(Anyone get the reference?)
A little more from the conference: When Mr. WG met with the docs privately, he asked our favorite question: What will D. be like when he grows up? Now, for some reason, every doc we ask is realllllly reluctant to give a straight answer. Why do you think that is?
Anyway. So, the doc said, "Look. 60% of these kids don't live independently as adults. Another 25% live somewhat independently -- maybe in a group home or on their own with some kind of help. A very small percentage truly live independently."
What cheerful thoughts! Goody!
Right. OK, but the doc, just like the last fairy in Sleeping Beauty, tempered the harsh decree, adding, "But remember, our numbers are skewed, because we only see the kids with problems. We know Sotos is underdiagnosed. So we know there are a lot of people who have it but who don't show symptoms and who live normally."
Have I mentioned that I don't really enjoy riding roller coasters?
Monday, July 24, 2006
So many questions and answers that somehow seem wrong...
Posted by WriterGrrl at 2:10 PM
Labels: General Hospital: Sotos Syndrome
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2 comments:
Ugh. Those sound a lot like the stats for Julia's stuff and they always manage to depress the hell out of me so I have an inkling of what you're feeling. Yeah yeah our kids aren't statistics blah blahcakes. It's hard not to focus on them...
Can't say I blame you. The uncertainty of it, the unknowns, so much.
I know it's of little consolation, but I think you're doing a kick ass parenting job; you and the mister, make that--but more so you--especially since that's typically the distribution of parenting, as evidenced by your most recent post :-) and the same situation in my house as well.
Hmmm...maybe Zoloft could help me. 'Cause lord knows, I spend an awful lot of time crying lately, even though I'm sure much of it is my all-over-the-place hormones. But still, thinking 'the worst' thoughts of losing your child, etc., yeah, I've been there more and more in recent weeks. The world, she is most definitely a scary scary place, and getting worse by the day.
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