Lola starr

hi im lolas mum jeanette, im finding it hard to write right now coz the little monkey was to b up in my arms.
Im basically starting this blog because Lola was apparently born with some kind of syndrome, and no one has any idea what there dealing with.
Its very hard and frustrated even scary for us because we dont know whats up.
Im constanly trying to diagnois it myself on the internet bad idea .
What i have noticed when i did a search was 1p36 deletion syndrome nobody has mentioned this me me but she fits the bill,hoping other mums might tell me there stories.
Lolas only nearly 11 months she has low muscel tone cant sit or crawl her hands are kind of clenched, shes only saying ma ma da da ba ba bit of babbling.ill leave some pictures
of her shes a beaut i hate when doctors tell me she has ADMORMAL OR UNUSUALfascial features "thats my baby girl ur talken about"
We live in ireland and im not happy with the service were getting here our regional hospital are telling me they dont know what to do that the specialist will know better and the specialist are saying they havent a clue, so where does it leave us.
She was thought to have "freeman sheldon syndrome" her dad and i kepted protesting this now it looks like we were right.