All news is good news!

Here's the fun part for me- Mom. Chase's medical update.

We've definitely cut back on our rotation of doctors in the past two years. The days of running around all the time are over. Now we see most of our specialists on a 6 month rotation- some of them annually!

Let's start at the heart shall we?

Last Monday, 3/7, Chase had his semi-annual echo with Dr Weinhaus. I finally got the results yesterday and I am very happy to say that he is doing excellent! In fact, Dr. Weinhaus says no surgery for the next year- possibly two! This is awesome news and I feel like taking a week off work just to celebrate. But I won't :-)

What I did do, is have Dr Weinhaus go thru step my step of Chase's heart condition & how it was repaired. To be honest, I couldn't remember all the details, which is funny since I was practically an expert just two short years ago. The "leaky valve" that was causing the right side of the heart to work harder to compensate for the left side was the Doc's original concern. Looking back at this blog (another reason I'm glad we did this!) in April 09- Chase's leaking was "moderate to moderate/severe" - which is not good. Now, due to the medications he's on, it's now mild to moderate. Much better and most patients (according to Weinhaus) can live this way for quite some time.

The surgery driving factor for his heart is the conduit (new valve) that was put in. This doesn't grow with Chase, so when he outgrows it- we get another surgery. However! Doc says where they used to see patients needing surgery after two years, he's got one who's 10 and still on his first valve. Everyone's different of course, but who knows- maybe the next time Chase has OHS- they'll have something created that will grow with him. Stem cells are a wonderfull thing you know! Also- when reading the surgical notes to me (yes, I made him get that detailed) Doc noticed they put in a 12mm conduit. Which is .5 inches. Which is larger than most- especially for a new born. This is encouraging and makes us hopefull for longer time.

His feet. . .

We still see Dr. Noonan every six months. The past two times, he thought Chase only had one club foot, not two . . . I take this as good news :) In fact, such good news that Dr Noonan said we will follow up when Chase is three and we will probably be done with the night braces. Um yeah, about those. Chase wears them . . . . occasionally. . . more now that he figured out how to climb out of his crib. Who knew I'd learn to love those nasty things? They definitely keep him on lock down at night. Anyways, 3 is way better than the 5 yr mark we heard initially, so I'll take it.

His liver. . . .

Dr. Yaffee is quite pleased with Chase's liver tests, has been since he was diagnosed. Chase is an asymptomatic case so it's likely he'll remain that way for a long time. Still no smoking & no drinking for him. But it's encouraging that his number remain good as there is actually nothing we can do to prevent or treat this condition. Someone "up there" must like us!

His immunology. . .

Dr. Seroogy sees Chase annually. This is also something that is just "watched, not treated." Considering Chase has kept well for the most part (we're talking major infections here, not his weekly cough/cold) she has given us the green light to get live vaccines and he is responding well to them. No nasty side effects and while it sometimes seems like a big waste of time to have one more doctor to see, it's nice that she's looking out for him.

Genetics. . .

We had an appointment with Dr. Rice in January. By all accounts Chase is a normal little boy. His 22q does not hold him back at all & Dr Rice is estatic with his weight & height and has told us to come back in 2 years. We still use Birth to Three- speech and OT. Chase's speech has been progressing rapidly- today he told me "more bubbles mama" and I heard every syllable. Fine motor and gross motor skill are just where the should be- he is doing so good!

Got me some new kicks

Not sure if you've heard, but I finally got rid of those stupid casts this week! Very excited about that. Right after Nurse Robin sawed 'em off up went my legs and I couldn't stop staring at my toes. It's been awhile since I've seen those & man, DID THEY STINK! Mom tried to hold back the coughs and tears, but even I have to admit they were pretty rank.

Now, don't be too judgey about my skinny legs. I promise you in no time I'll have them up to par with my guns and the 6 pack abs I'm working on.

Speaking of the workouts, so after I got my casts off we went straight to get my new kicks. You can tell from the last picture how excited I am to have them. You would think, after all I've been thru, that someone would cut me some slack. Give a kid just a small rest to hang out, grab some toes, maybe try rolling over on my own (I totally rolled over with the casts on Monday btw!) But no, let's slap on some 1950's white shoes with a super cool (not really) purple bar. I am trying to adjust, but it hasn't been easy. By Sunday it'll be old news- and as an added bonus, the guy at the shoe store told Mom that most kids who wear these turn out to be really good snowboarders. I think he's kidding, but not sure.

It's been a long week- going to hang out and watch the Big Ten tournament this weekend.

Go Bucky!

Chase

PS- I have to wear the shoes 24/7 until I start to walk, then night/naps until I start school. At least that's "ballpark"- keep your fingers crossed it's less.

Some good news!

Today we had a casting appointment (change out the cast, not an audition- although Chase is cute enough to be on tv) at American Family Children's Hospital. It's his last cast before surgery next week & we met with Dr Nemeth, Dr Noonan was out today.

Anyways- the casting went fine, Chase ate and then promptly peed on everyone. I warned the doctor, but he said it's an occupational hazard. Probably wouldn't happen if they hadn't let him go all free willy- the other clinic covers him up. But hey, who am I to tell the man how to do his job ;-)

That was routine, but the big news came from our nuerology appointment on Monday. As some of my Facebook friends know I've gotten quite accustomed to waiting in doctor's offices. It usually doesn't bother me, hanging out with Chase is my favorite pastime, but Monday the fine folks at AFCH tested my limits. After waiting 30 mins for Dr Ishkandar to spend 5 mins with him, to be told we need new x-rays, waiting 45 mins for approval from Dean, then waiting on radiology- well- it was a really long apt (2.5 hrs) that ended with me just leaving & telling them to contact Chase's pediatrician. Which was never done.

Anyhoo- so since we were there today I had them page the good Dr. Ishkandar to get the results. More mix-up'd info later- I just got a call & ALL IS GOOD!!! We were told in the NICU after Chase was born that he had a "weak neck." This was thought to be an abnormality in the c1-c2 vertebrae. It was also something that carried over to Milwaukee Children's and was a pain in my butt because due to insurance reasons Milwaukee couldn't run any tests. So we finally got the confirmation today that Chase's neck is "perfectly normal" and we will need no follow-up.

Happy to cross another thing off the list!

And on a side notes, I realized in the last post that I did not update on his heart!

We are still seeing the AMAZING Dr. Larry Weinhaus, who has been incredible :-) Chase has had two echos since he's been home. He does have some "insufficiency" which is where the oxygenated blood mixes with the non-oxygenated blood, but it has not gotten any worse. There are several levels of severity I'm told (mild, mild-moderate, moderate, moderate-severe, and severe) Chase's is Moderate/moderate-severe. This is ultimately what could move up his next heart surgery. Dr Weinhaus is very happy with Chase's progress, and I've learned not to worry until the doctors worry. It goes much better that way :-)

So now you're fully updated!

Chase Update

Since it's been awhile since I've done this my writing skills might be a little rusty.

I've been home for about 6 weeks now. I know this bc today Mom had to go back to work & yesterday I was being congratulated on blessing the Earth for 12 weeks. Pretty sweet.

All's good on the home front, Mom and I have been bouncing around from doctor to doctor. Here's a little breakdown of the medical version of my life:

Club feet- this is being handled by the pretty cool Dr. Ken Noonan. Apparently he's quite the man when it comes to Orthopedics. We hang out once a week and I get new casts put on. They are the full length supa casts made of plaster. The first time I had them put on it sucked, so I peed all over them (3 times) But now I'm used to them and Mom jokes that I'll be the only 6 month old with 6 pack abs from doing leg lifts. The plan is 5-6 weeks of casts (almost done) surgery on the 10th (next week) for a tenotomy- which is where they cut my tendon? I dunno, sounds bad but it's not. Then another MONTH in casts. After that I've gotta wear "special shoes" (call me Forest and I'll kick your butt) 24/7 until I can walk & then only at night/naps till I'm in school. It doesn't sound that great, but hey my feet are already looking better & if Troy Aikman can do it so can I.

22q11deletion- We've met with Dr Seroogy (Immunology) Dr Shaw (ENT for cleft pallet) and someone else I can't remember & all has come back positive! Well the news was positive, the tests were all fine. They're going to keep an eye on me & check on me once in awhile to make sure we're still all good. But right now I'm golden!
And the brand new diagnosis! Yep, 5 minutes before we checked out of the hospital the GI doc came in and busted out that I have something called "Alpha 1 Anti-trypsin deficiency" Apparently it's a genetic (not 22q related) issue where I don't make enough of this stuff, which can cause serious liver and lung damage. So if you think Mom was anal about the no smoking around me before, dude- she's got me on lock down now! It was a little scary at first bc worst case can be liver transplant and lung disease, but my GI doc DR Yaffe said my numbers aren't too bad and we'll just keep an eye on it. My pediatrician (the coolest Dr Christine Pagel) also told Mom that if I don't have any issues by 2 months that I might be one of those asymptomatic kids. That'd be pretty cool.

So that's where I'm at medically.

Now real life stuff? I'm pretty much the cutest kid ever. With a healthy ego too ;-) I'm smiling, chatting it up & hanging with my boys. Had our first play date on Saturday. Will was running all over the place! Even got his hands on a blow torch! But that's a story for when Mom's not looking.

Well, it's getting late & Mom is probably going to leave work early to pick me up.
It was fun catching up!
Chase