My heart goes out to you and your daughter. That must be so hard for her, especially after you waited all this time and didn't get the result you were hoping for. I'm not sure where you are in Oregon, but this physician is listed on the VBF website:
Dr. A. L. Krol MD FRCPC
Director of Pediatric Dermatology
Doernbecher Children's Hospital
Portland Oregon, 97239
For Appointments call 503 418-3376
I didn't know if you had tried to call there at all. I also recommend emailing Basia Joyce, the Insurance expert. She might be able to figure out a way to get things covered. I was worried our insurance would not cover my daughter's surgery and laser to get rid of the leftover involuted hemangioma but it did (and my daughter was on state insurance at the time of the surgery if I remember correctly.) Every state might be different, but you never know- you might be able to appeal, etc. Let us know if you are able to get anywhere! I hope so and I'll be thinking of you!
VBF Hemangioma Forum Moderator