and so it begins ...

so Sam has now officially finished high school ... yay... umm  I mean YAY!!! I am so proud of him and glad he has finally finished and is able to start working on living his life.... on one hand... and yet on the other I am scared, nervous and sick about him starting this life.
He has a job now and drives 30 miles to it. he wears a uniform and is in the produce section of a local grocery, which is all fine and dandy. BUT did he remember to put on his papers about his BI, his chance of seizures, his issues with sometimes forgetting simple things or his sundowing if he is tired and is starting a shift on a later part of the day, what about when he has a braininjury moment....

i could go on and on over my concerns and worries. I try very hard to remember Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (NIV) but sometimes it creeps in. 
He HAS had jobs before and he has done amazing with them, but they have all been for family or friends who understand where he is coming from. 

I also worry about his future with regards to his future bride... I know I am jumping the gun here HUGELY... but I am his mama and I want her to understnad what this wonderful man has had to overcome and continue to overcome to get along day to day.... 

I worry about him driving when he is tired, about him when he is out in crowds and they get to be too much for him...

i guess it all comes down to it is time for me to start cutting these apron strings... he is growing up and will be soon moving out (hopefully not too far away) and I will miss him.... 

i worry, I am a mom, so I am pretty sure that it is written in my job description somewhere.... if its not I may have deifinitely it penciled in .... 

how do i start to let him go? I lean on Dennis ... a lot ... i mean A LOT. i sit and try hard to not cry when I think about it and i pray... and pray and pray...

for Sam

his future

his job

his future relationships and one day wife

for me to be able to handle this new stage gracefully without holding him too tight or causing him to run from us....

if you have any advice I am all ears...

There is a lot to be said for bedside manner

...now if only 'our' neurologist had some! (and yes I said 'our' but I am using the term loosely)
Dennis and I had wonderful second opinion phone call last night with Dr. B from Winnipeg. He  helped us to understand what all might be the reasoning behind the sudden "you are being transferred to pediatrics' call we got yesterday.
Dr. B said that it could be that Dr. Y got a slap on the wrist from the EMU clinic for whatever the full reasoning was and is stepping us backwards to ped's because if when they send us to another clinic it will possibly be Dr. Y that we deal with (the epileptologist). Now we also learned that the reasons behind seeing Dr.Y are because Sam not only has epilepsy BUT he also has a brain injury (no kidding!?) so it complicates things a bit. Dr. B told us that he has met with Dr. Y before and has found him to be kurt and brusque so THAT was not our imagination (It could stem from personality to the fact that it is more of a social style from his native land of Russia.)

Anyway, we found out the answers to many MANY questions that have NEVER been answered for us in 3 years! This lovely doctor called us at 9.30 at night from his home, gave us  his home number and told us to keep him in the loop. If we can find out the name of the ped neuro. that we are going to be seeing he can try to pull a few strings and see about getting us fast tracked with them... but he said he honestly figures that we will be hearing from someone in the next week or so. (please pray for this!)

So basically after our initial phone call yesterday at 8.30am-ish, we went from wondering what the heck!? until 9.30pm last night where we were smiling and saying "ok, we get it. Still am not impressed with Dr.Y but we will live with this for now..." A lot can be said for bedside manner! You would think that they should teach bedside manner in 'doctor school' and you have to stick with the course until you get at least 80% or better in it. Just think of the stress from patients, families, friends, co-workers and everyone that could be elevated if ALL doctors would take 5 minutes to actually explain WHY they are doing something instead of acting as if they are God.

So yesterday was not a great day and it was not all related to Dr.Y...

Sam didnt start with a good morning (thank you topomax). Since this med was 'up'd' to 2 pills a day there has been a NOTICEABLE change in Sam's demeanor, so much so that I have been worrying about him. All this medicine, epilepsy and lack of quality of life I think are taking a toll on Sammi. He has been depressed and quiet, withdrawn and sullen. Major (more than before topomax) mood swings... it had been a very tough 5 days on the double dosage... so when I told Dr.Y he said to stop taking it. YAY!!! It is not working for him so get him off it! SO i spent time already this morning on the phone with the neuro psych trying to get our time with them arranged -- hopefully hear about it this afternoon!

 I spent most of the morning yesterday, til 2.45 on the phone with various people, doctors, answering machines, etc., so when I went to town for football I was intending to go to curves to work out. Then I was going for coffee with a friend. But for that to happen I had to 1.) be relaxed to work out and b.) leave the house by 2pm... neither was happening so there was no workout for me.
I had also intended to have a green tea when I met up with my friend.... but I had a large English Toffee with 1/4 coffee instead...sigh

Then I went to football where I met with Sam who was in a foul mood (again....still -- **cough** topomax) and was informed by him that he was NOT going to be involved with football next year if this is what it was going to be (here is the quality of life I was speaking about earlier)... basically him watching the team practice and then standing on the side lines during games -- but being sure to be included when the coaches and teacher were yelling at the boys.(I dont blame him) He is supposed to be earning a credit by helping with stats and doing what he is able to do to help with the team (throwing with quarterback, practicing snaps with centre, catching for kick off or kick returns, etc) but they coaches tend to miss this part of his marks...

I sure hope that things start to settle down for Sam and for us soon... I am tired and have a permanent headache and sore back/shoulders....

Thots and crap...

This is how I feel a lot these days... if only it would work...

Sam has been on the topomax for almost 2 weeks and I can honestly say that I hope that things start going in a more family friendly direction. We are not sure if it is the topomax on its own or if it is any combination of the topomax, keppra and val proic acid.
Sam's moods have been extreme to say the least. He will be fine one minute and then the next he is off on a tirade and is lippy, then the next moment (and this is the one that really scares me) he is silent and sullen. He looks like he is just ready to lay down and sleep forever, never to get up again. I worry about this side effect because I know this feeling.
I fight it daily.
I dont know if you ever stop being 'bi polar' (or manic depressive as they used to call it) or if you just get accustomed to learning to live with it or better at hiding it?
But when Sam gets in that mood I just want to cry myself. He doesnt want to talk, eat or do anything...
Today I will be spending my day phoning the neurologist about these side effects, a sleep lab letter we have received and a few other things. I will also be phoning the neuropsych about when we are going to see them and how we are worried about these side effect (so please do not wait on getting in to see us!)

My stress level the last few weeks has been astronomical and although I have tried to relax, I find I can't. I am so tired, feeling lost in a pool of information and LACK of information, self doubt, self pity and a pile of other things that I dont even feel like me. My cousin was out this weekend from Ontario and we went out on Sunday morning with our cameras to take some pictures and I couldnt find any relaxation or creativity in it. All I wanted to do was cry.... which is really all I feel like doing most days anyway.
I honestly feel so alone in this all. Dennis is a help but only in so much as he helps with working with Sam. I cant tell him how I feel because the way he handles stress and things is much more different than me. I need to cry it out and then I will think it out and try to figure things... but I cant even find the time or strength to actually have a good cry. It is stupid really....
I go to curves to workout and then dont be smart at all on my eating (not that I eat alot of junk, I either eat or dont eat)
I am also mad. Mad at medicine, doctors, Dennis, family, Sam, myself and I am ashamed to admit it God.  Some days I just ask "why" ....
Why did you give this responsibility to us?! Why did you do that when I dont handle this well?!  What am I to be learning!?
WHY!?
I know there is a reason for it all... I just wish I knew why...

I know today is a jumble of thots and crap, but that is my head these days ....

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