Hello again and on time,
It has been an eventful day, starting with Chris having his first seizure during the night although it was caught and recorded the reasons are still unclear but being looked into.
I will be taking Chris for a CT scan next week to rule out any problems and medication s are being reviewed to figure out what if any part they may have played.
As he was up most of the night and sleep deprived we opted out of the pool for a chance to gain more rest.
The rest of the day consisted some mild stretching and a couple long walks in the 26 degree temperature.
He will be watched very closely over the weekend and the plan will be to get him rested up and start fresh again on Monday.
We were hoping to be able to alter the house and make it satisfactory to meet Chris' needs.
This option is not going to be possible and therefore we must be prepared to move and alter a residence by the end of summer. This daunting task I had hoped would give more time but most of the trials we are doing here will be done by mid August if we are successful in obtaining all the rest of the approvals and hoop jumping that is required to stay the additional time. Hopefully it comes together as I feel it should.
If any one reading this blog has any suggestions as to fund-raisers or other means of raising funds Chris will be in need by the end of July as the ICBC funds can only be used for medical equipment and very specific alterations. Meaning we will have to cover most of the alterations and special needs ourselves. My pride has stopped me from posting anything to do with money or assistance. But we are left with no alternative as the government has a catch 22 scenario with the medical assistance, in that, as long as ICBC (a government controlled entity) has funds in Chris' name the Province will not grant him disability status enabling him to access funds for his basic needs (no money). Trouble is ICBC medical money will only be paid out for medical necessities as ICBC sees fit which are completely out of line with what Chris needs. All therapies and extras except for the water therapy at home have had to be paid personally.
I will be happy to follow up and explore any suggestions you have.
Thank you all for your time and concern,
Sincerely,
Kevin
Friday, May 29, 2009
Thursday, May 28, 2009
Thursday, May 29, 2009
Hello everyone,
Yes I've managed to skip day again, during therapy we managed an hour and a half in the pool on Wednesday and it was great relaxation for Chris it seemed to loosen up all of the extra phlegm that he built up over the weekend.
The afternoon therapy went well and at the end we went outside for a long walk which was extremely warm and comfortable. After dinner on Wednesday we went down to the gymnasium where one of the nurses and his two sons both play guitar, they played music for all of the residents and people here, quite the change from the boring evenings. It was very warm so we only managed to stay for about a half hour. We missed the middle of the game while going outside for a walk, a very nice evening at 18°. We made it back inside to catch the tail end of the third period and watch the overtime, the whole evening Chris seemed to be wide awake and noticing things in a little bit more detail than usual, showing signs of very strong movements to the left side and more direction.
Tuesday, May 30 this morning started out wide awake and ready to go, we proceeded to head to the pool a little earlier that usual as the therapist was going to have extra people in the water during our session. We ended up doing a full hour session with the rec-therapist and stayed an additional half hour just relaxing to take it easy. We then ended up back having lunch and resting which then led into his physio-appointment they did quite a bit stretching and mobility, which really tired Chris out. Speech therapy didn't start till 330 they worked at swallowing with different liquids which he seemed to take to quite well by the end of this session he was pretty much sound asleep.
We then went outside into the sunshine for a predinner walk while he relaxed, did a little bit of suntanning and then back inside before dinner.
He's now sound asleep and it really were wiped out which makes me feel great, I do think it's doing him a world of good in the pool. I believe it provides the best simulation and the most noticeable difference.
Friday morning I will be meeting the OT therapist at the pool he has agreed to come and to the water and give it a try as well, so that will give us a pool session every day of the week if we are able to make use of it.
This has been the extremely tiring and exhausting week emotionally not knowing what the outcome in Alberta will be, hopefully by next week we will have a meeting and discuss all the possibilities that have not yet been tried.
This evening Thursday night I believe there's a tour of the Centennial Center by the Minister of health, it's a shame we couldn't have the Minister of health for British Columbia join him so he could see the work that is being done here. Maybe even see the need to have a facility in British Columbia so that we could be closer to home and family.
Goodbye and goodnight will update tomorrow thank you.
Kevin
Monday, May 25, 2009
Tuesday May 24, 2009
Thank you Helen for the update and spending the weekend with Chris. A change of voice and view is probably needed by now he hears me all to much sometimes I am sure.
Back swimming on Wednesday morning will update after the day is over bye for now.
Kevin
Back swimming on Wednesday morning will update after the day is over bye for now.
Kevin
Wednesday, May 20, 2009
May 20, 2009 Wednesday
Hi everyone,
We were back in the pool today, which was a good thing as Chris was quite uptight and irritated for most of the morning. We stayed in for an hour and a half, it took the first hour just to get him to let go and relax, but it paid off later with some pretty sound sleep.
Then I found out his drugs had been accelerated and increased over the last two days, lots of weird changes some good some not.
Starting to question some of the things being done and not followed up the way I would like to see them done.
I am beginning to feel like a squeaky wheel that they would rather change than oil?
Found out our time here is being questioned everyday. Kind of like waiting to get fired from your job with nowhere to go. Sure is an uneasy and very uncomfortable day to day existence knowing time is winding down.
We are now waiting to see the outcome of the drugs that have been increased and sped up because of our time restriction here.
There is still a glimmer of hope for a partial extension, but it will take some negotiating and convincing of things that are yet to be tried.
Nothing makes you learn and research like necessity, and there is no shortage of that.
In fact without me having that intimate knowledge about the line of drugs commonly used or in fact not commonly used in treating the brain, makes you feel like your cramming for an exam.
If you don't understand what you are asking for or understand why things work the way they do nobody has the time to tell you as it is new to most of them as well. Remember most of the new research is done in the U.S.
We will be in the water tomorrow and hopefully he can relax as well as today, the water is a great release even if just to relax and let go of tension. Chris' aunt will be visiting him Friday and through the weekend, a change for him and break for me.(thank you Helen)
Stay tuned will keep you informed as things unfold.
Kevin
We were back in the pool today, which was a good thing as Chris was quite uptight and irritated for most of the morning. We stayed in for an hour and a half, it took the first hour just to get him to let go and relax, but it paid off later with some pretty sound sleep.
Then I found out his drugs had been accelerated and increased over the last two days, lots of weird changes some good some not.
Starting to question some of the things being done and not followed up the way I would like to see them done.
I am beginning to feel like a squeaky wheel that they would rather change than oil?
Found out our time here is being questioned everyday. Kind of like waiting to get fired from your job with nowhere to go. Sure is an uneasy and very uncomfortable day to day existence knowing time is winding down.
We are now waiting to see the outcome of the drugs that have been increased and sped up because of our time restriction here.
There is still a glimmer of hope for a partial extension, but it will take some negotiating and convincing of things that are yet to be tried.
Nothing makes you learn and research like necessity, and there is no shortage of that.
In fact without me having that intimate knowledge about the line of drugs commonly used or in fact not commonly used in treating the brain, makes you feel like your cramming for an exam.
If you don't understand what you are asking for or understand why things work the way they do nobody has the time to tell you as it is new to most of them as well. Remember most of the new research is done in the U.S.
We will be in the water tomorrow and hopefully he can relax as well as today, the water is a great release even if just to relax and let go of tension. Chris' aunt will be visiting him Friday and through the weekend, a change for him and break for me.(thank you Helen)
Stay tuned will keep you informed as things unfold.
Kevin
Wednesday, May 13, 2009
WEDNESDAY MAY 13, 2009
Hello,
Some trying days, lots of discussions about upcoming funding by BC for Chris to be able to stay another 90 days and if we will get it.
Alberta Government is thinking of canceling the out of province beds, but we have not heard anything about this yet just crossing our fingers and planning for positive outcome.
It really takes away from all the positive stuff going on and cant help but have a lingering feeling hanging in your head all day. We have the doctors support and we are trying to get in all the different trails we can in the short time left just in case.
The Docs have tried to be positive and they too have not written anything in stone. It may come down to the incoming doctor Dr. R to write and convince an already backward system in BC to allow another 3 months to really try what we came here for.
Seeing as how we have nothing even remotely close to this at home.
Anyway on to the positive, we started a new drug on Wednesday it will be a couple of days to see any results the first day was pretty tiring and laid back.
Our pool times have increased to Monday, Wednesday and Thursday and today I was able to convince them to open up a Tuesday session in the morning.
Mondays and Tuesdays I will have to take Chris in by myself and Wednesday and Thursday the Rec Therapist will assist with the time in the water. Kinda sucks with all these victories in the access to the water, is that if I am not here he won't get in at all. Just appreciate the ability to use it and make the most of it!
We are in the water first thing in the morning and several therapies will be going tomorrow. With the long weekend though we will not be able to use the pool again until Wednesday, but Shelley and the kids will be here with him over the weekend and into the start of next week so that will keep his moral up.
Some trying days, lots of discussions about upcoming funding by BC for Chris to be able to stay another 90 days and if we will get it.
Alberta Government is thinking of canceling the out of province beds, but we have not heard anything about this yet just crossing our fingers and planning for positive outcome.
It really takes away from all the positive stuff going on and cant help but have a lingering feeling hanging in your head all day. We have the doctors support and we are trying to get in all the different trails we can in the short time left just in case.
The Docs have tried to be positive and they too have not written anything in stone. It may come down to the incoming doctor Dr. R to write and convince an already backward system in BC to allow another 3 months to really try what we came here for.
Seeing as how we have nothing even remotely close to this at home.
Anyway on to the positive, we started a new drug on Wednesday it will be a couple of days to see any results the first day was pretty tiring and laid back.
Our pool times have increased to Monday, Wednesday and Thursday and today I was able to convince them to open up a Tuesday session in the morning.
Mondays and Tuesdays I will have to take Chris in by myself and Wednesday and Thursday the Rec Therapist will assist with the time in the water. Kinda sucks with all these victories in the access to the water, is that if I am not here he won't get in at all. Just appreciate the ability to use it and make the most of it!
We are in the water first thing in the morning and several therapies will be going tomorrow. With the long weekend though we will not be able to use the pool again until Wednesday, but Shelley and the kids will be here with him over the weekend and into the start of next week so that will keep his moral up.
Monday, May 11, 2009
Monday May 11,2009
Hello,
Friday, we got in a short physio session and a walk as the other two therapies were cancelled.
The weekend was quiet one, one of the nurses on shift both days took Chris out for a walk as the weather here was pretty good all weekend.
Monday I got back at lunch, OT had him out this morning early and he had just finished lunch so he was at Physio, but as usual different people never pass on the info on splints and bracing so they were trying to get Chris up on the Tilt table but his frustration level was incredible.
When I got here he was in pain. After adjusting his braces and giving another show me seminar he did calm down and was able to have a productive session.
We hustled to the pool right after because Physio started late and ate away 45 minutes of our pool time that pisses me off , Oh well what can you do!!!!!
The sad part is he still responds more to the pool and it is the toughest to get into. We did get to spend a little better than an hour in the water, gonna have to see if we can just sneak down when it is quiet and go in unannounced.
Even a half hour of laying straight out in the water doing light stretches is better than having to be in the chair. Another day tomorrow so we will look forward to it and do the best we can maybe get some cycling time in.
See ya tomorrow right here.
Kevin
Friday, we got in a short physio session and a walk as the other two therapies were cancelled.
The weekend was quiet one, one of the nurses on shift both days took Chris out for a walk as the weather here was pretty good all weekend.
Monday I got back at lunch, OT had him out this morning early and he had just finished lunch so he was at Physio, but as usual different people never pass on the info on splints and bracing so they were trying to get Chris up on the Tilt table but his frustration level was incredible.
When I got here he was in pain. After adjusting his braces and giving another show me seminar he did calm down and was able to have a productive session.
We hustled to the pool right after because Physio started late and ate away 45 minutes of our pool time that pisses me off , Oh well what can you do!!!!!
The sad part is he still responds more to the pool and it is the toughest to get into. We did get to spend a little better than an hour in the water, gonna have to see if we can just sneak down when it is quiet and go in unannounced.
Even a half hour of laying straight out in the water doing light stretches is better than having to be in the chair. Another day tomorrow so we will look forward to it and do the best we can maybe get some cycling time in.
See ya tomorrow right here.
Kevin
Wednesday, May 6, 2009
Wednesday May 6, 2009 Evening
Hi ,
It is now almost 11 o'clock and I didn't want to write but here it is.
Quiet morning Chris got to sleep in until I woke him so we could get washed and shaved before the pool. The pool session was great as the rec therapist is now getting more involved as she sees the movement and sounds Chris makes when in the water so instead of her only staying in for a half hour she stayed the whole hour and it worked out perfect for Chris.
They have hot showers on deck so upon leaving the pool you can shampoo and shower the chlorine and crap off before going to get changed.
Got back to his unit and proceeded to have lunch and sleep while eating then that crazy cough of his started and kept him up and awake all of the lunch time and then left him wiped out for the afternoon therapies, Oh well being tired from working out can not be all bad.
Chris and I managed to stay awake for most of the Pittsburgh game. When he fell asleep during the second period I stayed and watch the overtime then drove back to Edmonton.
Another pool session in the morning so better sign off and get some sleep as I will have to be down there early.
Till tomorrow good night.
Kevin
It is now almost 11 o'clock and I didn't want to write but here it is.
Quiet morning Chris got to sleep in until I woke him so we could get washed and shaved before the pool. The pool session was great as the rec therapist is now getting more involved as she sees the movement and sounds Chris makes when in the water so instead of her only staying in for a half hour she stayed the whole hour and it worked out perfect for Chris.
They have hot showers on deck so upon leaving the pool you can shampoo and shower the chlorine and crap off before going to get changed.
Got back to his unit and proceeded to have lunch and sleep while eating then that crazy cough of his started and kept him up and awake all of the lunch time and then left him wiped out for the afternoon therapies, Oh well being tired from working out can not be all bad.
Chris and I managed to stay awake for most of the Pittsburgh game. When he fell asleep during the second period I stayed and watch the overtime then drove back to Edmonton.
Another pool session in the morning so better sign off and get some sleep as I will have to be down there early.
Till tomorrow good night.
Kevin
Wednesday May 6, 2009
Hello,
Delayed again I was home for the weekend and Shelley, Scott and kids were here to visit Chris over the weekend. Chris was pretty responsive to Kylan's voice and the touch and holding of Gwen. To bad he could not be closer to home to get more emotional support in these ways.
Chris and I got to use to pool to ourselves on Monday afternoon and it was great after not having any really therapies since early Friday. He really moved and let you know how the water is so relaxing. We spent an hour and a quarter in the water and by the end he was extremely tired. It was an early night.
Tuesday turned out to be a bit of a slow one as Chris was plugged up a bit, think it maybe the start of a cold. It made for a frustrating day as sleep was the preferred method of therapy for most of the day. He was able to stay awake for the first period of the hockey game.
Wednesday we are back in the water and will continue the updates after today has finished.
Sorry for the delays but by the time I drive back to Edmonton each night I am tired and just cant think straight to update. I am trying to remember how many of you only have this link for updates. Hope to put a few new pictures up later today. Thanks to all of you for reminders and for being so patient.
More later today.
Kevin
Delayed again I was home for the weekend and Shelley, Scott and kids were here to visit Chris over the weekend. Chris was pretty responsive to Kylan's voice and the touch and holding of Gwen. To bad he could not be closer to home to get more emotional support in these ways.
Chris and I got to use to pool to ourselves on Monday afternoon and it was great after not having any really therapies since early Friday. He really moved and let you know how the water is so relaxing. We spent an hour and a quarter in the water and by the end he was extremely tired. It was an early night.
Tuesday turned out to be a bit of a slow one as Chris was plugged up a bit, think it maybe the start of a cold. It made for a frustrating day as sleep was the preferred method of therapy for most of the day. He was able to stay awake for the first period of the hockey game.
Wednesday we are back in the water and will continue the updates after today has finished.
Sorry for the delays but by the time I drive back to Edmonton each night I am tired and just cant think straight to update. I am trying to remember how many of you only have this link for updates. Hope to put a few new pictures up later today. Thanks to all of you for reminders and for being so patient.
More later today.
Kevin
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