Almost…

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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