Children with pda,hie,seizures,visual problems n fedding problems help n advice?

my son was born on the 21st nov 2008 three mnth early,whilst he was in hospital he suffered 3 bleeds to his brains n suffered seizures n died 4 times whilst on scbu.since coming home we found out he has pda a heart defect,hie which is cerebral plasy n brain damage n he has problems seeing he has to have light therapy n sensory therapy once a week. but he has seen his dr once in a yr n hes not convinced its cp although our son is 1 next week n cant walk,talk,sit up or crawl hes also cannot eat proply n has to have extra fats in his food called callagen but that isnt helping hes 1 n the size of a newborn n is still in newborn clothes, he has seizures n arches n stiffens up at least three times week they used to be worse but calmed down a bit. he has also started drooping his tounge out n his eye is lazy n he only uses the right side of his body, he having speech therapy a dietition n visual teacher n physio hes got n ot as well, n his gp n pedatrition everyone apart from the pdeatrtion has sen the arching n seziures n stiffening but because he hasnt seen it wont give us medication our son also does not sleep n anything u do doesnt work is anyone experiencing this n knows wot it is or has a child with the same thing that has had a disgnosis