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!