I have also talked to Phoebe's lead doctor about the undiagnosed program at the NIH (since they would do a full genome sequencing, and while Phoebe's symptoms point to ALPS, doctors don't think it is a form they have seen/heard of before or it is a mixture of diseases) and asked if he thought it was worth a shot to try to get Phoebe in. He said it may be easier to get into Harvard but it was definitely worth a shot.
Within hours he had a referral typed and packet ready to send. With the medical records I have on top of the records he has, over 100 pages of results along with ultrasound discs and letter's of necessity were sent to the NIH. The beginning of this week we got a request from the NIH for Phoebe's growth history, neonatal history and pictures of Phoebe's symptoms and how things affect her (which I'm glad I document all of her swelling, growths etc with photos). Upon receiving these requested items, they said it would take 6-8 weeks for them to review everything and make a decision.