Up early on a Saturday morning

There are some nights that Finnian only naps and last night was one of those nights. As long as his music is playing he is quite happy and he will amuse himself. He usually sings along, wrestles one of his many animals that are in bed with him or he will kick the side rail of his bed. I don't know how many times I have been looking for the pin that lets the side of his bed down. It gets loose from all the kicking even though I tighten them up every day.

Thursday and Friday he had an increase in seizures well really in the past 2-3 weeks they have been on a steady increase. On Thursday when we were on the highway going down to the hospital he decided to have a pretty big tonic seizure so I had to pull over as his O2 was dropping and his heart rate was climbing. His nurse got out his magnet and zapped his VNS and I got the O2 hooked up on him. I didn't even look at the nasal cannula I had put in the bag but when I went to put it on him we laughed it was a baby one thankfully there was another one in his bag. We were a wee bit late to the first appointment but everything was fine. On to our next appointment which was a bladder function scan. The final result they are putting him on flomax and then we go back and get him checked out again. They don't want him to be retaining huge amounts of fluid in his bladder cause that could cause more issues.

Friday morning started out with Finny having 5 seizures by 9:30 am. So we just loaded him up in to the van as he had another doctors appointment. So off we go at least this time he waited to have his seizure while we were on the street by the hospital and not on the highway. SO get to the doctors and told them about the new med he is on for his peeing issues. She wanted to know if this was something new with Finnian but alas its not. Even last year they were debating about putting him on something for his peeing issues. For a while we would see his inability to pee right before he would have a big tonic clonic seizure.

Saturday was another disaster day with seizures and yet again I had to pull over on the side of the road. Thats why I don't want to go anywhere by my self any more with him in the van cause you just never know when those suckers will hit. I keep my rear view mirror trained on Finnian's seat. Years of driving the postal LLV and only using the side mirrors has come in real handy.We go this week to see ortho and neuro I hope they just adjust his meds down and turn his VNS up another click and with the ortho we get to see what's going on with his thumb on his left hand and get his hips and spine checked out to make sure all is ok there. We know he has to get new long legs so we will probably be getting to see John or Walter to get them made.