Late yesterday afternoon Brynn complained of a headache, he even asked for something for pain and was almost crying. He laid around most of the evening and was quiet for the most part, just a little whiny. He fell asleep around 11 PM, then the myoclonics came back… I thought that the Klonopin had stopped them. His right leg and upper body, arms, shoulders and head was twitching a lot all night long. Lots of nose rubbing and lip smacking/chewing… Saw him have a 1-2 minute tonic event and more clonic activity than I have ever seen in him without the typical tonic start. I don’t know if this is due to the Klonopin making him sleep so hard or if I am just not watching closely enough and am missing the tonic part or if it is a new thing. The Neuro said to call it what you want to and describe it… Well this looked like Clonic Shivering so that’s what I will call it. He’s a bit hesitant to do his school work today… Slept till after 11 this morning. Had a pretty good day, considering the night he had…
Brett would pick today to not cooperate at all in doing his home school… It is getting to be more than I can handle just to wake up and function with the fibro out of whack since the accident several months back and lack of sleep with Brynnon… I have not been feeling well the last few days. Maybe I am emotionally drained…
Abigail is growing so fast… Over 20 pounds, running… Playing and such a happy baby. Her speech is pretty good so far, I worry more with her looking back on Brynnon and knowing what I know now. Twirling in circles she goes round and round… then she sits… leans back ever so slowly and gently to the floor… and says OH NO… FALL DOWN…. She runs all through the living room and kitchen with her baby. She loves her babies, hugs her babies and kisses her babies… She is such a blessing! The light that sparkles into the darkness….
So, getting a little anxious about the Appointment (Thursday) to get the Neuropsychologist results for Brynnon… Seems like it has been 6 months waiting, but it has actually been 2. Of course I have some updating to do with him as well as far as the regressions we have seen in Brynnon since he was tested and had the major seizure. He still has not caught up back to where he was, which makes me wonder if it was permanent? Surely he will catch back up to where he was, but in the big picture the regressions are bigger than the catch ups, seems it takes forever to catch up. I was going through some of his home school from two years ago. It is so sad that his handwriting was actually better two years ago than it was even before the last major seizure. The computer schooling seems to help, as it does all the reading for him and doesn’t seem like what he calls “baby work.” The headphones drown out all the distractions in the household, which interferes greatly in his concentration. I hope if nothing else the neuropsychologist will have great positive things to say about Brynnon’s future. His future is what I worry about most. I realize that people who have Intellectual disabilities can live normal lives in society. I just worry that he will not be able to grow and flourish with the regressions happening. Just can;t seem to shake the feeling like we make all this progress only for a terrible seizure event to wipe it all away… There we are left to try to get it all back in again before we loose anything else…So Thursday is the BIG day for getting some answers concerning Brynnon’s learning journey….
The 18th is the Neurologist appointment to get the results of the 24 hour EEG. I will also bring my videos of Brett and ask about his night time events. It is bothersome, as Brynnon did the same things before he was medicated and I am very afraid that it is the same thing. Scares the crap out of me, that Brett could have the same thing wrong… I hope I am just paranoid and it’s nothing… That’s not what my gut says though. I hope he has better answers about what seizure types he is seeing and why his EEG was so erratic. I expected it to be normal while medicated… and I have yet to find a sleeping EEG that looks like his. I have looked at hundreds of them online… but not one looks like his. I will also be asking a lot more questions this time, as I know a lot more now. At the end of the visit I will have to tell them I need a copy of his records to bring to New Orleans for the Epilepsy clinic at Children’s Hospital. I hope if nothing else they will have answers… I just need to feel secure that everything is being done that can possibly be done to prevent anymore seizures or regression. While would we are at it, I would like to know if it is or could be genetic and if Brett could possibly be showing early signs.
It is so frustrating not having the answers to so many questions, but it is exciting to think that sometime in the next month I may have most if not all of them!
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