this is not that post...

this is my motto these days...

Soon I am hoping to write a post that is more cheery and upbeat and filled with rainbows and unicorns... but this is not that post.

One day I will write a post that says someone is actually listening to me and believes what not only myself but the rest of the family  and his teachers at school sees...
but this is not that post.

There will come a day where I can say that I fully trust and have faith in our doctors...
but this is not that post.

Ever since Sam has been diagnosed with seizures we have dealt with so much that we are exhausted. Looking back over my posts from last summer/fall and reading how once Sam was on these lovely seizure medications how he has slipped further and further from us. His moods are severe and extreme, his tiredness is NOT typical teen behaviour, he doesn't eat yet is gaining weight, he doesnt exercise as he has no energy most days to get up the stairs to go to bed!

There have been days of violence towards siblings, verbal abuse towards siblings and Dennis and I, running away episodes, depressed days where we were scared to leave him alone... not pretty days to say the least. This last week has been one of those kind of weeks...
Monday he left school in fine moods, nothing happened on the bus (so we are told), the kids all came home, had a quick talk with me about what needs to be done for chores in the barn, and away they went ...
10 minutes later I recieved a text from Josh that Sam and Isaac were fighting and I was needed. Out I went to help. They were not fighting anymore and when I asked what was going on, Sam  proceeded to punch Ike in the chest and then the two of them counldnt really say what started it all. Then Sam suddenly walked away to the house where he packed a bag and was leaving.

No one understands him, we dont 'get' anything and he was outta here. We tried reasoning with him, telling him that if he was determined to leave he needed to call CFS and let them know he wants out. He yelled about it all and left ...
again
no meds, no wallet with ID, no medic alert bracelet (his broke last week and we are waiting for a new one), he doesnt have a cell phone, no money, no clothes.... nothing
so off he went and since we didnt know what to do anymore we called CFS and they directed us to call the RCMP. They said they could do nothing for us unless we want to report he was a danger to himself "so just follow him and keep him safe"
... so that is what we did. We were able to get him to talk to us for a few minutes in the van to learn
 his plan was to walk to Alberta to see a girl he met 2-3 years ago at cadet camp that he has been talking with on the phone for the last few months.  Then he got verbally abusive to me again and I told him to leave the van and we would continue to follow him.
 He got out and turned for home.

I am sorry but if this is typical teen behaviour then every other teen I have worked with are not 'normal'.
I did more research about the med Keppra he is on and this is what I found: (what Sam experiences are all in bold red)

KEPPRA

Common Side Effects

• sleepiness
• loss of strength and energy
• dizziness
• anxiety
• nervousness
• irritability
• other mood changes

Serious Side Effects

• decreased ability to cope with daily life events
• depression
• thoughts of suicide
• severe anxiety, agitation, or confused thought

VAL PROIC ACID

Common Side Effects

• tiredness (sometimes with slower thinking)
• dizziness
• upset stomach
• vomiting
• tremor (shaking of the hands or other parts of the body
• hair loss
• weight gain
• changes in behavior (depression in adults, irritability in children)

Serious Side Effects

• weakness, sluggishness, swelling of the face, loss of appetite, vomiting, or yellowish eyes or skin, especially in a child under 2 years of age (possible liver failure)
• pain in the abdomen, upset stomach, vomiting, or loss of appetite (possible disease of the pancreas)
• easy bruising, nosebleed, or other abnormal bleeding (problems with clotting)

I just wonder how many side effects does a person have to exhibit before they will look seriously at possibly changing the meds?! Sam has experienced all of this since the beginning of the seizure meds and now it is becoming increasingly worse.

Dennis apoke with Dr. A (neuro)  yesterday and explained everything to him and next week Sam will be starting to be removed from Keppra and on to CLOBAZAM for 6 months and then they will put him on Mylosine after that. So we can expect seizures and Sam is not to go for his learners permit (not a major thing right now) so we will see how that goes.

I also spoke with our family doc yesterday (Dr.T) and he says it is a combo of 4 things: teen years, meds, head injury and me...

yes me... I am caring too much and I need him to be a kid... no kidding!? really!? I am to let him go out and be a teen!? who knew!?  Sam has a busy social life! He is busy with cadets and does things with friends, visits with family (cousins and grandparents etc). He doesnt go out and party or even go to the movies too often but that is because it is a $$ issue and a distance thing! We have 4 kids to support and run after, sometimes there is no money to hand out so they can have everything they want. We encourage all our kids to get out and go hang with friends, but they choose not too some days so do we force them?!

I am so tired of people and doctors telling me that I need let him be a teen -- WTF do they think we are doing!? It is hard to get him to go to a friends house if they dont invite him or they dont except invites to our house. how do others know what happens in our house? do others know that we try to get the boys to go out but they choose not too.

It is one of those damned if I do and damned if I dont things again. The doctors (and other helpful people) tell us to do things, so we do it, then we are wrong or they ignore what we say is happening. Or if we let Sam be a teen and something happens it is "why did you not do this" (because you told us not too) or "why did you do this" (because you told us too) or if we GASP try to do it another (aka- think for ourselves) we get "what!?" 

I agree with my friend Marianne who says that the doctors are just 'practicing" medicine... but i beleive they need to 'practice' listening to the patient and caregivers just as much (and as fast) as they are ready to prescribe drugs....

so not a good day...

It sure feels lately like we have ben having more ‘off’ days than ‘on’... and not just with Sam. 

Everyone seems to be out of sorts or just not themselves... and I for one am exhausted. 

Between the medicine side effects and the brain injuries causing issues to teen drama and ‘relationships’  to medical problems am ready to jump ship and head for shore.

Yesterday I took Isaac to have his hearing tested and it seems that (by the test results anyway) his hearing is that of a 90yr old man in one ear. 

Isaac is 14... this is not good.

We are going to be going to another audiologist and according to the man we spoke to yesterday, he assumes it will be sooner rather than later due to his age and the test results. So off we will go to more appointments with specialists.

Sam has been forgetting meds,  missing classes at school (and not while he has been at home) and then this morning when we called him on staying up late texting on his iPod (which is NOT supposed to be in his room at night) he decided to go back to bed this morning and then miss school some more. He says we treat him like a child and when we give him the chance to act mature, he drops the ball and blames us. We are on a vicious treadmill right now with his attitudes. We are basically damned if we do and damned if we don’t. We make rule changes and he agrees with them, he makes new rules and we agree to them, then he does whatever he wants. 

typical teen behaviour.... ya ya ya

I know... but there is a pattern to this behaviour. Sam gets tired and he forgets his meds. He forgets his meds and he cops an attitude. We remind him to take his meds we are treating him like a child. We remind him of the doctors suggestions and we are babying him. We DON’T remind him, we don’t care. We give him an iPod to use with alarms to remind him to take meds, exercise, do things for himself... he turns the volume off and uses it only to texts, email and do other things. He texts inappropriate things to people, he is up all hours of the night .... which comes back around to being tired, missing meds, getting grouchy and irritable -- this results in missed school and classes, falling behind and taking a full year to do courses that should only take 1/2 a yr. 

He claims he wants to go to ‘regular’ classes which would be fine, except he has dropped the ball on this, where he could have proven to the school and teachers that he was ready for full regular classes (by going to every class, working diligently, getting his work done and staying caught up) he chose to fight it and skip classes, not hand in work, take his time with assignments the school will mostly likely say no to his request -- as he has not proven that he is able to handle regular classes. 

Which will bring us back around to being treated like a child, missing classes, etc, etc, etc... tiredness, skipped meds, etc, etc ... which will inevitably bring us to another day (if we are lucky only one!) where he has had enough of it all (as his brain convinces him that we are all against him and trying to keep him here) and want to go. 

go anywhere

anywhere but here...

There is drama also with Josh and his gf... I cant even get into that...

I am so emotionally drained right now after this morning with kids then I get a phone call from someone in Dauphin where we thot we might be able to get some psychological and emotional help for Sam. We were told that Dauphin is not the place for us and I was given a few other numbers to try.  I am so tired of everyone passing us onto someone else. There MUST be somewhere for us to go with these issues! 


I am looking into a neuro feedback program for Sam-- but it is in Edmonton, it is costly and if he is not onboard... why bother!? To be honest I am scared to call in case I do and they say "there is nothing we can do for him here either". I am jsut trying to find somewhere for him to get help with his brain injury! Why is this so damn hard!? Good grief!  

How many phone calls do I have to make? How many people do I have to tell our story too and relive July 28, 2008 every damn time!? Then explain about Josh...and Isaac & Hannah!? I have to laugh when they say (cuz they all do) “and what about YOU Jodi!?” 

I want to say “WHAT about me!?” If I could get doctors to listen to me and get Sam some proper help maybe.... just MAYBE I COULD find time for me!

so not a good day today...

who to believe!?

127/89 his blood pressure is high and now do this.... Dr. A

115/70 his blood pressure if fine  so don't worry about it .... Dr.T

His med levels are high... toxicly so... 134 & 136 and they should be between 50-100, so something needs to be done so go see Dr.A ... Dr.T

No need to worry, his med levels spiked so no changes for now and we will see you in 2-3 months  (btw no changes in meds for 2 years AND we will let Sam go for his learners license) ... Dr.A

OH! that is Typcial teenage life, they sleep a lot! We do not concern ourselves with the tiredness, he needs to exercise and eat and he will be fine-- it is not the medicine really, he is out of shape and will feel better after a month of exericse ... Dr.A

WHAT!? Med levels DO NOT spike and I am NOT confortable with this.  He is tired because of the meds and we need to work on his quality of life and find the best solution with the lowest possible doseage of meds. Go for more blood work and I will phone Dr.A and we will discuss this then I will call you .... Dr.T

This has been our last 2 weeks. One doctor telling us one thing, the other telling us the COMPLETE opposite. I feel like my head has been done in! I have been telling doctors since Sam was diagnosed with epilepsy last year that something is not right. NO teenager goes to bed at 8.30 VOLUNTARILY unless there is something not normal. Dr.T said yesterday that the reason why Sam is so tired could be because his levels are so high and at toxic levels.
The reason why he has trouble with writing at school or his eye sight some days is because he is at TOXIC levels....
I am so frustrated because they tell me to let them know when this or that happens and when I DO tell them I get brushed off. I know my son, I know teenage behaviour, I know that this is no jiving! I am tired of being told that it is all 'normal' when I know it isnt...

The trick now is to find the right doctor to listen to us!

Dr.A wants to wait 2 years with Sam on these levels (the val proic can absolutely wreck his liver over a long period) and then start to 'play' with the levels. But in 2 years we will be transferring to the adult side of things and then it gets worse! The whole reason we were sent backwards to  peds was because they could do stuff for us NOW! And now this doctor wants to wait. When I tried to point this out to him when we were there there, he shut me down fast but then never answered the question.
We have also been told by a teacher that they have noticed Sams eyes rolling and fluttering and when they look back it has stopped-- so they arent sure if they acually saw anything. So when I tell the doctors this (because they asked for me to record it and let themknow right away) they bruch me off and say "ya well it wasnt a grand mal. So .... no worries" SO why did you want me to track it? Sam's friends have noticed he has periods of 'spacing out' and yet when I tell the doctors this they say nothing except sign off on the paper work for him to get his learners driving permit!

I am so mad right now.... I am sick of doctors and their breaucractic crap it isnt funny. There might be kids worse off than Sam but that doesnt mean that they write him off! Our son is just as important as any other kid!

I am going to fight for my boy from now until the day I am with the Lord... so watch out doctors, I am on the war path now!

everything and nothing

I have been struggling trying to get a post on here the last few weeks... I have so much going thru my head and so much to talk about ...

but nothing that I can actually form into words. 

I sit and the next thing I know 10minutes has passed...

I have so many words in my head, emotions in my heart and head but nothing can come out

I tried to talk to Sam's doctor last week and felt I was met with "oh that is typical teenage behaviour" but maybe it is just me ... 

maybe I am just

 ... everything and nothing...

I have tried to explain things to Dennis but cant find the words either. 

tears I have many...

headaches too many to count...

I wonder if things are getting to where they are going to be and now I am just 'coming down' off the life we have been living the last almost 4 years...

I am not sure 

I am not sure about much these days

I feel just so everything and nothing....

the difference a day makes...

It always amazes me how small my boy looks in these damn hospital beds. Sammi is at least 6'1" yet when he is in the bed he looks so small and frail.

Yesterday I was up earlier than usual and thot I would start my day 'relaxing' watching the mornig news (something I dont do very often anymore as our TV is in the basement rec room) with my coffee. I came up to the main floor just before the kids usually wake up and sat down to go over my list of 'to do' for the day and Josh came down the stairs saying Sam wanted me.

I was not alarmed as when hSam went to bed he was in fine spirits and healthy .... so up the stairs I go and find him not only sweating as if he had been working out  and the bed sheets soaing with sweat but he was red and a bit 'outta it' (note to self: BUY A THERMOMETER!!!).  Dennis and I got him in the shower, 2 tylenols, a litre of water drank and back to bed. Josh told us that he had heard Sam get up and down all might (I had too but assumed he was getting up to go to the washroom because the boys had drank some gingerale before bed -- and I didnt hear any throwing up or calling for us...) Sam informed us that he was up because he kept feeling like he had to pee but couldn't.

 This made me call the hospital.

They recommended that we bring him in as he is at risk for seizures.I took Sam to the hospital and they took his temp and it kept fluctuating up and down for the entire time we were there, but we got him cooler than when he first woke up. They did got a urine sample from him and blood work to find that he has a severe bladder infection (his white blood cell count was at 19000 and it should be around 11000) and his urine was full of infection. The next job then was for the medical team to find meds to get rid of the infection that would not interfere with his seizure meds...

Thankfully they found one and with the meds and rest Sam will hopefully be noticeably be feeling better by Saturday noon-ish and without a fever. If the fever persists and he is not able to pee or isnt feeling better we need to take him back to the hospital.

Praying he is better today (at med time he was not fevered and said he was peeing a bit better so that made me happy) and continues to get better -- because did I mention that Dennis and I have a holiday booked that we leave for to Jamaica on Sunday? Not going to be able to go or relax if I know our boy is still sick...

Faith Hope Cure

Dennis and I bought 250 purple silicone bracelets with Faith Hope Cure Epilepsy Awareness on them to help spread awareness of ... well Epilepsy in the month of March.

We gave 200 of them to the high school to use for Global Purple Day (which March 26 -- but since our school will be on Spring Break they will be doing Purple Day on March 23) The student council will be selling the bracelets that week and on the 21st there will be an assembly for the 7th graders about Epilepsy and they will be given a bracelet.

The other 50 bracelets I put into 2 businesses in Neepawa- and area available for a donation. One is Curves-- my girlfriend is the owner and they are the business that sponsored Sam in football last year and they also had a box of leaves for TBI Awareness.

The other business is It's Time -- a fabulous clothing store in Neepawa. A friend owns it too and they have supported us with TBI leaf sales also and help spread the word via twitter and Facebook.

All the money raised from the bracelets will be given to Epilepsy and Seizure Association of Manitoba (Esam) The money will be used to help keep the Association spreading awareness, giving out pamphlets on E. education and anything else that is needed. Esam is the place we went to for our 'education' with epilepsy when Sam was first diagnosed and we were given a tremendous amount of help in understanding what we were going thru and what we may face.

Please show your support for Epilepsy survivors and families and wear purple on March 26!

if i could turn back time

... somedays I wish I could turn back time, back to the summer of 2008.

I would have had the boys come home the day they were initially expected to and not agree to another week.

But I can’t so I have learned to keep moving forward.

This past week with Sam had been the perfect storm... he was not sleeping well, he forgot to take his meds TWICE on two separate mornings, he was not eating, he was argumentative and over feisty. We all saw this and the penny dropped a little too late. 

We were trying to talk to him yesterday and he said he was leaving. He packed a bag and left. No meds, no phone, no wallet, no plans on where he was going. He just left. He hugged us and even tho we told him that we wanted him to stay, that if he felt he had to go to please let us know where he was at. He agreed...

.... and he left

.... on a stormy, snowy, windy day

we watched him walk down the driveway, turn south and then disappear. we called my mom to see what direction he was going but not to call to him. Then Dennis got in the car and followed him from a distance. 

Sam walked for quite a few miles and then for whatever his reasons were he turned around, Dennis stopped the car and Sam got in. Dennis told him he loved him and Sam said “I know” and that was it. 

Sam came home, went straight to his room and crawled into bed.

The last year or so we have been focusing more on the epilepsy stuff as it was more ‘something we can try to fix’ and we let that sideline the TBI issues -- and it all came to a head yesterday.

Sam had the mother of all brain injury moments. The week before his brain was basically telling him that right was wrong and wrong was right. The brain would not turn the switch back either, no matter what we had said or did. His brain told him yesterday morning that no one cared about him and he was better off going... so he left.

I don’t know what we can do in these situations other than let him go and watch from a safe distance for him to realize his brain is lying to him. 

We explained it to Josh, Hannah and Isaac as if he had had a seizure but without the shaking. His brain rewired itself and he had to fight to get it straightened out. I told them that they know how they struggle with everyday issues and growing up -- well Sam does that too but he also has his brain fighting him AND he is on a lot of medicines for his epilepsy. It is work for him to get thru each day and none of us can even begin to know how he struggles to stay ‘normal’.

I am not sure if we handled it right or not. I do know that my heart broke as I watched him pack his bag, as he told me no one cares about him, how he cried as he left. I sobbed when he hugged me and told me goodbye and I held him tight -- then I let him go. I knew what was going on and I knew there was not a thing we could do for him but pray.... 

so I texted and called a few friends to pray for him and I sat and prayed 

His brain is working the way it should... for now. 

But it will happen again and again thru out his life. His brain will rewire itself and wrong will be right and right will be wrong. 

I just pray that we find the tools for him to use to do his own ‘rewiring’ before it gets to this point again. 

This guy is on a roll!!!

Local student illustrates book

Isaac Ginter with his favourite illustration from 

Liam’s Magic Rocket, a book he illustrated.

By Kate Jackman-Atkinson

The Neepawa Banner

Fourteen-year-old Isaac Ginter has always loved to draw and now, he has added an illustration credit to his name.  The Grade 9 NACI student from Riding Mountain illustrated Liam’s Magic Rocket, a story written by Daniela Aum  of Etobicoke, Ont. about Liam, a boy who builds a rocket to fly to space hoping to find God. The book aims to introduce the concept of meditation to young children and as Liam completes his journey, he meets some friendly aliens that explain that God is already within and stillness of mind is how you connect. 

Ginter and Aum connected through a Facebook group started by Isaac’s mom Jodi for those who have been impacted by a traumatic brain injury (TBI). Aum explains that she put a post up looking for illustrations for the book and said, “At first I wanted illustrations from several children but the results were dismal. It was clear the kids just had fun but didn’t ‘feel’ the project.”

Ginter’s illustration was different and Aum said, “Isaac seemed to hold a genuine interest in the book beyond that of a “project”. There was a commitment to the message and its depth. Once I saw his first picture I laughed and cried at the same time and so did my team.”  

After seeing his illustration, Aum asked Ginter to illustrate the entire book and explains why his work appealed to her, “I was sold in an instant. It was clear that Isaac was the only one for the job. His work has a sweet innocence with a clever, almost comedic undertone. It’s moving, touching and easy to understand.” Ginter said that being chosen to illustrate the whole book was the neatest part of working on the project.

In total, Ginter drew 14 illustrations for the book and it took him three weeks, beginning in late November, to complete his work. For each good copy, Ginter says that he did many rough copies.

He used a special art marker and said his biggest challenge was running out of marker ink on the sixth good copy. 

Drawing is clearly something that interests Ginter and he says, “I’m always drawing,” and adds that it’s something he wants to stay with. 

The book can be found at www.blurb.com/bookstore/detail/2891936 where an electronic copy can be downloaded for free or a hard copy version purchased. Jodi says that they plan to donate a hard copy version of the book to the Neepawa Public Library as well as one to the library at HMK.

------

photo by kate jackman-atkinson

Is that Isaac Ginter on page 3!?

Kaiten Critchlow/Neepawa Press 

Kelwood resident and NACI Grade 9 student Isaac Ginter peruses “Liam's Magic Rocket”, a recently published book featuring his illustrations. The Ginter family connected with the book's author through an internet group for Canadians who have been affected by traumatic brain injuries.

Kelwood youth has illustrations published 

By Kaiten Critchlow 

Neepawa Press

A Kelwood youngster with dreams of getting into the graphic arts industry is getting an early start in his illustration career.

Isaac Ginter, a Kelwood resident and Grade 9 student at NACI, has had his illustrations published in a book being sold worldwide titled “Liam’s Magic Rocket”. The book is inspired by a child’s questions about God and was written by Daniela Aum, a Toronto-based author.

Aum initially wrote the book after being “stumped” by a child’s questions about God. Shortly after putting her thoughts on paper, Aum decided illustrations would add to her story and sent out an open invitation to youth to enter their drawings.

In the meantime, Isaac’s mother Jodi had been talking with Aum through a web-based group for Canadians affected by traumatic brain injury. Isaac’s younger brother Sam is a traumatic brain injury survivor, just as Aum is.

Aum passed on the invitation to Isaac and he decided to enter an illustration for one page of the book. After Aum saw it she opted to ask Isaac for a few more of his drawings.

“At first I wanted this book’s illustrations to be a compilation of several children’s illustrations but there was no cohesiveness and it just didn’t work,” Aum said in an e-mail interview.

“Isaac stood out for several reasons. Besides having great technical skill, his work has a clever, sometimes comedic innocence to it that really melted my heart. 

“The way he visually translated the message was sweet, touching and a few images made me laugh and tear up at the same time.”

When Isaac got word he had been chosen as the sole illustrator for the project he couldn’t believe it.

“I was excited but kind of stunned at the same time because I didn’t think what I drew was that good,” a humble Isaac said.

The young illustrator spent his spare time over a three-week period putting together more illustrations to complement Aum’s story. In the end, the author said Isaac’s final pieces were even better than she anticipated.

“He did a fabulous job and with practically no direction from me,” Aum said.

Isaac’s mom Jodi is just as elated about her son having his work published and the proud mom has already purchased seven copies of the book. Jodi said she hopes to donate copies of the book to Neepawa’s public library and H.M.K.’s library as well.

For anyone wanting to see Isaac’s work in print, a free online version of the book is available for viewing at www.blurb.com/books/2891936. The hard copy of the book can also be purchased from the site at-cost.

Jodi also keeps a blog at visibleangels.blogspot.com about her family’s journey with brain injury since her son Sam’s accident.

Isaac plans to become a graphic artist specializing in video games after high school.

It's 'Blue Monday'...

... isnt that every Monday!? Ok I am joking... but only partly

for us the weekends are always such a hassle. Sam is home and every noise or action in the house tends to irritate him, which will result in him being short tempered and wanting to fight. This weekend was no exception.

Things have been ok but there has been an underlying grouchiness that has been brewing since around the end of November. For someone with a TBI (or at least with MY survivors) the excitement and stress (both good and bad) of the Christmas season seems to not bring out the 'jingle-jangle-share-the-love' kinda feelings. There is too much noise, too much visual stimulation, too much food, too much action, too much energy in the air, to little sleep, too little slow paced routine... just too much of most things and not enough of others.

Come mid-November Sam is getting tired with going to school, football season is over, cadets each week (and quite a few weekends too), trying to keep up with everyone else in the house and those people that come and go in the house. He is not sleeping well and his stress levels are rising and he is a ticking time bomb for emotions.

While everyone else looks forward to the 2 weeks of holidays away from school and the rush of life and routines, they can be 2 weeks of stress for others. In our house, we have to be sure to keep the kids somewhat on a routine for Sam's benefit. They are not allowed to sleep past 9am, they have to be in bed by 11, we still eat our meals together as much as possible, the snacks and treats of the holiday are monitored (so sugar levels do not hit the high levels which result in not just the rushes but the major crashes ...)

But even with all this being done (and you can bet that no one under the age of 17 is thankful for this scheduling and monitoring) there is still that under currant that is humming in the atmosphere that Sam picks up on and runs with if given the chance. Where as one teen will laugh have fun with other friends or family members, Sam will go into overdrive in order to try to 'keep up' with everyone and not be able to gear down and get to a normal tone or speed. This results in family and friends thinking Sam is 'trouble' or 'hyper active'. They dont see that he is basically just trying to survive each day or moment at a time.

Fast forward the holidays to Jan and the first week back to school. What happens then? Well, teachers and students are done with the holiday stress and have moved onto exam stress and fighting to get back into a regular routine. What doesSam feel? Stress, overwhelming stress... nothing much more than that. this causes him to become tired, fall behind in some areas, which causes him to feel stress, then he will become more tired and fall behind more... it is a vicious circle.

This all brings me to Blue Mondays via the weekends... Sam gets home Friday nights trying to unwind and relax but has to be surrounded by 5 other people. If he has plans to go out with friends (the oscar award winning Sam appears then) then he is ok to a point-- when he has to come home again and life is still waiting for him. I have people wondering why are not here or there and I cant tell them it is because Sam is having a melt down, or he is stressed (which would result in a melt down if pressed), then add to all this mix one of the other 3 kids in our house and all of their issues (and yes drama...)

It is mornings like the one we had today that makes me wonder "have we been handling all of this ok" and "is there other things we should be doing" and the big one"does anyone ever listen when Dennis and I talk about how life is for us when they are all demanding we be there/here/anywhere/somewhere"
Sam's accident may have been over 3 years ago but we are all still living it daily.

Still fresh

the other night we all sat around watching NCIS and it was in the final 15 seconds of the show. (please forgive me for not remembering the name of characters -- we were/are just starting to watch this show)
Mark Harmon (the 'head' dude) just finishes telling the female character (Kate I think her name was) that her job of protecting him is over (after she just took a bullet for him in the chest-- but was wearing a vest) ....





even in typing this my heart is pounding and i am tearing up...

all of a sudden she is shot in the head

i was so shocked at it that I covered my eyes and started crying,

uncontrollably, sobbing

like i had a vested interest in the show from watching it for months

like it wasnt a show at all but real life

I had a sick feeling in the pit of my stomach

my head was swimming

my kids quietly filed upstairs as Dennis hugged me

Sam sat there and watched me cry (which I learned when I finally moved)

my family knows that I am not one to watch shows with killing and shooting in it (minus the old John Wayne movies) and especially after Sam's accident I will not watch certain movies. I can't -- even in knowing it is a movie and there is no real harm to anyone.

This was so totally out of the blue, such a shock.

I felt incredibly silly after and I still do,

but all I could think about was Sam and the whole scenario played in my head of the first 2-3 days.

Then I could not get the whole shooting on the show out of my head. I still can't...

We have been dealing with some stress again in our house due to teens and "relationships", Christmas is just over and the New Year, there is some other extended family stuff going on.... it might just have been too much for me.

I dont know, but it was just

too much

Not quite the way I was wanting to start 2012.

How many!?

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

Epic fail? BUT...

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

BUT...
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

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


BUT...

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!)


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


SO...
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!

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

xo

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

Josh  

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! 

Isaac

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

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!!!

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...

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...

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?!

ABSOLUTELY NOTHING!

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 .... 

ummmm.... 

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...