Wow! I’m shell-shocked. We spent 6 and a half hours at the hospital today. This was for the long awaited Cranio Facial “team” appointment made about 3 or 4 months ago. As Etan said, at Children’s Hospital, they use the term “team” very loosely. We were just saying last night in the support group how these meetings are never what you expect them to be. Again, we were passed around to different doctors, floors and departments but most of the time was spent waiting. After seeing Dr. Mulliken (plastic surgeon) for about 45 minutes we ended up waiting at least that long for the Maxillo-facial surgeon to come by. He talked and talked to us. By this time we had found out that the blood that we had drawn yesterday, (yes, we spent most of the afternoon yesterday at the Children’s as well), didn’t come out right and we had to get the test redone. Then we rushed to another floor to see the audiologist. We decided not to have the hearing test done. Okay, back to Cranio-facial…..then down to get fitted for a helmet….then Dr. Duffy’s nurse informed us that there is a suspicion from Ella’s blood result that her liver is not functioning perfectly normal. Then they need a waiver from us and half the payment upfront for the $700 helmet. So we rush around Fegan and Hunnewell buildings totally confused about what we are supposed to do and where we are supposed to go. Anyway, for right now, Dr. Mulliken suggested getting a helmet for Ella to help shape her head and avoid the flattening that is a result of her head turning rightward and from spending so much time lying flat on her back. The other thing he will try to do in May-June is to do a test abrasion on her nevus to see if that helps at all. Otherwise, more major facial surgery will have to be put off for several years. I guess from all this, I did come away feeling hopeful, but exhausted….. We got Ella’s blood labs drawn before leaving and then spoke to Duffy and the on-call epilepsy doc once we got home. The liver fuctions are mildly high. We may have to go in again for blood tests next week. If they keep rising, we could have a problem with the meds. Huh, I’m really tired. That’s an awful lot for one day.