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
Friday, November 27, 2009
Thursday, November 26, 2009
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
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
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
Thursday, November 19, 2009
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
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
Monday, November 16, 2009
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
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
Thursday, November 5, 2009
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
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
Sunday, November 1, 2009
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
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
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