We are now tapering OFF the baclofen. Yay! It has not been helping at all, and just makes Jackson too sleepy. We should be totally done with it in 10 days or so. We are also going up on his lyrica, but not by a whole lot. He is now on 75 mg AM and 100mg PM. He will end up taking 75mg 3x/day. It will be 4-6 weeks before we can see what if any effect this has. We have another appointment at the pain clinic next Tuesday.
We also have a drooling clinic appointment at CHW, but this is not until September. It only meets once every other month and they only see 3 patients per clinic. Jackson has really been drooling a lot more since they have been doing the fluid replacement for the high bile output.
Jackson has been enjoying summer school. We finally got the bus situation worked out, mostly. A mini van picks him up as well as one other student. It is a pretty tight squeeze in there...two kids in wheelchairs, a driver, an aide, and the nurse! The only problem we have had was one day the van came really late and I guess she would not put on the AC because she was "almost out of gas". DUH! Of course that day was about 95 too.
