Hooray, we are home. For a while at least anyway as we are scheduled to go back in for a while in August but we get to enjoy a week or so at home first. Wills still has a bit of infection left so is on IV antibiotics and is still not quite himself. We are having to keep a very close eye and not have an oxygen tank set at 15 litres with a non re-breather mask in the corner of the living room in case we ever get a day like that again.
The last couple of days have been crazily busy was we have caught up with our lives as they were before last Wednesday. For Wills, this has meant visits from his physio, bringing the splints we were about to go and collect when he decided, rather dramatically, that he would rather not go to physio on that day and a visit from his OT and a rep to look at a more supportive chair for his ever slumping posture. She also came with the news that we are getting a temporary powered chair, while we wait for them to find the perfect Willsmobile. This may arrive next week so I am just taking a break from a major clutter clear to make some room for him to drive around the house, destroying the paintwork.
Our house is not at all designed for this so the OT is making a case to the next panel for us to have major house alterations. All the doors need to be widened, we need a lift from the dining room into the room above, currently the girls' room that will then become William's room, the bathroom will turn into a wet room (very sad about this as I love my baths!) and we will have an attic room built for the girls. I will make sure there is some kind of partition as they are a nightmare sharing a room at the moment. All that is going to be pretty major. We will get a grant towards the majority of the cost. It will be a about a year before the process reaches the stage of being ready to begin work. Wills will then be around 4 so he will be so happy to have complete independence around the house :-) We are still not completely sure of his disease prognosis but most of those who work with him expect him to be a full time wheelchair user in the foreseeable future. He doesn't do much walking around at the moment, preferring to lie on the floor and play and crawl at times. The trouble is, when he is ill, he deteriorates generally at a quicker rate and never quite picks up.
3 comments:
Glad you're home again! What a fright you've had, been thinking of you lots!!!
Hope you get your clutter cleared and William learns to drive his new "Charlie" quickly. Can't imagine my lot let loose in one - scary stuff!!
love and hugs.
xxxxxxx
Glad to hear that William is home again now. Hope the new chair doesn't cause toooo much chaos!!
hello you!
Long time no hear, hope all is well!
Im going on holiday next week so wont be able to come down for wills birthday but I will send him a post card and get something while Im away.
Ive applied to get into luton uni, just waiting to hear back! Really excited about it, so glad I didnt have to wait until next year!
How is everyone?
Had a skim through on the blog, lots of ups and downs as usual I see!
Ill give u a call when I get back from holiday
lots of love
helen
xoxox
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