearly three hours from home! The picture with the baby's legs over his/her head was pretty unique. We did get a clear view of the baby yawning and the tech even rewound that for us to watch again. It was cute enough to make any heart melt! <br />
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After the tech was done, the pediatric cardiologist came in. Her name was Dr. Tucker and we had not met her. She just started with Eli's Indy cardio group in July so it was nice to meet her. She spent a long time scanning the baby's heart and making friendly small talk. At the end of her exam she said that as far as she could tell our baby has a healthy heart. Because we're looking at a small heart in a small body within a larger body it's impossible to see every little detail, so she cannot rule out any small VSDs (ventricular septal defects which are holes in the wall separating the two lower heart chambers). She has no reason to think there are any, but just cautioned us that is something she can't rule out. Also, I won't go into specific details because it's very confusing, but a fetus has a different blood flow from a baby outside the womb. That's because a fetus isn't breathing on its own so its blood doesn't need to go to the lungs. After a baby is born there is a hole that closes up usually within the first couple weeks of life. Occasionally it doesn't close on its own and requires medical intervention. So that is something she can't predict right now. Either of these things that she mentioned (VSD, hole that doesn't close) are not things she's concerned about. She was just mentioning those to caution us that she can't say our baby is 100% heart healthy. That's not just our baby, that's any fetal echo she does. Dr. Tucker said she sees no reason to be concerned, she does not need to see us for any further exams while pregnant or even after the baby's born. I specifically asked if we need to do an echocardiogram once the baby's born. She said only if the baby's physician hears a murmur or if the baby doesn't pass its state mandated pulse oximetry reading (Cora's Law!) or if we have some other concern that develops. Basically we couldn't have gotten better news about the baby's heart!<br />
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After the cardiology part was done, we were waiting for the maternal fetal doctor to come talk to us about the ultrasound results from the scans the tech had done at the start of the appointment. While we were waiting, another tech came in and said she had a favor to ask of us. The facility was interviewing a potential new employee and they wanted to know if we'd let her perform another ultrasound on me as part of her interview. Say no or watch our baby move around a little more? We agreed. She said the doctor would come talk first then she would come back in with the girl they were interviewing. The doctor came in and immediately said, "We're getting a better picture of that face." By that time, the kid had squirmed around enough that its legs were no longer over its head and he could get clearer views of the baby's facial features. In all honesty I never cared for the 3D4D pictures until I saw our baby's photo session! We were able to see more features of his/her face. Cute little baby lips (like big brother Zachary?), cheeks that are round (like big brother Eli's?). Oh, so sweet! The doctor spent a fair amount of time getting us some photos of the baby's face and he said it's because he really had nothing to discuss with us since everything looked good as far as he could tell. Again, good news! <br />
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Then the other tech and her interview prospect came in. They were really focusing on getting good pictures of baby's brain, femur, and the insertion site of the umbilical cord into the placenta. Again, none of that was because of concerns with our baby, they were using the baby to "test" the girl interviewing. The doctor came back in to watch her and through all of it we just got to relax and enjoy more views of our squirmy little baby. When we left after nearly two hours in the exam room, we were leaving with the knowledge that as much as they can tell from all the testing they did, there are no concerns. And baby weighed in at 1 lb 11oz, almost half a pound more than the average 24 week fetus...determined by my non-medical late-night online Googling abilities! As I said in my last post, I couldn't bring myself to pray for a healthy baby. All I could do was pray that we could accept whatever news we got. I still can't believe things are good so far. It's a relief but it's also still going to be in the back of my mind. Even after delivery I may not believe it for a long time! No matter what, we know this is the baby meant for us, just as Zachary and Eli were meant for us. <br />
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Here are a few of the photos we got from the ultrasound sessions.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0DTZksFG9h2LsAIYP3WT36Dqie1b9hSeouHWE_RZvegieZtrCcWCqZ_JTr8vj8v51QtAUtUwWTGb-tBloJIM1o2EV-hb5hALD75o3Gk1zXnPDmq-niDLwHFU77TJ_jHB3OcLBLoUd9b3b/s1600/24+Week+Ultrasound,+Photo+4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0DTZksFG9h2LsAIYP3WT36Dqie1b9hSeouHWE_RZvegieZtrCcWCqZ_JTr8vj8v51QtAUtUwWTGb-tBloJIM1o2EV-hb5hALD75o3Gk1zXnPDmq-niDLwHFU77TJ_jHB3OcLBLoUd9b3b/s1600/24+Week+Ultrasound,+Photo+4.jpg" height="310" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is a good profile pic of the baby. This was at the very beginning of the ultrasound. Notice the genitals are just out of the frame, she did that on purpose for us. And, no, we didn't find out the baby's gender today either!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqaDRfsIr_RG-KVvHALV74oCz73HuhzI3x8RrMv0MkUl8ZotWzWwKpHsvvDD2sh41MsDjtwCSQtlKHOXntikgmUSbhTmxbkQRl3HIgGpbKUWFoTbtT4SYTeUnP0cJDZCVp5Db3Bt9xlDeM/s1600/24+Week+Ultrasound,+Photo+6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqaDRfsIr_RG-KVvHALV74oCz73HuhzI3x8RrMv0MkUl8ZotWzWwKpHsvvDD2sh41MsDjtwCSQtlKHOXntikgmUSbhTmxbkQRl3HIgGpbKUWFoTbtT4SYTeUnP0cJDZCVp5Db3Bt9xlDeM/s1600/24+Week+Ultrasound,+Photo+6.jpg" height="318" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the picture we got with the baby's feet up over its head which prevented us from getting a good look at the face. I love this though because even though it isn't clear, we can easily see its legs stretched up and the foot above its head. Cute!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwOZj5v288I0EmUOXMICg2RvkvaaFvxAIcATMcG4EOzgfPnNSRZNe2mclg46Nm2jfob315gvcyS2HgDfmWX8hMHru8hk4LOrjSkGmr00EBLOA8L1dyMdOIbnX2sg3ecPXVA0qL9pJaI31_/s1600/24+Week+Ultrasound,+Photo+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwOZj5v288I0EmUOXMICg2RvkvaaFvxAIcATMcG4EOzgfPnNSRZNe2mclg46Nm2jfob315gvcyS2HgDfmWX8hMHru8hk4LOrjSkGmr00EBLOA8L1dyMdOIbnX2sg3ecPXVA0qL9pJaI31_/s1600/24+Week+Ultrasound,+Photo+2.jpg" height="312" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And here is the best photo we could get of the baby's face. It was clearer on the screen, getting a photograph of it isn't as clear. But it does show the lips, cheeks, chin, and nose very well. I definitely see a little bit of both my boys in this picture. The baby is saluting us over his/her right eye!</td></tr>
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<br />
On Wednesday, Eli and I went to his ENT appointment. As we walked into the building we ran into one of our favorite nurses, Britini. She was the very first nurse Eli had at PMCH when he was flown there after his diagnosis in Evansville. Over the years and admissions, we've had her many times and are always happy to see her. Eli doesn't usually recognize her because she's a PICU nurse and those are usually his sickest and most sedated times. It was good to spend a few minutes catching up with her. Then we made our way to Eli's appointment with Dr. Hamaker (pronounced "Hay-maker"). Both Dr. Hamaker and her nurse practitioner were very nice and we were comfortable with them. Eli doesn't have any active ear infection going on right now...actually this past week has been the healthiest he's been since August! No runny nose, cough, or ear issues. I'm really glad he's feeling better, but doesn't it just figure that he's doing so well when we actually see the specialist?!?! Even though his ears aren't infected, both of them saw fluid behind his right ear. With the issues he's had over the past several months combined with his history of pretty serious infection and several ear infections over the years, Dr. Hamaker is recommending tubes in his ears. However, because of his snoring (the kid is loud!) and some other issues, she wants him to first have a sleep study to confirm/rule out obstructive airway issues. Just in case he needs something else done he would only have anesthesia once for both things. What besides tubes would they do? Honestly, I didn't ask. I am assuming it would be tonsil and adenoid removal but like I said I didn't ask. It's difficult to get all the right questions out at the right time when there's only one of us in an appointment with Eli. He's a pretty good kid, but he is, well we could say demanding. He's had so many appointments in his short lifetime that he is way too comfortable and yet he is thoroughly annoyed by them at the same time. Lately, he does well with the actual exam but then is ready to go. He doesn't want any talking between mommy & the doctor, he just wants out. That's not a big deal for a regular check up but today it was problematic because there was a lot to discuss. So, no, I don't always get the right questions out as I'm trying to focus on the doctor and on occupying Eli. Frankly, I'm not concerned about because I know we'll have another chance to find out before anything is actually done. <br />
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So, the plan with Eli is to get the sleep study, have tubes placed in his ears (and possibly another procedure with that if determined necessary by the sleep study), and then get a hearing test. We know he has a slight degree of hearing loss or impairment simply because there's fluid present. How much? We don't know. We could do a hearing test now to assess that, but whether we do it now or after the tubes, he still needs tubes so let's just do it after and assess where to go from there. There is a possibility he could have some hearing loss due to his strokes, but she doesn't think that's the most likely reason. The main culprit on our list right now is the fluid. Also when he has tubes placed, Infectious Disease wants the fluid cultured to see what may be growing in it. They feel that with Eli's history, there's a strong possibility it could be another "fun" bacteria we need to deal with. For now, we wait for a call about scheduling his sleep study and we start there!<br />
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As we left Eli's appointment he looked at me and said "Now we go see my doctors and nurses." It was clear he knew we were at PMCH and that we should visit the third floor. I actually didn't plan on it since it was about 4:30 and I wanted to grab food and head home, but it was obvious I had lost any say-so in the matter. We headed through the tunnels and hallways we know too well and made our way to the children's hospital. On our way we ran into Melissa who was one of Eli's physical therapists at St. Mary's in Evansville. She now works for St. Vincent and we just happened to catch her as she was heading to the employee gym! What timing! Then we got up to the third floor and had a short visit with some staff there. It seems to always work out that many of our favorites are working when we visit. Or maybe we have just been there too long and have too many favorites! Oh well, they're all great and love seeing Eli. As we walked in I told him he could not go to the playroom because it was for the sick kids. He immediately told me he was sick. When the nurses at the station saw it was him and began to greet him, one asked "How are you?" I don't think she heard his answer of "I'm sick" because it was only meant as a key to the playroom. It didn't work and he had to show off in other ways. During our visit we even got to see Dr. Steinberg who is the cardiologist in charge of Eli's pacemaker (no, Eli doesn't have one now, but he did and likely will again). When we left the floor he wanted to see his fountains (we used to spend a lot of time at the two hospital fountains after his strokes because they were off unit and provided some therapy as he threw coins in them). They were on our way to our parking area so we saw both fountains and also ran into one of his dieticians. We hadn't seen her in months and he was in full show off mode by then. I had a hard time stopping him though because I wanted him to burn that energy off before I strapped him in the van for the long trip home!<br />
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After the visit we went through Hardee's drive through (those were my orders and at that point I didn't care what we ate). We made it to the south side of Indy before Eli started asking/crying to be home with Daddy and Zachary. He does great on these trips, but once he knows we're headed home he wants to be there yesterday. So for the next two hours he intermittently cried, yelled, laughed at his movie, sang the Star Spangled Banner and Take Me Out to the Ballgame (seriously, two of his favorite songs and he knows a lot of the words to our national anthem), and refused to eat the burger he demanded from Hardee's. He repeatedly said he'd eat it when we got home. We got home and Bryan brought him inside. They sat down with his burger and, as promised, he ate the whole thing!<br />
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I'll let you know when his sleep study is going to be and what comes after that. I'm not even sure how soon the sleep study will happen since it isn't scheduled by the office we were in. They'll refer him to that department which will be the one to set it up. Thank you for your prayers and support. We know we are lucky to have so many people pulling for us. Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com1tag:blogger.com,1999:blog-3046332276191815711.post-43126096521735449362015-01-11T18:14:00.000-05:002015-01-11T18:14:01.078-05:00Questions, Updates, and a Couple Prayer RequestsQuestions. Normally I don't mind questions. We all have them. It's how we learn. I like it when people ask about Eli's condition, especially when they want more information about the specifics of his heart or ways to help raise Congenital Heart Defect Awareness. I like it when people ask how the boys are doing, how they're growing, how are each of them doing in school, etc. We learn by asking questions and questions are a way to show we care. But then there are other times when questions are inappropriate. Yes, I realize the person asking may not realize the question is inappropriate. We've all done that, myself included, but it seems that I've had many questions that I think are inappropriate since announcing this pregnancy. {Just in case you're behind in our family news, we are expecting our third child! Due date is May 4} Many times I just want to answer "Nunyadambidness" If you need that in plain English it's "None of your damn business." However, I haven't given that specific answer to anyone yet because a) I'm too polite or b) I'm in too much shock of the initial question.<br />
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The following is a list of questions I've gotten in the past few weeks. They're in unofficial order of my perception of what's been asked most frequently to least frequently but at least once. Below the question is what I wish I had said/could have said followed by what I actually said or did. <br />
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<strong>You must be trying for a girl?</strong><br />
What I wanted to say: Why do you care? or Nunyadambidness.<br />
What I said: Actually we're just trying for a baby. If we get to choose, we'd probably chose boy again. How fun would life be with three boys in the house? And since we already have a couple of them, we have a lotta boy stuff and a false confidence that we know what we're doing whereas with a girl we know we have no idea what we're doing. However, we are mature enough to know that we don't have any say-so in the matter so we will take whichever God has for us. As Zachary learned to say last year in school "You get what you get and you don't throw a fit."<br />
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<strong>Was this baby planned or was it an accident?</strong><br />
What I wanted to say: Why do you care? or Nunyadambidness. or How is that okay to ask someone? or Was that question an accident? <br />
What I said: I really don't remember what I said, I'm pretty much in shock every time someone asks this.<br />
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<strong>Are you planning on more after this?</strong><br />
What I wanted to say: Why do you care? or Nunyadambidness. or How is that okay to ask someone? or Will we be in violation of some code I don't know about if we were to have more after this one?<br />
What I said: No, we're pretty sure this one completes our family. <br />
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<strong>Aren't you a little old to be having another?</strong><br />
What I wanted to say: Why do you care? or Nunyadambidness. <br />
What I said: No. Probably. Yes. Depends on the day. Neither of us were getting any younger and neither of us want to set any Guinness records for having a baby when we're older.<br />
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<strong>Are you doing your Kegels?</strong><br />
What I wanted to say: Why do you care? or Nunyadambidness. or Do you <em>really </em>want to know the answer to that?<br />
What I said: Yes, as we speak. (followed by an uncomfortable pause by the questioner)<br />
***in case you don't know what Kegels are, they're squeezing exercises for women to do with parts they have that men don't. If you need more info then Google it!<br />
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For weeks I wondered if I was just being too sensitive, too hormonal. But I don't think so. If it were my sister, a close friend, or someone else with whom I've shared private information those questions wouldn't bother me, but the people asking these questions are not close confidants. I'm not someone who is easily offended. Easily annoyed, yes, but you've really got to work to make me mad. I wouldn't say these questions make me really mad, but it's getting close. However, I do find the humor in it as well and just enjoy that. Hope some of you find it funny. And if you think you're one who has asked one of these questions, please don't be worried. I probably don't remember who has asked what and if I do I'm not holding a grudge, just getting a laugh about it.<br />
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Another question, rather a statement, we often hear that I know I'm too sensitive about is "Well, as long as this one is healthy." Of course we'd love a healthy baby, but what kind of hypocrite would I be if I said that was our first priority??? Honestly, healthy isn't what I've been praying for. I've prayed for a happy baby, one that fits in our family just as seamlessly as Zachary and Eli each did. I've prayed for my health (and sanity) as I deal with the normal pregnancy issues in addition to keeping up with Eli's needs and Zachary's needs. I pray that I'm able to be there for three kids, to lead them, guide them, and spend enough individual time with each of them. I pray that whatever this baby is like, we can accept and be prepared to take care of him/her. But no, I can no longer pray for a healthy baby. I can hope, but I can't ask God for that. I don't mean to sound negative, I'm not thinking the worst and I don't have any "mother's intuition" one way or another. I've just come to learn (maybe because I'm so old????) that I can't dictate that. The plan is already made. God knows what's in my heart, I just need to be ready for His plan. <br />
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On that note, this coming Tuesday Bryan and I will be in Indy for a fetal echo and other testing. Any testing we've had so far has given great news, but this will provide more information. From what I understand the first part will be an echocardiogram (ultrasound of the baby's heart) by one of the cardiologists in Eli's Indy group. After that a tech will take over and scan the rest of the baby. Before we leave, a fetal maternal doctor will review everything and make sure they have all the images they need. We should definitely have news about the baby's heart that day and I think we will have the other results as well but am not sure on that part. <br />
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Then on Wednesday, Eli and I will be back in Indy for an appointment for him. He has gotten an appointment with an Ear, Nose, and Throat (ENT) doctor for his recurrent ear infections and ongoing cold symptoms. Of course he has no runny nose or cough right now and neither ear was red at his monthly check up last week, but this is easily the healthiest he's been since mid-August. We expect the doctor may recommend placing tubes. If so, that's normally a relatively minor procedure for most. However, Eli requires some special considerations anytime we deal with anesthesia so his procedure would have to involve a cardiac pediatric anesthesiologist. However, we haven't even seen the ENT yet so I'm probably getting way ahead of myself!<br />
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Prayers for safe travels both days would be appreciated. Good news about the baby would also be appreciated but most importantly pray that Bryan and I accept whatever news is delivered. Pray that the best path is figured out for Eli. While we certainly don't want to put him through anything he doesn't have to have, he needs long-term relief from these recurrent ear infections. We need to know what's causing them and treat the source. And, a little selfishly, if something needs done, it would be easier on us to have it done before the baby comes.<br />
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Because of our busy schedule in the middle of the week, I may not post results from either appointment right away. Please remember that no news doesn't really mean good news or bad news, we're just busy! Thanks for the prayers and taking the time to read about us. Remember to cherish Every Little Beat...Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-89201531901237851392014-12-31T22:11:00.003-05:002014-12-31T22:11:41.523-05:00Goodbye 2014I am seeing all kinds of posts on Facebook about ending 2014 and beginning a new year. After seeing those and knowing the kind of year we've had, I feel somewhat obligated to acknowledge 2014. So here it is: Good riddance. <br />
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It's difficult to sum up what our year was like. It actually blended very well with 2013 which was a trying year for us with Eli's 3rd heart surgery, staph infection, multiple pleural effusions, and seven week hospitalization. Later that year he was hospitalized again due to the staph and again due to seizures that were later determined to be caused by the combination of his infection and a couple of his medications. Then Christmas morning 2013 he was vomiting. After a few hours he felt better and started walking a little bit. That's when we noticed the limp. Bryan and I both immediately knew the chances of him having a complication of the staph was as likely as a sprain or fracture. Have you ever prayed for your child to have a sprain or fracture? We were. We never said a word to each other about it because we knew we didn't have to. If it was the infection there would be plenty to talk about once the diagnosis came, so we just continued our silent prayers for an mild-played-too-rough-on-the-couch-injury. But by December 30 he had developed fever along with the worsening limp. We were at Dr. Amy's office that morning and by 3:30 that afternoon Eli and I were in a pediatric orthopedic surgeon's office in Indianapolis hoping he saw some fracture on the xray that we'd all missed. But no. He saw nothing unusual about the film but did see what we saw when he looked at Eli...a very ill toddler with a fever and a very serious, complicated history of staph infections and heart problems. He wanted Eli admitted for further work up and said "I hope that doesn't upset you." I told him that of course it upset me, but I had also come to Indy with a van full of clothes, our laptop, and other supplies because Bryan and I knew something was wrong. If that doctor didn't admit Eli, I was taking him to one of his other specialists or possibly the ER to get him in and worked up. <br />
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So December 30, 2013 Eli was admitted four a fourth time that year. Bryan and I rang in the New Year sleeping on a pullout couch in Eli's room. New Year's Day, the first day of what was supposed to be a new year, a fresh start for our family, the hospitalist on duty that day got the privilege (I use that term with sarcasm) of telling us that Eli's cultures were positive for staph and he would be staying indefinitely while Infectious Disease, Cardiology, and the cardiac surgeon worked out the best plan. Over the next three weeks, Eli underwent more scans and tests than I can remember as the specialists worked to determine the origination of the staph. Some were also calling colleagues around the country to get their opinions because what was happening to Eli was not very common. Friends with hearts in the right places (and whose opinions we value) gently asked if we were seeking second opinions. Bryan and I discussed it, but ultimately decided the timing wasn't right. Eli was still undergoing testing and we didn't have a first opinion yet! Once the results came in and the team was in agreement that the only thing to do was a Fontan revision (total redo of Eli's third heart surgery) along with pacemaker and wire removal, it made sense to us. What was there was "bad" and needed taken out. It was pretty simple. We didn't want to go anywhere else with strangers taking care of our baby. We were in our second home with people who loved him. The three weeks prior to that the team had many disagreements among themselves (no, never in front of us and never unprofessional in front of us but we are bright enough to pick up on unspoken disagreements and don't forget that we've known all the parties involved for several years now). Bryan and I both knew that everyone involved truly cared about Eli (and maybe even us!) and would make the best decision for him. <br />
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So on January 21, Eli was back in the OR for over 8 hours. Initially his postop recovery was wonderful. Then he began having seizures. Then he wasn't waking up the way he should have or the way he had from his previous surgeries. More testing led to the diagnosis of his strokes. Not just a stroke, but many large strokes on his little brain. We spent days not knowing if he would ever have more than the blank stare and occasional cry that we had to guess if it was related to pain, frustration, boredom, or something else. Then came some "uh-huh" "uh-uh" answers that were appropriate to questions we asked. Then one night when the respiratory therapist came in to do his breathing treatment he said "Mommy." I was so excited I didn't even cry about it until a couple hours later. Even more exciting than that was a couple days later when Bryan was changing movies for him. Bryan asked "Do you want Scrat?" which is what Eli would call his Ice Age movies. Eli answered "uh-uh." Usually his answers would stop with the one word, but this time was different. After rejecting the Ice Age movie he said "Madagascar." It wasn't clear, but it was how he had pronounced that tricky word prior to his strokes. Bryan and I stared at each other for a minute. That one word was more precious to hear than him saying mommy to me. It meant he remembered something (however small) that was important to him before the strokes. It meant he could put the proper word with a thought and express that to us. Him saying that was probably the single most impressive moment of his recovery because it meant that Eli, our Eli, was still in there and was fighting to get out. <br />
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His fight continued for many weeks after that. He is still fighting today. Not only does our son have to fight every day, every hour, every minute with half a heart to lead a full life, he has to overcome the effects of multiple massive strokes. And he does. It's a battle that Bryan, Zachary, and I fight right beside him but Eli is our leader. And we've followed him through all the stages of his amazing recovery. <br />
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I don't remember where Zachary was last New Year's Eve. I don't know what he wore to school most days of kindergarten or what was in his lunch because I was in Indy. Bryan had to play single dad with Zachary again and I was thrown even deeper into the world of insurance, care planning meetings, therapeutic assistive devices, new medications, and keep Eli on a very strict therapy schedule. Zachary had to go through over half his kindergarten year with Eli and Mommy away from home. But we all did it. How? Beats the devil out of me. What other choice did we have? <br />
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Yes, 2014 had many, many, many good things that I won't forget. Eli's recovery, the way the four of us have held on to each other, and the news of expecting our third child are our top three favorites. I won't rank our least favorites because we really don't sit and dwell on all the negatives. But they have taken their toll on each of us. I know life for everyone is full of ups and downs. I'm just tired of our ups and downs being so extreme. It's exhausting. I'm tired of seeing how strong my family can be. So, yes, good riddance to 2014. We'll never forget and I won't try to. However, even though I'm usually somewhat of a sentimental sap who thinks time goes by way too quickly, I'm ready to close 2014. I don't know if I'm ready for what 2015 may bring, but I know we have each other. <br />
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This New Year's Eve we are spending together. The boys planned our menu last night so tonight's supper was coneys, bbq cocktail wienies, cheese fries with bacon, macaroni and cheese, and brownies. We washed it down with cherry Kool Aid. The boys have had their baths and are now watching ridiculous movies while wearing matching pajama pants from Christmas. We have a bottle of sparkling white grape juice in the fridge (which I've never tried before) and plan on putting our air mattress in the middle of the living room because apparently we're all having a sleepover in the living room tonight. I dare any of you to top the fun we're having (that is a sincere comment, no sarcasm anywhere in that). I had this on my mind all day and took a little time away from Despicable Me to get these thoughts out so I can concentrate on my family for the rest of this year. <br />
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Thank you doesn't begin to express our gratitude for everyone who has helped us in any way, big or small, throughout this last year especially. Please keep us in your prayers. That's been the biggest help to us. We appreciate all of you and hope you truly feel that. We pray each of you has a safe New Year holiday and many more positives than negatives in 2015. Happy New Year to all of you from all (5!) of us!!! And never forget to cherish Every Little Beat...Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0tag:blogger.com,1999:blog-3046332276191815711.post-10310330953829924032014-12-31T02:34:00.000-05:002014-12-31T02:34:00.830-05:00We Have a New Project...Will You Help Us?Eli's MVPs is beginning a new project. We have been so blessed in so many ways. We have always said we started Eli's MVPs for two reasons: 1) find ways to help Eli through his struggles now and as an adult and 2) to help others. We have been able to do some small things for others over the years, but now are ready for our biggest project yet. We are having a Hospital Donation Drive. <br />
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Over the years we've spent many, many months at Peyton Manning Children's Hospital. More months than I care to count! Over the course of those months we've been helped by the hospital staff and the Child Life department in many ways. We've been given toys for Eli to keep him happy during procedures, to entice him to participate during therapy sessions, or even just to pass time on a slow afternoon (not that we had many of those!). Zachary wasn't forgotten and often received a toy or book when he came to visit Eli. Bryan and I were given many toiletry items that we either didn't have time to pack or ran out of during our lengthy admissions. We were also given gift cards for restaurants close to the hospital and sometimes even gas cards to help us with visits and travel. I have lost count of the number of blankets, stuffed animals, books, toys, and other items we've received over the years from the hospital alone. However, as we go through items I can usually recall the occasion which each item was given to us. <br />
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Also, throughout our many admissions we've noticed items that are often used but not necessarily supplied by hospital funds. For example, Eli always had body wash/baby shampoo available to him from the hospital, but rarely was baby lotion available. We began packing our own large bottle and labeling it with our name so he could be slathered in it after a bath. It's very important to keep his skin moisturized because hospitals are so dry. Often, the nurses and aides will take turns buying large bottles of lotion and keeping it in their lounge. When giving a bath, they'll put some in a small cup and take that to the patient's room. Other items I found out the nurses bought were hair detangler (especially for little girls for whom thorough hair washings are difficult), nail polish, hair bows, ball caps, etc. Those items are mainly for kiddos on ventilators. They help make the child look more natural and it may ease some of the discomfort parents and siblings feel when seeing the patient on all that machinery. <br />
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Some of the things we used often were items that were on loan to us, but were very instrumental in keeping Eli content. These items include a portable DVD player, movies, use of an iPad, and many toys in the beloved play room (including the Cozy Coupe car that he thought of as his own!). <br />
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Our goal with this Hospital Donation Drive is to purchase items to donate to the hospital so they can be given to patients and their families to help them through their tough times of illness or need. We are asking for your help with this project. Here is a list we've complied based on our own observations, input from staff, and the hospital website donation request page. <br />
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<b style="mso-bidi-font-weight: normal;"><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Infant/Toddler,
Preschool/School Age, and Teen Suggestions</span></u></b><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">:<o:p></o:p></span></u></div>
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<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
baby lotion, spoons, and bibs <span style="mso-tab-count: 4;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 4;"></span>-
infant, toddler, & child size toothbrushes<o:p></o:p></span></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
musical crib toys or toys that play lullabies<span style="mso-tab-count: 2;"> </span><span style="mso-tab-count: 1;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 1;"></span>- infant toys (rattles, musical
toys) <o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
board games<span style="mso-tab-count: 7;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 7;"></span>-
Play-Doh<o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
wooden puzzles<span style="mso-tab-count: 6;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 6;"></span>-
crayons, coloring books, markers, paper, stickers<span style="mso-tab-count: 1;"> </span> <o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
superhero action figures<span style="mso-tab-count: 4;"> </span><span style="mso-tab-count: 1;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 1;"></span>- Matchbox & Hot Wheels cars and
sets<span style="mso-tab-count: 1;"> </span><o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
Barbies & accessories<span style="mso-tab-count: 3;"> </span><span style="mso-tab-count: 2;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">- journals<o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
nail polish & manicure sets<span style="mso-tab-count: 5;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 5;"></span>-
DVDs (especially teen interest)<span style="mso-tab-count: 2;"> </span><o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
building kits<span style="mso-tab-count: 7;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 7;"></span>-
bath & body care products<span style="mso-tab-count: 3;"> </span><o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
anything to help little ones breathe deeply and blow (bubbles, small pinwheels,
kazoos, party favors)<o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
anything Colts or Pacers (i.e. hats, shirts, pennants, bobble heads, jewelry)<o:p></o:p></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
popular character toys (i.e. Dora, Sponge Bob, PAW Patrol, Thomas the Train,
Disney princesses & other </span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Disney characters, Teenage Mutant Ninja
Turtles)<o:p></o:p></span><br />
<br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><o:p> </o:p></span><b style="mso-bidi-font-weight: normal;"><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Comfort Items</span></u></b><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">:<o:p></o:p></span></u></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
kid themed pillow cases<span style="mso-tab-count: 2;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
fleece blankets<span style="mso-tab-count: 2;"> </span></span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 2;"></span>-</span><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">
dolls or stuffed animals <span style="mso-tab-count: 2;"> </span><o:p></o:p></span></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
pajamas and onesies (all sizes)</span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
character slippers<span style="mso-tab-count: 2;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><span style="mso-tab-count: 2;"></span>-
socks (especially ones w/grip on bottom)<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;"><o:p> </o:p></span></div>
<b style="mso-bidi-font-weight: normal;"><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">Parental and
Miscellaneous Item Suggestions</span></u></b><u><span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">:<o:p></o:p></span></u><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">-
travel size toiletry items (shampoo, soap, toothbrushes & toothpaste)</span></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%;">- "luxury" travel size toiletry items (lotion, deodorant, hair conditioner, floss &/or mouthwash)</span></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">- stress balls<span style="mso-tab-count: 4;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">- chap
stick<span style="mso-tab-count: 3;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><span style="mso-tab-count: 3;"></span>- gift
cards to restaurants<span style="mso-tab-count: 1;"> </span></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><span style="mso-tab-count: 1;"><br />
<br />
This list is just some suggestions. Other items are welcome but please remember any items donated must be brand new due to infection control concerns for hospitalized patients. You may also donate money so we can purchase needed items or to be combined with other donations and purchase larger items (such as portable DVD players, Wii and PlayStation games, new release DVDs, etc). Please remember that the hospital has patients ranging from newborns to eighteen year olds, so a variety is important. If you donate money, please contact us directly, don't use the collection boxes for monetary donations. <br />
<br />
We are working to finalize drop off sites but currently we will have collection boxes at the following locations: Daviess County Abstract Company (4th floor German American Bank) and Holiday Inn Express (across from Cherry Tree Plaza). Or you may contact Eli's MVPs (812-254-7359 or <a href="mailto:elismvps@yahoo.com">elismvps@yahoo.com</a>) to arrange for drop off, pick up, or with any questions you may have. We plan on collecting items until Friday 2/6/15 so we can deliver them to the hospital the following week....which just happens to be Congenital Heart Defect Awareness Week (convenient how that worked out, hmmm???). We are also printing fliers with the suggested items and drop off locations. We will be looking for places to display those fliers so any offers of help will be appreciated. Also, if your business is willing to be a drop off location, please contact us as soon as possible so we can get a collection box to you. We're hoping to have the boxes available beginning the first week of January. </span> </span>This is a project we have talked about for a long time and are finally in a position to execute. It really means a lot to us to give back to a place that has given us so much. Peyton Manning Children's Hospital employees and staff have saved Eli's life multiple times, made us feel at home, treated us like family, prayed with us, cried with us, celebrated with us, adopted our family for Christmas, and earned the highest respect from us. Through that facility we have made lasting friendships with staff and other families. To be able to repay them in this small way and know we are possibly bringing a moment, however brief, of happiness to a patient or a patient's loved one is very rewarding. Please consider being a part of that. What a better way to start a new year than by helping hospitalized children? Thank you in advance for helping. <br />
Jessicahttp://www.blogger.com/profile/00674985003717566502noreply@blogger.com0