WOE: If Halloween doesn't hurry up and get here, I will have eaten all the "Gummy Body Parts" that I bought for the trick or treaters on Halloween! Uff da.
WHOOPIE: Rand is doing well in the weight department, turning down sweets right and left. He hasn't lost any weight but he hasn't put any on in the last six months either.
WOE: Today I called the Durable Medical Equipment Department of Kaiser to find out the status of Rand's speech generating device. They'd never heard of it! Six weeks or more ago, his doctor signed it off and sent it on electronically. It got lost in cyberspace. !@#$%^&*()! It has now been retrieved and is on its way to the Regional Review Committee who will decide if it is "appropriate" for Rand or not - six months late!!
I can't find a Whoopie in that mess!
WHOOPIE: Last week I sent out pictures of Rand driving a rented electric wheelchair - a trial run. He did so well that today I bought one for him! It will be here at the end of next week. It is bright blue with beige upholstery to match the interior of the new minivan that I bought on Wednesday! To see the minivan conversion (floor lowered by 10 inches, electric ramp and doors, passenger seat removed and a power wheelchair locking system in place, kneeling feature, etc.) go to www.braunmobility.com To see Rand's new hot rod, go to www.pridemobility.com and look up the "Jazzy 600." The unconverted minivan can be found on www.chevrolet.com under "Uplander." By Halloween, Rand and I should be cruising all over the place with new found freedom! At some point I will probably sell the Murano and get a small run around car for myself.
WOE: None really, but $$$$ keep my head spinning!
WHOOPIE: My baby sister, Annie, had two stints put in her heart two weeks ago. Two of the three arteries were totally clogged, so bad that the surgeon had a hard time getting the stints into the arteries! The surgeon said she was one lucky lady to have that major problem discovered when she did, through a routine stress test. There are five members of my immediate family and four of them share 13 heart bypasses and/or stints. Yikes! I have a stress test scheduled for next week.
WOE: Hmmmmmmmm - I can't think of any more. Life is good.
Rand is doing so well in the next round of Saving Stokes golf lessons! He's hitting a five iron out there, straight, with a nice loft. Pretty, pretty shots - not long but pretty. Thuan has found the perfect crouching position to keep Rand in place yet allowing his body to move with his swing. By the last lesson, Rand should be driving himself to the tee in his new chair!! Pictures of the new vehicles will be included in the next epistle.
Keep Rand close.
Love,
Connie
Sunday, October 21, 2007
Thursday, October 11, 2007
October 11, 2007
For several months I have been looking for an electric wheelchair for Rand with the idea that we would then get a minivan converted for handicapped use and my days of slinging a wheelchair in and out of the SUV would be over while I was still in one piece. I knew that Rand could not operate a traditional electric wheelchair due to his limited spatial awareness, 50% blindness in both eyes, inability to attend to a task, to focus and to be aware of safety issues. My wheelchair search focused on one with "attendant controls", in other words, one with controls in the back of the chair that another person or I could operate. To make a long search story short, the only ones available are special order versions that cost in the $10,000 range! Out of sheer frustration last week, I started talking to myself about who on earth the expert was that said Rand couldn't handle a traditional electric wheelchair. It was me. And what do I know? The answer is NOTHING! So today I went to a store and rented a regular electric wheelchair for Rand for a week to see how it would work. Guess what??
RAND CAN DRIVE! RAND CAN OPERATE AN ELECTRIC WHEELCHAIR WITH EASE AND A GREAT DEAL OF SAFETY!! HE'S GOOD! HE LIKES IT!! WHOOOOOPIE!!! AND HERE'S PROOF!!
Out cruising the street
A stop at a friend's house
Catching up on the news at home - the wheelchair fits his room space perfectly!
I am so thrilled!! We practiced inside the house for awhile first and then took it out on Antigua Drive. Rand navigated like a pro. He went up and down the ramp, over obstacles on the sidewalk, around things, out on the street, learned how to regulate the speed and even how to use the weenie horn! I think he even surprised himself! He was amazed at how easily this chair goes over bumps, thresholds, and other things that make a regular wheelchair quake. I am ashamed of myself for doubting Rand's current abilities. On the other hand, it wasn't that long ago that my assessment was right, but he has come a long way in the last couple of months and I just hadn't understood how much progress he has made. I think we are home free and well on our way to being more independent. Just think, last Tuesday for the Saving Strokes golf program, I had to transfer Rand eight times in two hours. With this set up that number would be zero! That saves Rand a lot of grief and saves me a lot of wear and tear on my back and shoulders.
This is not the chair we will end up with. This chair is a rental, it is too low for him, and we need one that is a perfect fit - and has a decent horn! His arm rest doesn't work on this chair so we have to address that issue also. But there is a lot to like about this chair brand and it will take more research to find just the right combination for Rand. I hope I can accomplish that in short order and then we can move on to the minivan search. The next big decision is whether we buy new or used vehicles. There are pros and cons both ways.
Stay tuned - this is a huge milestone for Rand. I truly never thought I would see this day. I'm so happy I could cry!!
Keep Rand close.
Love,
Connie
RAND CAN DRIVE! RAND CAN OPERATE AN ELECTRIC WHEELCHAIR WITH EASE AND A GREAT DEAL OF SAFETY!! HE'S GOOD! HE LIKES IT!! WHOOOOOPIE!!! AND HERE'S PROOF!!
Out cruising the street
A stop at a friend's house
Catching up on the news at home - the wheelchair fits his room space perfectly!
I am so thrilled!! We practiced inside the house for awhile first and then took it out on Antigua Drive. Rand navigated like a pro. He went up and down the ramp, over obstacles on the sidewalk, around things, out on the street, learned how to regulate the speed and even how to use the weenie horn! I think he even surprised himself! He was amazed at how easily this chair goes over bumps, thresholds, and other things that make a regular wheelchair quake. I am ashamed of myself for doubting Rand's current abilities. On the other hand, it wasn't that long ago that my assessment was right, but he has come a long way in the last couple of months and I just hadn't understood how much progress he has made. I think we are home free and well on our way to being more independent. Just think, last Tuesday for the Saving Strokes golf program, I had to transfer Rand eight times in two hours. With this set up that number would be zero! That saves Rand a lot of grief and saves me a lot of wear and tear on my back and shoulders.
This is not the chair we will end up with. This chair is a rental, it is too low for him, and we need one that is a perfect fit - and has a decent horn! His arm rest doesn't work on this chair so we have to address that issue also. But there is a lot to like about this chair brand and it will take more research to find just the right combination for Rand. I hope I can accomplish that in short order and then we can move on to the minivan search. The next big decision is whether we buy new or used vehicles. There are pros and cons both ways.
Stay tuned - this is a huge milestone for Rand. I truly never thought I would see this day. I'm so happy I could cry!!
Keep Rand close.
Love,
Connie
Monday, October 01, 2007
October 1, 2007
As we slide into fall and Christmas decorations abound, it is time for another update on Rand. All is well and he is as busy as ever. He has occupational and physical therapy twice a month now, as an out-patient at the hospital, down from once a week. I suspect that may end totally before the year is out as he has plateaued physically and Medicare isn't seeing the progress they want in order to keep the therapy going. As I understand it, PT and OT usually continue for six months or so and Rand has had nineteen months, plus the intensive month in Vallejo over a year ago. That tells you something about the tremendous progress he has made. Thuan sees him six days a week as usual, which keeps him limber, active and moving ahead. His new articulated leg/foot brace has also had an impact as he can now bend his right knee and ankle - a real plus when trying to walk.
Rand completed the "Saving Strokes" golf clinic two weeks ago and made so much progress in balance, confidence, accuracy and stamina. Lo and behold, he has been accepted into the program again and starts the next round on October 9, every week for four weeks! He grinned from ear to ear when I told him today! However, I haven't told Thuan yet - I hope he is as enthusiastic! Uff da.
Rand's blood thinning meds continue to be monitored every two weeks and adjusted as necessary. His blood thickness never stays constant - it fluctuates all the time and is hard to pin down. I keep hoping that they will find the magic formula and it will stabilize. Three weeks ago Rand had an nasty neurological episode when we were at the hospital, about to go in for a blood draw. He has these bouts often but not as tough and hard as this one was. He was nauseated, had chills and was gripped in pain. A "Code 44" went out over the speaker system and within seconds Rand was surrounded by nurses, technicians, LVNs, even security! He was embarrassed as the event had passed by that time. He saw the doctor, was declared fit as a fiddle and we went home. Whew!
His wonderful attitude and contentment continue to be a comfort to both of us. I don't know what I would do if he became unhappy and disillusioned with his situation. I still haven't given up on the idea that he may be able to come home to live some day, but in my brain I know that won't happen. In my heart I keep hoping that he will continue to recover sufficiently to make that a possibility.
Last night I returned from a ten day trip to Minnesota with stops in Fargo, North Dakota; my hometown of Owatonna, and in Minneapolis. I also took a day trip to see one of my college roommates whom I haven't seen in 35 years. What a joy that was! We talked like we hadn't seen each other since last week! I also saw two more of my college roomies and a bunch of my high school friends - some of whom I haven't seen in well over 40 years! Wheeeee! I wouldn't have missed that "girl's only" luncheon in Minneapolis for the world! What a great time we had. I also had a good time with my sister, aunt and uncle and made some goodly contributions to the Minnesota economy. Rand understood that he would have been bored to tears on this "girl's trip" so he was very happy to let me go alone. It was a grand adventure for me and I got a glorious welcome home today.
The next big project is to find an electric wheelchair for Rand with the controls in the back for me. So far I haven't had any luck. It looks like I might have to buy a regular electric wheelchair and have the controls moved/modified. Rand can not operate an electric chair safely as his vision, perception, danger zone sensibilities no longer function properly. He would be a danger to himself and others in a chair like that. I am coming to grips with the fact that I can't keep slinging that transport chair in and out of the back of the SUV without endangering myself. Even pushing Rand in his standard chair up and down ramps is becoming a real challenge for me as the whole package weighs about 300 pounds. So far, the best solution as I see it, is to get a minivan, modified with a ramp, kneeling capacity, lowered floor, safety locks for the chair in place of the passenger's seat, and the electric chair to go up and down the ramp and all around the town with ease. Rand agrees. Just getting me to accept that a minivan is the answer is a big step! I wanted a better solution but I guess this is it. If you know of anyone who has a rear-controlled power chair, please put them in touch with me as I have run up against an brick wall. The minivan is the easy part of this puzzle.
Speaking of puzzles, Rand has completed dozens of 200-300 piece puzzles and I've glued each one together. They are proudly stacked in his room and his puzzle supply is down to rock bottom. I asked if he wanted me to find more puzzles for him and he said no - I think he has had his fill! I wonder how he would like water colors, with an easel, drop cloth, etc. Any other ideas for him?
The speech generating device was approved in September by the insurance company - Wheeeeee! That means that they will pay for 80% of the cost including the wheelchair mounting. That is huge!! I haven't heard anything more about it, so I suppose the paper work is slowly grinding its way through channels. Pretty soon I will start hounding them to find out where everything stands. I'm anxious to get my hands on it and start the programming and training process.
Speaking of training, I have taken on five teacher interns this semester, coaching them through the first months of their careers. It is a challenge to say the least. One has already resigned and I'm concerned about at least one more. I have agreed to work with them this semester - we'll see how it goes and if I can or want to stay with it longer. Parts of it are fun but parts are an awful lot like work!
All is well. Rand is as handsome and sweet as ever. Please keep him close in your thoughts and prayers. Do stop by to see him - he loves to go for a walk and to show off the eight "Rand Elness Honorary Handicapped Curbs" on Antigua Drive! Keep those cards and letters coming.
Love,
Connie
Rand completed the "Saving Strokes" golf clinic two weeks ago and made so much progress in balance, confidence, accuracy and stamina. Lo and behold, he has been accepted into the program again and starts the next round on October 9, every week for four weeks! He grinned from ear to ear when I told him today! However, I haven't told Thuan yet - I hope he is as enthusiastic! Uff da.
Rand's blood thinning meds continue to be monitored every two weeks and adjusted as necessary. His blood thickness never stays constant - it fluctuates all the time and is hard to pin down. I keep hoping that they will find the magic formula and it will stabilize. Three weeks ago Rand had an nasty neurological episode when we were at the hospital, about to go in for a blood draw. He has these bouts often but not as tough and hard as this one was. He was nauseated, had chills and was gripped in pain. A "Code 44" went out over the speaker system and within seconds Rand was surrounded by nurses, technicians, LVNs, even security! He was embarrassed as the event had passed by that time. He saw the doctor, was declared fit as a fiddle and we went home. Whew!
His wonderful attitude and contentment continue to be a comfort to both of us. I don't know what I would do if he became unhappy and disillusioned with his situation. I still haven't given up on the idea that he may be able to come home to live some day, but in my brain I know that won't happen. In my heart I keep hoping that he will continue to recover sufficiently to make that a possibility.
Last night I returned from a ten day trip to Minnesota with stops in Fargo, North Dakota; my hometown of Owatonna, and in Minneapolis. I also took a day trip to see one of my college roommates whom I haven't seen in 35 years. What a joy that was! We talked like we hadn't seen each other since last week! I also saw two more of my college roomies and a bunch of my high school friends - some of whom I haven't seen in well over 40 years! Wheeeee! I wouldn't have missed that "girl's only" luncheon in Minneapolis for the world! What a great time we had. I also had a good time with my sister, aunt and uncle and made some goodly contributions to the Minnesota economy. Rand understood that he would have been bored to tears on this "girl's trip" so he was very happy to let me go alone. It was a grand adventure for me and I got a glorious welcome home today.
The next big project is to find an electric wheelchair for Rand with the controls in the back for me. So far I haven't had any luck. It looks like I might have to buy a regular electric wheelchair and have the controls moved/modified. Rand can not operate an electric chair safely as his vision, perception, danger zone sensibilities no longer function properly. He would be a danger to himself and others in a chair like that. I am coming to grips with the fact that I can't keep slinging that transport chair in and out of the back of the SUV without endangering myself. Even pushing Rand in his standard chair up and down ramps is becoming a real challenge for me as the whole package weighs about 300 pounds. So far, the best solution as I see it, is to get a minivan, modified with a ramp, kneeling capacity, lowered floor, safety locks for the chair in place of the passenger's seat, and the electric chair to go up and down the ramp and all around the town with ease. Rand agrees. Just getting me to accept that a minivan is the answer is a big step! I wanted a better solution but I guess this is it. If you know of anyone who has a rear-controlled power chair, please put them in touch with me as I have run up against an brick wall. The minivan is the easy part of this puzzle.
Speaking of puzzles, Rand has completed dozens of 200-300 piece puzzles and I've glued each one together. They are proudly stacked in his room and his puzzle supply is down to rock bottom. I asked if he wanted me to find more puzzles for him and he said no - I think he has had his fill! I wonder how he would like water colors, with an easel, drop cloth, etc. Any other ideas for him?
The speech generating device was approved in September by the insurance company - Wheeeeee! That means that they will pay for 80% of the cost including the wheelchair mounting. That is huge!! I haven't heard anything more about it, so I suppose the paper work is slowly grinding its way through channels. Pretty soon I will start hounding them to find out where everything stands. I'm anxious to get my hands on it and start the programming and training process.
Speaking of training, I have taken on five teacher interns this semester, coaching them through the first months of their careers. It is a challenge to say the least. One has already resigned and I'm concerned about at least one more. I have agreed to work with them this semester - we'll see how it goes and if I can or want to stay with it longer. Parts of it are fun but parts are an awful lot like work!
All is well. Rand is as handsome and sweet as ever. Please keep him close in your thoughts and prayers. Do stop by to see him - he loves to go for a walk and to show off the eight "Rand Elness Honorary Handicapped Curbs" on Antigua Drive! Keep those cards and letters coming.
Love,
Connie
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