Finally an update

March was a crappy month for Finnian. His seizures were weird and his sleep schedule was way off. We were saying it was the weather as it got hot very fast and Finnian cannot handle temp changes very well. Had an appointment with the neuro and told what was going on with him they were wondering why we didn't call and let them know. To be honest Finnian has cycles of increased seizures and some times just the change in the weather will set off a cycle. So instead of freaking out we just ride the storm and wait and see if we can control these cycles with our rescue meds at home. Don't worry if I wasn't comfortable or I thought they were way worse than normal I would have him in the hospital. He is now over the hump he was in and will be going in for a few days in May to get his brain waves read. Its the first time since he got his VNS so I hope there is a change in his over all background. Went to see the endo doc as his TSH level had come back high. She is a really nice doc and checked out a few other things with him as well. Guess what ? Everything came back NORMAL. Even she was surprised there was nothing even on the low end of normal considering all the medications he takes. We just have to follow up with her again in 6mths for another round of blood work. He was also at the Movement Disorder doc for a follow up. No changes on his meds but she will see maybe if he has continued peeing issues she may add another med. you know the Flomax is doing its job but we do see some holding issues when his seizures are a bit whacky. It was cool he did have a small seizure while he was in her office which is always great when other doc's see them. She is talking about touching base with the other doc's and see if they can figure him out. His seizures have picked up the last 2 days again but he is getting new back teeth. He is also trying to throw up but because he has the nissen he cannot so we watch him going through the motions and vent him. We have also discovered if we swipe his VNS with the magnet he will stop. So is it seizures that is causing him to try and throw up or is it just a bug? We have been down this road before and have not gotten any answers so we will just go with the flow and use what works. Both boys were at the GI and Eoghan has to have another scope with biopsy done to check his EE out. Otherwise they go back in 6mths for a follow up. Maurs went back to see Dr.C and she is doing good so we just have to keep up what we are doing and go back in 4 mths. The kids got their pictures taken and they came out really nice will up load them when I go over to my Mammys and get my printer/scanner. Must take Finnian and get some pro shots of him again since he has a nice haircut.