My heart goes out to you,..I  have days that I remember how it felt to hold "my daughter"  I have an older son so I knew what boys were all about, but when they handed my baby over and said "it’s a girl" , all my wishes had come true.. Like you we called everyone, I was on cloud 9.. a preciuos baby girl that Id hoped for, loved, hugged & kissed... it sounds crazy to some people when I tell them I miss my daughter, a part of you feels the horrible loss of a child, while another part tells you, snap out of it, your baby is right here living.. but it’s not that easy, I think unfortunately I will always morn her in my own way, it’s not easy though having the grief for a loss of a child that isnt gone.. sometimes I feel like we should of had a memorial, reality hits and I know that doing that would only make me the crazy lady who had a funeral for a baby she didnt loose.. it’s hard to try and place the feelings so that you don’t take away from the blessings you have..

Your daughter was very lucky to have came through her crisis, it’s so terrible that here we are in 2003 and in so many ways for CAH and it’s sypmtoms, so many hospitals are still so far behind on treatment and diagnosis..

Even just as recently with Jacob’s surgery, immediately following surgery Jacobs temperature went up, they told me that was normal with any surgery not to worry it wont go very high.. I know my son and I recognized that he was becoming to warm, his little cheeks were beaming red, and hot to the touch, I went to his nurse and asked that he receive some Tylenol.. well she said, he’s doing great dont worry we’ll will be in soon with something for him.. 20 minutes later and still nothing, again I went looking for her, she took his temperature it was 101.8.. "oh he’s fine, thats not to high"  luckily being the persistant person that I am I insisted she administer Tylenol, well she would have to get a hold of the doctor and see if it was on the orders.. I immediately got out Jacob’s folder I brought with me that had all of his important information regarding treatment in times of stress.. Oh well ok, let me be right back with that Tylenol she tells me..  Finally they treated his fever and he started to look a lot better and waken up a bit more... I dredded each shift change, because with that I had to run through his medical needs once again, one nurse got impatient with me  "there are no orders for double cortef from his urologist" .. this was in the evening after surgery!... I had to get on the pay phone and call his endocrinologist and let them speak regarding Jacobs needs..

I will never assume the hospitals know how to treat adrenal patients,.. anyway Im rambling again :) I just wanted to respond about your loss, it is hard, Im not sure I’ll ever be able to forget my little Emily..  I still have her birth certificate, I cant bear to throw it away..

It was also good to hear of another family who has gone down the same road.. for whats its worth. Im so sorry about your son, and if were lucky in time the grief will go away, im not holding my breath though..

Take care and it was great to hear of you & your family.