Thursday, August 25, 2011

Times they is a changin' ...

After our week of changing of meds, strep throat, holidays ending with the seizure was followed up with a first thing Monday morning doctor appointment with our family doc. Dr. N. Both Sam and I had appointments and both had a bit of alarming news.
First of all, after talking with the doc about Sam’s med levels we were told that with the fragments sitting in the 3 different lobes that he is most likely having 3 different kinds of seizures..... so one type of medicine is not necessarily going to work. He may need to go on a second med to help with the seizures. The doctor also suggested that since Sam is sundowning by 2-3pm (this is what valproic acid does to people) that he only takes a 1/2 day school day...
Sam was NOT impressed with this news. He is just a ‘wee bit’ upset... to put it mildly. He told Dennis that he didnt want to do a 1/2 day and who can blame him. He is going into grade 11, he will be 16 soon and wants to be with his friends not stuck at home with his mom. We are still working on what we are going to be doing when school starts (In 2 weeks)
We are hoping for the neurologist appointment to be moved up too now -- our family doc is going t aim for in the next week or two or at the latest in the month (I think he meant Sept.. but we will see)
I spoke with the school student co-ordinator yesterday and she is going to work on getting a tutor for Sam if needed. SHe also said the school will work with us for whatever we need. It is great to hear but in the last 3 years it all seems to come down to the teachers and if they don’t ‘see anything wrong’ with Sam so they don’t help with what is needed for him: reminders to take breaks, reminders to write down assignments, checking in with him throughout the class time on how he is doing, etc. They left him to his own design these last few years and he faked his way thru it fabulously! (give the boy an Oscar...) SO maybe this year with the URIS nurse giving a talk about epilepsy at the first Professional Development Day and what to watch for and do they will help us more. 
At our appt with the doc. we also learned that I have high cholesterol ... the not so good one. It is high enough to be concerned and in 3 months we will test again and see what it is. I AM exercising and watching my diet-- doc said this one is mostly genetics so not a WHOLE lot I can do... sigh BUT!!!! All the tests and work ups he did a few weeks ago show my physical was good -- YAY! 
The next few weeks are going to be interesting and hopefully a continued move in the direction we need it to be to get Sam the kind of help from the school that he needs that will work with not only his epilepsy but his TBI too. I pray it will not be stressful for him (seizure trigger!!!!) and it will be a workable arrangement for our whole family -- because  since Sam’s accident in 2008 this has been a whole family lifestyle change and life change. It needs to work for our house and our family not just Sam... and I think a lot of people forget about that part of our journey ... Dennis and I still have 3 other wonderful children to raise and spend time (not to mention money) with and then there IS that pesky thing of keeping a marriage alive and running.... sigh 

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