Thursday, June 30, 2011

Land of Confusion...

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



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...

Monday, June 27, 2011

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! 

Sunday, June 26, 2011

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.

Thursday, June 23, 2011

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

Tuesday, June 21, 2011

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.

Tuesday, June 14, 2011

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.

Saturday, June 11, 2011

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.

Saturday, June 4, 2011


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.

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.


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.