Friday, December 30, 2011

How many!?

I had to take a second look when I got the paper work for a Seizure Response Dog for Sammi!
21 pages
That is a TWO and a ONE!

Not at all daunting, or over whelming...
Not one bit scary....

ok I lied, just a tad bit daunting...

Luckily there ARE pages for the doctors to fill out, but for the most part it is all down to me!  I have the doctor parts done and most of my parts, now I still have to find 2 character references, get the school to sign off on it (but I dont think the school will be a big deal as by the time Sam would actually get a dog he would be done or darn tootin' close to being done)

WE started looking into the seizure alert dog shortly after Sam was diagnosed with epilepsy. We felt that it was an avenue to travel and if it is what is to be then God will open doors. Our thots are that by the time the whole process is done and thru (or close to it) Sam will be getting ready to leave home to go to college or university. A dog will be:
1.) a help to calm our nerves about Sam and his seizures when he has one
2.) there will be help for him if he does
3.) the dog can be trained to do a number of different things from getting a phone after a seizure for Sam to call for help, bark to alert ppl that Sam is in need, go for help, etc

It is a long process and after talking with the people at the Lions Foundation of Canada we felt that it was most definitely something to look into. Then once the doctors filled out the paper work on their part, they felt it was best too. This will be an almost 2 yr process from when they get the paper work at the foundation. We will have to undergo a house/home evaluation, and if we pass it then they will find a pup for Sam. This dog will be trained and once it is ready to go we will travel to Oakville Ontario to learn how to work with the dog. Then we are sent home with him/her. 
We are all excited about this new endeavour and cant wait to get the papers sent away and wait for a response from Ont. 
The service is all free to us (including the trip to get the dog) but there is a place for donations on their website. If you feel so inclined please stop by the site and see if there is a way you can help!

Monday, December 26, 2011

Epic fail? BUT...

well that is what some people (teens most likely) would call it...

I am not sure if it was or not! Not on Sam's part, on Dennis and mine thot process of the gift... or rather the hope for the plan of its full potential!

Josh, Sam and Grandma checking out the small pieces
Dennis and I bought Sam the Pirates of the Caribbean"Queen Anne's Revenge" lego set for Christmas (not the Star Wars ones he was hoping for and most definitely not really in our budget but we made it work). He was very happy about it...

TA-DA! Sam with the Queen Anne's Revenge

Sam started working on the ship and completed it all in one day-- over a 1000 pieces

Queen Anne's Revenge (with working cannons!)
he also completed it with  multiple conversations, games, food, dogs barking all going on around him. Not once did he lose his patience with us or himself.(another accomplishment!!!We were so proud of his dedication to this project and of the determination to ignore all the outside distractions!)

our hopes for this to be a therapy for him over the holidays was completed in less than 12 hours...

now where do we go from here!?

I am hoping we can maybe try to get the more complicated lego sets when we can make it work in our budget.
I will keep my feelers out for used ones -- if anyone hears of any going please let me know!

Sunday, December 18, 2011

From Ours to Yours...

Our 'Ugly Sweaters' for a Christmas Party
B-Sam, me(Jodi), Dennis, Josh
F-Hannah, Isaac

We wish you a Merry Christmas and a very Healthy and Happy New Year! We pray 2012 is filled with love, laughter, family, friends and all of God’s wonderful blessings! Thank you for all your wonderful and encouraging support since 2008!
Love Dennis and Jodi

Merry Christmas! Thanks to everyone for their support this year with my brother. We all appreciate the support. Have a happy new year!!! 

Merry X-mas everybody! Thank you for all you support that you have given our family these past few years its been very much appreciated! Happy holidays and have a great christmas and a happy new year
-- Sam

Merry  christmas everyone! Hope u all have a great new year! 

I wish you all a  holly jolly christmas and a happy new year and thank you all a lot for
 all the support you have gave as through out the years. Merry Christmas and I hope 
you all stay safe this christmas year.
 - Hannah

Friday, December 9, 2011

Reasons to ☺

I had both Ike and Sam to the doctor yesterday and it was confirmed that Ike is out of sports for a minimum of 6 months. That means no spring league football -- but hopefully he will be ready for Fall league. If he has any major headaches or blurriness of vision again we are to get him straight to the hospital but so far we are doing great!

They (medical staff, hospital whoever it was) got the results back on Sams nail issue. He does have a fungal infection but because of his seizure meds he will not be on anything for the infection (this is what the doctor is telling me). This will be due to the fact the fungal med is 'worked' by the liver and Sams epilepsy meds are too, so that is too much for him and the fungal meds are about a 16week round of drugs.
I am all ok with this because we have been treating the infection with straight tea tree oil and it seems to really be helping! It isnt spreading past the 2 toes and 3 fingers! YAY!  It is stinky but amazing stuff.

Today we are 16 weeks seizure free!! I am so happy for Sam! Things are going in a good direction for him! (and for us as we are all affected when he is seizing) Maybe we can say that we are finally ...after over 3 years of craziness making our way out of this tunnel and heading towards the light!!!

Thursday, December 8, 2011

My Christmas Wish

Christmas used to be the “most wonderful time of the year” for me, but after my Dad’s accident it is just a sad reminder for me that my Dad is gone. Ambiguous loss is huge for me starting around mid-November.
I try to be upbeat and cheery for the kids and Dennis but honestly it is hard.  My dad was the best at getting me into the Christmas spirit.  He would call and sing to me, he would make plans for the holidays, he would make sure that the gifts he bought were just right for each receiver. He put so much thot and effort into gifts and I am proud to say that it is a ‘gift’ he has passed on to me that I am trying hard to cultivate this legacy in my children. 
With this all being said, I struggle with gifts for our kids. We try to get them one thing that they really want (their lists are very short...for example iPod docking/charging station, art supplies, fuzzy socks or Ugg style slippers--this is the list of 3 kids!!!). This year we are having a big problem with Sam’s gift. 

He is asking for lego and not just lego lego, but he wants the more complex lego sets -- star wars, buildings, vehicles etc. Now these aren’t hard to find but the price they want for them is hard to dish out! We are talking about upwards of $155... sigh. I have checked out amazon, kijiji, ebay and other local bargain sites...nothing- well nothing in our price range ...
The real kicker is that Sam asked for these kind of sets so he could use them as BI therapy. It would help him to follow instructions (problem solving) and because it is lego (and not models which require glue and waiting time) he can pick it up and work on it and walk away when he is tired or frustrated.
A bit of back history here: Sam used to be the kid who would do plane models and other things without a thot... now they have too many minuscule parts, steps that require 5 minutes of ‘modelling time’ followed by hours of waiting for glue to dry. Also the smell of glue makes him nauseous. Our hope (Sam’s included) is that  he can get back to that hobby one day...but right now lego is more of his level, but he is waaaaaay beyond the easy ‘kid lego’. 

I had put a ‘wish’ on a local website in our area asking for lego sets that someone may have had for sale and if they were in our budget we would maybe be able to buy them.  I didnt go into details about why we needed wanted them I just stated that we were looking for our son and that due to his medical issues we spent $250-300 month on medication  and 3 other kids to buy for ... so our budget for gifts is not the highest... to make this short there was no responses to my wish, so I deleted it. 
I am not making this post for sympathy or anything. My hope is really that someone can help us  with ideas to help Sam with his therapy idea but more in our budget. We are at a loss of what to do! Both Dennis and I are so proud of this move that Sam has made to work on this on his own, but it is heartbreaking to know that now we are not able to get what he wants. Sam is ok with not getting lego (we have come to him and tried to find other ways for him to work on therapy) but sometimes you just want to be able to give them what they have asked for... 

It  is my hope that people who would read this would already know that I would make this wish for any of my kids, it just so happens that... so it seems... once again it is about Samuel . 

My Christmas wish is to find one set that Sam would like for a price in our budget or some ideas for me to try to help him to work on his therapy from a different angle...

Sunday, December 4, 2011

Refusing to change it...

bubbles... they're all gettin' one
.. the tag line in my blog I mean. I will NOT change it to 4 or 5 or 10!
 I absolutely CAN NOT handle another survivor in my house!
So I am putting everyone in bubbles ... forever.
On Friday Mom and I were in Brandon doing some shopping and I get a call from the school "Isaac was in gym class and got an elbow to the head in basketball. His vision was blurred and he was dizzy, could I please come get him and take him to the hospital"
My first thot after the initial "you've got to be kidding me" wore off was "why the heck didnt THEY take him to the hospital!?" Our high school is next door to the hospital! But I called Dennis and he went and got him.
Turns out he had a concussion and since it was his second one in such a short time (he got one during football season) that he is out of sports for 6-12 months and in gym he is only allowed to do sports that he is not at risk for head injuries with... which would be what!? Who would have thot an ELBOW would be the culprit!?

So big 'ole body bubbles is what is one everyones list this year for Christmas... says me.

it never rains but pours...

Thursday, November 24, 2011

So what do you get when...

so what do you get when you cross a TBI survivor student, his high school teachers and the orginal psych evaluation from 2009?!


yep, seriously. nothing except an extremely frustrated and pissed off mama! 

Sam is falling in the 'normal/average' range for most of his evaluation, but in one area he is actually below average AND that is BELOW where he was 2 years ago! It is in the math skills -- which is his organization and problem solving skills. hmmmmm kind of what we have been telling the school since .... 


I dont know DAY FREAKIN ONE!

 We have been telling them that AND giving THEM the information to help him with this. We have emphasized (or I thot we had) that Sam needs to learn this NOW or he never will. Sam has an iPod and an organizer to use and we just asked that the teachers help with reminding him to use them. Once it gets into his long term memory it will STAY THERE!  sigh I am so frustrated!   So basically if Sam had been helped with these skills up until April 2011, they would have been in his long term memory and he would not be where he is now!

We knew what they were telling us (meaning it was not a surprise since Dennis and I see it here at home) but we were hoping for at least an IMPROVEMENT not a backward step! Whatever happened to the saying of 'no child left behind'? I am not naive to think either that my son is the centre of the teacher world, but when a parent GIVES you information and is working WITH you to help THEIR child... wouldnt you at least TRY to work with them!? Then teachers paint your kid with the "they just dont seem to care" brush! No kidding-- cuz at this point he is starting to not care after 3 years of this from teachers! He started out with a "lets get movin and work" attitude and he does every year when he starts school, then he starts to pick up on the feelings and ACTIONS of teachers. SO he starts to quit and give up! This is TYPICAL teen behaviour BUT is enhanced or aggravated by the fact that there is:
1.) 3 fragments of  bullet in his head
2.) seizures
3.) seizure medications

Initially, when E(psych student) and Dr. D(psych) told us the results my first reaction was "So I basically have wasted the last 3 years of my time looking for the info to help the teachers with their freakin' job!" I know it is a totally selfish thing to think but there you have it!  Why did I bother spending all that time looking for, printing, getting to the teachers if they were not going to use any of it anyway!? 

Like I said to my gf Marianne -- it was yet another 2x4 to the head in the dark...

Wednesday, November 23, 2011

Butterflies are pretty in the summer...

... not when there is snow on the ground and they are in my stomach!

off to Winnipeg today to see the neuropsych for the evaluation results (man too early today it took me 5 minutes to think of the word results...sigh)
I am nervous about this and not too sure why I have butterflies in my stomach about it.
I would love to tell Dennis to go in without me but first of all they want Dennis, Sam and me there and secondly I would be a wreck by the time Dennis and Sam got home.

Time today will tell I guess...

Saturday, November 19, 2011

B.I.M.'s, iPods and teendom

B.I.M.'s-- Brain Injured Moments
iPod -- something we hope will help Sam with his B.I.M.'s, be a source of relaxation and help with him to remember meds
Teendom -- something i hope I am going to survive with our kids

We gave Sam back his iPod this week but there is no Safari on it (to keep him from getting into trouble with it), there is very few games on it (to help  keep him from becoming obsessed with the game and iPod), and there is a new Sticky note app on it. This app is for both Dennis and Sam to write their B.I.M.'s on it thru out their day.  Right now it is just the free app but I am thinking of upgrading it so there is alarms and other things for them to use.

Sam lost his iPod this summer after we had found him using it for things that were not necessarily were best for him. So he lost it for about 4 months and now I have blocked things and we will be checking in on it frequently. (Yes we are those kind of parents-- technology, the internet and kids is a scary combination --so we frequently check at our kids browsing history, cell phones, FB accts...)

I am praying that it really starts to work with Sam and in a positive way.

Lately we have been dealing with not just B.I.M.'s with Sam, but we also have been having major issues with teendom and the other kids. I have been thru every emotion and frustration you can imagine this week -- all from the 'comfort' of my couch... We have had some very scary moments this week and I pray that things have now changed a direction  that is heading in one where people (insert our teens names here) can see that we are here as parents to help and guide...It seems today that parents have so much more to have to deal with than in the past. We have to 'compete' with tv, music, society and technology -- and most of this stuff is gearing kids to think that they know better and dont need family or anyone to get to where they think they need to be.

Stress is huge in any parents life and I think this week we have had more than our share I think.

... here is to a better week next week.
... here is to ALL our kids knowing we love them and want only what is best for them.
... here is to a week where I dont want to run away and not look back

Saturday, November 12, 2011

I thot burn outs were for light bulbs?!

Burnt out?
not really...
maybe a bit...
yes I am tired...
but isnt everyone?
I know I need to take time for me...
but where do I find it in the day?
I am trying...

I read an article the other day about caregiver burn out
I never gave it a thot...
but now I am out of commission ...  to a point
I am on the couch
leg up on a pillow
and told to 'rest it'
I have stretched or tore (something) to my right ACL (which was reconstructed a few years ago) and it looks like my left one could be on its way out too.

After reading the article/letter it was like walking into a brick wall.
This is our life.
Both Dennis and I work hard with the farm, the kids, the kids activities, our parents (there are 4 separate groups of them!), and then add in there that 3 of our members are brain injury survivors.
We struggle with Sam and his issues daily, I do what I can for my dad but thankfully there is the care home to really work with him. But then there is Dennis. Most people dont realize he has an injury but he does and he is so much more like Sam then he wants to admit. I have trouble talking to him about his issues because he IS so much like Sam. Telling him this tho is almost not an option.

So I keep on going (kinda like the energizer bunny)
now I am on my chair with my leg up...

I am physically done (for now) and emotionally I am at the end of my rope and that proverbial knot is slowly starting to unwind. But there is no where or no one for us to turn to for help. Our family options are nil. We went to them a few months back and got no where... so we keep going. We have no really close friends either to ask for some help. And everyone is busy and has their own things to deal with so why would  I burden them?

I keep going.

I feel resentment from my household now that I am suck with my leg up. I feel like they are upset because I am not able to do what my 'job' is as caregiver. Even tho I do what I can (and to be honest I do a lot of what I am not supposed to do -- cuz if I dont who will!?!) their resent meant and attitude make me somedays want to pack it all in and do a run away and let them all deal with it ALL on their own.

But I won't ...
where would I go?

Friday, November 11, 2011

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

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!
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...

Saturday, October 29, 2011

what is this new feeling?!?!

Not sure if Sam’s sleep last night(Thursday night) was due to the lack of it the night before or the bed or what, but he had a terrible night -- or so I thot! I was woken by him crying out and thrashing in his bed a few times ... so maybe it was more that I had a long night. He doesnt remember anything so it makes me wonder if he was having seizures -- just the convulsions tho. Sadly, I was so tired I never thot to grab my phone to video anything. 
There was also someone who was throwing up alot last night... in the elevator and all over the bathroom... not a pleasant smell to greet you at 5.45 am when you are awake...
This morning (Friday) Sam was to be at the hospital at 8.30 for blood work (med level check) but I let him sleep until then. While he was waking up I was cleaning our room up so we could be ready to leave when his appointment is over this afternoon. 
This has been a very long week. we have had  lots of great news and some late nights, but I can honestly say that of ALL the trips we have had  and appointments we have been to this week has been the BEST EVER!  As I sit here in the Ronald McDonald Family Room at the hospital, I feel so much lighter about a lot of things from this week. I dont remember when I have last felt like this. I cannot begin to explain how the doctors (both neuro and psych) have helped to make me actually feel confident about what they had to say about Sam. Usually I feel a quite bit of apprehension when we are leaving the offices, but this time I felt light and smiley... there are tears of relief and happiness sitting just behind my eyes but I can’t let them out. I still have some nervousness -- almost ‘is-this-too-good-to-be-true’ nervousness. I am working hard to not focus on that feeling, because I like this other new one better. 
I have had  quite a few friends ask me about the Ronald McDonald House, so I am taking pictures of it (and I will do so also of the room at the hospital) and I will do a posting about it soon!

Thursday, October 27, 2011

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...

Friday, October 14, 2011

Silver linings...

After this 'hellish' week we have had with Sam and topomax, neurologists, stress and the drama... we have a silver lining!!!!

It is looking more and more like Sam's depression, mood swings and quietness were mostly down to the med's! Even HE is noticing a change now (it has been since Tuesday that we stopped the topomax). He is smiling again, he is pleasant, he is joking a bit.

When he was on the topomax, Sam never noticed anything different, and now he does!!! Thank GOD!!

We are still struggling with other things right now but at least that one is over! The war is still raging but we have won a battle or two this week!

Wednesday, October 12, 2011

There is a lot to be said for bedside manner 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....

Tuesday, October 11, 2011

not again

just got off the phone with our neuro (that we have had for all of 6weeks) and was informed that they are transferring us to the pediatric neuro clinic which when we were trying to get in to them didnt want us because they said they would be transitioning us when he was 16 (in December) anyway!
I dont even know what to think. I am so shocked at this all... I gave them the list of side effects and was also then told to take him to emergency for an evaluation for his mental health...
I have sat here and cried, talked with God, cried some more....
I know when Dennis is in and hears this new news he will not be impressed...
I dont even want to think what this will do to Sam to have to see another new doctor...
I dont know what I am thinking anymore about anything. Am I seeing things with Sam's health? Dennis sees them too so I cant be imagining it... or are we both?!?
I am doubting everything I do and say these days and now we are once again without a neurologist....

I am at a loss for words right now...

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!?
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 ....

Monday, October 10, 2011

A run to remember

... well the football boys and my boys will!

David as he first comes up to  meet the team!

Davids view of the team as he gets close!

The boys cheering David on!
My "football" boys!

Starting their run!
These are some pictures that Dennis and Melissa (David's trip organizer) took of the boys from the Neepawa Tigers that came out to run with David McGuire for 'A run to remember' on Sept 27/11. 
Running with David on the TransCanada

Isaac, Dennis, David and Josh.
(me sitting here teary eyed still over this pic!)

David is a brain injury survivor who is running across Canada to raise awareness for Brain Injury.
Sam and I were in Wpg at the EMU Clinic when the team and David ran down the TransCanada by Carberry -- so we missed it... sigh The team ran for 4km with David and they all tell me that they really enjoyed meeting him. I was so proud of not only my hubby, Josh and Isaac for running but also for our football team to run! There were 8 other guys that volunteered! What an awesome bunch!

David has an amazing story to tell so please visit his site  or his FACEBOOK page and see if there is someway YOU can help with spreading awareness or make a donation. Also stop by his blog to read about his daily runs! (he runs about 40-45km a day!)
Here they all are after their run!
David gave them t-shirts that are A Run to Remember!

Thank you David so much for allowing our football team and family to run with you! You made such an impact on them! I only wish Sam and I could have been there to run too! You are doing such awesome work and we are all proud to have been able to be a part of what you are doing! 

Dennis took along a bag of oak leaves for David too(he put one on his hat!), so something that our family in Manitoba has been doing is now reaching beyond our boarders!

Saturday, October 8, 2011

coming clean

I finally told my dad about Sam’s brain injury. I didnt go into details, just generalities and it felt so good to tell him. I told him that why we are not always able to be visiting him (appointments) but we want to be able to more. I told him about Sam and the epilepsy and I asked if he know what it meant for him to have seizures and he said ‘he shakes’...
It was such a relief for me to tell daddy about it. I would start to feel sick at even the thot of going to see him because the whole visit was  pins and needles about  what to talk about. I would start to tell him about my week (which usually entails doctor visits, trips to Wpg, etc) and then I would have to stop myself in mid sentence or thot. I was a wreck when it would come time to see him. I hated not being able to be honest about things, but I thot that it was for the best. I dont know how much of anything he understands and comprehends. I dont want him to be worrying about what is happening in our lives and with me. I dont want him stressing out that things are the way they are. 
But last week as I sat with dad watching tv on our usual Thursday night dates. I looked over and just told him. I just gave him very brief story that Sam has a brain injury like him, but  is doing great, except for the epilepsy, but even that is under control. I explained about appoints we go to and things we do, but I did not explain the extent of Sam’s injury or how it happened. I dont think he needs to know all of that! 
After I explained things to him and made sure he understood I told him that it felt good for him to know and he looked at me and said “i love you”... for dad it is a typical response for a lot of things but this time I will pretend that he fully understood what I told him and he genuinely felt that was what he HAD to tell me then. I told him I loved him too and I missed our talks. He smiled and said “i love you”... 
I dont know if it was the right thing to do... but I dont know if I know the right thing to do with a lot of things these days. All I am doing now is what I feel is right at that time.
And it felt right...

Thursday, October 6, 2011

Grab some tissue first!!

  • This was a post from a follow mom with a child with epilepsy and I wish I had had the warning of a tissue... sigh. I don't actually believe this is how God chooses who parents who, but after the day I had yesterday and the week before this it made me ... well first tears ran then the sobs came... so I will let you read it then  I will ramble.

    (don't forget to have the kleenex near by -- justin case it isnt just me!! Dont say I didnt warn you...)

    Special Mother

    by Erma Bombeck

    Most women become mothers by accident, some by choice,
    a few by social pressures and a couple by habit.

    This year nearly 100,000 women will become mothers of handicapped children.
    Did you ever wonder how mothers of handicapped children are chosen?

    Somehow I visualize God hovering over earth selecting his instruments for
    propagation with great care and deliberation. As He observes, He instructs
    His angels to make notes in a giant ledger.

    "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

    "Forrest, Marjorie; daughter. Patron saint, Cecelia."

    "Rutledge, Carrie; twins. Patron saint, Matthew."

    Finally He passes a name to an angel and smiles, "Give her a handicapped child."

    The angel is curious. "Why this one God? She's so happy."

    "Exactly," smiles God, "Could I give a handicapped child to a mother who does
    not know laughter? That would be cruel."

    "But has she patience?" asks the angel.

    "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
    "I watched her today. She has that feeling of self and independence that is so rare
    and so necessary in a mother. You see, the child I'm going to give her has her own world.
    She has to make her live in her world and that's not going to be easy."

    "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that.
    This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

    God nods. "If she can't separate herself from the child occasionally, she'll never survive.
    Yes, here is a woman whom I will bless with a child less than perfect.
    She doesn't realize it yet, but she is to be envied.
    She will never take for granted a 'spoken word'".
    She will never consider a "step" ordinary.
    When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

    "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

    "And what about her Patron saint?" asks the angel, his pen poised in mid-air.

    God smiles, "A mirror will suffice."


    I definitely see me in this story... I am limited on patiences these days and I am selfish. I wish this were all a bad dream that I would wake up from and Sam would not have a TBI, my dad were with me again and my life would not be so all encompassed in doctors appointments, hospital visits, worried mornings, new meds, new med schedules, stomach issues on my behalf...
    But then I guess without all this going on I would not have to lean on God so much, I would not have met all the wonderful amazing people in our lives now and I would not have had the opportunity to spend the time with Sam that I have. sigh.... pass the kleenex again please...

    Yesterday we were in Winnipeg for Sams Neuro-psych appointment. We were with the doctor and her resident for 2 hours! Yes TWO hours! We filled them in on everything from the past almost 3 years since we last seen the doctor and all that has and is going on. They have decided that they need to do some retesting with Sam for cognitive behaviours (which might help us with the school) and they want to help give Sam some daily tools to use which hopefully can help with stress, life, 
    anxiety, etc. 

    Sam and I will be in Winnipeg for a week when this happens but because he is on so many meds right now and they are changing on a weekly basis, the doctor wanted to talk to one of her colleagues about whether or not we should wait until things are settled down with that before we try anything else new. I understand that this could help Sam but if we have to wait it will most likely be in the New Year before we get back to it, then the school year is almost half over and the help we were looking for will be too long in coming ... again! 

    I want to say we are excited for this but in reality we dont get excited about much anymore in regards to the doctors. They tend to get our hopes up and then dash them. So it is day to day living again for us. Honestly I am tired of doctors telling us that we are right, that something needs to be done, then they leave us hanging for ages or what they 'do' for us is nothing newer than what we have been doing. 
    Dennis and I have found that the best strategies we have worked with are the ones WE have found on OUR OWN without the doctors help. And then when we tell them what we are doing they agree it is right and take all the credit for the work we have done when talking with others! 

    And as I say this about doctors we HAVE met with some amazing ones! Our new family doctor is Dr. N and he is FABULOUS!! We are off to see him today (yes another appointment for us) because of this new development with Sam ...

He is getting holes in his finger nails. I think it may have something to do with his meds as a side effect... maybe a vitamin deficiency, since one of the side effects of one of the meds is brittle bones (maybe why he fractured his ankle this fall) So we will see today. I have asked this question of other moms with kids that have epilepsy and they seemed to think the same thing.

I am so tired these days. Dennis and I have started taking B12 for energy, I am still going to curves (not making much movement in the weight loss area), I have been reading a bit more but I have not really picked up my camera at all. I miss it. I miss taking photos and playing with them. I think I might take our family pictures this weekend while there is still a bit of colour out there! 

I will be posting soon too the pictures  and a bit about David McGuire! Watch for it!