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