Triggers...

Trying to figure out these seizures are going to be the end of me! Learning (or figuring out rather) what Sam's triggers are .... sigh ... lets just say that just when we think we are getting a grip on the and possibly seeing some order...
we don't.

Yesterday Sam was tired-- so tired that he was 'napping' at 9.15am. He slept for a about an hour then went out to help Dennis with some field work at 10-ish til about 2, then came in and was very quiet and withdrawn, watched a movie in our room, ate a bit of dinner and came down before bed t inform me that his back and shoulder on the right was jumping like crazy.
His quietness and subdued manner is different from when his anxiety kicks in (obviously) and with the nerves jumping and his tiredness -- well we thot there might be a seizure this morning. Not that I want him to have one, I just wish we could learn the triggers and possible pre-cursors to them. These surpirse sneak attacks that they do are too much!
This week I am trying to get some snacks and lunch things ready for school next week, lunch stuff ready for our 2 road trips on Thursday (to Wpg) and Friday to Regina, school supplies organized, canning done, laundry, housework and football -- throw into this mix the new puppy had fleas and gave them to my dixi, so that meant 2 doses of 'flea bgone' and one bath AND an appointment at the dog groomers so that they can stay at my mom's this weekend while we are at the wedding...
I am also trying to not make the house stressful (as that could be one of his triggers). I am beat!  I am supposed to work on the attic room for my space this week but I don't see it happening.

I spoke with the resource teacher at Sam's school yesterday too and we are trying to make some plans for his school year but until we see the neurologist we can't do a whole lot -- which will mean a rush on it all next week. I am ok with not pushing it but Sam is determined to get back to normal. I hope we can make it back to there too.
I miss our 'old normal' ...
the one we were at 6months ago...
Never thot I would hear myself say that...

Defying Gravity...

Last night Dennis and I took some time out of life to go and see the Broadway play WICKED. It was amazing! I loved it - Dennis enjoyed but I think LOVED might be too strong of wording for him.

I loved the words to the song Defying Gravity :

Something has changed within me

Something is not the same

I'm through with playing by the rules

Of someone else's game

Too late for second-guessing

Too late to go back to sleep

It's time to trust my instincts

Close my eyes: and leap!

It's time to try

Defying gravity

I think I'll try

Defying gravity

And you can't pull me down!

http://www.lyricsmode.com/lyrics/w/wicked/#share

I know these lyrics are about love but they spoke to me last night about all the changes that we as a family have been going thru the last few years and especially these last few months.
I am tired of playing games with rules that seem to be more from EVERYONE but THE ONE who matters.
I am tired of people who have no idea of what our house is going thru telling us what we should be doing...
so....

I am taking my faith in God (trusting my instincts)

Closing my eyes and leaping -- straight into my Fathers arms.

I am going to work at handing it all to Him.

I am not going to worry about what is next or things I can not change. I need to start focusing on not just Sam's health but my own also. 

I saw the counselor  yesterday and I am going to work on getting the attic area back to a place for me to be to just be ... well ... me. Somewhere for me to be where I DO NOT worry about Sam, Dennis, Josh, Ike or Hannah. Somewhere that I can read, work on photography or just do nothing for a few minutes a day. The kids will be that if I am up there they are not to bother me. I will give them a time of how long I will be up there for and when I come down (and only then) can they show, talk or whatever they needed to me. They also need to learn to go to Dennis for things too. They need to learn that while I may be mom that he is dad... we are one in the same for a lot of things.

I am talking with God too about whether I am to be going back to work -- I am handing it to Him.
I am praying about Sam's doctor appointments -- and any issues that arise ... I am handing it to Him.
I am looking into maybe taking a photography course for a few months this winter -- again I am praying about it and handing it to Him.
If Sam is to be home 1/2 days for a while, we are wondering how we are going to afford to not only drive to town everyday, still be involved with football and the other things that the kids are involved in-- I am handing it to Him.

Everyday I am going to spend time each morning with Him, and work my days so that I can spend some time each day doing something for me (and NOT just Curves or walking-- as that is for my physical health)
I knowI have said before that I should be doing all of this but now I am at the point where I HAVE to do this. I am losing ME in this process of doctors, appointments and life.

So this is me... Defying Gravity...

1122 days...

That is the number of days we have been waiting for a neurologist... (if you have read this blog you will know we have not had one and have just recently wondered why not...)


BUT!!!!!(wow that is a big but! lol)

Next week at this time we will be in Winnipeg at the epilitologist in Winnipeg! They just called today to push forward our appointment which was for Nov 30 to Sept 1!!!  We are all very happy and extremely excited for this!
Sam is hoping that he will allow him to go to school regularly (me too) and I think he was secretly hoping for an all clear for football (which I would LOVE too) but I think that one is a stretch.
 Next week... wow!! I am just....

WOW!


God is good!

Times they is a changin' ...

After our week of changing of meds, strep throat, holidays ending with the seizure was followed up with a first thing Monday morning doctor appointment with our family doc. Dr. N. Both Sam and I had appointments and both had a bit of alarming news.

First of all, after talking with the doc about Sam’s med levels we were told that with the fragments sitting in the 3 different lobes that he is most likely having 3 different kinds of seizures..... so one type of medicine is not necessarily going to work. He may need to go on a second med to help with the seizures. The doctor also suggested that since Sam is sundowning by 2-3pm (this is what valproic acid does to people) that he only takes a 1/2 day school day...

Sam was NOT impressed with this news. He is just a ‘wee bit’ upset... to put it mildly. He told Dennis that he didnt want to do a 1/2 day and who can blame him. He is going into grade 11, he will be 16 soon and wants to be with his friends not stuck at home with his mom. We are still working on what we are going to be doing when school starts (In 2 weeks)

We are hoping for the neurologist appointment to be moved up too now -- our family doc is going t aim for in the next week or two or at the latest in the month (I think he meant Sept.. but we will see)

I spoke with the school student co-ordinator yesterday and she is going to work on getting a tutor for Sam if needed. SHe also said the school will work with us for whatever we need. It is great to hear but in the last 3 years it all seems to come down to the teachers and if they don’t ‘see anything wrong’ with Sam so they don’t help with what is needed for him: reminders to take breaks, reminders to write down assignments, checking in with him throughout the class time on how he is doing, etc. They left him to his own design these last few years and he faked his way thru it fabulously! (give the boy an Oscar...) SO maybe this year with the URIS nurse giving a talk about epilepsy at the first Professional Development Day and what to watch for and do they will help us more. 

At our appt with the doc. we also learned that I have high cholesterol ... the not so good one. It is high enough to be concerned and in 3 months we will test again and see what it is. I AM exercising and watching my diet-- doc said this one is mostly genetics so not a WHOLE lot I can do... sigh BUT!!!! All the tests and work ups he did a few weeks ago show my physical was good -- YAY! 

The next few weeks are going to be interesting and hopefully a continued move in the direction we need it to be to get Sam the kind of help from the school that he needs that will work with not only his epilepsy but his TBI too. I pray it will not be stressful for him (seizure trigger!!!!) and it will be a workable arrangement for our whole family -- because  since Sam’s accident in 2008 this has been a whole family lifestyle change and life change. It needs to work for our house and our family not just Sam... and I think a lot of people forget about that part of our journey ... Dennis and I still have 3 other wonderful children to raise and spend time (not to mention money) with and then there IS that pesky thing of keeping a marriage alive and running.... sigh 

Keep calm and Carry on... ummm ok?!

Lord, help me to remember that today there is nothing that You and I together cannot handle. Psalm 68:19 The Message

This has been a passage that has gone thru my head a lot lately. The last few years actually.

Everyday is a new challenge for not only Sam but for all of us as a family. We learn of new developments...

and then we learn how to deal with them...

I have lots of people who ask how I do it?

How do I get thru everything that has been thrown at us?

Somedays it feels like my answer is “I am not sure if I do ‘get thru it’”  other days my answer is “I just do ... with a lot of prayer”

This last week is a good example of ‘I just do’. We went on our second ever family  vacation. Most people go or plan for a relaxing holiday -- and we are like everyone else. We HAD planned for R&R ... and that was as far as it got... we planned.

The week before I was so busy running around with doctor appt’s, orthodontist appt’s, getting the oil changed in the van, packing when I could, 2 very sick kids (Hannah with tonsillitis  and Sam with strep throat), helping hubby when I could and just regular everyday things:  laundry, meals, etc. that I was going to need a week to rest so I could GO on holidays with everyone! 

We discovered on the day we were leaving for camping that Sam (who was still running fevers and a VERY sore throat) was given the wrong amount of medication... he was given a pediatric amount... Sam is 6’1/2” , so his meds were increased to a proper amount. The doctor also informed us that his seizure med levels were VERY high (should b 50-100 and his were 130) This meant for us as the family that Sam was tired and still very cranky but doctor told us to go and get some rest and enjoy our time away “Sam will be better by morning” ....  so we went.

At about 7pm we reached our camp ground and left the van to check in... mistake #1.

Theer was an altercation between Ike and Sam -- which ended in Ike getting a few knocks from Sam and Sam getting spit on.... sigh... seriously not impressed at this.

Mistake #1 then lead into altercations #2-4 with Sam and Ike as they were attempting to set up their sleeping quarters for the next 5 days (the tent). This lead Dad to have to get involved and then everyone was cranky!  Which lead to us praying before anymore injuries incurred or anyone hurt feelings...

The next 5 mornings were started with my phone going off at 7am (but actually being up st 5am to listen for any seizure activity from the tent...) and giving Sam his meds, trying to make coffee quietly and not wake anyone (so that mama was happy and had a quiet start to her day!). Hannah and Ike were on ‘seizure alert’ before this time and after ... Sam was not impressed by his new ‘watchers’.... again .. sigh

The days were filled with Sam doing his best to not be with us (typical teen behaviour) and not wanting to keep us informed as to his where abouts (which we asked to be told if he was going to beach (not to swim without someone) and if he was taking off for a long period of time ‘please take your cell phone’) 

It was a stressful week and we were all glad to make it home without any seizure activity! 

We got home Thursday night and had plans for going to a free concert at Clear Lake on Saturday... 

... Friday we went to my mom’s house for dinner and Sam stayed over night at my mom’s and Saturday morning I received a call from mom that SAm was not feeling well. After a bit more information we discovered he had had a seizure.... so off to the hospital we went.

Thankfully we were only there for the day this time, but it was a loooooooong day. 

All thru this past week I have prayed and thot and prayed and thot.... and prayed some more. I have had to keep telling myself that God is with us as we go thru this and sometimes we have to just “let go and let God”. As I sat in the hospital again this weekend I thot of this and prayed... 

This is how I get thru everything. I do have mini meltdowns (as I like to call them) which usually happen in the car alone  or the odd time while shopping...sigh.... but I pray my way thru them and carry on (kind of like the Queen’s tag line”Keep calm and carry on”) 

But I have also been known to say to people who ask ‘how do you do it” my reply is “what else am I going to do!?” (such profound words from such a small town girl!)

I will admit that this week I will be starting back with some counseling but more because I need to learn to let go of stress more (silly stomach issues) ... I am a hoarder sometimes   -- of stress ....

sigh

i have more news to share but I will do that tomorrow...(see I am teachable on stress levels...just a bit of a slow learner! ☺)

The one...

The following post was in my inbox this morning, it is from Proverbs 31 Ministries (I get their daily devo every weekeday -- if you want to receive them to just click on the link and sign up for them!) and it really made me stop and think... the one...
I believe that the one that the One sent to us this week is our new doctor -- Dr. Nasralla -- when Sam and I saw him last week he told me how he was working to get Sam into a neurologist and he had been phoning and talking to doctors and that by the end of this week he was going to have answers for us.  I believe that God put him in our lives for this reason. He is going to be the doctor that will fight for us and with us for Sam's care! So I will continue to pray for Dr. N and Sam ... and all the other doctors that are and will be involved with us (they will need it once they meet us! lol)  
Yesterday I had to take Hannah gurl into the hospital because she had bleeding tonsils and an ear infection -- Hannah rarely gets sick... and we were told that Dr. N was in Wpg -- so I joked with both Hannah and Sam (he was in for blood work) that maybe Dr. N was in Wpg fighting to get Sam into a neurologist... maybe... 
The trip to the hospital ended with the doctor on call not looking at anymore out patients as he was late for his clinic and God making sure there was an ENT at the hospital (we are a SMALL rural town with no 'speciality' doctors regularly) who looked at her -- with a prescription in hand we headed to the drug store then the grocery store for some yogurt, pudding and apple sauce then home to bed for my lil' girl. She is (or rather was last night) feeling better now that she was able to sleep the day away yesterday and eat some food too!  Again, God put the one doctor that we needed in place before we knew we were going to need him! What an amazing God!

August 9, 2011 It Just Takes One Marybeth Whalen

“But the gift is not like the trespass. For if the many died by the trespass of the one man, how much more did God’s grace and the gift that came by the grace of the one man, Jesus Christ, overflow to the many!” Romans 5:15 (NIV)

“I just wanted to tell you,” she said. “It just takes one.” She knew we had our house up for sale and wanted to offer me a word of encouragement. She had also recently been through having her house on the market and knew what I was facing.

As she grabbed my hands in her own, she looked at me earnestly and said. “It just takes one person to come along and love your house and want to buy it. Hang onto that when you get overwhelmed. God will send that one.”

I have thought about what she said to me, and how this Truth applies in many aspects of my life. God will send that one. The one person who can best encourage me. The one person who will provide the answers I am seeking. The one nugget of Truth my soul is craving. The one bit of hope when everything seems desperate around me.

What is that “one” thing you are waiting for God to send you right now? Maybe it is that one test result you are waiting for. Maybe it is that one check you need desperately to show up in the mail so you can make it to payday. Maybe it is that one affirmation you need to hear, but rarely do.

Do you believe that God will send that one? Do you walk in that belief, even when circumstances around you say otherwise? Do you focus on what is happening, or God’s promises?

God’s most wonderful promise came through the One who could be tempted yet sinless, Lion yet lamb, human yet God. God’s plan for redemption came through His one and only Son.

It just took one—one sacrifice, one resurrection, one hope for eternity. Humanity cried out for restoration and God responded by sending that One.

“It just takes one,” the woman told me. And that is true, even in this broken, fallen world. So many times that “one” seems far away, so insurmountable, that we despair of ever seeing it come to pass.

Make today the day that you live believing in that one thing happening—whether it is a sold sign in your yard or healing in a relationship; turn to the Creator of all things with whatever is on your heart. Spend today reflecting on that one sacrifice He made on your behalf, because of His unfailing love for you. Trust Him to do what is best for you—whatever His answer may be—and live in expectation of the abundant life He has promised.

Dear Lord, help me to trust in You to send the answers I need. Help me to take my eyes off my circumstances and focus solely on You. Thank You for the sacrifice of Your precious Son so that I could have salvation. In Jesus’ Name, Amen.

Life ain't always fair... sometimes it really SUCKS!

in my head I have wrote this post a dozen times today... and now I am struggling to find the words that I wanted to say...

I have cried today
I have prayed
I have ranted and raved
I have posted frustrated statuses on facebook
I have made phone calls
I have stumbled over my words
I have broke down in my car while driving
I have cried at the drug store (and probably freaked out our wonderful pharmacist)

Yesterday on the way to Brandon for a day trip of shopping and getting out of the house I got a phone call from the URIS nurse from school. It has been recommended from ESAM (Epilepsy and Seizure Assoc. Manitoba)  that Sam not play football -- until he is seen by a neurologist. The real kick in the teeth was to be told "it is for his best interest" " YOU wouldnt want him to get more seriously injured or have other issues physically".... GGGGGGGGGRRRRRRRRRRRRRRRRRRRRR

"Nooooo, really!?! His best interest!?" I wanted to yell at them WTF do you think I have been doing the last 3 years since the accident and the last 15years of his life!?! Do they seriously NOT think I know all this!?! DO they think I am not aware that he needs to be looked after physically!?!

I think that these people seriously do believe this... but I also believe that THEY have forgotten that there is another side to Sam. There is his emotional and mental side.  Survivors of brain injuries and people who live with epilepsy all have to deal with issues of depression... This summer since Samuels seizures have started he has lost his cadet summer camp (which was ALSO a paid job for 3 weeks), he is unable to go for his drivers license, he now has a LOOOOOONG list of restrictions on him at his regular cadet year -- where he has been a cadet for going on 5 years.  (one of the restrictions is no marching for him-- meanwhile he runs 3-4 miles a day ALONE...)

I totally understand that there has to be precautions and  some restrictions... but how about going on an individual basis and not a "broad-general-all-or-nothing" kind of schedule. if they were to step back and see some of these issues that they are restricting him from are not only ridiculous but they are detrimental to his health... his mental health! He is so upset by this new development ... he was really hanging on to football now with the cadets and license thing... Even tho it is just til we can have a neurologist OK it... that could be .... FOREVER...

Sam and I were at the doctor's again for a check up. Dr. N told us that he was on the phone with the HSC this week  -- with BOTH pediatric neurology and the adult neurology -- apparently even tho we have been 3 years without a neurologist and Sam will soon (in less than 6 months) be 16 years old and be able to go to the adult neurology -- they dont want him.  But it is almost the same amount of time to wait for a ped appt.... so by the time he actually GETS to the neurologist he could be viable for the adult neuro anyway!

A re-cap of our day is once again our life and Sam's is on hold as we wait for yet another doctor to 'let us' move on to the next stage ...

Today...

is one of the hardest days I have in the 364 other days in the year.
3 years ago today I got the call to pick Sam up from the hospital...

and 3 years ago today our whole world was turned on its side.

In the last 3 years we have had too many to count doctor appointments, trips to Winnipeg, to Brandon, days at home resting, trips to the school, to the hospitals...

New developments of fatiguing, anxiety, seizures...

I am going to pick up a cake today for him -- it is a good day!

I ❤ my son
I ❤ my family
I ❤ friends
I ❤ the help from the medical staff we have had
I ❤ my new found friends who really get what we are going thru and offer support and

Land of Confusion...

After yesterdays trip into the city, I can say I am now totally confused about ....

well...

everything.

I thot I had a grip on a lot of it after our first appt. with ESAM (Epilepsy & Seizure Association of Manitoba). Phyllis spoke to us and made both Dennis and I feel like we werent crazy about all that we have seen over the last 3 years! She agreed that Sam probably HAS been having AT LEAST partial seizures all along (since his accident in 2008). She told us that the shaking of his arms and legs are all partial seizures. She told us that we will need to make an IEP (Individual Education Plan) for him at school  so that it works with his seizure activity. Phyllis offered to come to the school meeting for this to help us to get the teachers to understand that this is SERIOUS and not just us.
We also learned that with dietary changes we can work on reducing the seizures. Adding a few things to everyones diet and eliminating other things will help Sm and give him the support needed. (this is going to be a tricky one since he IS 15 and knows everything... and does NOT want to lose the sugar and salt from his diet!)
I had done a bit of research before going in to talk with ESAM and found out that there are service dogs available for people with epilepsy. The dog can be trained to do quite a few things like getting help, alerting Sam to a seizure coming, keeping him safe during a seizure. So I asked about this and Phyllis said "YES! Start that process now! It is a 2-3 yr process to get a service dog so start now!" (side note -- if someone would have listened to me in the last almost 3 years we could have almost been to that point of receiving a dog -- **sigh** but I am over it now!lol) So I am going to be busy on the phone with the local Lions Club to see about getting it all started.  They can help to get the funding for this around $22,000.00 for the dog!
So after over an hour talking with ESAM and learning all we did and collecting a TON of info to bring home to read ... we left for our doctor appt. with the ped....

That where things went a bit ... out of my loop.

We were talking with the Dr. and he seemed a bit put off that we had been to ESAM. (too bad for him) and then when we asked for a referral to an adult neurologist -- these 2 are also epileptologists who are specialized neurologists (and I gave him the names of the 2 we would like to see -- names we got from ESAM) he seemed a tad miffed that we were calling shots. (again too bad for him) When I tried to ask WHY we have not see a neurologist he never really answered me. He was not too concerned with Sam's partial seizures or helping us to get things set on a more seizure free path-- other than taking his meds. (which are now up'd) Sam has also been sundowning much more earlier than in the past 3 years now that he is on these meds and even more so now that they have increased the levels. So he DID tell us to switch up the dosages t 3X a day instead of 2. (he will take 2pills 3X daily instead of 3 pills 2Xdaily) and he hopes that will help with that issue.
We informed the doc that we had not heard from the neuropsych yet or the sleep lab and he basically seemed to indicate it was out of his hands...but he did get me their number to call and see where things are going with those areas.
He finally agreed to send a referral to our first choice of neuro/epilep but warned us that if Sam has another seizure we will we sent to Wpg and they will put him in to the Childrens Hosp. and we will see a ped. neurologist.

When we left the doctors office I was more confused and frustrated... but I am praying that NOW finally things are moving in a right direction.

We had a very unexpected phone call when we got home from Winnipeg but right now I can't say anything about it as I am not sure what it will all do or not do for us...

Coffee Chat Interview in 4 parts

Here is the promised video of the coffee chat I did in June with NACtv Coffee Chat with Jim Cockburn. It is in 4 parts via You Tube -- please take some time and watch! 

 I

The Banner -- Brain Injury Article

June is Traumatic Brain Injury Awareness Month  

By Rita Friesen

It is a natural progression from ally to advocate. For Jodi Ginter there have been a series of events in her life that have caused her to become involved with survivors of traumatic brain injuries. On a daily basis Jodi faces three very different types of brain injuries. Her son, her husband and her father all come under that broad category. What most of us don’t understand is that brain injuries can be caused by accidents, sports injuries, strokes and whenever the brain is without oxygen for a period of time.

The effects of a brain injury are as varied as the individuals that suffer with them. For some the taste and texture of food changes, dramatically. Old favourite foods now taste repulsive. Smell present differently. And often words become elusive. For some the nouns are like drops of mercury, skittering away when needed. For others it can be verbs, or simply longer words. Most of us also don’t understand the torments of the personal journey of the survivors. It requires an incredible amount of courage and stamina to walk through the routine of a regular day. Going to school, going shopping or even hanging out with friends saps their inner strength and resources. The ultimate goal is to look normal, to fit in. To be accepted. When such huge deposits of coping skills are withdrawn for a public appearance, too often the reserve is empty by the time our loved ones are safely back home. Home is where the negative energy can be dispelled, and is.

Studying the effects of brain injury is enlightening. I had several aha! moments. The effects are often invisible, as are the symptoms of mental health diseases. The public fears the unknown and the unseen. People with brain injuries, and mental health issues, only go outside the home on their good days. So they look normal, but they pay a high emotional price for that. Individuals from both groups have been heard to say that they wish they suffered from cancer, because people understand that.

Jodi’s initial aim was to educate her immediate family about brain injury and the effects. She wanted people to know that when a survivor is out in public they are trying desperately to cope with a barrage of outside senses. They are processing sights and smells and their brain is literally making new maps and tracing new images of ordinary events. That’s hard work. Jodi spent a great deal of time with her son as he recovered from his injury. Knowing him well, she was able to decipher his wants and his dislikes. Unlike the doctors who have the book learning, or nurses that spend short periods with a patient, as a mother Jodi listened and learned from her son. The natural progression from ally to advocate occurred rapidly. With an excellent command of the English language and a commanding mother presence, Jodi got the attention of the professional staff. She was not ‘just a mom’. She was a primary caregiver. Her son lost twenty-five pounds in his initial hospital stay. When food aversions due to a perceived change in taste, texture and smell, caused a loss of appetite, Jodi and the listening staff worked to find food that could be enjoyed.

The roll as advocate has broadened to educator. Jodi was asked to present her journey and it’s lessons to a class of nursing students at ACC. She and her family work with the MBIA, Manitoba Brain Injury Association. The group has chosen an oak leaf as their symbol, the oak tree being recognised for its strength. These oak leaves appear in different colours representing the uniqueness of the survivors. The organization provides a support group, a safe place where people speak the same language.

When asked what one thing She would like people to understand, Jodi replied,’ Please do not assume that everything is fine just because they look fine. There is a hidden picture.’ Survivors constantly fight the image of people with brain injuries being dumb. They fight feeling dumb.

Jodi Holmes Ginter is a remarkable individual. Despite the dramatic twists and turns that life has tossed her way, her faith remains strong. She appreciates deeply the miracles their family has witnessed. Jodi can even appreciate God’s sense of humour. How did he ever figure her to be strong enough to deal with so many things- wife, farming partner, mother of four, daughter and friend – and advocate for three loved ones with brain injuries!

This month is Brain Injury Awareness Month. To gain a better understanding of the issue follow Jodi’s blog. http://visibleangels.blogspot.com

Now MY brain hurts!

I have been so busy this week learning about seizures. I have been searching the net and talking to people who have epilepsy AND to people at Epilepsy and and Seizure Association of Manitoba. We will be going to Winnipeg next week on Wednesday to see Dr. Goldberg and we are going early enough to stop and talk with Phyllis at ESAM. She gave me a TON of info to start with Sam in regards to diet and a few lifestyle changes, until we get to Wpg. She also gave me 2 epileptologists (neurologist with lots of extra and special epilepsy education)  to ask Dr. G for referral to.(pray that he will send us to the first one that was recommended).  Phyllis also told me that Sam will now be diagnosed with epilepsy because he has had 4 seizures. (I know we will wait and see what the doctors say...)  
My brain and my heart are competing on equal levels of pain these days... I thot we were going in a new 'slower' direction...




guess I was wrong

seizures are not fun

5:56 am

9:52 am

4.40 pm

1 minute to 1.45+ minutes 

These were the times Samuel had seizures yesterday and for how long.

They started early in the morning at home and continued the rest of the day. 

They were full clonic tonic seizures just like before.

The change this time was there were 3 in less than 12 hours, he took longer to regain consciousness and he was throwing up the first 2.

Our family doctor got thru to our Winnipeg doctors and it was decided that Sam’s med’s would be increased (thankfully we had room to move there) and that only if he seizures again after this will we go to Winnipeg.

I think it started because of our Thursday trip to Brandon. We left before 7am - which is Sam’s morning time for med’s and I didn’t have any in my purse (not sure where the bottle went that was in there) so we had to wait til we got home to take them -- and he did at 7. It was a quiet evening all round and everyone went to bed fine. But that missed med at 7am could have been the culprit. 

Then when the seizures started before 6 am and he started throwing up, there was no chance to get another dosage in to him. The nursing staff gave him some gravol to try to settle his stomach so we could get his meds and something for the massive headache he had -- but the seizures continued. Even after he got his dose.

Just before 10 am he was sleeping in ICU and another one started. More vomiting, and longer to recover. So the doctor called to Wpg and got some advice. Next time he is to go to Health Sciences.

Fast forward to 4.40  pm and I am on the phone with Isaac -- who is at home. I thot I would get him to pack some things into a bag for me incase we had to head to Wpg and as I am talking a nurse came to get me and tell me Sam was seizuring again. This time no vomiting (thankfully!) and a bit quicker recovery time.  Then Winnipeg decides to have Neepawa work with his med levels first (increase them) and if that doesn’t work then he will go to Winnipeg. 

I am not too sure how I feel at this point about this all. I understand that Winnipeg doctors will be doing the same thing there as they are here. My concern is if he continues on this seizure path how much more damage is happening to his brain? Each seizure is a bit more damage done to it. Our doctor says that the ‘only damage being done to the brain during the seizure is lack of oxygen’.... only.... not a real instiller of confidence at t his point for me...

So Dennis and I stay the night at the hospital in Neepawa and try to sleep. Both on edge and not really sleeping -- but ready, in case we are awoken by Sam’s alarms going off that he is having another seizure. 

It is now 6am Saturday morning, trying to record it al for the blog...
... and my sanity...
I have been awake since before 5. 

I am tired. 

I feel grubby. 

I need a coffee and my book. 

I feel like I have been run over by a truck.... 

but Sam didn’t have any seizures so our night was good

I can see the sun making all the flowers and grass glisten in the garden behind the hospital... and I will take it and work to make it a wonderfully beautiful day.

Oak Leaves

Yesterday 10 local businesses accepted the Oak Leaves for Brain Injury Awareness! There are now over 300 TBI Awareness leaves waiting to find a shirt or jacket to be pinned too! I am going to take a minute to thank my Amazing Friend Jenn for not only taking this pic and emailing it to me (cuz I forgot to take some) BUT for also being a business that is a Brain Injury Awareness Supporter! She posted a pic of herself on FB wearing her leaf and it made me cry to see someone other than myself and my family wearing them. (I know the football team was wearing them but I never actually saw them -- so I thank them too!)
 Each donation box is in the following businesses: Harris' Pharmacy, Neepawa Pharmacy, Neepawa Furniture Centre, Gill & Schmall, Neepawa Curves, It's Time, Chicken Delight, Neepawa Public Library, The Neepawa Banner and Beyond the Garden Gate. On Friday I will be meeting with Becky (nursing student from ACC who sent me the email) for lunch and to get started on getting leaves in Carberry too! I have a lead on the type of paper I need, now to find more in varying shades of green!

I am quite excited to get this going FULL STEAM! The more I am talking with local people who are either survivors or caregivers the more I want to get the word out there! We need to educate the public that BI's are just as serious, as crippling, as debilitating, as DEADLY as cancer, MS, HIV...
It is hard to listen to family members talk about how they can't find support to help them to help their loved ones.
One man and his wife told me over the phone the other evening about how their son (who was my age) committed suicide after living 5 years with a BI. I wanted to cry as he asked where I was getting my information from! Their son was only gone about 6 weeks when they phoned me...

We need to get more awareness and education about Brain Injury out to the public.

Softballs, ears and faith

This is Hannah's ear... after it made a connection with a softball at her grade5/6 camp trip this week. The ball luckily for us was thrown and not hit by the bat or else I have a feeling our camp trip would have ended on a fast trip to the hospital in Winnipeg. She was checked over for a concussion and had none but she did have a fast hard sleep about 5 hours after. So hard in fact that my girl friend Jenn was a bit freaked out when she pried open Hannah's eye and there was no response from Miss Hannah...

I think the cartilage on the ear is probably 'smooshed' = the equivalent of a break. We will be heading to the doctor on Monday because the hearing in the ear is muffled.  Dennis thinks it is all down to the trauma the ear has endured and I sure hope he is right.

I am feeling a bit anxious about this. There was a large lump behind her ear about 3 hours after and bruising... the bruise is turning yellow now but there is still a small lump... Her ear only hurts to touch if you touch the outer part of it where it is really purple on the 'rim' of the ear.

 I am working on having faith in the teacher that checked her out (he is an ex-RCMP officer and has first aid training and concussion training too) that he would have sent us to the hospital if it were needed.

I am trying to not flip out about it and get all "Oh my gosh what if she has a BI!?' but believe me it is taking all I have in me.

Email...

After yesterday presentation I had a few people come up and talk to me and ask for contact information. I honestly thot that they were just 'being nice'. But this morning when i checked my emails I found this email in my inbox. It was a shock and I have to admit it brought me to tears. 
Dennis and I are not sure where GOd is taking us on this journey now -- a shift to the right on the path or a continued direction that we are already going... but we will pray about this email and the offers that are in it and that were offered when I spoke to Becky after the presentation. 
Thank you Becky for the email and for the thotful help and blessings you have mentioned.




Jodi,
I just wanted you to know that I thought you did a great job with your presentation today. As I mentioned I lost my oldest son almost 6 years ago in a home accident so I can sympathize with you in a way that many cannot. I have always said that I wish that he hadn't died even if he were brain damaged because at least I could still see him and hold him. Most people think that Im crazy to think that because in their opinion "Ethan" wouldn't be "Ethan" anymore. I think that you are amazing in your ability to see Sam as the same kid he always was. You do this in a non-delusional way, seeing the changes but doing everything in your power to treat him like any other 16 year old. I think makes you an amazing Mom. I too have the guilty feelings when it comes to the way I am with my other children and am a self admitted "helecopter" parent. In our life experience how could we not be? I am however concerned that you are going to burn out. As a fellow farm wife I understand the demands it puts on a family and it is for this reason that I want to help you and your cause. I would do anything to have my child back and since I can't I want a chance to help families who did get the second chance to get the resources and info needed as well as help other families from suffering the same fate. I find there is little help in Manitoba for any tragities involving children and felt very alone in grief and still do during my hard times.

I will understand if you feel this is a journey you need to make alone and will part by just congratulating you on a job well done. You have touched me in a way that I could never fully explain and I thank you for that.

Becky 

ACC presentation

My presentation has now come and went! I was just a 'bit' nervous... LOL but once I got going... it was easy-peasy-lemon-squeezy! I so enjoyed sharing my journey with the students!

I had some epiphanies  on my drive in to Brandon, in regards to the activities I wanted to do so that they could get a 'feel' what it was like to be a survivor. So I used a few of Sam's 'issues' and ran with them! I had 5 different snacks to try -- but told the students they were to tell themselves that they were actually something else, and not to say anything. That was about the change in their 'physical' tastes... it was a bit difficult for them to make their brain work the way that a survivor does but they got the point.
Then I gave them directions to the bathroom... but not really. The wound up in the cafeteria. Even tho they knew where the washrooms were they were a bit confused and lost...

Then the last activity was that one person in each group was a 'survivor' and they had to read from a text book, but the rest of the group had the job of  distracting the 'survivor' by talking, being extremely close, singing, whatever they could do. This was to see how  and audio/visual sensory overload can affect a survivor. Then I asked if anyone retained what they read... no  one did.
Jenn (the teacher) asked me to come back and do my presentation again in February for the new students and I said sure! I will try to work on it and do a few changes.

keeping my cool

HA! I try my best to do this like 99.9% of the time! (btw... about 99% of THAT time I am failing miserably) But I am so frustrated at ... the medical system... the government ... people who just dont get it... my washing machine ... my dishes piling up at the sink ... the weather ... my back ... the weather (I live in Manitoba and of late our weather REALLY sucks so it is deserving to be railed at AT LEAST twice!) ...  i am just in a mood I know and I have to get out of it. Part of it IS due to something we learned on Friday. Sam's ped., DR. Goldberg, called on Friday to get back to us (on a phone call from over a week ago) and was fabulous at setting up a lab appt for him. (Sam has been having tremors - as we call them A LOT. ALmost everyday.) Doc. wants to check his Val-ProicAcid levels to make sure everything is good... not too much or too little. The tremors could just be a 'getting used to the meds' side effect... or not. So Sam was to not take his meds this am and then go to school and straight to the hospital for tests then take his meds when he got back to school.... I forgot to remind him about it. SO at 7am.. "Sam take your pills..." and he did...sigh
Then later at 9.30 I remembered... and so he will have to do it tomorrow...not a big deal except that now the Wpg Doc. wont have the results... when we are there.
While I was on the phone with the Doc. I asked him about a neuropsychologist for Sam.A Neuropsychologist is (according to TBI LAW)Neuropsychologists are not medical doctors, but doctors of psychology whose field of study is concentrated on the brain and its functions. Neuropsychological testing is designed to determine the brain's capacity with respect to short and long term memory, abstract reasoning, attention, concentration, executive functioning, motor skills and other cognitive and psychological factors. By comparing the pattern of these results, against the patients pre-morbid capabilities, and correlating these results with the nature of the trauma suffered by the patient, neuropsychologists can, to a reasonable degree of certainty, opine that individuals without an acute diagnosis of brain injury, have permanent deficits as a result of brain trauma. 
When I went to the BI support group this month I was talking about feeling stressed and wondering why there is no help for us in the way of a proctor or respite...for when we need it... and the question was asked if Sam had seen a Neuropsych. And then the gasp of "why not!?' was amazing!  When I asked Wpg. Doc this he asked the same question... but he also told me that to see the doctor that is in Brandon (which is HALF the drive of a drive to Wpg) will charge at least $1200.00 for the first session! HOLY!  He suggested that when we see him on Wed that we will discuss other options... which will be in Wpg... but we can drive to Wpg a heck of a lot of times for the first $1200... sigh... another one of these things that have blind sided us!  

WOW!

The Facebook group that I created Canadians with Traumatic Brain Injuries just made the 100 members milestone!! I put a call out this week to get to this number and this morning when I was on FB I had a pleasant surprise! ONE HUNDRED members!! YAY! I am still encouraging please to join and invite friends since next month is Brain Injury Awareness month and we need to get more awareness and education out there about this! I keep thinking of that old Pert (I think it was Pert) shampoo commercial... She told 3 friends and they told 3 friends and they told 3 friends...  So please look for it on FB, and ask to join. (not too impressed with the new version of groups on FB... I cannot invite ppl to join my group...)

I have been busy this week not only working with Dennis and sorting and doing cattle stuff during the day but I have been trying to get out emails & phone calls to radio stations, tv stations (both local AND the biggies-- CBC and CTV) the newspapers and friends and family about next Junes new 'duty' to educate people about BI's. So far one local newspaper here is going to do 'something' for BI Awareness in June, the local access12 have invited me to do a coffee chat with Jim Cockburn about our family's story and mine as a caregiver (that is May 31) and that 1hour episode will run 3times in June. I am speaking on June 3 to some nursing students at Assiniboine Community College about our story (I have yet tho to find someone to be my run thru sounding board on my presentation and I am less than a week away!!!! eeeek!). On Wed. next week we are in Winnipeg for an appointment for Sam we will be stopping in Manitoba Brain Injury Association (MBIA) to show my idea for BI awareness 'pins'. ON their website there is an oak sapling and I am making small oak leaves to wear.  (I had this idea last year and when the new daffodils for cancer came out this spring -- I thot-- WOW I was on to something!!  I found a great paper punch that not only cuts out the leaf but embosses the veins of the leaf too! Dennis and I are willing to make them and put out the initial cost of them so that they can get circulating -- even if it is just in Neepawa and area. (hey I gotta start somewhere!) I want to see if MBIA will want me to put out a jar for donations to go to them or just give them away.
I had a bit of an epiphany this morning as I made some... I had a few different shades of green and my thot was... put out the different shades for a couple of reasons:
1. it will be easier to buy packs of paper in different shades (and more cost effective then buying individual pieces)
2. every BI is different... they are all BI's but all have a different story to tell! Soooo if there are 3-4 different colours it is in step with the survivors and caregivers!

Of course my hubby had to be the first to wear a leaf and is wearing it proudly...

I told him he grabbed one that I was going to throw out because I had 'knicked' the one part of the leaf... his response was "its ok, my brain is broken and so is the leaf". Yesterday A few friends that own businesses in town said they would most definitely put a box of leaves in their business to help... they offered I never asked!! I was shocked and felt very grateful for them! I will keep y'all posted on what happens with the MBIA!  Please pray that they are as excited and open  to my idea!

Meet some Heroes

Jennifer


JerriLynn


Janet


Ginger


Broken Brilliant

Stand

Lately as I listen to my iPod, I have had a lot of songs really speak to me...
Quite a few of them are Rascal Flatt's songs... Something about this group and their songs really hit home and I am not ashamed to admit that some days they have tears rolling down my face no matter where I am.
This song is so much of what I feel like we are going thru here in our home these days. Not just on the TBI front but on a lot of personal family issues too.
I truly feel like it is Dennis and I against the rest of the world with all that happens in our house, because our family/friends either dont want to see what we are going thru because it is so hard to deal with or they just dont care. Either way, Dennis and I will continue to 'Stand'  thru it all and where ever it is that God is taking us on this journey we will do it together... regardless of who is with us.

I have been trying hard the last few  months to get the word about BI's out there and I sometimes hit BIG.
BRICK.
WALLS.
But I start again and do what I can. I hope I can get people more motivated to learn more about brain injuries and the amazing stories that lots of survivors HAVE BEEN and ARE GOING thru! They are truly heroes in my eyes. The blogs,books and stories I read of survivors and caregivers makes me cry when I hear how they struggle with public perceptions and lack of help -- especially for survivors like Samuel and Dennis who 'look fine'. I know how they feel and what they are going through.
I do find tho that for me there is a difference that is unique -- where they have one person to look out for... and I have 3. I know I dont physically look after dad -- but I am the first 'go to' person for the care home to call. I am there visiting almost every Thursday and try to make the visit as cheery as possible and deal with whatever is necessary.
I also am aware that I dont have to 'look after' Dennis but we do have some issues that I struggle with and have trouble talking with him about because I am unsure of how to deal with it.
WIth Sam I am the first 'go to' person also and I have some problems with some of the stuff and cant go to Dennis because it is too much like his own issues and I cant always deal with 2 of them at the same time...
So I listen to my music...
cry...
and write on here and the odd time I post it...
Other times I just put on my big gurl panties and get thru it...

"Stand"

By Rascal Flatts

You feel like a candle in a hurricane

Just like a picture with a broken frame

Alone and helpless

Like you've lost your fight

But you'll be alright, you'll be alright

[Chorus:]

Cause when push comes to shove

You taste what you're made of

You might bend, till you break

Cause its all you can take

On your knees you look up

Decide you've had enough

You get mad you get strong

Wipe your hands shake it off

Then you Stand, Then you stand

Life's like a novel

With the end ripped out

The edge of a canyon

With only one way down

Take what you're given before its gone

Start holding on, keep holding on

Cause when push comes to shove

You taste what you're made of

You might bend till you break

Cause it's all you can take

On your knees you look up

Decide you've had enough

You get mad, you get strong

Wipe your hands, shake it off

Then you stand, then you stand

Everytime you get up

And get back in the race

One more small piece of you

Starts to fall into place

Oh