Di-George syndrome (22q11.2 deletion).

My son is a year old, premature (33weeks) and has had many issues (glotic web with sub glotic stenosis,seizures by birth time), . Our immediate concern is his growth and development, he is a year old and doesn't crawl, sit or hold neck, at 1 year he is just 5.3kg (11.7 lbs).  He can't speak because he has tracheostomy tube on him. Recently, we got a genetic study done and my son has tested positive for a syndrome called Di-George syndrome (22q11.2 deletion).
His head circumference is 38.7 at this time. We recently met his Neurologist who said that this is the head size for a 3 months old baby not a year old, neuro believes that our son is going to have a very delayed growth and would be able to walk, may be when he is 5-6 years old and possibility of dependency going forward.
We want to know if you did something that helped your daughter walk, sit or achieve some/all her growth milestones. Do you have suggestions for us?

[littlebit667]

Have you been referred to an early intervention program for children with special needs?  I worked for such a program for over 22 years and in my state, found it to be very useful for families to learn how to help their children grow and develop.  This page gives an overview:
http://nichcy.org/babies/overview

How to find your state for help:

http://nichcy.org/state-organization-search-by-state

If you are having a problem..message me with your state and I will help you find the one for you.  I promise it will help you and your child.