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!
