Jenni, I am new to this message board to. I think it's a great place for information. I have an 8 year old daughter with CAH. Our daughter had vaginoplasty at 8 mos. old. There were other minor surgical procedures also. When she was about 1 year old she developed an abdominal abcess. Turns out it was unable to drain because scar tissue had blocked the outlet of her vagina. After that she went for routine exams under anesthesia to determine that she was maintaining an outlet. When needed, the doctor would perform dilation at this time. These procedures were always done during day surgery, and did not require any lenghty stay at the hospital. When she was about 2 or 3 she had some other reconstructive surgery. Following the surgery, we perormed dilation at home by inserting a catheter - briefly - into the vagina twice a day. We had to do this for 1 or 2 weeks; it's been so long I can't remember exactly how long we had to do it for. After that she again would go for periodic exams under anesthesia. As the doctor became more comfortable that the scar tissue was no longer creating an obstruction, the exams became further and furthe apart. She only went once a year for the last 3 years. About a year and a half ago she had more reconstructive surgery (minor things that we had delayed on until this time). At her last yearly exam under anesthesia the doctor was satisfied that she had maintained an adequate opening with no further problems with scar tissue or stenosis. She does not have to return to the doctors until she reaches the age of being sexually active. Then he will do another exam to determine that she has still maintained an adequate opening and that there will be no problems. He does not anticipate that she will need any further surgeries and hopefully she will need no further dilations. I have also been reading some of the messages from people having to do dilation at home. I am not sure why they have had to do this more often or why they have had to do it while their children were older. I only had to do it at home for a short period of time when my daughter was quite young. I have never had to do it again. The doctor has never made any mention of my daughter having to do it either. He believes - and I have complete faith in him - that she has a functioning vaginal opening that will hopefully need no further "maintenance". You also asked about what you tell the older children. My daighter has always known that the reasons she goes for exams is because she didn't grow properly and they had to do surgery in that area to make an opening that she wasn't born with. About a year ago my daughter asked me what she looked like when she was born if she didn't have a vagina. I told because her body was trying so hard to make the stuff she takes medication for it was making too much of some other stuff instead, and that "other stuff" made her grow wrong and she looked like a boy. She said "Oh. Gross." Then she changed the subject and went on to talk about other things. It didn't seem to phase her much.If you have any other questions, feel free to e-mail me at lauri4tr@aol.com. Good luck!