Quick update

Hey all,

Just to let you know what’s going on, heard through the lawyer today that the ministry is writing to the Doctor in Ponoka and the Doctor in Surrey asking for more information.
Having copies as requested from the therapist as well as both doctors proved to be too complicated to handle the first time around .

Obviously the first read of these reports and letters proved to not be clear enough.
You can read highlights from these letters on the previous day’s blog.

We all know how much free time, and lack of patients our Doctors have, so I am sure they wouldn't mind providing the same info two, three, maybe four times until, they who must make these complicated decisions, get an over load of information, for which they know nothing about, so they can put a spin on it, until it fits their need.

Oh wait that’s, our health care system I am talking about.

This just goes from being a simple fix, which does not take a well educated person to decipher, to being cruel and unusual punishment for Chris and our family.

I wonder how many hours or for that matter minutes have any of these politicians or their subordinates have spent in a rehab facility for people with catastrophic injuries to see what goes on, in a day in a life.
Day after day of long stressful hours trying to rebuild a person, so they may have a second chance at  a life that was taken away by matters beyond their control, I think very few if any.

Will keep you informed,
Please keep your fingers crossed, because hoping and wishing may prove better than physical evidence or a trained professional's opinion.

Thank you,

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

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

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

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

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