introducing me, new mum to harvey

[annie40]

hi all, i have just found you all after having "harvey " 6 months ago on my own and having him diagnosed with ponto cerebellar hypoplasia type 2 ( i think) sill awaiting genetic results. he will never walk or talk or smile, he has epilepsy (infantile spasms) microcephally, hearing and visual impairments, fed through a nasal gastric tube ( go the flocare infinity) , scoliosis, dystonia ( an involuntary movement disorder) .... lemme see what else, he can't swallow very well at all and never sleeps oh and he's hypocalcaemic ( too much calcium so needs a low calcium formula ( $400 per tin !! )
its amazing what soon becomes normal after awhile though and harvey does manage to communicate in his own special way and gives me enough love to make caring for him the most rewarding thing i have ever done. xxx anne and harvey

[Linda01]

Hi there, welcome to the forum. I have an almost 18mth old that was diagnosed with a deletion of chromosome 1. He isnt sitting or crawling yet but he moves around the floor by rolling here and there and he is a very happy lil man. You're sure to get a lot of support by joining the forum, everyone is really helpful and friendly.