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?

[lisaob1]

hi,just come across your post,my daughter was 33 weeks also.she had the deletion of 22q11.2 but she had goldberg and shprintzen syndrome,i see your post was a while back,and i hope your getting all the answers your deserve now..but if you need any help or advice they dont hesitate to ask or pm me...my daughter was diagnosed back in 1996,and i had another little girl who also has the same syndrome and she is amost 18,so if i can help in anyway i will.best wishes