Hi girls I havent been on for ages can I be forgiven for post and not pre reading?! I have been thinking about you all and hope all is well.
I have had a bit of a rollercoaster hence not posting.
A couple of weeks ago Olivias misserable consultant told me she couldnt see I have to say Im really angry at the way she spoke to us and why she said it. Olivia had been sleeping, she got stripped woke up to a stranger who shoved a black and white puppet in her face and then said she isnt following she cant see I have battled back though and I know things arent as they should be BUT she CAN see light which means there is room for developement. Im in the throughs of making a light therapy room in what will be her bedroom, which socked her consultant and is now taking me more seriously.
We are weaning her off the medication which has caused some unusual movements but fortunately they are not fits.
Her reflux is just getting worse and its depressing getting yet more medication, but it wont stop till the tube goes. On getting rid of the tube we have discovered she spoon feeds liquid very well so we are starting to cup feed her, its a special bendy plastic scoop type cup so fingers crossed that goes well.
Physically she is doing well with movements, not normal but she moves which is a bonus isnt it!
It has been suggested to me that we apply to try and get use of the Childrens Hospice as there facilities are so good, which is a good idea but it doesnt have shrink your stomack that she maybe accepted as her life expectancy could be in jepordy.
I just wish she would start smiling and life some of my dark moments.
Anyway enough from me I will try and catch up at some point again please forgive the selfcentred post, luv 2u all xx