Wednesday, April 8, 2015

A Variety of Updates and Lots of Pictures

I 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:


Pizza Hut Fundraiser
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. 

The four of us.  We're all wearing Eli's MVPs shirts except for Eli.  His says "I am a pediatric stroke survivor"


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!

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!

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.

The finished product!  It was delicious :)

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)

He was worn out after a long day and barely stayed awake long enough to change into his pjs!



Tonsillectomy
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.

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. 

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?!?!?) 

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. 

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!


As we waited for surgery he got to practice driving.  Eli wasn't too sure at first but got used to it pretty quickly.

He loved playing with bubbles Daddy blew for him in the hallways.  He wanted to take them back to the OR when he went.

Snuggled in bed in the PICU a few hours after surgery.  And as always for anything medical, Pablo was with him




Meeting Cody
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!)

The four of us with Cody.

Zachary sitting with Noah Vonleh, former IU player and current Hornets player.


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.

The boys getting their basketball signed by Lance Stephenson who now plays for the Hornets but he played for the Pacers last year.

Kemba Walker signing the boys' ball.

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! 

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.

The boys and Cody comparing shoes.


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!



Pregnancy
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!

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! 

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. 


Growing baby! 36 weeks

Belly size is just under 48"
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!!!



Life in General
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! 

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!!!!




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...


PS --  Eli wanted to include a message:  kkkp;[ jun-\k,''; i9j



2 comments:

  1. I just wanted to say that you guys are such an AMAZING family and I truly enjoy reading your updates. You have 3 beautiful children and from my family to yours God Bless and you guys are ALWAYS in our Prayers!!

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