Seraphina got her first glimpse of snow this week...couldnt take her out in it as shes poorly again :( but we bought some in and put it on the tray of her wheelchair,she just tentatively touched it for a while and then tried to eat it ROFL!,dont think she was impressed.
The big news for this week is ...Seraphina clapped!,came downstairs to find her in her chair clapping,you could see it was taking a lot of effort but she was so please with herself,especially when I cheered her.Also the Newlife Charity has agreed to fund the total cost for the bad that Seraphina needs,they have turned it around really quickly,when I had the interview I dont think they could believe how we were living and how little professional support we were getting.Now we have to take our living room and turn it into Seraphinas bedroom (however I have been told that they could try and provide us with a shed to put our furniture in!).We got turned down for a Disabled facilitys grant for the downstairs bedroom and bathroom she needs because our house is overcrowded and Seri could potentailly one day be able to crawl upstairs!!!
With all Seri's feeding equipment,standing frame,gait trainer and wheelchair theres not a lot of room for anything else.
Its going to be busy this Monday.In the morning we are in Birmingham Childrens hosptial for Electrodiagnostic testing on her eyes..basically we get to find out how bad her vision actually is and whether she has the potential for beter vision or whether it is actually a cortical problem.
In the afternoon she is at Exhall Grange having a joint assessment with the OT and Physio.Still havent got anywhere with speech and Language got the feeling they just dont want to know.Got fed up of leaving messages now.All I have heard back is to contact them when she can eat orally!...oh well thats fine then isnt it forget the fact that she cant communicate grrrr!
other appointments we have lined up is ....clinical genetics,ENT,sleep study,Opthalmology and surgeon...busy busy busy :-)