Hillary - I am not trying to push info on you - as several facts about this rare condition have been posted to you and they have educated me too. I am first and foremost wanting to offer up support. How frustrated you must be and scared and confused. I want to extend to you my e-mail firstname.lastname@example.org
for a private discussion if you are interested. Dr. Waner was mentioned above and he is actually in NYC now - but he has a great team - including Dr. Berenstein. I have some personal contacts there and would love an opportunity to help you if I can. I am a mom of a hemangioma baby - quite extensive - and although my ordeal does not span the years that yours has, my heart always aches for a mom with uncertainty and a feeling like they have not received quite the accurate help. We went through several "specialists" before arriving in New York. I really think that you could benefit from an e-mail or phone calls. I hope you take me up on that offier - but if you do not, I understand that too. I wish you well and your search for your daughter's best treatment and I hope to visit with you soon.
Hang in there - our dedication to finding the best possible care for our children is what makes us special parents. Your daughter is truly lucky to have you. Don't forget that.