Hi Tina,
Like every other parent here, I can't begin to tell you how scared I was when my newborn was diagnosed with SW-CAH. We almost lost him before his condition was finally discovered... thank God a young doctor attended a conference where CAH was mentioned fairly recently... or who knows if they would have figured out his problem in time. He was so sick, I was sure that this was what his future was going to look like... but I was wrong.
That was 11 years ago. Since that time, we've welcomed two more children into our lives, another son (now 7, also with SW-CAH), and a little girl (without CAH).
When my son's get sick with a flu or anything else that tends to promote vomiting, they require a little extra attention. I won't lie to you about this... I get scared every time (in fact I just posted a "scared" thread in the main forum). But to this day... they've always come through with flying colors. I've been fortunate in that neither of them have suffered broken bones, etc. They both had the chicken-pox, but neither of them had any difficulties with it at all (other than typical flu-like symptoms).
Other than the little extra TLC needed when my boys get sick... you wouldn't know them from any other boy in the classroom or the playground if your life depended on it. They like salt (one favors it more than the other), and they wear very cool medical alerts that I paid good money for and they're both very proud of them. The oldest like the bracelet, while the youngest prefers his red necklace. They're both top students, they both seem to be very popular around school, and both are very active in sports. One of them enjoys sports for the social aspect while the other is a hard-core competitor (I have to coax him into the house for dinner when he's practicing batting or hoops after school).
I don't know if any of this helps, but it's a day in the life with my kids... and so far it's not too shabby. But then again, who knows... I may have it easy.
