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
Monday, August 24, 2009
Thursday, August 20, 2009
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
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
Wednesday, August 12, 2009
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
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
Sunday, August 9, 2009
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
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
Thursday, August 6, 2009
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
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
Monday, August 3, 2009
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
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