...and...THUD ... there it is....

the other shoe that just had to fall... how many have there been anyway!?
... And how many more are there left to fall?!?

I have had to take a few days to process our news, so please bear with me as I will try to not verbally vomit here.

We took Sam to the neurologist last week and got results of his EEG and stress EEG. Dr. T was happy with the original EEG and wasn't concerned too much and ordered the stress ones just to be on the 'safe side' and those results show that Sam is still having lots of seizure activity when sleeping. It actually is e same results as when he was having full on seizure activity! 

This news was no well received by us -- especially Sam. Dr.T said right away that we need to get this under control and start seizure medication. Sam immediately said "no" and Dennis had to explain our aversion to the drugs. Thankfully, Dr.T said he totally understood once he knew the whole picture, so he is referring us to a new epileptologist in Winnipeg, who is apparently amazing and will listen to our story and what the background is.... Dr.T assured us we would like this one. He is young, and just returned from Harvard where he studied epilepsy. {side note here is while we really, really do want to trust Dr.T's affirmation of this new doc, our past experiences with doctors and Sam's care has not been the greatest track record- most tend to ignore us and our concerns and do what they want whether it is for Sam's best quality of life or not- but we will hold judgement until we meet the man.}

I also got a talking to from Dr.T telling me that I have to be strong (when he saw my tears) because Sam will need me to be... No kidding... My tears were not just for the news we got but also from frustration of having to go through this again (doctors and medications) but also for Sam - who is working to build a life, for Hannah who will be left at home to deal with this with us (in the past I had worked hard to make sure no of the other kids were lost in the shuffle of Sam's appt's and his moods - whether I was successful at it I don't know- but they always had each other... Now with only Hannah at home...who will she have if I am dropping the ball!?).

{I have always been very honest here and I will continue to be.} I had a kick in the stomach reaction when Dr.T told us about the EEG. My first thot was "I failed Sam. I missed all these signs and didn't connect the dots. I should have been better." lots of thots about what I then saw and never realized. I felt guilt about these things and then i felt guilt about me... who I am, or more accurately who I am not anymore. I have still not found me since this journey all began. I can't seem to find the time to do things I love - photography, reading, crafts. I had hoped that now I would start to find the time - with hoped of guilt from spending time on me when I should have been looking after Sam, Josh, Isaac or Hannah, or helping on the farm or doing housework, or doing a hundred other things. I felt guilt about me...
I also have the 2015 bracelets sitting here and so far I haven't had the time to address envelopes and get them out to people, between 3 birthdays, a graduation and company all in June! So a tad bit of guilt there...
We have also been dealing with the regular day to day {said with a bit of sarcasm and a bit of animosity thrown in} Brain Injury stuff.  Denial and all that comes with it, sleep deprivation and stress, anger, frustration and emotional melt downs -- I have been wanting to sit down and write more about all these things as they were occurring but then that damn guilt... and throw in lack of time... and you get this kind of a post. {in my head this is all so eloquently written and that provoking... but in reality it is emotional drivel ... i know}
Anyhow, all through this new {ok not so new - just the second act?} information all I have wanted to do is cry and scream... and lay in bed all day and ignore what I think is coming rushing at us down this road... But people don't seem to want to let me - as if my crying is a sign of weakness or that I have no faith -- again blather.. i apologize

 I found this on the internet somewhere:

I know it is all in God's hands. He knows the outcome and all that will happen in time. I just have to trust in Him ... and the doctors. 

But I can still cry right!? 

2431 days...

**sigh**

2431 days...

that is approximately 6.5 years...

that is a loooong time...

2431 days between Sam's accident and when we actually were seen by a neurologist.

Not a neuro-surgeon.

Not a pediatrician that was head of the Brain Injury division in the hospital.

Not an epileptologist.

Not the family doctors.

An honest to goodness neurologist.

Last summer, Sam was having some issues with major headaches and loss of peripheral vision in his left eye. He had had a few of these instances over a few months before he finally told us and we were able to take him to see someone about it.
That day in October, started out with a trip to the walk in clinic (to the north of us 30-45mintes), followed by a referral to the optometrist (to the south of us 1.5hours from home in Brandon), which lead us to the hospital ER (referral from optometrist). The ER doctor then sent along a referral to the neurologist, which we finally got to see in March!

I am not complaining.... well not much.... ok I am trying hard to not complain.
I am just tired and frustrated with our medical system.  The last few years (especially since the seizures started) Sam has had many different manifestations to stress. Beginning with the seizures, he makes a strange clicking/clucking noise when he gets stress, headaches and then the partial blindness and headaches. I worked hard to find someone to help Sam in dealing with the stress ever since his accident and yet all professionals kept telling me that "he was fine". Sam has never really dealt with the reality of his BI. He will tell people about it, but it is mostly just to see their reaction or to shock them.
In reality, Sam will not readily admit to an injury other than the pure physicality of it. He will admit he has 3 fragments still in his brain, but he is not admit that he has issues to deal with, so forget about looking for help to deal with the issues. NO matter what we tell him or how we tell him that everyone has something to deal with just that he has a much cooler story to tell!

So now we are finally seeing a neurologist, after 2431 days, and he is 19years old (but acts more like  17yr) and we cant work as hard to get him the help he could use, because he is 'technically' an adult. We are always working to help him keep moving forward in life. To try to gain those 2 years he lost socially. W try to help him to set up his finances, appointments and schedules so that they work for him. One thing that helps is that he works with us and since he has been here he hasn't had any headaches or peripheral blindness.... that that doesn't mean he hasn't had other issues.... because he wont tell us about them until he has had them for a while.

This neurologist has us going for CT's and EEG's again here soon and Sam is not impressed with this. The Dr. wants to be sure that all seizure activity is gone and he wants fresh scans of his brain. I am happy about these as the EEG will help to settle my mind on the seizure issue (as I said before Sam wont tell us if there is anything occurring until it gets to be too much for him).

just another example of how TBI's are  life long...

no matter how far you have come...

no matter whether you think you are done with it all...

it will still jump out and bite your ass ... just to remind you it is there...

Our home away from home...

A few weeks ago(and since the beginning of this journey), Sam and I were in the city
for 4 days some appointments.  I said I was going to have a post on the wonderful
Ronald McDonald House that we stay at and so here it is!
This house is gorgeous, spacious, functional, safe (you need to have security cards to get in)
 and most of all it is a relaxing atmosphere to visit with other parents and families.
There is a most  definite family feel when you stay here.

This is not my own photo but it is the actual house we stay in!

Trying to keep Sam awake so we could go to his
EEG...

 A

The time we got up so Sam could have his EEG done --
under 'stress' less than 4 hours sleep...

One of the family rooms -- tv, pool table, air hockey table,
wii, xbox, etc

another of the family rooms(this area is being redone)
& part of the dinning area

The dining area and kitchen

❤My favourite spot at the house ❤--
the coffee area ☺

Our room (facing south)

the North side of our room

the West side of our room

the front entrance by the offices
The wall reads
"Home is not where you live but where they understand you"

The family room at the
Ronald McDonald Family Room at the Children's Hospital --
where families can go while at the hospital. You need to have a child in
critical care or be referred by the Ronald McDonald House
to be here.

Looking out to the south...
There is tv and computers with internet.

The eating area -- you can bring your own food and use the kitchen
area to prepare it and clean up. 

The community kitchen and one of the MANY MANY
lovely volunteers that help keep things running,
and help where needed!

There is daily baking done by volunteers for families to
enjoy while in the Ronald McDonald Family Room!
Delicious!!!

Both Ronald McDonald areas are filled with amazing people who are there to listen and help where they can.
If you have time stop by their website HERE to see what they are up to and if there is any way in which you can help! It can be anything from gift cards to toys, groceries to DVD's... just click on the donate button and find WISHLIST! Or call them and see what you can do. This link is to the Winnipeg RMH, but you can find your own local one too and see what is available for you to help with!
You never know when you or your family or friends may need to use this wonderful service! I know we never thot we would or that we would still be needing them...

you do the math...

TV+video games+food (until 10pm) a large Fruitopia÷The 3 Musketeers (the new movie)×2 episodes of GLEE- less than 3 hours of sleep= an all almost nighter for Sam and I 

Tuesday evening we arrived in WInnipeg so we were bright eyed and bushy tailed for our first appointment on Wednesday morning at 9.00am with out new neurologist ....erm... no EPILEPTOLOGIST... Dr.A,. It was a very through appointment that lasted almost 2 hours! We got a few answers we have been waiting a while for. 

The main one....

 SAM SHOULD BE BLE TO PLAY FOOTBALL!!!!! WOOT! AND we are still in football season since the boys won our last game, so we are in the finals now! We have a game on Sunday and it looks like he will be playing!!  Dr.A said he was going to check with Dr.Y as to what his reasons were for telling Sam “no” but he also said “Sam is a kid and let him be one!”  I was almost crying when he said that... those are the words we have been saying since April and everything has been being taken away from him!

So we went to the neuro appt, then after lunch Sam had his neuropsych appt. with E. and that was 2-2.5 hours long. We got back to the Ronald McDonald House at about 4.30, so we ate and veg’d for a bit. Then my cell rang...

“I am looking for Sam Ginter’s mom...??” 

It wasDr.A. He was able to book Sam for an EEG for Thursday morning -- BUT he was to be ‘stressed’ so that meant a long night for us. Sam was not to sleep longer than 4 hours. Now for most teens this would be a fabulous opportunity to stay up...but we are early risers in our house (Wednesday we were up before 6am) so to stay up to midnight is a challenge! But we did it! Sam and I watched some GLEE on the computer, he played a bit of video games, then at we hit SIlverCity for a 10.30pm The 3 Musketeers movie, followed by coming back to ‘the house’. By this time both of us had gotten our second wind and were not tired so we settled in to watch more GLEE. Finally at 1.45 I turned everything off and we both went to bed... only to wake up at 4am... 

Sam will be ‘stressed’ for todays EEG but he will also be the same for his neuropsych  cognitive testings today. 

*********************************************************************

It is now 2.30 and the EEG is done and went well. He slept thru it all and woke up as the tech was removing the ‘electrodes’. We walked back to the house and he slept for about 2 hours and then had lunch.  We have walked back to the hospital and now we are waiting to see E. 

Sam is very very VERY tired. He is extremely shakey today -- I am sure most of it is down to lack of sleep but we will have to watch and see if it is because he is taking 2 val proics in the am now and nothing at 2pm.

*********************************************************************

We had to forget about doing any cognitive assesments today. Sam was just too tired and out of it. He was glassy eyed and very slow to talk or react. So he will finish what he can tomorrow from 11.15 to 2.30-3.00, then we will head home. 

For the rest of this night Sam is taking it easy and I am trying to get him to stay up til at least 7.30 so he can sleep thru til morning.... 

I wish I could sleep til 7.30, but sadly I will be up and packing things so we can get home! **Sigh** sometimes it sucks to be the parent...

Upcoming week ....

Tomorrow Sam and I are heading into Winnipeg for a 5-7 day stay at the Health Science Centre ... or well Sam is staying there and I will be at the Ronald McDonald house down the street.

He is being admitted to the EEG Clinic for a 24hr surveillance of seizure activity. Since Sam has been on the Keppra (and the val proic acid too) he has been experiencing major mood swings, extreme fatigue, lack of appetite, temors and memory loss issues. These are all side effects of his meds but they could also be due to absent seizures.

Sam has been very hard to live with... his mood swings have been so severe that they are scary. He has had issues with his memory -- he will talk to someone in the morning and by the evening he will remember talking to the person but not the conversation. He is not eating much, if at all (I was told by a friend that Sam's friends will get after him at school that he has to eat). He is tiring more and more easily everyday. When he eats, writes or does anything his hands shake so badly that he can hardly do whatever task is at hand.

We aren't sure what to hope for an outcome... absent seizure activity or change in meds ... either are not exactly the most favoured results.

Something on a more positive note with Sam, he started back to school last Wednesday. He is still working with an IEP (taking Math and English) but he is also doing 2 hands on classes (Foods and Nutrition  and Chorale). He is taking these 2 courses more for social time with friends and easier credits for him to attain. If things change with his health it is not a big deal if he is missing the classes. We were all happy for him to go bak to school but we did have some brain issues to deal with too.

Since his memory is not too great it was going to be hard for him to stay focused and on top of his work. Also, until last week Sam was not admitting that he has a brain injury. So his brain kept telling him he was 'fine' and he was more than ready to go to school. HIs brain was telling him that his injury was all in our heads... It wasnt until he started working on his self therapy book and he had a major melt down with Dennis, that he was able to start seeing that he has an injury and he needs to start working on getting it to heal.  We have seen some great changes in Sam in just the first few chapters that he has worked on. So part of the reason I am going to WPg with him is to help him stay on track with his self therapy and school work.... the other reason is I am his mom and I know I would be of no use to anyone here at home when he is 3 hours away with no family or visitors -- I know, I know... I am the big baby here...

I will try to keep the blog updated on our stay while we are in...