Friday November 27, 2009

Hello everyone,

I have been waiting on edge to get confirmation of our health ministry's approval for Chris' stay for another 3 months based on all the success we have had. All day I have been on the phone with the Lawyer and the ministry office. All the paper work had to be sent twice as the ministry could not find or did not get it. With panic running wild the letter from Chris' neurologist in Surrey was sent direct this afternoon only to be told she could not or does not make the decision on the extension. Just before leaving Chris' room this afternoon I got word from the lawyer's office who have been doing all the leg work at home while I am in Ponoka, that the ministry was only going to extend the stay for six weeks??????
The only explanation we have until a letter is sent, is that there must be a place in BC where he should be able to get the same treatment!!!!!!!!!!!!!!! What a screwed up system.

This is the same government that would not, could not place Chris anywhere to get rehab last year. Upon applying for support to go to Ponoka I was then told I would have to write them and explain why I wanted to go to Ponoka? Right hand doesn't know what the left hand is doing.

We have worked our butts off for eight months now, flying back and forth every week to work extra with Chris to push the limits in rehab and always thinking wouldn't it be wonderful to be able to stay home and work with him around family and friends. Ponoka has provided what no other facility could provide and allow me to continue with therapies and exercise even after hours. All under one roof with an amazing staff. Even with the gains of the last six weeks just when the tide changed and rehab is becoming more intense, we are shot down and some government employee who has no experience in rehab or injuries of this magnetude or even what is available in BC, and they are going to make a life changing decision with no knowledge to what this course of action is going to remove from someone who has worked against all odds over the last two years just to get to these baby steps of success.

At this time I would like each and every one of you to write to your MLA, MP and any other agency you think could make a difference. We were blindsided once with the car accident, a second time when it came time for therapy at home (none exists) Begging every step of the way just for the right to fight for life and the freedom to work at rehab which we have done ourselves and with the staff at Ponoka. I have to say I am in shock and still reeling in the wake of this off the cuff decision.
To be told that such a place exists in BC even though more BC patients have arrived over the last couple of months, I hope to find that they have built a new facility and staffed it with neuro-trained  Physio, Ot, Rec, Speech therapist and not the what was there when I left. I hope it is a training hospital that specializes in brain injury and some of the most forward think doctors working at it. Somehow I do not think I will find this.
A time has to come when all the craziness and bullshit stops and we start thinking about the injured and make informed decisions that are in their best interest no matter where that might be.

Shame on a government that can ship its residents abroad for therapy because they will not build and staff with properly trained professionals. They would rather produce smoke and mirrors and hope the individual will get tired of fighting and go away quietly.

We should all be scared and concerned for ourselves, asking can we trust a government when they control the: insurance company, medical coverage, rehab centers(or lack of), limits in court, funding for home care, access to money for rehab from insurance until they stretch the wait out over four or five years. Tell me the truth is it any wonder why people loose it.

What has happened to honesty and caring, everyone living in this Province and in Canada for that matter should remember this could happen to you or your family member. Speak up now before it's too late. I always thought that in a crisis, in a time of need or during a time of desperation there would be help, man was I wrong.
If they put as much energy into helping us with housing and home care Chris would be out of the system and home. They would never have to deal with this again, but government can't let go.

Sorry for rambling and carrying on but my god when will they just let us live and get on with our lives.

Kevin

Thursday Still Waiting

Hello,
I know two days in a row your thinking whats he doing??

Well a little more to tell, some of the equipment is being put together for Chris. It happens a little bit each day. Excellent pool session and tilt table that followed right behind today. Very productive and we had a video made of the session by the resident video guy here of todays therapy. When I get it I will post some of it.
All the work has created sore spots on Chris' ankle so to lesson the pressure Chris had some injections today to loosen the muscle in the ankle so the feet can be streched without being strained.
It all went great, very busy and tiring day today. We have finished all of our submissions and now wait on pins and needles for a confirmation from BC Health for the approval for the extension. If they keep it up they may have to look after me as well (just kidding).
Add more tomorrow,
Thank you,
Kevin

Mid week Update

Hello and welcome,
We are nearing the end of November and are wrapped up in the process of extensions again. I apologize to those who check every day and found no update for a few days.
I have been trying to get all the paper work and pieces together for a month now so things would not be a confusion and endless rush to the deadline. But as usual the people that require all of this and those who can help don't unless pushed constantly.

Chris has been showing great signs after all the work and prodding by us and the new Physio therapist to take part in exercises that show his ability to hear and make decisions.
The things that most interest him are the questions and topics that are tied to his daily environment or memories of family and things that are dear and near to him including questions of medical nature and anatomy.
There have been the doubters and the odds against this happening were overwhelming so their disbelief is somewhat understandable. But in preparing the paper work that will be the foundation for his staying another term even those people have conceded that things do happen without reason or rhyme.
Chris is getting up to 85 % and higher on good days and is doing 50% consistently even on bad days and this is with the therapists and I changing positions so as not to influence his movements. On the good days his movements can be strong and direct others it takes some pushing to follow through.
Everyone has noticed true to Chris' nature that if something bores him or he loses interest, he will not take part until the exercise or activity changes.
I cannot begin to thank or praise the therapists that have taken to Chris and want to see a change as bad as I do. They really have been relentless and even when I get down or worn out they keep on going and pushing and coaxing for the answers. The support, caring and trust shown by the therapists, nurses, aides and the doctors has been unbelievable and is something you can never repay just be eternally grateful for all their help and understanding. I still can't believe that we can't build a facility even close to what they have here in Ponoka at home.

The sad part in all of this is there is a standard in testing for rehab that really applies to those who can move and take part in therapy as willing participants, and most medical facilities as well as heath authorities use this scale to test if someone should get more help, funding or consideration.
In the case of a severe injury slow and persistent should be the order of the day, but because all the little things that happen ever so slowly do not not count or matter, you do not measure up according to this scale and you don't qualify for additional help.
I see it as way to justify not spending the money even though we are talking about a quality of life not a sporting event.
I suppose that until these people have been brought down as low as you can go, and then experience the little things that happen miraculously on a daily basis as they build and struggle each and every day to gain back control or at least to meaningfully take part in a world they use to be a vibrant part of.
It is important to remind these people that all lives are precious and need every chance to work their way back into it no matter how little or how slow progress is.
It is these very people that will advocate saving a life at all cost because it is a measurable result.
But if that life cannot respond to take part in an testing situation they devise, then that life is deemed a failure and is expected to go quietly to an extended care home and stay until their final days, because they do not meet a standard that is not reasonable in all cases and does not have the ability to see past this.

Chris' Physio and I were going to try to video some of the things that are happening in todays session.
Then she called and informed me that the centers video person will come and tape as we work with him today. Once I have it and figure how to transfer it to this site I will post it.
Upon Leaving i will leave a link to the story that broke a couple of days ago that do show you should never give up when you know its there.
Thanks everyone I can only say "Thank You"
Kevin

The link is as follows:   http://www.cnn.com/2009/HEALTH/11/24/coma.man.belgium/index.html

November 19, 2009

Hey everyone,
Things are still trucking along, therapy is in full throttle, some of the news-sessions/current events will be swapped for more Physio time.
Chris is tiring out earlier in the day with all the activity. We still get in the water each day and cycle legs and arms where ever time permit.
We are still in the process of gathering information for a possible extension.
Will keep you informed as things happen. OT is experimenting with buttons to see if Chris can communicate and turn off/on things with them. This is still in the begining stages but looks very promising.
Really tired tonight so signing out and getting some sleep before tomorrow mornings pool time.
Talk soon bte for now.
Kevin

Mid-Novemberber Update

Hello again,

Very slow climb back from the two week set back we had with the feeding tube having to be replaced.
But having put that behind us and with great success in adapting to the changes we are ready to start fighting again.
Therapy has ramped up again and Chris is starting to respond to the challenge. Last week with the holiday mid-week kinda put a wrench into the flow. But Shelley, Kylan and Gwen traveled back with me and were there through the week to help cheer Chris on and push a little harder.
Hopefully we going to be looking at an extension at the Halvar Jonson Center. Some weeks ago with all the positive improvements in his workouts I started the ball rolling and have been gathering info and people with support to take another run at the process. The process takes it toll I wish it was once a year and not every three months, seems like we just get going and have to start all over again.
Remind me later when I have time to look into changing this!!!

For all of you who read this blog and have contacts who would support or assist, with experience or financially the setting up of a center here for people in the same situation that have no where to go and can not get the help they need. Please forward the info to me as I have started the beginings of looking into the possibility of setting up such a place.
Will update as therapy happens or any more news on Chris and his progress.
Thank you again for all your support.
Kevin

Post Halloween update

Hello everyone,
Not a lot has been happening the last 10 days, with not being able to use the pool, Chris's tube replacement etc. So we used some of that time with extra physio- and with the cycle. Everything seems to be going great with the replacement tube that was put in a Red Deer, no complications and Christopher has been tolerating and doing great. We are back in the pool this week full-time and enjoying every minute of it.
I am just now starting the process for the possibility of an extension in Ponoka. Therapy is going great his reactions to things still very exciting.
We are continuing our endeavor to get the housing situation just right, with time always knocking at the door pressure from every direction seems to build and build. You would think with all that has transpired things would eventually start coming together. The paperwork with the government and for assistance in caregiving is still dragging on and on and on. What can you do nose to the grind stone, hope I can still breathe when this all comes together.
For those who didn't know, Chris just had his birthday on Sunday, November 1 and doesn't look a day older. Maybe even looking better with all the exercise!!

Like I said earlier it has been a fairly slow week nothing really exciting to report other than that we are still moving forward so we will keep you updated as things progress.

Talk to you soon and thank you,

Kevin

Happy birthday Christopher

Hello everyone,

Happy Birthday Christopher, its Chris's birthday today.
Thank you to all who have sent birthday well wishs for Chris I will be sure to relay them to him. Hopefully by next year we will be all set up at home and can host a party!
Last week was a slow uninspiring week as the pool was canceled all week due to the change in his feeding tube and his getting use to it. It has turned out alright as he has had no difficulty in dealing with the new system. It will be great to get back at it this week , I do notice the change in him when we do not get to the pool.
Physio has been great helping fill the open times and OT in fitting new items to the chair to try out. We escalated the time on the bike as well to make up short fall in excercise.
Never a dull moment, and when there is, we watch a hockey game!
Not allot to report this last week as it was kind of a transitional one so we wait for next week and all it will bring?
Talk soon Thank again,
Kevin

Midday Friday 23, Oct

Hello all,

Sorry to say that today also will be a write off as far as getting up and taking part in any programs.
The Doctor felt that we should move more slowly with the transition of the feeding tube so our swim was cancelled this morning and now the rest of the Physio and such will not take place, bummer cause I can tell when Chris gets frustrated and wants to move. But to be safe on the side of caution and give the new tube a chance to get set in place and for Chris to deal with the change in feeding, we will just remain in bed with no activity today.
So, not allot to tell for the end of the week.
We will start fresh next week.
Bye for now,
Kevin

Friday Morning

Good morning everyone,

We had quite the trip to the Red Deer Hospital, even with the best laid plans things seem to always get messed up somehow. We had a good trip down to the hospital and arrived with high expectations only to find the plans that had been made were not in place at this end. We did get a new feeding tube put in, a different kind of feeding tube. It works a little different than the one he had in place but I won't get into details. We are trying it and hopefully Chris will tolerate the change and we will then be moving a step closer to our goal.

Ambulance service down was great no surprises, half hour trip to Red Deer in and ready to go.
But when we were ready to go we had to wait 2 1/2 hours for the transfer ambulance to arrive.

I gave the crew instructions on Chris for positioning, keeping him seated and upright, as well as his coughing spells and it was nothing to be alarmed about. Told them he just needed to sit up and cough it out, at this point one attendant asked if any nurses going to ride with them.
I explained that this would be the fourth trip with their service it only lasted a half hour and it was no big deal. As we turned to leave he proceeded to drop the bed leaving Chris in a flat position I quickly reminded him about keeping him seated.
Helped them out to the ambulance then went to get in the car to follow as I pulled around they had already left. By the time I got about halfway back to Ponoka I received a phone call which seemed to be very confusing. The ambulance had been turned back and ended up at the emergency department in Red Deer. So I turned around and headed back to Red Deer to the emergency department wondering what could be the problem. Just prior to arriving back at the hospital I received another phone call to tell me that the ambulance was on its way back to Ponoka with Christopher. I turned around and headed to Ponoka arriving back at four o'clock in the afternoon only to find no Christopher or ambulance when I got there.
Went down the hall looking for them and down the hallway came the stretcher from the ambulance with Chris tipping over the edge with arm and head hanging down.
I asked them if they headed to Edmonton in the three hours since they left Red Deer.
I was told that Christopher was gagging and choking and the same fellow that I talked to at the hospital decided that they needed to go to emergency that he couldn't handle it. I asked the same attendant why Christopher was hanging over the edge of the stretcher with his head hanging down to the side and red in the face. He proceeded to tell me that that's the way he wanted to sit that he in fact tried to straighten his head but he just wanted to put it back off the bed and let it hang over the edge. I so wanted to take that attendant and twist him around the end of the bed to see if that's how he liked to stand,
I can't even begin to tell the stupidity of this whole trip and at this ambulance crew.

All in all it was a 7 1/2 hour trip for a 15 minute procedure and a completely exhausting day. Once Chris was comfortable he seemed to fall asleep right away and was tolerating the new tube and feed well into the evening. I will see how overnight went this morning, and if all was well during the night we will be heading to the pool at 930.
I will update later and hopefully I will have all kinds of good things to tell from today.
Thanks for checking in,

Kevin

Trying to keep up!!

Hey Everyone,

Short update, Chris has had a very good Monday and Tuesday being alert and bright during his Physio sessions. Tuesday his stomach tube was sticking shut not allowing food or meds to travel through, it has opened enough to get today's in and he is scheduled to go to Red Deer tomorrow (Thursday) to have it replaced with a larger one that will be easier to upkeep and more flexible in its use.
It will be an extremely early day and a long day for the trip to Red Deer and the wait in the out patient clinic to get it replaced. I will travel with him there and back and will update how the procedure goes when we get back.
Been working with the physio therapist and the OT as they have brought in one of the equipment suppliers to help in tweaking Chris's equipment to make his sessions more productive.
Chris was extremely tired today and slept most of it away. Little more congestion this week as we have had a couple less pool times this week and will miss tomorrow's as well because we will be in Red Deer.
Update more tomorrow,
Kevin

Weekend Update

Chris has been doing great the last few days, today pretty tired but still gave his all.
The bike issue will be resolved with them bringing a new one in the way it should have been in the first place.
The speech therapist is back from holidays and very excited to hear of the changes in Chris she will again start working with him tomorrow in conjunction with other therapists.
OT has built a sling of sorts to give Chris the ability to move his arm unrestricted and improve his movement. Got a feeling there is lots more good news on the way stay tuned. This is so exciting to hear after a long, long, long walk down this road. Every minute has been worth it.
Thank All so much for making the fund raiser such a success.
Eternally grateful,
Kevin
PS will post some new pictures shortly.

Mid-October

Hello everyone,
The fundraiser went well approx 225-260 attended, thank you so much to all who could attend. For all who could not attend, we appreciate the support and well wishes.

I have to also thank all of Chris's friends and family who gave their time and allot of work to make it all possible and such a success.

Chris is doing well we are trying to keep the cold bug away as some others here are coming down with colds. His bike finally arrived on Wednesday with missing pieces and support pieces of wrong size. We are awaiting call back from the importer as to what will be done.
He can continue to use it while we sort out the details.

Chris and I sat in recliners to watch the hockey game last night must have been tired as he fell asleep at the end of the second period. Bet he would love to be playing!

Back in the pool first thing in the morning, good wake up call as well as relaxing start to the day.

Again a heart felt "Thank you" to all of you.

Kevin

Pre fund raiser update

Hello everyone,

We are now entering the second part of the week and things are moving ahead extremely well all of the therapies taking hold and working out perfectly, Chris's new bike has arrived from Germany and will be delivered on Friday morning.

Heather Chris's physiotherapist has been working unrelentingly with Christopher and all of the benefits are starting to show not only is his recognition of the yes and no signs showing great progress but also recognition of the words placed in front of him.

I can't help but get him to kick the ball every time we are doing stretches it is so exciting to see, the physiotherapist is finding new ways to work out and to get Chris to react. It is exciting to see and the other therapists are getting excited as well and looking for new things.

They are now working on a system to relieve the weight of Chris's arm so that he can move and react quicker with his responses, it is an awesome time and has also been a long time. It also shows beyond doubt that work, work and more work does work.

I have told Chris about the fundraiser being held on Saturday and see the immediate reaction in his face I know he would love to be there but we are going to continue to make progress here every minute that we are allowed, you won't find us wasting a minute of this, especially knowing how precious every minute of rehab is.

The physiotherapist was so excited with Chris's ability to answer and be consistent that she asked one of the fellows from psychology to come down and watch and every question that was presented to Chris he was able to answer, remember these answers are not spontaneous it takes time for Chris to work out his responses and that's what's so special about what is going on right now is that the people working with him are willing to wait for those responses and see the differences happening.

Not too much is going on in the house finding it is proving to be very difficult but the search continues and it will happen.

This morning's swim was slow Chris was tired today as we had stayed up late watching the Canucks game last night.

Another full day tomorrow and Friday so bye for now.

Thank you all,

Kevin

End of September

Hello,
Updates are slow but positive. Chris is working hard with his new physio therapist, she doesn't let up nor give up.
Last week she got Chris to kick the ball while sitting on the edge of the table.
This week has been excellent for responding to questions, given time he has been able to direct his hand to select answers to things that are close to him.
Not so good at being able to rell the enviroment around him or where he is, but able to answer questions on family and things close to him.
Splinting and all therapies have moved up a notch making for a very tired guy at the end of the day. His new hand splint will be able to be adjusted to start putting a little stronger pull on his fingers to straighten them out. Leg splints have been adjusted to allow easier access and more comfort for longer wear and they keep his feet and legs straight while standing on the tilt up frame. Water therapy continues as usual great now for relaxing as three of them are at the end of the day.

September update

Hello again,

Well let me start this week out with lots of praise for the physiotherapists working with Chris, they have him stretching early in the mornings, as well they ensure that his legs splints go on regularly through the day. He has now been getting multiple trips on the tilt table through the week lots of sit up and stretching exercises.

Wednesday morning when I arrived he was already up on the table already halfway through his session when therapists told him to let me know what happened this morning. After a minute or two they indulged me and told me that he had actually started to kick a ball with one leg while sitting on the table. Absolutely amazing how something so simple can bring a tear to your eyes, and make the hair on your neck stand up.

He was pretty tired this afternoon and ended his day with a massage. I also found out today from the distributor for the bicycle that was supposed to be here yesterday or today, he just found out there's been a two-week delay in delivery so we're trying to get one of the distributors in Edmonton to lend us one until Chris's arrives, the wait has been very frustrating, let you know once we get it.

On the home front we've looked at several more homes, it has come down to three or four possibilities, will be looking at them again this weekend and hopefully making a decision by Sunday.

I was asked to put in a reminder about the fundraiser which is October 10 at Sunbury Hall on Dunlop Road in Delta. If anyone has any questions or ideas they can contact Shelley or respond with a question through the blog site to me and I will forward it on to Shelley to look after or just e-mail back if I can answer.

Thank you,

Kevin

Mid-September update

Hello everyone, Chris is back underway with this programs at the Halvar Jonson center. It took a while but we now have all of his new programs setback in order and made sure that we had access to the pool and other therapies. His pool times have changed quite a bit through the week and require a little bit more flexibility of my arrival and departure times, his new therapies are more intense than before and shows signs of his reacting to them, he's much more tired and in need of sleep by the time late afternoon comes around.
We've got a good running start at most of the applications needed to be put in place, we do not yet have answers or acknowledgments that we were successful.
I await day by day for the answer to these questions.
His bike is being shipped from Germany and left 10 days ago and we still have another seven to go until delivery, this has us chomping at the bit to get back underway.

Sorry for the delay on the blog updates I've been very very busy and along with that very tired, seems impossible to stay awake at night to update even though I know a lot of you check daily, thank you for understanding.

Chris's workouts are pretty intense and keep him wrapped up most of the day, he doses and falls into deep sleeps in the afternoon and early evening this is a good thing.

Shelley and the kids were here last weekend to see him on Saturday and Sunday morning which I'm sure was very uplifting for him to hear Gwen, Kylan and Shelley.

Will update regularly this week, as I am now staying in Ponoka close to the center this enables me to get there earlier and stay later without running myself into the ground.

Will immediately add to the blog any good news or updates as it happens through the day and will faithfully try to updated each evening this week while here.

Thanks again for checking caring talk to you soon.

Kevin

The extended stay

Hello everyone,

Well after a week away and total chaos dealing with extending Chris's stay in Ponoka, I spent many hours on the phone trying to get funding approval. So many hoops and hurtles to jump through at one time it would appear to be near impossible. Then I got a boost and some much needed help from some wonderful doctors and after many more hours of preparation funding was approved to extent Chris's stay.

Being back this week has been a trying one as we were not sure how long the Halvar Jonson Center would be willing to give us to continue. As of Wednesday we have come to an agreement with the Centennial center in Ponoka to extent Chris to up to three months to continue therapy at the great care that he receives here.

The cycle that was showing so much promise and an integral part of Chris' workout had to be returned on September 2nd. Something went wrong with the order process and it never arrived. We've had to order another one directly form Germany and wait for 15 days for it to arrive.

We will just have to keep extra busy with other activities until that happens. As his new term starts all of the therapies have had to realign and change time so it's a little confusing these first few days as everything gets put back in place to best suit Chris. While I was home last week I was able to take care of some other outstanding issues for equipment with ICBC. So the next couple of weeks will be spent trying to find the right property that will suit our needs for Chris, as most of the properties or houses we have seen the past did not quite meet the needs of alterations that will be acquired. So we will start in earnest to locate a suitable property immediately.

It would seem the roller coaster never stops, just figured as time went on the hills would get a little smaller but we seem to be riding a big one. Will update again after today's therapy and hopefully put on a picture or two and maybe a video.

Thank you all for checking in, talk to you soon.
Kevin

Fund Raiser Update

Hey everyone,

I will be away this week from Alberta but Shelley will be there with the kids I will update as she fills me in each day.

Jay has forwarded me the information on the up coming fundraiser it is as follows:

Love ya Bigs Party - Barbecue


Price $25 Burger/beer/salads & $10 Raffle Prize Draw
Start Time: Saturday, October 10, 2009 at 3:00pm
End Time: Sunday, October 11, 2009 at 12:00am
Location: Sunbury Hall, North Delta
Street: 10409 Dunlop Road
Phone: 604-787-7434 SHELLEY

A good times BBQ all day full of family, friends, food, stories and a good ol' fashion sports day. Raffle Prize Draw, 50/50, Dunk-tank, Bocci, Hockey Shots on BEAR and whatever else we can bet on....

To see more details and RSVP, follow the link below:http://www.facebook.com/n/?event.php&eid=120044011615&mid=fbc6c6G24c7766fG338faf6G7

You can also order raffle tickets directly from Shelley for $10.00 each

Last week we were able to get Chris to slow down and speed the cycle up when asked, the OT and some nursing have said this was the most productive month of all, looking at all the controversy and doubt about Chris' care upon returning home, I will ask to see if we would be allowed to keep working with what we have in place for a little while longer?

Thank you for your support,

Kevin

Soon Ending

Good Morning,

Last week full of ups and downs ups were Chris pedaling the bike on his own regularly, arm work doing about 60 % on his own very good considering the spasms in the right arm.
Water treatment great relaxation that is always good even on a bad day.

The down side is it will all end August 31st as this is the day they have scheduled Chris' treatment to end here thinking it will be carried forward at home.
Truth is nothing that was supposed to be in place, is even close, as the lawyer seems to find every excuse in the book to drag out applications and dealings with the agencies that just cant see past the end of their noses.
I received a call from the social worker from Surrey to say they got word from Ponoka that Chris will be coming home. Next was the question, what will we be doing as they don't want him in the hospital, I explained that we have been trying for the last eight months to get approval for help at home as we have a plan to get him out, but all of this to no avail.
It would seem Health officials (and I use that term very loosely) seem to think that as long as ICBC is in the picture they will not accept any applications or allow access to any programs.as ICBC should pay.
The money left in the ICBC isn't enough to pay for half the equipment needed. So Fraser health has said he must go long term facility or we will be charged $900 a day for his care.
If we agree to go to long term we will lose any rehab money from ICBC and any rehab that would be provided by Fraser health which we already know is non existent.
I can not figure out whether the people who are running things are just that stupid, to think they are saving money but forcing situations they have created rather than giving help with getting people out of their care and home with family where real healing and therapies can take place by those who know what they are doing.
If anyone has contacts to media or news I would love at this point to tell the whole story not just the accident.
Thanks for the support it is what keeps me sane.
Kevin

Cycle news update

Hello,

On Tuesday morning the cycling was done with the OT and Chris wasn't taking part, he let the computer cycle for him, not sure what was happening, he did a 20 minute leg and 15 minute arm work out after dinner on Tuesday for me.

Wednesday was an up and down day, started with Chris being sick in the morning and blood tests taken, so no swimming. All the tests and checks were negative no one knows why he got sick???
As the day progressed he seemed to feel better actually got on the cycle machine for a 20 minute workout. While I was checking to see if the pool was available for an afternoon swim so we could get one in after the time speech therapy and other stuff was finished, but his massage appointment was to close and we couldn't fit it in.
We left him pretty relaxed, so hopefully he would get a good night sleep, we will be in the water this morning and a cycle workout before lunch time.
Trying to upload a video of Chris on the cycle hopefully it works if not I will post some pictures this afternoon.
Kevin

Mid August update

Hello everyone,

Chris was up and on the cycle again for 20 minutes on Friday and was able to keep going. Pretty exhausted so arms only about 10 minutes. Sunday U Larry, U Robert and A Helen will be spending the afternoon with him, going for a walk and talking.
I am driving back home today and will be flying back to Ponoka on Tuesday to continue pool and cycle therapy as well as his usual therapies, will have more updates on progress at that time.

Still struggling with government programs or lack of as well as the ability to come to grips with appropriate house and area! These all take time away from the therapy he really needs it is very frustrating having to make that choice between therapy everyday or taking days to push and argue over things that should just be there when needed.

All the time and research put in to locating equipment and uncovering things that work is that I get to apply them in a way that Chris can benefit as well I can share with so many people in need.
I hope the facility in Ponoka will invest in some of these cycles for the many people they work with everyday.
Talk again on Tuesday,
Thank you,
Kevin

Some Great News 08.06.2009

Hey everyone,

Same things ongoing, progress still moving forward, Chris is still getting in the water everyday with the stretching and motion movements in the water keeping him quite limber and mobile.

Since removing the drugs over the last two weeks alot of movement and little things that he used to do have started to come back, making the water sessions even more rewarding.
Today Uncle Larry, Emma and I had Chris in the pool stretching him then letting him relax, other than getting rid of alot of phlegm he had quite a good day.
As I said a few days ago we were waiting for the machine I found to to arrive, it is amotorized sensing leg and arm machine fully computerized. It arrived yesterday afternoon.

We got it going today with a few of the resident OT's and Physiotherapist's present to see how it worked and what it could do. Christopher was very relaxed almost to the point that I thought we may have to wait till later. But after fitting him into the leg supports and everyone happy with the way things were going I turn it on releasing the peddles, to our amazment they started to turn even though the motor had not been turned on.
The computer started tracking the movement and showed he was doing the peddaling himself with no assistance after checking all the controls, the OT and I looked at each other, he went to get the head nurse and the doctor I ran for the camera, actually I sent Emma out to get it as I was still holding him and encouaging him on.
Everyone looked on in disbelief the doctor had to try the controls and brakes to make sure we weren't pulling a fast one. I had to stop him after 22 minutes of pedaling so we could try the arms. Chris then did another fifteen minutes of arm cycling even though the machine kicked in a couple of times to assist when he got a muscle spasm.
Very exciting and encouraging day, left there on pins and needles.
Update tomorrow after our pool and another bout on the machine.
Bye for now
Kevin

Overdue update

Hello everyone,

It has been a fairly busy time in Ponoka, even though holidays and lack of therapy has been the order of the day over the summer. All the drugs that have been tested and tried have had a varying degree of success some not so well and others a glimmer of hope.

We are now in the process of trying the last of the drugs as our time winds down. There's not been an astonishing change but all the same Chris's physical and mental presents is very strongly felt and acknowledged every day.

It is our hope and plan that in the weeks and months to come the rehabilitation program that we have designed for Chris will prove to be very successful. During this time we will be looking for friends and family and others to help with the physical needs and therapies that will be a daily routine.

Our house hunting for suitable house and rehab Center has been very difficult, we have not found the perfect place nor have we been able to secure the proper help and financial support that really is necessary to move ahead successfully.

We are awaiting approval for home care support and hopefully within the next few weeks will be in a position to make an offer and secure the proper housing and facilities that will be required. Having said that, the places we have looked at will require some extensive renovations and alterations to accommodate the exercise equipment and all of Chris's needs. I would very much appreciate any and all support and help with this time comes.

The logistics of putting all this together has been quite trying, as the travel back and forth to Ponoka every week to spend those days with Chris during therapy have taken their toll and have not allowed for a lot of free time to look and plan for the immediate. Paperwork, research, medical articles and new technology, it takes an endless supply of time and consent ration to search for new research and medical therapies.

This week of August 4 we will be trying one more new drug and retrying one of the previous drugs, after that we are scheduled for a departure from the Centennial center the week of August 24, the immediate placement to where he will be is still in the air, as a lot of the government programs and funding are still being fumbled around and pushed from department to department. We do plan on finishing up the applications and having it presented by the end of this week.

On the positive side these past few weeks have been moving ahead with new things being noticed some of this has stemmed from the visiting of Christopher's niece and nephew they seem to be able to stir and cause sensations out of nowhere. We hope that having Chris back close to home near family and friends familiar voices and a structured rehabilitation program will build and build driving him forward to more successful steps. My time in the pool with Christopher has been unbelievable and Kylan has been coming into the pool with me and helping stretch and massage Christopher's feet and toes, Shelley and Uncle Larry also took turns in the pool helping out, I believe that Chris senses this very much, the aqua therapy without a doubt has been the most forward moving therapy to be done.

I have located a new piece of equipment that will allow Chris to exercise on a regular basis to increase his cardiovascular and circulation something that has been missing for all of these months. I anticipate some negativity in getting funding for this, so I have arranged for a machine to be delivered to the Centennial center so that Christopher may become familiar it and test it out with the doctors, physiotherapists and OT are present. Providing a hands-on proof that this machine will be of great benefit to him. Also providing the center the chance to try out a new piece of equipment.

How the machine responds and Chris responds to it will be posted once machine has been delivered and tried.

Christopher's uncle Larry has spent the past few weeks with me in Ponoka and weekends with Chris providing a much-needed change in conversation and stimulation thank you very much Larry. I know by way of phone calls and e-mails that many of you would like to be here if you could to encourage Chris. I look forward to seeing all of you and discussing Chris's therapies and how you may help out once we get back home.

Thank you all so much for checking caring and keeping in touch, I know I have breaks in updating the blog, sometimes, time just seems to go on and on then days turn into weeks. I will try to stay on top of this over the next few weeks. I may have to enlist a typist or someone that can that can type with more than two fingers.

Thank you for your patience,

Kevin

Overdue update for Christopher

Hello again everyone,

Just to let you know things are still moving forward at the Halvar Johnson Center. Things have been very slow through summer as therapist go on holiday no replacements are brought in for most therapies they just get canceled making for a very long day.

The pool shutdown on July 1 for repairs and maintenance leaving us without any aqua therapy and a lot of other therapies also out of commission. We did the best we could over the two weeks, we had changes to the drugs and the amounts used. Didn't seem to help much at all. We are now embarking on taking Chris off his current meds. Then trying a couple new ones. Our discussions regarding treatment have led us to a an expected departure date sometime during the week of August 24, Chris will be brought back to BC and hopefully the therapists that we needed to locate will be in place by that time, as well, the extended care help that we've been asking for and trying to get in order.

This week has been the return to the pool, which has been great for Christopher. Kylan, Gwen and Shelley all came back to visit Chris this week. While here Kylan has been coming in the pool every day with me to help stretch Christopher and limber him up, Gwen and Shelley get a birds eye view from the deck. The days are long, warm and with therapists away on holidays sometimes seem unfulfilled, but just knowing that the things we can do and care that's being given is great, we can keep building from there.

Most of the equipment and the things that we will be needed at home we have located or the processing of getting, the doctors here will approve or recommend them for use in Chris's rehab. Hopefully ending a trail of paper crap, red tape and the needless hiring of extra people for no real purpose, so they can look at the equipment for ICBC and tell them yes or no, they are needed or not, most of them don't understand the use of allot of the new equipment. Watching Christopher's medical money being spent pointlessly is very irritating.

We are also in the process now of setting up Chris's home care plan and applying to the government for assistance with his care, will be updating the site again tomorrow once we finish an early-morning pool session and have a little more to add thanks for checking.

Kevin

New site to check out when you have time

This is a great semi private place that is driven by volunteers.

www.arbi.ca/

www.arbi.ca/kylan.html

And the story is on the right side at the botttom if this link does not work.
Kevin

Ponoka Stampede Starts today

Hello everyone,



Ponoka stampede starts today so town is busy and trailers and rodeo people are everywhere.



Up date from the weekend Chris had a coughing spell on the weekend and some how got a hold of his feeding tube and pulled it out 6 inches. The tube was reinserted and liquids were pumped in to re-hydrate him then food started on Tuesday. The tube was on its last legs anyway and was due for replacement the not so good part was the fact that he may have got Pneumonia from aspiration due to the tube coming dislodged, he is being treated for the pneumonia and well on his way to recovering.



Today I accompanied him to Red Dear regional where the staff although they lost all the paper work and didn't know who he was and had no record of him coming, they did rectify the situation after an hour or so and we went ahead and had the tube replaced by early afternoon. It was an early start 5am from Edmonton to Ponoka and what was a 7am departure by ambulance turned into 740am departure and things just moved along slowly all day. Staff at the hospital were good and very helpful (even if they had no idea he was coming).
Our return to Ponoka just in time to get late lunch and early dinner and Chris slept for most of the afternoon combination of drugs given at the hospital and all the travel involved in today's ventures. I left him sound asleep at 8 Pm this evening. Pool sessions have not been able to go ahead and I just learned that the pool will be closed for 2 weeks starting July 1st for maintenance, so no water until mid July AAAAHHHHGGG.
Good time now for anybody that was or is going to visit fairly quiet at the hospital and the weather has been great.
Up date with more tomorrow.
Kevin

End of the week

While another week has passed and without the pool the previous week you could hear and feel the congestion Chris had built up. We got in the pool every day this week except for Friday as I have caught a head cold and didn't want to spread it to him.
Kylan was able to come in the water each day with us, not sure it helped Chris physically but emotionally it was great.
I will miss Monday and maybe Tuesday depending on this cold.
New drugs have been started and are being manipulated to see what can be stirred up.
I believe we will be approved till mid August at which time I have to try to have a place for Chris to come home to. I am out looking every chance I get, thank you to those of you have forwarded places you thought might work for now it still a guessing game. It will have to be a rancher or large one floor both above and below and have some acreage with it so as to expand in the future.
That all for now.
Kevin

Mid June update

Hi there,

Its June 17th today we are just heading down to see Chris this morning. Shelley, Kylan, Gwen and I have been here since Monday and celebrated Shell's birthday with Chris.
I think he was awfully happy to see familiar faces after being away for a week and no pool sessions while I was gone.
Monday we were in the pool in the afternoon, right after Physio. Kylan wanted to get in and help so bad, he did help from the pool edge with Mom and sis. When Chris and I finished Kylan got to swim for a while with me. Chris was pretty warn out by the time we got back to his room for dinner.
Tuesday we had an early pool session at 930 which was great, Kylan also got to swim whle mom an and Gwen watched!
Physio was pretty good as well lots of movement with these new drugs and seems alot stronger, we will be in the pool again at 1000 am and he has OT and Physio in the afternoon. Weather is good so walks will fill inthe down time.
Update later today when we get back talk soon bye for now.
Kevin

The first few days of June 2009

The first few days of June have been quite trying with staff being away and on holidays and unfamiliar faces, some of the physio and other therapies have time off as summer approaches so a day doesn't seem to start or end regularly. We have been making it into the pool every day the swimming and relaxation is wonderful Chris really is responding to the stretching that happens in the water. Chris and I have managed to get down to the gym last couple of days prior to dinner and workout on the cycle machine although it's only for a few minutes at a time it does get his legs and shoulders and all of the joints moving which is something he needs much much more of. Something that we will be able to set up on a full-time basis at home, the OT is still working and doing stretching and checking Chris's overall mobility on a regular basis.
I have been talking with doctors the last few days the current drug that Chris is on has caused a couple more small seizures so the plan is to slowly take him off this drug and start him a new one in the next couple days, we've discussed the extension for Chris to to stay to try these drugs and along with that the application to the BC government for funding to cover the stay. Hopefully all will fall into place over the next week. I will be away for a few days next week working so the updates may take all a back seat until I get back will keep you updated as I will be talking with the nurses and staff on a daily basis. Over the past few weeks I have been looking at houses that will be appropriate to set up for Chris's long-term-care and full-time treatment. All of this must be in place very shortly, those of you who had offered to help earlier on during Chris's injury, I probably will be contacting before the end of next month all the help that was offered will be gratefully appreciated as it really is a much more than full-time job. As things transpire over the next couple of weeks I will post them here and keep you informed.
That's it for this Thursday I will update at the end of Friday when we have finished the therapies and our swim.

Thank you for your concern,
Kevin

Friday May 29, 2009

Hello again and on time,

It has been an eventful day, starting with Chris having his first seizure during the night although it was caught and recorded the reasons are still unclear but being looked into.
I will be taking Chris for a CT scan next week to rule out any problems and medication s are being reviewed to figure out what if any part they may have played.
As he was up most of the night and sleep deprived we opted out of the pool for a chance to gain more rest.
The rest of the day consisted some mild stretching and a couple long walks in the 26 degree temperature.
He will be watched very closely over the weekend and the plan will be to get him rested up and start fresh again on Monday.

We were hoping to be able to alter the house and make it satisfactory to meet Chris' needs.
This option is not going to be possible and therefore we must be prepared to move and alter a residence by the end of summer. This daunting task I had hoped would give more time but most of the trials we are doing here will be done by mid August if we are successful in obtaining all the rest of the approvals and hoop jumping that is required to stay the additional time. Hopefully it comes together as I feel it should.

If any one reading this blog has any suggestions as to fund-raisers or other means of raising funds Chris will be in need by the end of July as the ICBC funds can only be used for medical equipment and very specific alterations. Meaning we will have to cover most of the alterations and special needs ourselves. My pride has stopped me from posting anything to do with money or assistance. But we are left with no alternative as the government has a catch 22 scenario with the medical assistance, in that, as long as ICBC (a government controlled entity) has funds in Chris' name the Province will not grant him disability status enabling him to access funds for his basic needs (no money). Trouble is ICBC medical money will only be paid out for medical necessities as ICBC sees fit which are completely out of line with what Chris needs. All therapies and extras except for the water therapy at home have had to be paid personally.
I will be happy to follow up and explore any suggestions you have.

Thank you all for your time and concern,
Sincerely,
Kevin

Thursday, May 29, 2009

Hello everyone,

Yes I've managed to skip day again, during therapy we managed an hour and a half in the pool on Wednesday and it was great relaxation for Chris it seemed to loosen up all of the extra phlegm that he built up over the weekend.

The afternoon therapy went well and at the end we went outside for a long walk which was extremely warm and comfortable. After dinner on Wednesday we went down to the gymnasium where one of the nurses and his two sons both play guitar, they played music for all of the residents and people here, quite the change from the boring evenings. It was very warm so we only managed to stay for about a half hour. We missed the middle of the game while going outside for a walk, a very nice evening at 18°. We made it back inside to catch the tail end of the third period and watch the overtime, the whole evening Chris seemed to be wide awake and noticing things in a little bit more detail than usual, showing signs of very strong movements to the left side and more direction.

Tuesday, May 30 this morning started out wide awake and ready to go, we proceeded to head to the pool a little earlier that usual as the therapist was going to have extra people in the water during our session. We ended up doing a full hour session with the rec-therapist and stayed an additional half hour just relaxing to take it easy. We then ended up back having lunch and resting which then led into his physio-appointment they did quite a bit stretching and mobility, which really tired Chris out. Speech therapy didn't start till 330 they worked at swallowing with different liquids which he seemed to take to quite well by the end of this session he was pretty much sound asleep.

We then went outside into the sunshine for a predinner walk while he relaxed, did a little bit of suntanning and then back inside before dinner.

He's now sound asleep and it really were wiped out which makes me feel great, I do think it's doing him a world of good in the pool. I believe it provides the best simulation and the most noticeable difference.

Friday morning I will be meeting the OT therapist at the pool he has agreed to come and to the water and give it a try as well, so that will give us a pool session every day of the week if we are able to make use of it.

This has been the extremely tiring and exhausting week emotionally not knowing what the outcome in Alberta will be, hopefully by next week we will have a meeting and discuss all the possibilities that have not yet been tried.

This evening Thursday night I believe there's a tour of the Centennial Center by the Minister of health, it's a shame we couldn't have the Minister of health for British Columbia join him so he could see the work that is being done here. Maybe even see the need to have a facility in British Columbia so that we could be closer to home and family.

Goodbye and goodnight will update tomorrow thank you.

Kevin

Tuesday May 24, 2009

Thank you Helen for the update and spending the weekend with Chris. A change of voice and view is probably needed by now he hears me all to much sometimes I am sure.
Back swimming on Wednesday morning will update after the day is over bye for now.
Kevin

May 20, 2009 Wednesday

Hi everyone,
We were back in the pool today, which was a good thing as Chris was quite uptight and irritated for most of the morning. We stayed in for an hour and a half, it took the first hour just to get him to let go and relax, but it paid off later with some pretty sound sleep.
Then I found out his drugs had been accelerated and increased over the last two days, lots of weird changes some good some not.
Starting to question some of the things being done and not followed up the way I would like to see them done.
I am beginning to feel like a squeaky wheel that they would rather change than oil?

Found out our time here is being questioned everyday. Kind of like waiting to get fired from your job with nowhere to go. Sure is an uneasy and very uncomfortable day to day existence knowing time is winding down.
We are now waiting to see the outcome of the drugs that have been increased and sped up because of our time restriction here.
There is still a glimmer of hope for a partial extension, but it will take some negotiating and convincing of things that are yet to be tried.

Nothing makes you learn and research like necessity, and there is no shortage of that.
In fact without me having that intimate knowledge about the line of drugs commonly used or in fact not commonly used in treating the brain, makes you feel like your cramming for an exam.
If you don't understand what you are asking for or understand why things work the way they do nobody has the time to tell you as it is new to most of them as well. Remember most of the new research is done in the U.S.

We will be in the water tomorrow and hopefully he can relax as well as today, the water is a great release even if just to relax and let go of tension. Chris' aunt will be visiting him Friday and through the weekend, a change for him and break for me.(thank you Helen)

Stay tuned will keep you informed as things unfold.
Kevin

WEDNESDAY MAY 13, 2009

Hello,
Some trying days, lots of discussions about upcoming funding by BC for Chris to be able to stay another 90 days and if we will get it.
Alberta Government is thinking of canceling the out of province beds, but we have not heard anything about this yet just crossing our fingers and planning for positive outcome.
It really takes away from all the positive stuff going on and cant help but have a lingering feeling hanging in your head all day. We have the doctors support and we are trying to get in all the different trails we can in the short time left just in case.
The Docs have tried to be positive and they too have not written anything in stone. It may come down to the incoming doctor Dr. R to write and convince an already backward system in BC to allow another 3 months to really try what we came here for.
Seeing as how we have nothing even remotely close to this at home.

Anyway on to the positive, we started a new drug on Wednesday it will be a couple of days to see any results the first day was pretty tiring and laid back.

Our pool times have increased to Monday, Wednesday and Thursday and today I was able to convince them to open up a Tuesday session in the morning.

Mondays and Tuesdays I will have to take Chris in by myself and Wednesday and Thursday the Rec Therapist will assist with the time in the water. Kinda sucks with all these victories in the access to the water, is that if I am not here he won't get in at all. Just appreciate the ability to use it and make the most of it!
We are in the water first thing in the morning and several therapies will be going tomorrow. With the long weekend though we will not be able to use the pool again until Wednesday, but Shelley and the kids will be here with him over the weekend and into the start of next week so that will keep his moral up.

Monday May 11,2009

Hello,

Friday, we got in a short physio session and a walk as the other two therapies were cancelled.
The weekend was quiet one, one of the nurses on shift both days took Chris out for a walk as the weather here was pretty good all weekend.

Monday I got back at lunch, OT had him out this morning early and he had just finished lunch so he was at Physio, but as usual different people never pass on the info on splints and bracing so they were trying to get Chris up on the Tilt table but his frustration level was incredible.

When I got here he was in pain. After adjusting his braces and giving another show me seminar he did calm down and was able to have a productive session.
We hustled to the pool right after because Physio started late and ate away 45 minutes of our pool time that pisses me off , Oh well what can you do!!!!!

The sad part is he still responds more to the pool and it is the toughest to get into. We did get to spend a little better than an hour in the water, gonna have to see if we can just sneak down when it is quiet and go in unannounced.
Even a half hour of laying straight out in the water doing light stretches is better than having to be in the chair. Another day tomorrow so we will look forward to it and do the best we can maybe get some cycling time in.
See ya tomorrow right here.
Kevin

Wednesday May 6, 2009 Evening

Hi ,
It is now almost 11 o'clock and I didn't want to write but here it is.
Quiet morning Chris got to sleep in until I woke him so we could get washed and shaved before the pool. The pool session was great as the rec therapist is now getting more involved as she sees the movement and sounds Chris makes when in the water so instead of her only staying in for a half hour she stayed the whole hour and it worked out perfect for Chris.
They have hot showers on deck so upon leaving the pool you can shampoo and shower the chlorine and crap off before going to get changed.
Got back to his unit and proceeded to have lunch and sleep while eating then that crazy cough of his started and kept him up and awake all of the lunch time and then left him wiped out for the afternoon therapies, Oh well being tired from working out can not be all bad.
Chris and I managed to stay awake for most of the Pittsburgh game. When he fell asleep during the second period I stayed and watch the overtime then drove back to Edmonton.
Another pool session in the morning so better sign off and get some sleep as I will have to be down there early.
Till tomorrow good night.
Kevin

Wednesday May 6, 2009

Hello,
Delayed again I was home for the weekend and Shelley, Scott and kids were here to visit Chris over the weekend. Chris was pretty responsive to Kylan's voice and the touch and holding of Gwen. To bad he could not be closer to home to get more emotional support in these ways.

Chris and I got to use to pool to ourselves on Monday afternoon and it was great after not having any really therapies since early Friday. He really moved and let you know how the water is so relaxing. We spent an hour and a quarter in the water and by the end he was extremely tired. It was an early night.
Tuesday turned out to be a bit of a slow one as Chris was plugged up a bit, think it maybe the start of a cold. It made for a frustrating day as sleep was the preferred method of therapy for most of the day. He was able to stay awake for the first period of the hockey game.

Wednesday we are back in the water and will continue the updates after today has finished.
Sorry for the delays but by the time I drive back to Edmonton each night I am tired and just cant think straight to update. I am trying to remember how many of you only have this link for updates. Hope to put a few new pictures up later today. Thanks to all of you for reminders and for being so patient.
More later today.
Kevin

Wednesday April 29, 2009

Good Evening,

A very tiresome day today we only managed two sessions and was pretty tired through them as well. It was a very sunny day today and fairly warm out of the wind, so we took a few walks all the way around the complex to get lots of fresh air.
New drugs tried and old ones up a little so adjustments are expected.

Along with the bike and exercise area, we also have Monday afternoons to ourselves in the pool and now a Wednesday morning session with Rec therapist helping out! It does pay to not give up, just be persistent. Couple of things planned for tomorrow then Shelley will be here in the afternoon and Chris will get to see his new niece and the old nephew!!!
Looking forward to tomorrow and more change?
Good Night,
Kevin

Tuesday April 28, 2009

Hello,

Tuesday was a rather quiet day, Chris has a bit of a cold or stuffy nose keeping him a little more subdued than usual. Still got to some Ot /Physio today but most was passive and quiet. Tomorrow will be a busier day with the bike and a full day ahead.

Just let me add in here, that as and when I refer to time spent at home and not getting any treatment that amounted to anything, I refer to our system and lack of foresight and general common sense thinking when it comes to rehab. ( the system sucks) I did not want to paint all of the nurses and aides that gave so much of their time caring for Chris with the same brush I use to refer to the disdain for the outdated facilities and the inept, archaic way of running medical rehab system.
You all know who you are and how much we appreciated your contributions to Chris' healing and providing piece of mind for us when we could not be there for him.
Just wanted all to know the human factor in all of this is what keeps us going. Credit should be placed where due, so thank you all again for your caring touch and thoughts they have changed me in an unexplainable way and has really made me a more compassionate and understanding individual.
It has also made me a stronger and take no crap person when caring for Chris' well being.
Had to add this today, it may mean something to a few of you and nothing to the rest but I feel much better having said it. It has also pushed me to help more people than just Chris and will continue to do so.
Back to matters at hand Chris will be able to use the pool for a two hour window with me on Mondays and we will have the pool to ourselves hard to believe but persistence pays off.
We also have open authority to use the exercise room when not in use and to use the equipment, so no more down time with nothing to do.

It is so true, some days you move forward with strides and some days you stand still. It is important not to judge by the day nor by the week or month but to just keep moving forward and taking in all the little wonders that happen keeping in mind how quickly they can be taken from us.
Kevin

MondayApril 27,2009

Hey everyone,

Good day today started with getting familiar with the cycle equipment which Chris spent 40 minutes on and we tried all the different configurations and looks like it is going to be a welcome addition to the workout regime. Snow storms all day today after lunch we went out side in warm sunshine and stood in the snow fall letting it cover our faces and shoulders quite a sensory awakening experience. We had a great session on the tilt table and have worked out a few changes with custom cut foam supports and Auntie Helen's head band. I will be cutting a custom arm support out of wood in their shop tomorrow and getting it to fit properly so it will support his upper body. Had talk with Dr Gray re: some other drugs that were recommended by some of the docs Chris worked with and Dr. Gray is willing to give it a try. The pool thing I think is now going to work out as I ended up talking to the head of the Unit and she is happy with my ability to handle Chris in the water, so it looks like I can get in when ever open pool time permits. I left him asleep with the game on and having dinner a bit late, but he was completely wiped out with activity today. So we look forward to another day the same tomorrow.
Good Night
Kevin

Sunday April 26, 2009

Hello,
Sorry for the delay in posting but my week was cut short here in Ponoka with the birth of my granddaughter and Chris' niece.
Chris has had a pretty mild week with the typical therapies going on. The water therapy apparently didn't happen because I was not here, so I guess I am really going to have to push the access issues this week.
Still waiting for the OT to deliver the cycle machine that we can use to get his legs and arms moving on a regular basis. Chris has been pretty tired all weekend and and slept most of it other than watching hockey, walking the hall ways and skipping outside for 5 minute intervals to be refreshed by the snow and wind in our face.
More updates after the new week gets rolling.
Thank you
Kevin

Thursday April 16, 2009

Good Thursday afternoon,

Early start to the day today, I could not sleep so headed down at 530 to see Chris and the good things we have been working on. I see how and when things get going in the morning it is not always as told. But it all worked out and moved forward very fast.

We started leaving him in bed a little longer in the mornings so he has more energy when Therapies start. Then a mid day break while having lunch then up for afternoon therapy and stay up for dinner and the game of the evening (hockey that is) we watched the Montreal game while having dinner and then went to bed and watched the Calgary game to fall asleep to.

We did make it in the pool today, a very good thing, I am glad I paid attention to Joyce and Holly when in the pool because it was me today to do it all and I so appreciate all the moves and techniques they shared with me while in the water with Chris. Really makes me see the patience and willingness to be there day after day methodically providing the aqua-therapy the way they did.
(Thank you again Joyce and Holly)

Bev the Rec-therapist did come in the water with us but she is still quite uncertain about all that is possible, but she is learning the over cautious can be carried to far.
I can see that I will have to get a water access chair of our own in order to gain another day in the water as it is not having access to the chair when the open water times are available.

I am tired and my thoughts are not coming in order so anything I missed I will update tomorrow.
Thank you
Kevin

Wednesday April 15, 2009

Hello,
Today was a good day we started out with rec-therapy and then went for a walk. It was a bright Sunny day today and fairly warm out of the wind.
Had lunch in his room and watched the noon news and the hockey highlights.
Slept for an hour or so and then went for another walk and really woke up just prior to Speech therapy. Speech was great today hitting about 70% of the things that were asked of him. We watched the Pittsburg game while having dinner as it was on the big screen. Then went to bed and watched the Canucks play until falling asleep.

Pool session in the morning tomorrow getting really excited about that will let you know how it went tomorrow, Hopefully we will be doing all rec therapy in the pool from now on!!!!

Bye for now.

Tuesday April 14, 2009

Hello,

It's now Tuesday, April 14 I got back to Ponoka yesterday. Progression is definitely slow but there is always a little something to move forward on. Today was the meeting for family with the therapists and the doctor, all went well in general and everyone has seen an increase in mobility and response's.

The challenge now will be to get more direct responses that are consistent to questions and related activities. Physio had him out right after lunch and gave him a good workout.

We then had the meeting and Chris decided to take a couple hours of nap time was great because he was a little more attentive with the directions of the speech therapist.

Will be changing his meals and times up in the chair to be more effective to take advantage of his alertness.

The Drugs and other tweaking will continue over the next couple of weeks so patience is the order of the day. Water therapy is back sort of although he will not be in the water tomorrow during rec-therapy he will be going in on Thursday so I will have to be persistent and keep tugging and pushing until all rec-therapyis taking place in the water.

Will keep you informed as it happens. Did not get out for a walk today as there was quite a snowstorm happening here all day, we did however have several walks through the facility down to the lunchroom cafeteria and then back here to to his room to watch a little bit of hockey highlights. We watched the Canada game and then the draft take place. Chris is looking forward to a nicer day tomorrow with some warmth from the sun to enjoy a walk along pathways.

Thank you,

Kevin

Thursday April 9, 2009

Well after a little break, I am posting again. The treatments continue some get delayed with meetings and such but they are good when they are being done. Delays in access to the pool as each therapist has thier own worries and concerns as they have not dealt with some in the water before. I have tried reassuring them but it will only happen as fast as they think appropriate. I do believe that with a little more pushing and the talk with the doctor about addressing some of the therapists concerns it will be back on track very soon.
One of the regular nurses on Thursday night heard us talking about not being able to watch the hockey playoffs. So she found and extra TV that was not being used, it was left over from a donated TV in the main room. So she brought it in and set it up. He now is all set for the playoffs.
Attching new photo's.
Bye for now
Kevin

Thursday April 2, 2009

Got here at 10:40 this morning, just as Anthony and Kristi were putting Chris back into his chair after a "good workout", to quote Anthony and Kristi. They did much the same as yesterday. He is good shape today again. As he was quite tired after the morning, he was put back into bed for his lunch and a rest. The Education Centre was cancelled again today. Alanna will be working on some swallowing and communication with him at 3:30. She said that when she came yesterday at 3:30, he was sound asleep so she did not wake him. Tara and Roberta will get him up and in his chair again very soon. He had a good nap after his lunch. A couple of good big coughs and he was able to clear his throat. It's only 2:25 now, so we'll have time to got outside for a little bit before the 3:30 appointment with Alanna. The sun is now shining and it's pretty nice.
Bye for now.
U Larry

New posts will not be done until April 7th sorry!

Monday, March 30:

Hello from sunny Ponoka. Chris had a good night sleep and was up and in his chair when we arrived about 10:00 this morning.

The OT was in at 10:30 and did a half-hour workout with him, focusing on hand and arm movement. Afterwards, Chris got into his chair and brought his lunch with Uncle Larry and me to the cafeteria and we all had lunch together. He had a brief rest before it was time for his first session in the pool with the Physio and Rec therapists. I was able to get in the pool with them and show them the exercises we were doing at aquatherapy. They were interested in learning about aquatherapy he had been doing in Aldergrove with Joyce and Holly. As it is relatively new to them to work with someone who cannot get in and out on their own, it was a learning experience for them as well. Chris seemed to feel right at home in the water!

It was a busy day and he was soon fast asleep after getting back into bed about 4:15. We didn't get outside to enjoy the sunshine today as it was a little too busy. Hopefully, we'll be out for some sun tanning tomorrow if the weather holds. Anthony, the OT stopped by to see how the water session went and was quite amazed at the responsiveness Chris showed today since the last session he had with him. There will be a meeting of all therapists and doctors tomorrow to talk over the effects of the drugs they have been trying since last Thursday!

All in all, it has been a very good day.

Cheers to you all!

Kevin

Sunday

Hello on a sunny Sunday.

Chris seems to have a lot of energy today, awake and wanting to look around. We had lunch and then a long walk outside around the ground. It is all covered with snow and ice but the sun is out and bright with all the reflection off the snow it is quite nice.

Something has gotten into him because he just won't sleep today. He was up for 5 hourss and outside for an hour in fresh air but now keeps looking around and fighting sleep. It's about 5:30 now and he is having his dinner and slowing down a little, so maybe now he will drift off into a comfortable sleep. Tomorrow is the start of Chris' 4th week here. Wow. It is passing by fast. Lots to do. Will post another update tomorrow after the day is done.

Bye.
Kevin

Friday - Saturday March 27-28, 2009

Hello,

It's now Friday, March 27. I got back to Ponoka yesterday. Things are progressing. Chris was looking a little worn and frustrated today, I think because the physio/occupational therapist appointments were cancelled due to meetings and other stuff happening. Recreational and speech therapy stilll proceeded as usual. Maybe lack of challenge bored him yesterday? Definitely get the feeling he did not want us to go lastg night. Uncle Larry is here visiting this week as well.

Physio had him up and out at 9:30 this morning. After fixing the braces and adejusting the chair again we were able to get his lunch and take it with us to the cafeteria for our lunch. Meet the full time Charge Nurse Lorna. Nice lady seems to be in charge with everybody knowing their jobs. She was telling me of the drug now being tried and the observations they were doing and recording. This afternoon is speech again. Going to get him back to bed for a sleep now before this afternoon sessions stgart. Speech therapist was in and got some good swallows happening even though we had to wake him with a warm cloth se he wasn't drowsy. As 4:30 to 5:30 rolled around his dinner was started and he was asleep for most of it and ready for a good night.

Saturday morning Chris got sick but think it was due to his feed being sped up and a little coughing and uneasy feeling that gets him red and aggravated. He was in bed most of the morning relaxing and taking it easy. We got him up and in the chair for lunch. All went well. He has now been sleeping for most of the afternoon. U. Larry found a set of Legends of Hockey VHS but we cannot get access to the big screen. We will keep trying to get in on the TV.

Thanks.
Kevin

Friday March 20, 2009

Hi to all,

Thursday and Friday Chris has been doing great with all the different programs he is still responding to all the action, he definitely comes more to life when being challenged. It is almost like it's the only way right now that he can show he understands.

The work load seems to wear him out each day and sleeps are getting more and more regular. He has slept through the last two nights pretty well, I make reference to this because his sleep patterns were all over the place at home and as we all know there was nothing here to challenge him at all except the things we took him out to
.
When I check in the mornings the nurses are super at concise and accurate information regarding Chris. If you could meet the doctors and the nurses you will understand what I am raving about and most who go to visit will meet them.
Don’t get me wrong it’s not perfect, but they are damn good.

I have asked the Recreation therapist to start the process to approve Chris for aqua therapy similar to what I was doing with him here. She said it would take a couple of weeks to get him in the water and see how he reacts so that they can approve me to take him in the water.
I would take him in after all therapies have finished, sort of an end of the day relaxation session as well the recreation therapist has said she will try to include a couple of sessions in her time during the days seeing as how he responds so well in the water.

There are therapists assistants who will take Chris down to the computer room and bring up the NHL page and go over the scores and games from the night before. This is great as that is how he started each day by checking the standings and games from the previous night. Chris’ Mom had said all the classes and work outs for Thursday went well and he continues to respond in the sessions (slowly but surely).

Any letters or correspondence you may want to send to Chris can be sent to:

Dr. Christopher Bigelow
C/o Halvar Jonson Center for Brain Injury
P.O. Box 1000
Ponoka, AB T4J 1R8

Thank you,
Kevin

Tuesday March 17,2009

Hello,

Tuesday and the program still continues, Chris seems to be responding and fighting to take part in programs answers are usually gotten by therapists to the action required. Good to see him worn out at the end of the day after all the action he has to go through.
I will be with him until just after lunch when the last of the meeting sessions with the therapists will take place then I will be home for a few days and back to maybe start taking him in the pool for some aquatics once they approve him and then me for doing this. There may be a lot of red tape but they are willing to try just about anything that can be justified or explained. This place really does live up to the doctors motto of never say never. If it helps the person they are on board.
I will up date the days I am not there by passing on the info I get from the nurse in charge each morning.

Bye for now,

Kevin

Monday March 16, 2009

Hello,

Monday start of a new week lots of activities planned for the week. Met with the OT and got the bugs sorted out with the chair and splints that feels better already.
Speech therapist was in several times mainly because Chris was sleeping a lot she is very patient and does not disturb him or move forward with trying new things unless she gets a sign from him that it is all right. Been here a week an already 3 baths and a couple of hair washes!!!! Definitely something wrong with our home system (Sigh).
Dr. Gray was in to meet us late in the afternoon as this was his first day back I did not expect to meet him until tomorrow. Nice man very down to earth friendly and full of knowledge. We learned also that Dr Rosencranz and Dr Gray only work in the unit that Chris is in other than the fact Dr gray oversees the whole unit. There are 3 sections to the Brain Injury Unit.

Will have more to tell tomorrow after all the therapies are now getting to know Chris.
Good Night


Kevin

Sunday March 15, 2009

HEY EVERYONE,

Another slow day in Ponoka, Shelley and I spent the day with Chris he was extremely relaxed and did seem to be quite alert off and on for a couple of hours. New nurses on today and they are great willing to listen and take part in what we show them also very caring.
The weeks schedule is posted Sunday night for the upcoming week so it is exciting to see that everything we had to beg for and never got prior to coming here is just a matter of fact here.
Got to pinch myself at times to believe one person can get that much attention in a medical setting!

Will update with Mondays tomorrow as there is a doctor change on Monday the two main docs do 10 weeks each alternating.
Bye for now
Kevin

Saturday March 14, 2009

Quiet day today the place shuts down completely on the weekend. Seems allot of people go home or out on weekends so probably a great time to visit.
The weekdays are so busy and tiring there would not be a great deal of visiting time even though most staff are very obliging.
Chris is catching up on sleep as it was a very lazy day.
I will be picking Shelley up tomorrow morning and heading down for the day with him. It is supposed to snow again in the morning and it is a little below freezing -4 to -7 so icy and takes a while to warm up.
We sat in the sunshine today for awhile even though it was only 7 degrees it felt it was 20 in the sun.
Dr Gray takes over on Monday so it will be our first meeting in person either Monday or Tuesday I will keep you updated the best I can.
Thank you for checking, better yet thank you for caring.
Kevin

Friday March 13, 2009

Hi Again,

Friday morning things a little backwards replacement worker not doing anything that was set out frustrating but time seems to correct most things. Anthony the OT came along and helped with most of the problems as well as the nurse filling in today seems to understand the splinting and seating issues very well. A few more things to go this afternoon and then quiet arrives for the weekend no therapies or treatments happen on the weekends. Just keep reading the days like an open book some are great some are not. Not everything in life is perfect. Over all things are happening and Chris is responding in very subtle ways, as Shelley and I were talking sometimes we think we see things that we don’t know are real movements or reflexes so having staff we have never met comment on how he responded is great news and definitely warms the heart and boosts the drive!


Kevin

Thursday March 12, 2009

Hi Again,

Dropped Shell and Kylan at the airport this morning and then hustled down to Ponoka for meeting at 10:30 with the co-coordinator. Got here a bit early and Chris had already finished his breakfast and was out at Physio with Anthony. Met with Dr Rosencranz until lunch then checked in on Chris he was already halfway through his lunch.
His meals are being changed and run at a faster rate to free up more interaction time with the different staff. He will now have 5-6 hours available for therapy sessions as opposed to the couple of hours before; basically he had to spend all the day being fed!!!!

Going now 1:30 to meet again with Physio and 2:30 I am to finish my meeting with the Social worker and then Chris and I will be meeting and discussing the situation with the speech and swallowing.

X-rays and tests were finished this morning as the results come back within hours (Surrey took days) all the final adjustments can start taking place.
Another busy afternoon seems the people you need to talk to are always busy when you are free and vice-versa. Slowly but surely things are falling together and it looks like the worst day here is equivalent to a good day at Ivy Dale. Not saying there wasn’t a great bunch of people that worked with Chris it’s more the organization and care and accountability. Structured environment that is always moving forward, so interaction between the different disciplines is important this in itself acts as a policing system because everyone books their time based on other activities that are planned so if you don’t show someone is looking for you and asking questions. So much more continuity it is wonderful and I am humbled at the chance for Christopher to be a part of this and to at least have a chance to build on the healing that has already taken place. Taking Chris back for dinner now will update with tomorrows activities later.

Kevin

Wednesday March 11, 2009

Hi Everyone,

We are finally here the place is pretty amazing and so far the people are great, they all seem to care and are willing to work with us to make a change.
The Halvar Jonson Center named after the MLA for Rimbey/Ponoka in the 90’s also known and as the Centennial Center is located about 7 km from Hwy 2 along Hwy 53 in the back corner of Ponoka Alberta. It is a sprawling hospital with wigs in every direction. The brain injury section is 3 areas in its own section with approximately 16 patients to an area.
The Doctor not seeming to make out the info that was asked for from BC has started from the beginning with blood and x-rays etc, etc. This all to make sure they know what is going on with him right now and where immediate help can be applied.
The first few days are all spent meeting and greeting the team of therapists that will be treating him. Each met and observed asked questions and got direction from the doctor. Then input from us as to what has been going on in the past (zilch).
Dr. Rosencrantz and I have had several long and very interesting discussions and covered almost all the territory possible for the immediate future.
All of which will be detailed slowly in the weeks to come.
Quite the place I really do believe we are very lucky to be able to take part and have the help from staff and doctors. Although they do have a lot of the same problems here as we do at home and the rest of Canada, the big difference is the staff and their approach to problem solving. No applying drugs and unnecessary treatments to cover or treat nonexistent illness.
Everything that is tried or given is followed up very closely watching its outcome or effects. I could go on and on but I think you get the drift?
First two days have been exhausting and trying but it’s been a long wait far too long so no matter what it takes it will move forward and have every chance of success.
More tests and X-ray tomorrow start of some therapies such as Physio and OT, changing food and how it is delivered and all most all things that were never addressed up until now.
I cannot believe the openness and the time the doctor has taken to listen and understand our concerns and to explain all that he had to offer.
It has been -35 to -40 in the mornings and around -22 during the day time so no outside walks yet. Thursday it should get up to plus 2 daytime and -12 overnight.

I am so tired now I will update again tomorrow as I will have some down time during the day and Chris’ treatment.
Good Night
Kevin

March 7, 2009

Hi Everyone,

Dr. Rosenkranz from the Halvar Jonson Center called me on Thursday to say its all clear and they expect Chris there for Tuesday March 10th.
He will be traveling by Air ambulance from Laurel Place to Ponoka Alberta, we won’t know the times until Tuesday morning.
So the adventure moves forward and we all have our fingers crossed and hope for amazing things.
We will not get ahead of ourselves because we will be happy no matter what happens, we have to remember to keep an open mind.
The real work will not happen until we get home. Then we start planning for living and rehab on a daily basis never saying never.

Kevin

March 1, 2009

Hello,

Not much new happening here, we await for the Norwalk virus to be cleared at the center in Alberta before we get a date to travel. When I hear I will let everyone know as quickly as possible.
Chris I know would definately enjoy visits and a walk from those who have time. If you are not sure when he will be in or out please check this site or give me a call, thanks.

Aqua therapy will continue until we go, the schedule will be same as below.
Dont forget you can leave messages and comments through the link below.
TTYL
Kevin