Just wanted to say a massive thank you to all those who have sponsored me for 'Race for Life' this Sunday, hopefully the rain will hold off and we'll have a great day.
Just to update, Patrick is over his chesty cold and for the last 2 days has been on top form, really alert and happy and only having the odd mild fit. This further proves what a difference it makes to his seizures when he's a bit under the weather, last week his fits were strong and long. We have been reducing his vigabatrin and he's now only on 3.5m twice a day so I think it's safe to say that the reduction isn't having a negative effect. I'm taking him in for his chicken pox vaccination tomorrow, they couldn't do it last week as he was too poorly but I got him some anti-biotics that have helped clear his chest.
We're still having trouble getting his new wheels, he was supposed to get them last Friday but yet again we were told his buggy hadn't arrived, the assessor is off this week so we have to wait until Monday to find out when we can have it.
After a visit from Patrick's social services OT last week we are now having re-submit our application for housing. The OT has had to close Patrick's file as we haven't got room for any more equipment which is frustrating, she sent a letter to the housing dept who have told us we have to fill in a whole lot of new forms and give more details about Patrick's needs and then they might give our file to a medical panel who would decide if we could get put at the top of the list to be re-housed. The whole process just adds more time to the wait and we're starting to really struggle now, Patrick is just getting bigger and heavier and more difficult to handle.
I had a really nice e-mail from across the globe yesterday, a woman got in touch who has a nephew called Bryce who is 10 months old and has epilepsy and loss of white matter, very similar to Patrick. It's always nice to hear from other families with special children, it always amazes me how our story can reach so many people and touch so many lives.