Eli's 8th Birthday and paracentesis #11

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!

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.

The cards and gifts he opened at the hospital

Cards from his classmates!

I don't remember what was so funny, but he was cracking up!

People did lots of special things to make the cards memorable for him

Kissing one of the cards that was so special to him

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!

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.

Signed by all the second graders at school

Signed by the teachers and staff

Not a great picture, I must've deleted my good one (or someone else did!), but this is the banner from the hospital staff.

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!

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!

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!

Eli wants an Ice Age party this year, so here he is after he opened his Ice Age birthday shirt from us.

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.

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!

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.

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!

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!

$15 St. Louis Cardinals 2019 Calendars

12oz candles are $14

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....

Eli and Family Update

Hi, everyone!  Here's a quick update of what's going on with the Veales.

I'll start with Eli.  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.

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.

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!

He's as cute as ever!

Mommy and Eli just before paracentesis #9 in mid September

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.  

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!

Our sweet guys walking into school together on the first day

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!

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.

Zachary 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.

Zachary in his new glasses and all dressed up for Dress for Success Day at school

Family picture in front of the Jurassic World photo scene for Zachary's birthday

Zachary with his homeroom teacher for fifth grade.  Yes, she is wearing heels and he is still taller than her.

First day of fifth grade and second grade.  Eli was happy about going to school, just not about having his picture taken.

He was in a much better mood and asked to have his picture taken outside school.  Love my boys and their matching shirts!

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!

Charlotte 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.

Our baby is growing up!

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!

At her first baseball practice.  This drill had them pointing with their glove where they wanted to throw the ball.  She did pretty well!

Being silly on Picture Day at preschool!

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!

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.  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.

I do have a list of prayer requests:
- that Eli's procedure Tuesday goes well.  If you can, please wear your Eli shirts and/or bracelets on Tuesday October 9.
- that we get good information from our phone conference with CHOP next week
- 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
- for my eye to get better.
- for us to handle everything going on
- 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!

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!

What was on the sidewalk outside the concession area

Zachary and Eli working concessions as Charlotte tries to decide what to order

Some of the people enjoying hot dogs or walking tacos

Zachary LOVED working the concession stand

Some of the family who came to the fundraiser

The guest of honor exiting the pool after having played for a long time!

Charlotte loved the slide!

They had Eli autograph a baseball and it was raffled off.  

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.  

A family photo at the end of the night.  We were all wet, tired, and so happy!