Yesterday we met with Dr. Bruce Bauer at Children’s Memorial Hospital in Chicago.
This was quite a trip because we went to and from Chicago by 24 hour train ride. Last night I slept okay and so did Ella so we’re good. However, on the way going, Ella had a very difficult time going to sleep. She got clearly overtired and at 10 p.m. at night she just started bawling which is very, very unusual for her. We stayed with cousins Val & Adam, and visited cousins Victor and Shoshana too. We saw a lot of Chicago and generally had a good time. Dr. Bauer seemed very knowledgeable and personable. One reason I wanted to meet with him is because, as opposed to all the other doctors we’ve seen (everywhere) he is a top notch doctor who actually corresponded with me by e-mail! Apparently, he has seen a lot of patients with nevus problems (especially big-hairy nevus syndrome). As a matter of fact, we saw him a couple of months ago on The Learning Channel on reconstructive surgery. He treated toddlers with nevus that covered a lot of their face and had to be removed.
What he told us was very hopeful. He seemed to think that laser treatment would work for Ella to some extent and of course, some of the nevus would be cut out anyway during the overgrowth reduction. The other things we liked about him were that he assured us that he himself would be doing with surgery together with two other specialists (one who would be the boney structure specialist). Also, he recommended that we get 3D CT imaging of her head done in Boston and he referred us to a specialist for that. This is the first time a doctor has definitively said that we need that and it makes a ton of sense. So, in short, now we are thinking we might like to have the surgery done in Chicago. So, back to the drawing board with the insurance. In the meantime, the Reconstructive Surgery Institute at NYU is getting flakier by the minute. I’ve been waiting for about two weeks for them to write a letter to Ella’s pediatrician regarding Dr. Delacure doing the surgery and not Dr. McCarthy. Time passes and I find myself just nagging and nagging to get it done. If Dr. Bauer’s clinic is more responsive I’m beginning to think that is the way to go.