my baby harvey

Hi, I'm new to the site my name is nicola. I have a 17month old son with coloboma in his iris,retina and optic nerves in his left eye. He is slso very small for his age does'nt put on very much weight is 18lbs 11oz. has trouble sleeping and staying asleep very restless. things have to be in there right places or he gets very upset until it is done(when we have worked out what it is ) harvey was ment to go to moorfields hosp on monday 2nd but we were unable to get there due to the weather conditions, he will see a Doctor there that specialises in his coloboma and he is entering thare genetics program,so waiting on another appt.He is having an e.c.g, bloods ,b.p etc done at the hospital this monday. Because his eye condition is rare not meny Dr have ever heard of it or the conditions that can go with it i.e charge syndrome. It's a very frustrating time being passed from pillow to post and no-one listening to you. But from what i have read i am not alone on this one.
kind regards,
nicola and harvey.

Lovely to see you on here Nicola xxx