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re: re: re: re: re: my child with cah Jun. 20th, 2008 4:06pm
We feel the same way about letting others know about the ambiguous genitalia...seems like anyone could look up CAH on the web and have that pop up quickly. We just ordered the medic alert bracelets yesterday and on it we put adrenal insufficiency because our endo even said that would make more sense to the medical people than CAH. When the ambulance came to our house with a handful of EMTs none of them knew what Congenital Adrenal Hyperplasia even was. People asking about your daughter (either family or friends) simply want to understand what her condition is. We've tried explaining each of the words in it and just end up with people looking confused. (Heck, I was!) Adrenal Insufficiency makes more sense to people and we're hoping won't lead them to knowing what may be private for us.
All of that being said as with the surgery... We're nearing that time and are nervous as well. Getting information helps though. Supposedly the CARES website can give you a list of surgeons they approve of. Read on their website and if you haven't picked up the book "a parents guide to CAH" - definetely get it. (I think you can even purchase it through that website). I emailed CARES yesterday to try and get a copy of the list of surgeons but haven't received a response yet. From what we have learned, having an expert surgeon improves your outcome.
When I start getting worried about our daughter and her future I think to myself that it's just even more important now to have her feel loved by many people (immediate and extended family) and feel good about who she is. We plan on giving her opportunities to find out her god given abilities and build those up and have her grow up in a home filled with love. A child who feels confident in being able to achieve either in music, art, athletics, etc. seems to be more resilient. We are strong in our faith and hope that she will be able to fall upon that as well for comfort (whether dealing with CAH or just regular kid stuff).
Lastly, when I talk with my mom about the surgery and worrying about if she'll feel bad when she's older she pooh-poohs me (but in a good way). She says that's something from when she's just a little baby ...so things looked different when she was a baby. Who cares? No big deal. That was a long time ago. Well from her comment of that I'm not sure how right she'll be, but it reminds me that our daughters will often respond to it as we do...no big deal...no big deal. At least that's what I'm hoping.
(You thought you rambled). We sure get going don't we?
