It may be necessary to know the extent of any internal hemangiomas. I live in the NW and might be able to help you contact Doctors. Would Portland Or be too far to travel. Oregon Heath Science University Hospital has a team with extensive experience in managing hemangiomas, and one of the team members is a researcher in PHACES association. I can give you the information to contact them if you would like. You can also contact Dr. Metry from this site on ask the expert as she is the PHACES expert.
I am the Admin. Director for VBF, and as well I manage a support group (on msn) http://groups.msn.com/vascularbirthm...on=get_threads
I would also like to point you to a PHACES support group with other experienced parents and they may be able to guide your thru all the necessary steps. YOu have to apply to join both groups (basically you have the mention why you want to join so they know you are a real person with need in the subject area) The PHACES group is private and only members can read messages. The group I manage is a generic vb support group and is public, but I do have to approve members based on knowing they are a family dealing with vascular birthmarks and related.
Feel free to contact me anytime.