Kathy,
I enjoyed reading your story, thanks for sharing it. CAH had affected our
decision not to have any more children. Mostly the cost. We do not qualify
for any gov't assistance. We *do* have insurance but they don't pay for the
only ped. endo in our state and at $240 a visit, it really adds up. My son
had his levels drawn every month when he was first diagnosed and those were
sent to a lab in Seattle WA and the cost is $600/month and again my ins.
doesn't cover that. My son is now in an experimental study so they pay for
his meds and blood work, but we pay for transportation (airfares). God
*did* work mysteriously though. My son was a normal, healthy active child
when we decided to have another. Towards the end of my pregnancy I noticed
a change in him. He was diagnosed when my baby was 3 months old and 6 weeks
after she diagnosed with another rare birth defect. I'm very thankful for
the timing of things. We would have never planned our daughter and she's
such a delight and CAH-free. But had we known about Damon's CAH when I
became pregnant I would have been on predisone and had to undergo extra
testing and it turns out she's fine. My husband is now looking for a
hihger-oaying job so the medical bills aren't a struggle. And, yes we do
treat CAh matter-of-factly, just like Mommy's eyes don't work properly so I
wear glasses. he does bloodwork without even flinching and takes his
Solu-Cortef inf's without any trouble and he's only 5. His spirit and
inocence has taught me alot. But, again we could never afford another child
if it had CAH. However I thank God everyday for the one I have :o)
Selena