We've been frantically shooting off e-mails and making calls the past two days. Today we got a reply from Dr. Delfanian in Minnesota. He told us that given the nature and location of our daughter's H we need laser treatment quickly.
We have yet to connect over the phone.
If anybody has any thoughts on this Dr. we'd love to hear them. A search of his name on here turns up glowing recommendations, however those appear to be mainly for PWS cases.
We're very concerned with the idea of undergoing laser surgery and after reading this board had thought Propranolol would have been the better choice.
Anyway, I'll write back and let you know how our conversation goes.