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.

September

Well the kids are back at school. I should say Eoghan and Maurs are we are still getting Finnian's school year with home instruction and therapies set up. It poured the first 2 days of school so we didn't get to take any pictures out side maybe Monday I will be on the ball and get out early to take some.

With all the rain poor Finnian was having increased seizure activity. It seemed everyday he was sucking back O2 for a while. The VNS magnet was getting a work out of so it seemed. Then Friday was a shitty day for poor Finn man. I know until we get what he was having on an EEG they won't say its a seizure. It will probably be like last year take him to cardiology, pulmo, movement etc and the answer will be like last year its neuro in origin. Then again September, October and November are always seizure months for Finny just like February, March and April seem to be the same.

Well Eoghan is in 6th grade cannot believe it and he like his teacher so thats a good sign. So the rules this year if he ends up that he has to go to summer school he will not be going to Ireland with Nanny and thats only fair to make him work for something he really wants. Maurs is in third grade and she likes her teacher its her first time having a man teacher. He is a great teacher Eoghan did well in his class when he had him. He makes learning fun for the kids and he gives them a good bit of homework.

Our Finnian slept for 15 hours after his shitty Friday. In a way I am glad he does have a feeding tube so getting his food and meds into him wasn't a problem. I was a bit nervous that he was sleeping so much. I woke him up and he was up for about an hour and then he went back to sleep again. you know he got diastat yesterday as we have a stinky poopy boy today.

Next week is kinda busy with doctor's appointments Finnian has 3 and I have to go back and see the GI well I need my medication for my belly. I know, I know I shouldn't drink as much coffee stay away from the ice cream, milk, chocolate and many many other things and I probably would be all right but hey no one is perfect.