So, 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!
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| Second grade |
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!
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.
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| The cards and gifts he opened at the hospital |
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| Cards from his classmates! |
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| I don't remember what was so funny, but he was cracking up! |
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| People did lots of special things to make the cards memorable for him |
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| Kissing one of the cards that was so special to him |
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| 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! |
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| 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! |
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.
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| Signed by all the second graders at school |
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| Signed by the teachers and staff |
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| Not a great picture, I must've deleted my good one (or someone else did!), but this is the banner from the hospital staff. |
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| 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! |
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| 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! |
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| 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! |
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!
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!
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| Eli wants an Ice Age party this year, so here he is after he opened his Ice Age birthday shirt from us. |
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| 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 :) |
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.
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.
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| 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! |
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| 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. |
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| 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! |
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| 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. |
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!
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.
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.
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!
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| $15 St. Louis Cardinals 2019 Calendars |
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| 12oz candles are $14 |
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| 14oz candles are $16 |
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!
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....
