Saturday, October 29, 2011

what is this new feeling?!?!

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

Thursday, October 27, 2011

you do the math...

TV+video games+food (until 10pm) a large Fruitopia÷The 3 Musketeers (the new movie)×2 episodes of GLEE- less than 3 hours of sleep= an all almost nighter for Sam and I 
Tuesday evening we arrived in WInnipeg so we were bright eyed and bushy tailed for our first appointment on Wednesday morning at 9.00am with out new neurologist ....erm... no EPILEPTOLOGIST... Dr.A,. It was a very through appointment that lasted almost 2 hours! We got a few answers we have been waiting a while for. 
The main one....
 SAM SHOULD BE BLE TO PLAY FOOTBALL!!!!! WOOT! AND we are still in football season since the boys won our last game, so we are in the finals now! We have a game on Sunday and it looks like he will be playing!!  Dr.A said he was going to check with Dr.Y as to what his reasons were for telling Sam “no” but he also said “Sam is a kid and let him be one!”  I was almost crying when he said that... those are the words we have been saying since April and everything has been being taken away from him!
So we went to the neuro appt, then after lunch Sam had his neuropsych appt. with E. and that was 2-2.5 hours long. We got back to the Ronald McDonald House at about 4.30, so we ate and veg’d for a bit. Then my cell rang...
“I am looking for Sam Ginter’s mom...??” 
It wasDr.A. He was able to book Sam for an EEG for Thursday morning -- BUT he was to be ‘stressed’ so that meant a long night for us. Sam was not to sleep longer than 4 hours. Now for most teens this would be a fabulous opportunity to stay up...but we are early risers in our house (Wednesday we were up before 6am) so to stay up to midnight is a challenge! But we did it! Sam and I watched some GLEE on the computer, he played a bit of video games, then at we hit SIlverCity for a 10.30pm The 3 Musketeers movie, followed by coming back to ‘the house’. By this time both of us had gotten our second wind and were not tired so we settled in to watch more GLEE. Finally at 1.45 I turned everything off and we both went to bed... only to wake up at 4am... 
Sam will be ‘stressed’ for todays EEG but he will also be the same for his neuropsych  cognitive testings today. 
It is now 2.30 and the EEG is done and went well. He slept thru it all and woke up as the tech was removing the ‘electrodes’. We walked back to the house and he slept for about 2 hours and then had lunch.  We have walked back to the hospital and now we are waiting to see E. 
Sam is very very VERY tired. He is extremely shakey today -- I am sure most of it is down to lack of sleep but we will have to watch and see if it is because he is taking 2 val proics in the am now and nothing at 2pm.
We had to forget about doing any cognitive assesments today. Sam was just too tired and out of it. He was glassy eyed and very slow to talk or react. So he will finish what he can tomorrow from 11.15 to 2.30-3.00, then we will head home. 
For the rest of this night Sam is taking it easy and I am trying to get him to stay up til at least 7.30 so he can sleep thru til morning.... 

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

Friday, October 14, 2011

Silver linings...

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

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

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

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

Wednesday, October 12, 2011

There is a lot to be said for bedside manner if only 'our' neurologist had some! (and yes I said 'our' but I am using the term loosely)
Dennis and I had wonderful second opinion phone call last night with Dr. B from Winnipeg. He  helped us to understand what all might be the reasoning behind the sudden "you are being transferred to pediatrics' call we got yesterday.
Dr. B said that it could be that Dr. Y got a slap on the wrist from the EMU clinic for whatever the full reasoning was and is stepping us backwards to ped's because if when they send us to another clinic it will possibly be Dr. Y that we deal with (the epileptologist). Now we also learned that the reasons behind seeing Dr.Y are because Sam not only has epilepsy BUT he also has a brain injury (no kidding!?) so it complicates things a bit. Dr. B told us that he has met with Dr. Y before and has found him to be kurt and brusque so THAT was not our imagination (It could stem from personality to the fact that it is more of a social style from his native land of Russia.)

Anyway, we found out the answers to many MANY questions that have NEVER been answered for us in 3 years! This lovely doctor called us at 9.30 at night from his home, gave us  his home number and told us to keep him in the loop. If we can find out the name of the ped neuro. that we are going to be seeing he can try to pull a few strings and see about getting us fast tracked with them... but he said he honestly figures that we will be hearing from someone in the next week or so. (please pray for this!)

So basically after our initial phone call yesterday at 8.30am-ish, we went from wondering what the heck!? until 9.30pm last night where we were smiling and saying "ok, we get it. Still am not impressed with Dr.Y but we will live with this for now..." A lot can be said for bedside manner! You would think that they should teach bedside manner in 'doctor school' and you have to stick with the course until you get at least 80% or better in it. Just think of the stress from patients, families, friends, co-workers and everyone that could be elevated if ALL doctors would take 5 minutes to actually explain WHY they are doing something instead of acting as if they are God.

So yesterday was not a great day and it was not all related to Dr.Y...

Sam didnt start with a good morning (thank you topomax). Since this med was 'up'd' to 2 pills a day there has been a NOTICEABLE change in Sam's demeanor, so much so that I have been worrying about him. All this medicine, epilepsy and lack of quality of life I think are taking a toll on Sammi. He has been depressed and quiet, withdrawn and sullen. Major (more than before topomax) mood swings... it had been a very tough 5 days on the double dosage... so when I told Dr.Y he said to stop taking it. YAY!!! It is not working for him so get him off it! SO i spent time already this morning on the phone with the neuro psych trying to get our time with them arranged -- hopefully hear about it this afternoon!

 I spent most of the morning yesterday, til 2.45 on the phone with various people, doctors, answering machines, etc., so when I went to town for football I was intending to go to curves to work out. Then I was going for coffee with a friend. But for that to happen I had to 1.) be relaxed to work out and b.) leave the house by 2pm... neither was happening so there was no workout for me.
I had also intended to have a green tea when I met up with my friend.... but I had a large English Toffee with 1/4 coffee instead...sigh

Then I went to football where I met with Sam who was in a foul mood (again....still -- **cough** topomax) and was informed by him that he was NOT going to be involved with football next year if this is what it was going to be (here is the quality of life I was speaking about earlier)... basically him watching the team practice and then standing on the side lines during games -- but being sure to be included when the coaches and teacher were yelling at the boys.(I dont blame him) He is supposed to be earning a credit by helping with stats and doing what he is able to do to help with the team (throwing with quarterback, practicing snaps with centre, catching for kick off or kick returns, etc) but they coaches tend to miss this part of his marks...

I sure hope that things start to settle down for Sam and for us soon... I am tired and have a permanent headache and sore back/shoulders....

Tuesday, October 11, 2011

not again

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

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

Thots and crap...

This is how I feel a lot these days... if only it would work...

Sam has been on the topomax for almost 2 weeks and I can honestly say that I hope that things start going in a more family friendly direction. We are not sure if it is the topomax on its own or if it is any combination of the topomax, keppra and val proic acid.
Sam's moods have been extreme to say the least. He will be fine one minute and then the next he is off on a tirade and is lippy, then the next moment (and this is the one that really scares me) he is silent and sullen. He looks like he is just ready to lay down and sleep forever, never to get up again. I worry about this side effect because I know this feeling.
I fight it daily.
I dont know if you ever stop being 'bi polar' (or manic depressive as they used to call it) or if you just get accustomed to learning to live with it or better at hiding it?
But when Sam gets in that mood I just want to cry myself. He doesnt want to talk, eat or do anything...
Today I will be spending my day phoning the neurologist about these side effects, a sleep lab letter we have received and a few other things. I will also be phoning the neuropsych about when we are going to see them and how we are worried about these side effect (so please do not wait on getting in to see us!)

My stress level the last few weeks has been astronomical and although I have tried to relax, I find I can't. I am so tired, feeling lost in a pool of information and LACK of information, self doubt, self pity and a pile of other things that I dont even feel like me. My cousin was out this weekend from Ontario and we went out on Sunday morning with our cameras to take some pictures and I couldnt find any relaxation or creativity in it. All I wanted to do was cry.... which is really all I feel like doing most days anyway.
I honestly feel so alone in this all. Dennis is a help but only in so much as he helps with working with Sam. I cant tell him how I feel because the way he handles stress and things is much more different than me. I need to cry it out and then I will think it out and try to figure things... but I cant even find the time or strength to actually have a good cry. It is stupid really....
I go to curves to workout and then dont be smart at all on my eating (not that I eat alot of junk, I either eat or dont eat)
I am also mad. Mad at medicine, doctors, Dennis, family, Sam, myself and I am ashamed to admit it God.  Some days I just ask "why" ....
Why did you give this responsibility to us?! Why did you do that when I dont handle this well?!  What am I to be learning!?
I know there is a reason for it all... I just wish I knew why...

I know today is a jumble of thots and crap, but that is my head these days ....

Monday, October 10, 2011

A run to remember

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

David as he first comes up to  meet the team!

Davids view of the team as he gets close!

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

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

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

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

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

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

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

Saturday, October 8, 2011

coming clean

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

Thursday, October 6, 2011

Grab some tissue first!!

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

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

    Special Mother

    by Erma Bombeck

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

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

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

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

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

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

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

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

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

    "But has she patience?" asks the angel.

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

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

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

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

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

    God smiles, "A mirror will suffice."


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

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

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

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

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

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

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

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