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Hi!
Glad you could join us here! We're not very talkative, but everyone is always happy to answer any questions you might have.
I have 3 children also, but in the reverse as you. My twins have CAH and I have one unaffected son. The twins (identical girls) also have the severe salt-wasting form of CAH. We didn't have the same initial experience as you....that must have been extremely traumatic. I can't even imagine how stunned you must have been to find out your boy was not a boy. But, at least they did catch it and she is fine now, right? The twins spent their first 30 days in the hospital, so I know how you feel about that. I think a lot of us here have that shared experience.
I'm very curious about the surgery though. For the life of me, I can't remember not being able to feed them for that long before the first surgery. And there was no "cleaning them out" either. Maybe its just different procedures for different hospitals. We were very fortunate that we were stationed (my husband is in the military) in Dallas for the first surgery and took them to Children's Hospital with wonderful doctors. The second surgery was in Salt Lake City (Children's Primary) and again, great doctors. Just the luck of the draw at that point. When have they rescheduled your surgery for? I'll be thinking of you and your daughter and sending positive energy that way. She'll do fine and so will you. (I know a lot of focus is put on the child, when its really the mom that's a nervous wreck. It DOES get better! I promise!)
Hope to hear from you again!
Angi
----- Original Message -----From: Arreana99@...Sent: Friday, May 18, 2001 10:41 AMSubject: [CAHsupport] Post MessageI am really glad that this group is here. I have 3 children 2 very healthy
boys and a Daughter with Addison's' s Disease and CAH (the salt wasting type)
She also has ambiguous genitalia. When she was born we were told she was a
boy, just a little deformed so we named her Adrian Cody. We brought her home
just like she was a healthy little newborn boy. When She was 6 days old, I
got a phone call and my husband was at work. The doctor (a real jerk) told me
I had bring my baby boy (girl) right to the emergency room or he (she) would
die. So we went to the ER and The next day we found out she was 100% female.
The doctors ended up doing a bone marrow test to make sure that she was 100%
female. She spent over half of her 1st month of life in the hospital. We
renamed her Alexia Rose. She is the most beautiful little girl. But now we
are going through getting ready for a surgery. She was supposed to have her
reconstructive surgery May 16, 2001, which was 2 days ago but She had to go
without eating the day before, be cleaned out with fleets phospho soda, and
not have anything to drink after midnight. Well, we did all the but because
we did she became dehydrated, feverish, and somewhat lethargic. The could not
get an IV in her so we had to stay their until she drank enough to hydrate
her somewhat. then we returned home. So now we have to go through all of this
again and it is so taxing on my husband and myself. So, I would like to know
if anyone out there has any advice for us. I would really appreciate anything
no matter how insignificant it may seem. We have made a website for our
daughter. If you would like to check it out the address is
http://ourlittlerose.homestead.com/index.html
Thank
you,
Tammy *aka Arreana
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