All in all, we are feeling pretty positive about our experience in NYC. Also what we learned there was encouraging. We met with Dr. Barry Zide in the middle of the day, before rushing back to NYU at top speed to meet with Dr. DeLacure. Dr. Zide has a very plush office, quite different from the stark, 50’s looking hospital we just came from. He has done alot of work on children with what’s called “big hairy nevus” and skin expanders where good skin is overgrown using a bubble placed under the skin. Then, the extra skin replaces the nevus. We didn’t talk too much about using this technique on Ella, but more on the whole syndrome that she has including bone and soft tissue. Dr. Zide seemed to think that the nevus on Ella’s scalp might not be a problem at all over time since her hair might grow in and cover it. He described treating her overgrown ear as “a peice of cake” which at least made me feel like it’s not such a big deal. He thinks the facial nerve is a big, complicated problem and that makes the case for putting off the surgery until as late as possible. He described the surgery as a one shot deal b/c of the nerve. So now we are faced with somewhat of a dilemma with some doctors telling us that earlier is better for the surgery and others seem to think we should wait (including Dr. Mulliken here in Boston). We feel that with these conflicting approaches we need more information. We certainly don’t want to risk impacting her great smile any earlier than we have to but if it is true that the soft tissue drives the bone growth than that might be worth the risk. It is very hard to know.