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Andrew'sMom

Well-known member
Joined
Feb 24, 2006
Messages
816
Location
PA USA
Andrew had his annual exam today (with yet another new doc, as his old one {again...grrrrr!} left last year!) and we left with a good report. His Z-scores are up from last year, which indicates progression of valve disease and further dilation of the ascending aorta, but the increases are small enough to not require any intervention at this point. The doc did caution us that he is approaching a period of rapid growth and things could get dicey as he hits the pre-teen/teen years. I guess we'll just take it one day at a time and go from there! HOORAY FOR TODAY'S GOOD NEWS! :D
 
It's good to hear that he won't have surgery yet! Sorry to hear that there was progression though. Wouldn't it be nice if these things would just stay stable until a convenient time in the far away future? Like say, 50/60 years from now or so? You never know though, if he progresses little by little it could be quite some time before anything drastic has to happen.
 
I am glad that you are sounding upbeat!! Good mom that you are!!! It must be frustrating to walk each day into the unknown with your child, but you are carefully and religiously watching him. So many eyes and so many professionals (hey, sometimes the new guy turns out to be the best guy!!) that I'm sure you are keeping him safe. Given what all kids go through, the scares and worries they hand us -- vigilance is key. You are there for Andrew. Good job! Good report! Thanks for keeping us updated.

Now go make him stand against a wall in the laundry room and put a ruler on his head. Mark his height and date it and do that every 3 months. If he has a growth spurt then you'll know it and can get in touch with the cardio to see if they're interested. You'll feel better knowing that you are watching him carefully. ;o)

Again -- you rock!!!

Best wishes.

Marguerite
 
Great news, Jen!! I'm so happy for you and Andrew. Sounds very similar to ours. Let's just stay with this kind of news for many years!!

I have some words of encouragement from a few years ahead age-wise. As you know, when Matt was first diagnosed, and for several years, his measures went up, up, up. Then they seemed to stabilize somewhat and almost leveled off (prob due to Lisinopril). The only time they DIDN'T budge was during his monumental growth spurt year before last (he's 6" 1" now). I don't mean don't watch carefully during the growth spurt, which you have to do, just that it doesn't necessarily have to mean a big change for the worse. That was a big "Whew!" This year the LV went up a little (see post in heart talk) again, but I'm so hoping that he really will hold out for the long term. At this point, after six years, it already feels a little like long term! And so hoping Andrew will too!

All the best!!!!

Jane
 

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