re: re: re: new mom to son with swCAH......To Sandra
Feb. 28th, 2005   9:59pm

Catherine, welcome to the message board; and congratulations on the birth of your son!  Sandra’s post really hit home to me, as did your’s.  We have 2 sons with SWCAH -when my 2 1/2 year old was diagnosed on the newborn screening, I couldn’t believe it --even though he had been sick that  whole week - he lost 25% of his body weight and our pediatrician told us a couple days more & we would have lost him. I remember sitting on my couch just saying the words :Congenital adrenal hyperplasia" over & over in my mind, like I could will it away.  I spent many hours on the computer -crying & crying...my husband finally banned me from the computer :)  He was always the one to point out things could be much worse & how lucky we were they caught it (we are from NY & at that point, it wasn’t a neborn test yet)....luckily that’s his general outlook -----upbeat, where I’m the worry wort.  I sometimes laugh & think since I worried so much anyway, God gave me something to truly b concerned over (just joking -sort of).  Anyway...all that said...

Life w/CAH became normal very fast for us as parents.  -and when our 2nd DS came along with it(he’s now 9months old) , we honestly weren’t surprised -just prepared.  Every day gets better -especially as they get older -just easier to deal w/meds (I also breastfed), they can tell you when something is wrong, you learn what is normal for your child...  We are truly blessed! -and as mentioned above, try to just enjoy him.  I lost a lot of tat "new babyness" with our first one because I was so stressed -with our 2nd one, it was jsut normal (except for the oxygen he was on for a month, but that’s a whole other story...)  Like Sandra, you can always email me as well -just let me know here. Congrats again & best wishes!

 

Darlene
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