Monday, May 28, 2012

Updates ...

These trips to Winnipeg just knock this guy out! We leave at 5-5:15 am to be in the city for a 9am appt. in hopes that we can get home with time to stil get work done on the farm.
This last trip had us to see the psychologist and try to see about getting Sam to understand a few things....
I guess time will tell if he fully comprehends that we (Dennis and I) are doing all that we can, the doctors are all doing whatever they can, the meds are doing their part, the rest (and sadly the biggest part) is up to him. Unfortunately, he has a frontallobe injury which means that his 'filters' dont always work and his perception and judgement is a 'little' off.  Also the unfortunate part is this is where we have been trying to get not only Sam to learn how to deal and live with it but the school also... and they dont get it. Sam's brain has to actually HEAL and REWIRE itself and if we dont get it 'rewired' soon then he may have issues and unnecessary struggles  for the rest of his life!   sigh... We have some plans for the immediate (meaning next week) but until they happen I dont want to post anything incase minds are changed or plans change)...

An update on the TBI/ABI bracelet campaign is going FAB-U-LOUS!  I have got 400 bracelets and oak leaves out to local businesses and I have mailed out so many to people all over Canada AND to the UK! I have another 400-500 of them now and am working on getting leaves on them out to the public! I spoke with the Winnipeg Blue Bombers office and they are going to wear them! WAY TO GO BOMBERS! (yes I know I am a bleed GREEN RIDERS PRIDE fan -- but we also live in Manitoba) and I am so glad to have all the help we can get with spreading awareness of Brain Injuries! I have a few other surprises coming in the month of Jue to share with everyone but I have to wait to make sure it is all finalized.

I have also let my name stand to be nominated for the MBIA (Manitoba Brain Injury Association) board. I am excited about this as I hope I can bring some new and positive ideas to the table! I have been emailed from David Maguire and he has an idea going that he wants to get as a national campaign. So I will take it to the board and hopefully they are on board with it too!

Tuesday, May 22, 2012

not sure who needs it more...

respite that is...
Sam most deflinitely needs some R&R time away from us (24hrs a day 7 days a week is a bit much for a 16yr old)
but the rest of the family could definitely use it too. We are all so frazzled with Sam and his BI and coming off these damned drugs. Josh is ok since he has a job and is able to spend his weekends working 14hours a day, but Isaac and Hannah are home a lot ... so they are getting to see it and experience it all first hand too!
Sam had a major melt down again yesterday (Monday) and went to bed at 3pm and basically slept (and is still sleeping as I write this at 6am (Tuesday). We got him up at 8 for his meds, he ate some dinner and went back to bed.
This melt down was weird. He started yelling at me that he is tired of 'working' all the time and I never help him with his school work, he wont eat the sh!t I cook, he wanted me to leave him the &$#! alone, and then there was a 10 minute rant and rail away at me that I couldnt understand or hear as I had to leave the room then. I had asked him that while he was watching tv to please fold the laundry that was there (it was his and Joshs) and that started a huge thing --then he proceeded to tell me that no he wouldnt fold Josh's clothes and was only doing his own. When he came upstairs 15 minutes later he said he folded his stuff and left Josh's but when I checked he had folded a bit of Josh's and his own.... not a mistake that the boys make - they hate to have each others clothes in with their own. So not sure if it was a BI moment or the meds.
Then he went to bed and there he stayed the rest of the day.
There was a great lot of drama with him yesterday, lots of swearing at me, lots of telling me off, lots of telling me that I dont do anything for him.... it was a very hard, emotional day.

we all need some R&R -- respite would be good but so far we are told that they dont know where to get us help ... so nothing new.

Friday, May 18, 2012

Like living with a drug addict

Sam coming off this Keppra is not pretty. He has his highs and lows. The doctor explained it to us on Wed that when he is 'high' it is his brain searching for the drug in his system and then when it can't find it he crashes... just like someone on drugs. He has good moments and bad ones. He is up and down. He has rational thots and then the irrational ones follow. He is working hard to not lash out but there are times where he does.

So yesterday morning Sam woke up and wanted to go to school - he said to work on school work but I think part of it was to get away from here for a bit - which I dont blame him. So we let him go. (mind you I was worried about it because of the highs and subsequent crashes) BUT (yes that is a big but) we are trying to let him have a normal life ...and normal teens go to school... so we let him go.

I called the school ahead of time to let them know what was happening and spoke directly to his teacher. "he is going to probably on make it to noon. If he starts going really fast, touching everything and talking amile a minute he is on a high. He will crash and he will be very hard to understand, he will be tired, unco-ordinated and just generally "out of it" He also has woods at second period so please let the woods teacher know that he is NOT to operate any machines'. The teacher indicated that he understood and would look after him. (I also left a message for the woods teacher with this same info)

Well Sam got to school and didnt know what day it was (on the timetable -- and due to a mix probbly of the drugs, head injury and most likely pride didnt ask anyone) so he went to work in the library. This is where the teacher found him, got some work from him and left him for the rest of the morning.... Joshua went to  Sam's classroom to check on Sam before lunch to see how he was feeling and to se if he wanted to go home or not...
... there was no Sam  and Josh was told by the teacher that he had left him in the library this morning. SO Josh went looking for him, only to find the library empty. After a quick search of his usual areas of sitting in the school, Josh couldnt find Sam and so he texted me this info. I told him to have Sam paged by the office, only to have no Sam turn up.  Josh was worried and now so were we. We got a text he was with his ex gf but that quite a few teachers had seen him and thot he looked glassy eyed and not 'with it'. The janitor had said he had seen him and Sam was talking but not making any sense as he was leaving the school...
Josh by this time had called me and I left to go and help find Sam, the school called the ex gf parents to get them to call her to make sure that they came back to school (she told Sam she had a spare but was supposed to be in classes) She told her mom  that Sam was not with her! This caused the school to have to call the RCMP and report him missing because of the meds issues.... Sam said he didnt know that someone was looking for him and he didnt know what time it was (he doesnt wear a watch).
Josh then went with some teachers and other students looking for Sam on and around the school grounds to see if he had seized somewhere and was on the ground.
By this time Sam was crashed for quite a while and starting to go into survival mode. He was wild and glassy eyed, staggering, incoherent, hot and tired. We still didnt know that Sam had been with the ex gf,  so we started to question where he had been... and he told us "he wanted to talk with her and since she had a spare and he didnt have any classes, he didnt think..." I know he just wanted to be with someone to listen to his problems, and she probably wanted the same thing too but it was gone about in a totally wrong way.  (it was then that they asked me who does Sam talk to about things!?!?! OMG what the hell do you people think I have been trying to do the last few years!? For starters he was supposed to be talking with the school counsellor but the counsellor was always too busy!)
Sam told me when we left the school that she told him to tell a story to the school and us about why they were where they were and he couldnt remember what she had told him to say... he was confused then about what all had happened (he has a hard time with remembering the truth and what his day is forget abouat adding lies to try to remember)
Through all this Josh was in full gear panic. When he had called me he was close to tears, when I saw him at school he was white as a sheet. I told the office that when I took Sam home that I was also taking Joshua and they agreed it would be OK. Josh proceeded to tell me lots of 'behind the scenes' stuff that occurred thru this all on our ride back home. It wasnt pretty.
Sam is home now and his locker has been cleaned out at school and he will finish out this year at home and until these drugs are sorted out with the doctors.

Now the part about it all that really ticks me off is that when we got Sam back to the school, the onus of all of this was put on Sam.... not the teacher who was supposed to be helping, not the school for not informing staff of what was happening (I am sure the ex gf will get a helping of blame from the school) but it was all on Sam and what he could have done to have not gotten into this mess in the first place...
I could see it if he was a normal teenager, I could see it if I had not given them a heads up about this, but i HAD informed the school of what would happen and how to take steps to take precautions.
I know that some people will put the blame on me: "well why did you let him go to school if he is like this?" my answer is because I am damned if I do and damned if I don't. We are constantly being told by everyone to let him be a kid! We DO let him be a kid, we ENCOURAGE him to be a kid, we WORK HARD to make sure he is living as normal as possible life. Going to school IS normal (the school told us to make sure that when he had days of feeling like going to school let him go...) we let him go.
I take part of the blame because I have that catch .22 thing going on in my head about letting him be a normal teen .... but he is not a normal teen in some respect.
Sam takes part of the blame because he was acting like a normal teen
but what blame is the school taking for essentially 'losing' our kid at school?
What blame is the ex taking when she took him off of school property in the condition he was in?
ast night our phone didnt ring. There were no follow up calls from the school board, form the RCMP, the ex's parents, nothing.
So I am guessing Sam is taking the brunt of it all ... and all I want to say to them all is "where have you all been the last year? what have I been telling you? Did ANYONE listen when I called this morning and explained what to watch for?"

Now to top it all off, when they asked about who does Sam talk with I had to explain about our trips to Winnipeg to the psychologist and our trying to find help but not finding any. I am still waiting for a call back from the Health Unit from a counsellor there that was trying to set us up with a psychologist near by but I have not heard from her (and the health units phones are down right now -- sigh)So I called him myself and left a message and have not heard back from him either. Our psychologist in Winnipeg is going on Mat. leave in mid June... and the psychologist in Neepawa is retiring... so tell me where in the hell does that leave us!? I am busting my butt trying to find us help (as a family and as individuals) and everyone says "oh not here! go to......" sigh
I am tired and left feeling very raw thru this all...

Saturday, May 12, 2012

Helping spread awareness

I have 400 of these and they will each have an oak leaf pinned to it to wear on your coat, shirt, hat wherever!! I am so excited to get them out to the public and help spread awareness of Brain Injuries! If you want one or more let me know! Any donations for the bracelets will go to the Manitoba Brain Injury Association or donate you your local Brain Injury Assocation!

Friday, May 11, 2012

this MIGHT be that post...

I had started this post and it was originally title Vicious Circles, but as my day ran on and into itself and then back out again-- the changes thru the day and when I finally got to finish this post it was a totally different emotion... please bear with me...

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34
I am working hard at trying to live this verse...
Our weeks are seeming to get worse and worse by the day! It all started with the last ‘running away’ issue and from there it has grown into:
~ quite a few trips to Winnipeg to see the epileptologist and psychologist
~ many phone calls to find someone closer to home for psych help
~ new meds
~ new reactions to meds
~ extreme tiredness (on everyones part)
~uncoordinated, clumsy walking, no hand eye coordination, mumbling, 
 emotional out bursts, anxiety, lots of incoherent speech, rambling, falling asleep at the drop of a hat, quarrelsome attitude, aggressive times
This is since he started on the Clobazam last week. He has been on his maximum dose of it since Tuesday (today is Friday) and the side effects are at thier highest they have ever been -- but they started once he started the med. We will wait until next week and see if it subsides.
Next Tuesday, we start reducing the Keppra at 1 pill a day and we are praying that once that starts that Sam can see some improvements.

Yesterday he had a major meltdown with Dennis and I over everything that is happening. He told us how he puts on a good show for everyone at school, his friends are not so much anymore, he hates school because of this and then he started to get up to leave... he told us how he wished he "had never gotten shot in the frickin' head in the first place" ....

Over the last 4 years he has never said anything about his accident or the epilepsy that was remotely negative. He basically handled it with a "well this is it and I cant change it -- so I guess I will live with it" attitude. Both Dennis and I were shocked to hear him say this. He proceeded to tell us that he wants to stop all meds and live with the seizures instead. He is tired of feeling drugged out and 'out of it' all the time. 

It broke our hearts to hear him vocalize such heart wrenching confessions and know that for his health we need to at least give the doctors a chance to help him (now that someone finally is). 
So here was our deal with him: on Tuesday he was to start reducing the Keppra by 1 pill a day, so we agreed to let him start last night with a 1/2 pill less than usual and stay at that until Tuesday, and he agreed to give it a go...

THEN ....

This morning as I started to type this post, we got a call from the epileptologists' nurse and she had spoke to the Dr. and he said to start decreasing him tonight 1 FULL PILL! And to continue doing so at  5 day intervals until he is off the Keppra!

Our day went from cloudy to sunshine...

We know it is not the end or end of anything but it is a start. 

A start where we can maybe begin to start seeing our old Sammi again. 

WE miss that SAm, HE misses that Sam....

All that we have been going thru we know there is a reason and like the song that has been going thru my head today by Randy "In God's Time" :

In God's time
A million years might only be a single day
And everything He does gets done His own way
In God's time

And in God's time
You'll find that certain someone you've been praying for
And they'll be everything you dreamed of and a little more
In God's time

Oh, but no one knows
Not you or me
It might be tomorrow or it might never be
Oh, but don't lose faith
Put it in His hands
'Cause it might be that He might have a bigger plan
Than you had in mind
Miracles happen
In God's time

And in God's time
You'll finally get the chance to hold your baby girl
And all the sudden everything'll make sense in this crazy world
In God's time

Oh, but no one knows
Not you or me
It might be tomorrow or it might never be
Oh, but don't lose faith
Put it in His hands
'Cause it might be that He might have a bigger plan
Than you had in mind
Miracles happen
In God's time

And In God's time
You go to sleep and wake up with wings and learn to fly
And you finally meet your loved ones on the other side
In God's time