thats weird, I thought I'd done a reply, then I went out of the room for a minute and when I came back it had gone lol! So I'll start again!
We do get loads of support, too much probably but its a case of dont refuse it as they might not offer it again!
So we get 5 hours a week from the hospice (which will reduce when Lew goes back to school after the Easter holidays), he gets 14 hours a week direct payments, and then I dont go to work so I do the rest of his care. Before Easter he was going to school 2 days a week, but after Easter he'll go back 3 days a week so I am thinking of doing some kind of voluntary work where I can run out at a minutes notice if necessary (hence I cant have a 'proper' job for that reason).
The only problem I have with a lack of support is physiotherapy. Lew needs regular physio and I am very un-impressed with the way this service is being offered to us. Lew has a review every 2 months (if they remember) and they do a few paltry exercises with him and thats it until next time. In between, I am supposed to do the exercises he needs to keep him in the best condition possible, but I'm not a trained physio and I dont feel comfortable doing them they way they should be done, in case I do something wrong!
But, we are sooo lucky at the moment as Lewis' physio at the hospital as left and now does private care so we have her as our direct payments support and she does physio for Lew 3 times a week. What makes me so mad, is the other parents who havent been as lucky as we are, who's children are not getting a proper physio service. Grrr, sorry I rant about it!!!
I need to go and catch up with everybody else's stories now so I know who I'm talking to!
Samantha x