22 December 2007
So...the latest on you is that you are on4 medications to control your reflux,one for gut motility,you wear patches of medicine behind you ears which need changing every 3 days...this reduces the saliva production as you aspirate and choke on your own saliva and you have been started on a muscle relaxant to stop your muscles going into spasm.You have something called Hemisyndrome and the Neurology team say you will go on to get label of full Cerebral palsy and not just hemiplegia.You also have started to have fits.The doctors dont fully understand why you are so oxygen dependant although your EEG shows abnormalities between the left and right side of the brain. Clinical Genetics think you may have some sort of rare syndrome and we have to go back to get the results of this after christmas.You do have your special chair now and so you can finally sit up and play.Unfortunately they have said they can fund you special pushchair which is SOOOO disappointing as you have most of your life threatening events whist in there as you cant sit up.We are fighting to try and raise the £3000 neede to get it for you.I pray that we will manage to do it before too long.This is you in your special chair...sorry its sideways LOL