when?

When does it get easier!??

It was 3 am on December 23, 1997 and there was a knock at our door. I had just gotten home a day earlier from the hospital with our new baby Sam. What I remember most of that night was hollering (or what seemed like it to me)  that there had better be a good reason for someone to be at my door at this time since I had just given birth a few days earlier! I am pretty sure there were a few cuss words inserted too. But after I threw open the door I found my dad standing there. He had drove all night (normally a 15hr drive) after work to get to our house (he lived in Alberta and we were in Manitoba) to see his new grandson.

His small car was loaded with giant legos, toys and clothes for Josh, a new oak crib, more clothes and gifts for Sam, gifts for Dennis and I and the best gift of all his time with us for the next 4 days...

That time was filled with laughter, food, memory making and more love than you can shake a stick at! We had a few pictures taken but sadly none of them turned out  (that was back in the day of film cameras)

Dad spent the days with us joking, telling stories, holding his grandsons, feeding them. Playing with them, helping me do laundry and cook-- basically anything and everything that needed to be done. 

In the early morning hours of the 27th he had his car packed up and was ready to go home and head back to work. I sat up with him as he had his coffee and I had tea (I was not a coffee drinker back then) and we talked, hugged lots and made plans for phone calls (which happened every week a few times and ALWAYS on Sundays!

He got up from the table to leave and after more hugs and kisses he left -- but not before running back to the house to hand me his favorite jean jacket (which I still have) and telling me to look after it.

This was the last time I actually saw my dad. This was the last time he hugged me and I hugged him ... a for real hug. (as opposed to the kind we give him know that are quick as so not to get pinched or 'bit")

I spoke to him every week like I usually did but this was the last time I hugged him and got to tell him to his face how much I loved him and he told me he loved me.

This is also the reason why I have so much trouble with Christmas now...

It was always fun with my dad. He had this amazing knack of making you feel special - even if he had just met you! He always put in such awesome thought into gifts not just for me but for everyone. If he didn’t know you very well he bought you $100.00 worth of lotto tickets and would be genuinely excited for you to not only scratch them but to win! He would give you the shirt off his back and smile the entire time and not let on that he was freezing or that it was his last shirt. 

I have tried to do him justice at Christmas with spreading cheer, the message of Christmas, the spirit of the Season but I feel I fail miserably every year. I start each Season with a huge giant sized plan to get it (and keep it)together. 

 I  work hard to make sure that things are great for dad and the family  (not just in presents) I plan movie nights, time together baking, visiting others, surprising people that have made me smile through out the year but sadly I keep coming back to praying for it all to be over quickly so I can get back to our usual routine... 

I mostly just want to sit and talk with my dad, hug him, have him know me and every year he regresses and gets quieter and more withdrawn. He doesn’t talk much with me, he rarely smiles at me and every time we visit it gets harder and harder to want to come back. 

For the most part, I still go every Thursday to see him, but I find my moods get very depressive in December. I want to just crawl into bed and put the covers over my head and not come out until January. I dread the Christmas season. I have tried to do things that I know dad would done and I put love and imagination and creativity into the family’s gifts, I work to make it a season of giving but I find there is still an empty spot in my heart.  I sit and cry most days and it saddens me that my kids will never get to know my dad. 

This year has been no exception.

And there is a twist this year and here is why:

 I usually tear into  Jodi Picoult book and find that a day has passed and I haven’t noticed, as I have been lost in her novel. This year for Christmas I received her new book “Lone Wolf” and to say the least it has brought me to tears, butterflies and that empty dropping feeling in my stomach.

I had seen this book on the shelves before Christmas and read the info on it but apparently I never really read it. I somehow missed that it was a novel about a dad who was in a car accident and winds up with a severe TBI. 

As in all Jodi Picoult books, she walks you through each character with such bone jarring, breath-taking accuracy. I can only imagine that if someone who has NOT walked this journey would assume it is ‘kind of’ like this... 

I can tell you it was and is exactly like that. 

I sat reading yesterday and tears would well up and pour down my face. I remember the terminology and predicted outcomes that the doctors in this book tell the family members as if it was yesterday for me. The medicines that they were prescribing and why. The actual physical description of the dad lying in the bed was a kick in the gut as I read it - waxy like skin, a faint smell taht you cant quite place, a small spattering of blood, the tubes, the smallness of your once great, larger than life dad.

 I remember that stress and horrible gut feeling of having to decide whether or not to let Dad go. I remember conversations that Dad and I had had before his accident of what I was to do if there were ever a situation like this one. I remember that dropping of my stomach as I had to make that final decision to take him off of life support. I remember trying to explain to other family members what he wanted and actually form the words to tell the doctors what he wanted.

I am well over half way through “Lone Wolf” and had to put it down multiple times yesterday, wondering if I was going to be able to pick it up and finish it. I am struggling right now because of the Christmas season, as I have done for the last 17 years and yet I find I keep coming back to the story. Maybe because even though it is a fictional story, it is nice to hear that someone else gets (to a point) what I went through (since I am an only child and my parents were divorced). I am not sure where this story is going to end up - maybe it will be a sappy ending where the dad pulls through and all is fine (but I doubt it, as I have read almost all of Ms. Picoult’s books). I don’t even know if I will be able to finish it all. I might just put it away and leave it -- but I doubt that too 

 I just keep wondering when will I enjoy Christmas again? When will I stop feeling like a failure and be able to move on like other people?

little by little

Sam is slowly gaining lost ground from the last few years of set backs. To start with he has moved to a new school (as have Isaac and Hannah) that is closer to our home, so that means sleeping in longer in the morning, a 15min or so bus ride, home after school BEFORE 4:00, more opportunities for sports (which he joined the volleyball team already), and other after school activities. It also means smaller classrooms, less busy-ness in the room/halls/school, which means it is easier for him to concentrate and get more done! We got a report card last night and his marks were mostly 80's and 90's. Different teachers, classes and methods of teaching but still a HUGE confidence boost for the boy!

About a month ago he also got this:
his long, long, LONG awaited learner's permit! There was no issues with medical stuff either.  He was absolutely FLOATING when he left the building! (and this mama was in tears)

Sam had been thinking about leaving cadets too due to issues there - mostly ones that he saw were causing him stress. But Dennis and I spoke with him about it and discussed how he can't quit everytime things get a bit stressful. He needs to learn to deal with the stress so that he can live a normal life and people can learn to rely on him (not worry if he is going to quit or walk out on them when things get a bit tough) so we told him to talk to his CO at Air Cadets and see if anything can be worked out there....Then I did a typical 'mom thing' and called his CO and asked him to talk to Sam. I explained how Sam's confidence has taken big blows the last year and even more so in the last few months and his CO agreed. So he spoke with Sam and all is well now.  So Isaac AND Sam are preparing to head to Italy and France in May 2014 for the 70th Anniversary of D-Day with cadets. (if Sam had quit cadets he was not going to be going on the trip) He seems pretty excited about it again!

Isaac went to his first counselling session last week to help him to deal with issues surrounding the accident and life. He hasnt talked much about it but in the last while (especially since the kids have all changed schools) things have been on a more even keel -- or maybe it is just my wishful thinking --and Isaac seems to be happier and more apt to help out and put some effort forward to making things fun around here again.

so it does seem to be that little by little, day by day things are making changes for the better. Sam is still seizure free and medication free, he has lost ALL the weight he gained over the winter last year (40lbs or so) and he feels great, he has energy, he can talk, walk and function with a smile on his face and a spring in his step! Our son is living as a normal 16 (almost 17) year old and the zombie like teenager we had last year that couldn't walk from the bed to the couch without a nap or a fist fight with his siblings is a distant memory. Sam talks to us frequently about his plans for life and where and what he wants to do.  His ambition has returned, his faith is strong and his love for life, family and friends shines through.

Everyday I thank God for this blessing to our home. I thank Him for not only getting us through the journey we have been on but also for TAKING us through this. We are growing as a family and I believe we are all growing in our faith with Him.

Our Family Update

The following pictures were all taken by my wonderfully talented, professional photographer friend, Cynthia Korman! You can see more of her beautiful work HERE on FaceBook! Please stop and have a look at her work! She rocks!

Hannah Gurl is now 13 and becoming quite a beautiful young lady both inside and out! We are always being told how kind, caring and courteous she is. Last year, gurly-gurl started gymnastics and this year has worked her way up to being a helper/teacher with the other students! She is currently working hard to get her back walk over perfected and trying to find time to ride her horse Lil Bit! She is not quite sure where she wants to be after highschool but she is leaning towards photography (at the moment) ...

 Isaac has just turned 15 and can always be found with his ear buds in listening to music with a paper and pencil not far from his reach! This last year Isaac illustrated a childrens book, Liam's Magic Rocket, that  BI survivor, Daniela Aum, wrote! He was quite the local celebrity for a few weeks as both newspapers ran the story! Isaac joined drama this year and is looking forward to major production in the spring - which is Oliver! He loves highschool and takes his courses very seriously. He wants to go to the Art Institute in Vancouver, British Columbia when he graduates, although he is not 100% sure if he wants to do Graphic Design, Culinary Arts or Fashion Style...

Samuel is closing in on 17 (in mid-Dec) and as of the last 6 or so weeks has been TOTALLY seizzure medication FREE and the big pay off here is NO SEIZURES and is over ONE YEAR SEIZURE FREE! The last year has been a very bumpy one filled with many tears, prayers (both answered yes and no). Sam will be starting at a closer, smaller school on Monday and I am sure we will continue to see more changes as this happens! Sam is still wanting to farm with Dennis and I when he is done school. He also wants to ave his own meat cutting shop,  which my inlaws already so,  so he can take over from them.

Joshua is 18 now and completing his grade 12. He is busy with football, work (where he works for a local farmer) and his girlfriend Dana. There is not much more to say about Josh because those three things are is life!  He is not too sure what he wants to do when he is done in June, but he 'might' be interested in going on an ag exchange, going to college for heavy duty mechanics or ag business. ahhh to be young and your whole life ahead of you!

Dennis and I are busy with the farm and working more and more to the holistic style of management here. We are working hard to bring the land back to a healthy state and grow our cattle in the same natural (as much as possible) style. God gave us this wonderful world, land and opportunity to farm again so we want to be sure that we treat His gifts with as much respect and gratitude as we possibly can!
I am hoping for myself to maybe get more into playing with my camera as we go. I love being behind the lens and creating beautiful pictures for myself and others. Maybe once we get into a smoother routine of life I will find this time for me.

what a few well scripted lines can do...

Last fall Dennis and I bought an amazing little addition to our entertainment world... we bought a PVR. On the whole we, as a family, do not watch a whole lot of television. We watch a few shows together for family time and each of the kids has a show or 2 that they like to watch, so we thot this would be a good purchase so that we could record the shows we want and watch when it is a good time for us.

We found 2 great shows that impressed us and they were "about" Brain Injury patients, either high functioning or not so much..

One was "The Finder". The basic premise of this show was a veteran with a TBI was awesome at locating things (Walter HAD to look for whatever it was that struck him until he found it) He was kind of like a Magnum P.I. for 2012. It was an awesome show and we all loved it. Sadly it was cancelled and one of the main characters died in real life just a month ago (Micheal Clarke Duncan). We are all very disappointed, especially Sam as it was a show where it had a survivor doing really cool things!

The other show I started recording was "Saving Hope". It is about a doctor (Charles) that was with his fiance on their way to their wedding and there is a car accident, he gets out of the cab he was in, helps a lady in the vehicle that has hit them then he collapses and goes into a coma with a brain bleed. The rest of the show follows the day to day of the hospital and its patients.... and his fiance (who is also a doctor) as she deals with this trauma and her day to day stuff at the hospital. All the while the Charles is talking about being a doctor and a patient. As I watched the first episode today, I struggled between tears of remembrance of Sam's accident and daddy's accident, I cried for the fiancee and what she was feeling as I remembered that feeling of not knowing what to think or do. Then I cried as I heard this line from the Charles: "What if we knew our patients? What if we knew what made them laugh, cry, smile? What if we listened to our patients?"
 I was walking on my treadmill and I almost fell off when he said this...

Yes ...

WHAT IF....

What if doctors actually did listen to patients and their families!? How many people would not be misdiagnosed? How many families would not be torn apart by too much medication or not enough? How many patients would have a happy life free from pain or drugs? I strongly believe that doctors really need to learn to not just listen to their patients but they need to learn to HEAR what they are saying and believe them! I know a lot of what our family has gone through the last year... heck the last 4 years... 16 years if we want to go back to my dad's accident (20 if we want to get really into it with Dennis' last accident!) if doctors had just listened and heard what we were saying about things we were seeing and experiencing. Not just brush us off as they 'had a busy day and many more patients to see.' How is their time any more important than ours? How is their day any busier than ours when it comes to saving someones life? Maybe instead of doctors pushing to "save" as many people as possible should focus more on taking the time to 'getting to know your patients and see them as people, husbands, mothers, daughters, sons, brothers and not as a meal ticket or the next payment on their new boat or vacation.

I know there are good doctors out there and we were VERY fortunate to have one with Dr. Chapman ,who was the doctor who saw BOTH Dennis and Sam at the times of their accidents and was our family doctor from the birth of Josh in 1994 until his retirement a few years ago. He believed in spending time with his patients and they were like a family to him. He knew I loved Corrie St. and would tease me about it. If we happened to see him in town he always had a big smile and wave for us. He believed in getting to know his patients and listening to them. He didn't want to go home at night and suddenly realize at 2am that he had missed something! This meant our time with him was just that and he gave you his undivided attention.

He should have been teaching a course on this to up and coming doctors so that many many MANY more people could have benefited from this type of treatment. Our new doctor (Dr. N)  is not quite like family as Dr. Chapman but he seems to be getting to that.  So we will keep seeing him for now.

I guess what I was trying to get at, was how much a couple of well scripted lines from a tv show can  make you think (and cry) and then create a post about it!  If you have the chance to see reruns of The Finder (or if you can find episodes on line) I high recommend it and Saving Hope is on for another season , so far and so far (meaning one episode in) I love it!

Where we are at these days...

Ginter Family 2012

So it has been 5 weeks that Sam has been off of all the medications and so far so good. He is eating well, sleeping great and is able to go to school, play football and basically participate in life in a way that he hasnt been able to since last fall (and to be honest really since his accident 4 years ago).

He is in school full time meaning all day, everyday -- just like everyone else! His course load is not a heavy one but not an easy one either. We are working with him to keep his stress low and to not let things get to him (and on that end it will be a time will tell scenario of if he can do it)

We had a meeting/interview with the Lion's Foundation, 2 weeks ago about a seizure dog and we hope to know by mid to end October if he is on the list to get one. Even tho' Sam has been siezure free for a year and a bit now, he will always be at risk for them. A dog will be added peace of mind to Dennis and I for when Sam is out on his own  - even Sam admitted it would be less stress on him to know that there was someone (even a dog) there to help if he has a seizure! The dog (if we get one) will be trained for getting a phone to Sam after a seizure, barking to get help during a seizure and it will be trained to dial the lifeline if no one responds to the dogs barking! If he is approved for one Sam could have a dog as soon as February 2013. It is then that there is another class/seesion in Oakville Ontario, but it could be later also... so we will see! 

This is where we are in life right now... again. One day at a time and luckily we have been blessed with no drame as of late! Praise the Lord!

We had family photos done yesterday (the top pic of from that session!) and once I have all the pics of the kids back I will update on everyone else! 

One more day...

then the kids are all back to school...
then maybe I can get back to a normal regular routine...
maybe I can relax...
maybe....


let the countdown  commence...

**sigh**

You've come a long way baby!

Sam on Aug4/2008
1 week after his accident

Aug 5/2008

July 28/2012
16years old and 4 years later!

This years July28 came and went with Dennis, Sam, Hannah and I camping at Kerr's lake. 

As I sat looking over the lake on that Saturday I have quite a few vivid memories that made me smile and brought a tear to my eyes. There were one or two that made my heart skip a beat but I focused on the happy memories and banished the others.

Over the last year alone Sam has been thru so much and now that we are on the other side of this latest rough patch we can rejoice in his recovery and his growth! (both emotional and physical!)

Sam has been off all seizure medication for almost 3 weeks and the change in him is nothing short of PHENOMENAL!  He has lost close to 15lbs and has energy like you wouldn't believe! He is happy and caring, thoughtful, wanting to work, play football, workout, talk and be involved with life!

He is talking to us about how he felt this last year with the meds.  I know I am (because I cant speak for Dennis)  trying to deal with the guilt issues of not getting the right help and no listening (not the kind of "ear listening") to our gut feeling about the meds, the doctor and how Sam was reacting to it all. 

But I am not letting the guilt run me over, I am DEALING with it. I am praying about it and everything more right now. 

I am amazed and how MY OWN health has changed in the last few weeks! because I am not letting the guilt stress me out, SAm is feeling better so the stress there is gone... I have actually been feeling good and I think it may be the reason for my small weight loss too! 

I am starting to wonder if this is the beginning of 'the end' for this blog. I want to say that it feels as if we have come full circle but if history has taught me anything it is to not count my chickens before they hatch!  I know we are still going to have challenges but maybe now we are more able to see the light at the end of the tunnel and not assume it is the train...

here's hopin'!

He's baaaaaack...

Sam has been home from Brandon for  few weeks now and things seem to be on a more even keel.  We can see he is working hard to not snap all the time but still has a few moments. He has also decided to start reducing his meds because he is tired of feeling like crap and so out of it all the time. We spoke with him about it and made it clear to him that there might be the possibility of seizures, the repercussions of seizures (not going for his learners or driving our equipment, possible no summer camp) and he said he understood but was still going to back off the val proic acid. He is now down to 1 - 250mg a day and we also learned he had stopped ALL morning meds. His tremors are not really subsiding but his energy levels have very noticably increased! SO much so that while we were camping he was throwing the baseball or football a few times a day for an hour or two! He has been out walking every morning or on the bike or riding the horses. He is starting to look like and act like our old Sammi.

Which is nice because we really missed him...

We should be seeing Dr. A in July or Aug and we will share all this with him then. Our hopes are to go a more holistic approach for Sam to not only the meds (possibly see if there is a natural med for him if needed) but with this mental state too. He needs to learn how to deal with stress and issues BEFORE they arise into such a place that is will induce seizures. And I am happy to report that Sam is totally on board with this all!

The 30 or so lbs he gained over the winter really have made a difference to to his overall physical look too. He looks better but is just out of shape, so he is working hard to get back into the swing of working out and exercise so he is in shape.

We are also still waiting to hear aboaut the seizure dog, which will be a big help if Sam can get his meds reduced. Then he will have the dog to help with his recognition of rising seizure possibilities. We are waiting on the next step which is the home assessment.

The bracelet campaign was AMAZING!!! SO far I think over $700.00 was raised but I will be going out to the businesses and picking up all the donation boxes this week and will have a grand tally later. Dennis and I think that next year we will buy the bracelets again but the money we raise we will keep to our TBI group and they can decide where and how to spend the money to help spread awareness. We have really struggled with the MBIA this last while. There have been quite a few instances where I seriously have regretted having the donations given to them -- but I did say I would so I will honour it but not again. LIVE and LEARN!

Living on the edge...

The last few weeks and days have been incredibly crazy  hectic .... stressful here. I am not usually one to talk much about Dennis on here but lately he seems to be having his own issues with his injury which have been causing me more stress. He is on a one track mindedness route it seems and he can't seem to get off it. He is literally eating, breathing and living the farm.... which is fine to a point but he gets stressed about things and will only talk about cows, tractors, the rain and how it is going to effect crops, fencing, cows, calves, equipment ... did I mention cows? So when I have had to deal with issues with Sam (and believe me these days there have been MANY of them)he is hard to get him to hear me and give me the help I need. He hears me talking but not always hears what I am saying -- almost as if I am speaking french to him. The other night Sam was having a major sensory overload issue (he had spent the weekend with grandpa and grandma then came home to 7 people, 5 dogs, the usual Sunday dinner rush, getting lunches ready for school on Monday, dishes to be washed, etc). He was vibrating like mad and his mouth was going a mile a minute to match his attitude. Dennis and my mom were talking and Sam was in his world... I had to take Sam out to the porch to help him to get re-focused on the task at hand and to regroup... Dennis tho most of the night had to keep asking things to be repeated. He said he was not able to follow anything being said and it was extremely evident ... to me.
I struggle with pointing out Dennis' deficiencies. I am always scared I am going to say the wrong thing or not get across what I am trying to say OR that he will think I am treating him like a kid or worse. So I let it all go until I can't hold it in anymore and then look out. Then I have a melt down ... and it ain't pretty...
I need to learn how to talk to him and let out my frustrations in a healthy way before things get to where I am feeling like I waaaaaay out there on that darn ledge.

new hope

So Sam has been at the CATC (Children and Adolscent Treaattment Centre) for 5 days and was able to come home last night, for the weekend but he has to go back on Sunday evening. He has met with all the doctors and psychiatrists and counsellors. His days are busy, spent with one or more of the professionals, doing school in the afternoon, working on booklets to help deal with things and general socializing. He says he is getting a lot out of it, and i guess this weekend is a trial run.
If we have any issues or problems we can call the CATC and take him in -- I doubt that will be necessary. He seems much more relaxed and more of the Sam we had before his accident almost 4 years ago. But then while he is at the centre the stress of home and school and family is not there with him.
Dennis and I spoke with the other kids this week too while Sam was not here and we explained to them that we will all be going for counselling and that they need to be open and honest about their feelings toward us, Sam, each other, this situation. We had a good talk with them on Thursday night and I hope we were able to convey the importance of this... time will tell I guess.

Something we did talk about (that we never had before) was who felt that since Sam's accident they were missing out on things -- when it was all explained and pointed out about we were talking about they realized that no one had been missing out on things really. No more than anyone else in any household that runs on a budget... the kids all still got football, cadets, gymnastics, movie money, lunch money, meals out, new clothes, new music, ipods, etc. There has been a lot of 'poor me' going on with us all... and we just reminded the kids of all of these 'blessings' and how we need to focus on what we have and not what we dont. We also pointed out that Sam has to do this also -- he needs to focus on what he CAN do and not what we can't. We tried to get them to see a bit of the last year thru Sam's eyes and how the loss of his getting his license, not being able to go to friends houses, play hours of video games, being tired all the time, feeling drugged out, having trouble walking and talking and having to spend almost everyday with Dennis or I  -- is most definitely not a walk in the park. Basically, Sam gets 'special treatment' but it is not a treatment that any of them would want because it means that they lose out on everything else. It was amazing to see them start to realize what Sam's days are like and how if they had to spend as much time with us as Sam does ... that it would suck.
Even Isaac had a change of attitude once we spelled out how Sam spends his days at home and how his days are now at the CATC.

We got a phone call from the CATC on Thursday telling us that Sam's val proic med levels were high (they should be between 50-100) and he was up at 123.5 -- so they reduced one VP a night and the next day they tested and he was still 115. Dr. M (from the CATC) couldnt get a hold of Dr.A (epileptologist) as he was away for a few days and so we arent too sure what the plans are for things yet. Hoping Dr.A will say to reduce more VP -- crossing fingers that then Sam will be less tired and feeling sluggish, irritable, etc. (maybe we can get him off them altogether!!! .... wishful thinking .... )

For now our family is playing a waiting game on doctors and the centre and we are taking everything one day at a time...

this is the day...

so nervous about today and taking Sam to the Child and Adolescent Treatment Centre (CATC)
just want to sit and cry about it all even though i know it wont change a thing
or make anything better
just not wholly sure what all i am feeling about it besides nerves
too many things to think about and feel
maybe tomorrow i can think clearer
right now all i feel is tired and lost for my son
for me
for our family



maybe tomorrow...

Just a distraction

WOW...

W.
O.
W.

I am shocked at how fast the bracelets are leaving my house! I have mailed or given out ALL the bracelets that I have recieved from the MBIA(Manitoba Brain Injury Association)... again! SO I am hpoing they will order more as I have  MORE places that want them!

This campaign has been a good distraction for me. Something different to put my energy (when I have it) into. I have needed to do something for the past 4 years that is for me and I guess this is it.
It is for me in the regards that from my perspective, getting more awareness out about TBI will help someone family, wife, son, daughter, mother, someone, somewhere - if we can get BI more publicly recognized and not so "oh-there-is-nothing-wrong-everything-is-rainbows-and-skittles" kind of attitude that not only does NOT help the survivor OR the caregiving family -- but it makes it hard for other people to know how, when or where to help.
I am not saying I have all the answers but I am willing to put my neck out there and try a few things out to see if they work. I am wiling to be the one to make some changes or suggests some ideas.
I have been busy on FB and Twitter with asking for support - and the bracelets are FLYING from our house! (almost 1000 of them in 2 weeks!) I have been on the phone with professional sports teams, sports commentators, news stations, talking with friends, families of survivors, caregivers, SURVIVORS!
I put bracelets out (with a donation box) in 14businesses in and around our area. I have had to refill baskets a few times. The bracelets are FREE but if people wish to make a donation the money will go to the MBIA and hopefully we can use it to get better awareness out there and maybe work on a campaign for 2013!?

The distraction that I have needed these past few weeks is from Sam. Dont get me wrong I am NOT ignoring him or leaving him high and dry. He is always with me (never really far) but ALWAYS with me. He is having issues with this and so am I. We are together too much right now, but there is nowhere else for him to be. Family memebers dont really get it, it seems (and they all have their own worries) and Sam doesnt want to be with them ... catch .22 . We are still looking for help and we may have found it.
On Monday morning we are going to Brandon to the Child and Adolescent Treatment Centre. Sam says he wants to go and that is good because since he is 16, he has to admit himself. Usually they dont take brain injury patients but once I explained our situation and that with all the meds he is on we are struggling, they made an exception. SO hopefully he will go and stay and WORK with the staff. We have spoken to him about it - that is will not be a magical fix, it is going to behard work, that he has to TRY and not give up, that he and WE all need help. He says he agrees ... but in reality he always says that and then he takes 2-3 steps back.
Monoday will be hard. I know he needs to go and it will be a break for all of us and there will hopefully be the help that we desperately need... but still...
I am a mom, Sam's mom and I worry. What if they lose him  like the school did? What if he quits it all on us? What if this is our last resort - which is odd because in actuality there never was a first resort...?
I am preparing myself for this as much as we are preparing him. We have told Josh about it but not Isaac and Hannah so not to add more worry and stress on them, but also so that if Ike and Sam get into a fight before he goes Isaac cant 'get Sam's goat' by saying something that will make him not want to go to Brandon.

pray for us all please...

Updates ...

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

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

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

not sure who needs it more...

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

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

Like living with a drug addict

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

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

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

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

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

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

Helping spread awareness

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

this MIGHT be that post...

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

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34

I am working hard at trying to live this verse...

Our weeks are seeming to get worse and worse by the day! It all started with the last ‘running away’ issue and from there it has grown into:

~ quite a few trips to Winnipeg to see the epileptologist and psychologist

~ many phone calls to find someone closer to home for psych help

~ new meds

~ new reactions to meds

~ extreme tiredness (on everyones part)

~uncoordinated, clumsy walking, no hand eye coordination, mumbling, 

 emotional out bursts, anxiety, lots of incoherent speech, rambling, falling asleep at the drop of a hat, quarrelsome attitude, aggressive times

This is since he started on the Clobazam last week. He has been on his maximum dose of it since Tuesday (today is Friday) and the side effects are at thier highest they have ever been -- but they started once he started the med. We will wait until next week and see if it subsides.

Next Tuesday, we start reducing the Keppra at 1 pill a day and we are praying that once that starts that Sam can see some improvements.

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

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


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


THEN ....


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

 HALLELUJAH!!

Our day went from cloudy to sunshine...

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

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

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

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

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

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

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

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

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

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

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!