My child may have Sagittal Synostosis, I'm looking for parents of a child with this issue to hear their experience.

Long story short, my 2.5 year old daughter has a lot of physical issues. She's super bright though and a great chatter box. Just a delight (not that I am an unbiased observer :) ).But we recently saw a specialist who strongly feels she has Sagittal Synostosis. So naturally I want to know more about parents who went through the necessary procedures to help their kids with this issue. What was it like? What questions do you think I should ask, etc.?With only 1 in 5k kiddos having this at birth finding parents on reddit of kids with this issue is like looking for a needle in a haystack, but here goes. Any needles out there? via /r/Parenting http://bit.ly/2VCcXB2