brain

My son was born at 31 weeks and was only 2 lb 14 oz now at 12 1/2 months he only weighs 13 lb 5 oz he has been diagnosed with Extensive cystic encephalomalacia in all of his brain besides a small area of his left/right tempral lobs and small area of his frontal lob, and his brain stem the rest of his brain is cystic matter, he also has cystic leukoencephalopathy, global developmental delays, microcephaly and pierre-robin syndrome. my question is, is there any one out that has a baby born with extensive cystic encephalomalacia that is now older and how was it for them growing up where they able to do things and what extra help did they need. My son is 12 1/2 months now but is at the developmental age of 16 days old and has not made any improvment delvelopmentaly he has a feeding tube to eat cause he cant seem to bottle feed and was buring more calories than getting even on 30 kcal /ounce formula. He has had 3 surgerys to correct his pierre-robin (lower jaw) and docs dont want to correct his cleft palet cause they say the surgery is to risky for him and that he wont be able to talk anyway. He doesnt track with his eyes or seem to hear when talked to or even startal from loud noises. just wanted to find anyone that has had a child that was born with this and how was it for them