Hi there! I'm trying to look into this a little more for you. In the meantime, I'm wondering if you've seen these sites:
While doing some research, I have noticed what you mentioned about Wisconsin being one of the leaders in this area. You said that they called you back (in your earlier post.) Maybe they could refer you to someone closer to home? I'm not sure if that is possible since there seems to be so few places that actually specialize in it.
A friend of mine has a son with PHACES so I'm going to ask her if she has any recommendations for support groups, etc. and I will get back to you, ok?
I'm sure it must be overwhelming right now and it is a lot to take in. I think it is a great idea to get hooked up with some other moms who are going through the same thing. I'll try to help you with this piece. Hopefully I will get back to you tomorrow. Take care!