I know, I know. I said I would talk about all the laughter around here, and I will. Soon. I promise.
But first, a postscript to my previous post:
It is important to emphasize the take-away of that last post. Here it is: Dean is completely cognitively functional. There is however, a critical need to develop his language skills; in this, he and Teri need our help. We were all afraid the words weren't there; now that we know the potential exists, it is our job to help Dean re-wire those damaged circuits and develop his vocabulary.
And of course you know, the best way to do that is to get him talking.
When you come to visit (and I think you should), engage him in conversation. Tell him stories, ask him questions that don't have a yes or no answer, an then, give him lots of time to respond. It takes so much work to get the thought in his head converted to an intelligible word that his tendency is to abandon the effort and flash you one of his very sweet smiles. Don't let him do that - ride his bony but and help him get the word out!
If you know the word he is trying to say, say it for him and with him until he can say it on his own. It will wear him out, but he's got to do it. If you aren't able to anticipate what he's trying to communicate, ask him to try again. He's got a terrific work ethic and if he knows your waiting, he'll keep trying. I've read that the way to trigger the brain to rebuild itself is by using the very systems that you need to develop. Want to talk? Talk more. (which is just what Dean needs to do -you can help - more on this later).
On my first evening in Venice, I learned from watching Grandma Jo, not to be satisfied with just a simple "Hi" from Dean. When she visits, she greets him by gently taking his hand in hers. She then looks him in the eye with a big warm smile on her face and gently repeats her name to him - "hi Jo" and again "hi Jo"- he tries and tries until he gets her name out so that we can recognize it. Then he laughs and laughs; he's just so tickled with himself. That laughter, my friend, is a complete and utter joy that you don't want to miss.
On that note, a big transition is about to take place in the Namba household.
Teri is returning to work this coming Wednesday. Dean is not able to be on his own yet and will need people to stay with him during the day.
How about you? Can you help out?
Already, Teri's mom, Maria, has graciously agreed to be Dean's caregiver for the first week or so.
Dean's brothers, Jim and Ralph are both planning to spend time down here. But many more volunteers are needed. You won't regret spending your day (or week) with Dean, he is a hoot and a half to hang with; though he is very busy with all the therapists coming to the house so you'll want to bring a book or something to occupy your time while he's busy re-training his brain to do all the simple things you and I take for granted.
If you are from the greater LA area, you already know what a great place Venice is. And, as you've seen from the blog pictures, Dean is always game for an outing. If you're like me, and need to take an airplane to get here, come and discover sunny Venice - it is beautiful and has a lot to offer. And -not to worry about lodging and such, there is a furnished guest room with a treadmill, your own private bathroom, cable TV and even a car for you to use. Did I mention it's only eight blocks to the beach?
So come on people, crack open those calendars and see when you are available. Got a little vacation time at work? Why don't you take that little vacation in Venice with the Nambas? You won't regret it - I guarantee it.
I'm serious about this, a hired caregiver just won't do for Dean Henry- he needs friends and family with him.
Teri has asked me to organize Dean's "care calendar," so please contact me if you can spend a day, a week or even a month with Dean. My email is: namba85@msn.com
I look forward to hearing from you ...
Saturday, October 10, 2009
Thursday, October 8, 2009
Cognitively Speaking
Have you been wondering about Dean's mental facilities?
I know I was.
To tell you the truth, when I first arrived here in sunny Venice, I was a little ... how to put it... unnerved, I guess. Dean can't speak easily. And the way his attempts at words come out as sounds and grunts, it sounds a little like he's mentally challenged. You'll be happy to know, that this is not the case in any way, shape, or form. Indeed, all is well with the mind of Dean Henry.
I have proof:
Last night while cooking dinner, I needed a lid and couldn't find one. Teri was out running an errand, so I asked Dean if he remembered where the lids were.
He pointed (and grunted) to the lower cupboard to the right of the stove.
I had already looked in that cupboard and didn't see any such lids in there.
In an act of faith (and a lot of hope), I decided to look again.
This time I got down on my hands and knees, moved things around, and sure enough in the back of the cupboard I was delighted to find a pile of lids.
I know it's not rocket science, but still.
He demonstrated recognition and memory.
Later, while watching a sitcom on TV, he laughed in all the appropriate places and even caught the more subtle humorous turns of the plot.
He impressed me again this evening. I asked him if he wanted to help me cook dinner; I was making a gourmet delight - baked beans and hot dogs- and figured he could at least help me stir. At first he declined and was content to watch the news. But after a bit, he changed his mind and made his way into the kitchen. Maybe the smell of the bacon cooking lured him; that was my plan anyhow.
First, he stirred the sauteing onions and bacon. Then when it was time to open the cans, he took over. This morning his OT taught him to open a can of tuna and he knew just what to do.
I held the opener on the can and he turned the crank until he determined the device had made the full circumference and that the lid was off. Of course he got it precisely right. After he opened the beans and put them in the pan, it was time to add the flavorings.
I told him what ingredients we needed - ketchup, mustard and brown sugar. Though it took great physical effort, he went to the appropriate location and found each item. He seemed to have a little trouble recognizing the ketchup, but when I asked him to look for something red, he went right to it.
As he added each ingredient to the pot, Dean easily figured out how to open the containers. Then he assessed and reassessed (remember he's a righty using his left hand now), how to pour it in, and make adjustments to his technique so he could add just the right amount. After the beans simmered for a bit, I had him taste for flavor. He deemed they were a bit bland and asked (read: pointed) for more chili powder. His assessment was correct and the beans were delicious after we added the extra spice.
Dean decided Riley should cook the hot dogs. While the boy did that masterfully, Dean took on the task of emptying the clean silverware basket from the dishwasher. He picked up each piece of flatware, studied it and placed it in the proper slot. Every once in awhile, he'd start to put a teaspoon with the soup spoons. But as soon as he the got teaspoon close to the larger soup spoons, he caught his error and made the adjustment.
After that job was done, he maneuvered his wheelchair out to the living room to rest for awhile.
When I asked him if he wanted to eat his beans with a fork or spoon, he shrugged his shoulders to say he didn't know. I replied, "Okay, guess we'll have to have both on the table then."
Guess who wheeled his way into the kitchen and put both forks and spoons next to the plates?
Yep, Dean Henry.
Keep in mind, all this was after both an OT and a PT session today. Each of which lasted for two hours and was jam packed with the work of re-learning all the simple tasks you and I take for granted. Not only is Dean firing on all chargers, he's determined.
I feel privileged, not to mention humbled, to be able to witness his impressive progress.
Next time I log in, I'll tell you about the rampant laughter and humor in this household. I only hope on can convey half of Dean's good cheer!
Until then,
~Bon
I know I was.
To tell you the truth, when I first arrived here in sunny Venice, I was a little ... how to put it... unnerved, I guess. Dean can't speak easily. And the way his attempts at words come out as sounds and grunts, it sounds a little like he's mentally challenged. You'll be happy to know, that this is not the case in any way, shape, or form. Indeed, all is well with the mind of Dean Henry.
I have proof:
Last night while cooking dinner, I needed a lid and couldn't find one. Teri was out running an errand, so I asked Dean if he remembered where the lids were.
He pointed (and grunted) to the lower cupboard to the right of the stove.
I had already looked in that cupboard and didn't see any such lids in there.
In an act of faith (and a lot of hope), I decided to look again.
This time I got down on my hands and knees, moved things around, and sure enough in the back of the cupboard I was delighted to find a pile of lids.
I know it's not rocket science, but still.
He demonstrated recognition and memory.
Later, while watching a sitcom on TV, he laughed in all the appropriate places and even caught the more subtle humorous turns of the plot.
He impressed me again this evening. I asked him if he wanted to help me cook dinner; I was making a gourmet delight - baked beans and hot dogs- and figured he could at least help me stir. At first he declined and was content to watch the news. But after a bit, he changed his mind and made his way into the kitchen. Maybe the smell of the bacon cooking lured him; that was my plan anyhow.
First, he stirred the sauteing onions and bacon. Then when it was time to open the cans, he took over. This morning his OT taught him to open a can of tuna and he knew just what to do.
I held the opener on the can and he turned the crank until he determined the device had made the full circumference and that the lid was off. Of course he got it precisely right. After he opened the beans and put them in the pan, it was time to add the flavorings.
I told him what ingredients we needed - ketchup, mustard and brown sugar. Though it took great physical effort, he went to the appropriate location and found each item. He seemed to have a little trouble recognizing the ketchup, but when I asked him to look for something red, he went right to it.
As he added each ingredient to the pot, Dean easily figured out how to open the containers. Then he assessed and reassessed (remember he's a righty using his left hand now), how to pour it in, and make adjustments to his technique so he could add just the right amount. After the beans simmered for a bit, I had him taste for flavor. He deemed they were a bit bland and asked (read: pointed) for more chili powder. His assessment was correct and the beans were delicious after we added the extra spice.
Dean decided Riley should cook the hot dogs. While the boy did that masterfully, Dean took on the task of emptying the clean silverware basket from the dishwasher. He picked up each piece of flatware, studied it and placed it in the proper slot. Every once in awhile, he'd start to put a teaspoon with the soup spoons. But as soon as he the got teaspoon close to the larger soup spoons, he caught his error and made the adjustment.
After that job was done, he maneuvered his wheelchair out to the living room to rest for awhile.
When I asked him if he wanted to eat his beans with a fork or spoon, he shrugged his shoulders to say he didn't know. I replied, "Okay, guess we'll have to have both on the table then."
Guess who wheeled his way into the kitchen and put both forks and spoons next to the plates?
Yep, Dean Henry.
Keep in mind, all this was after both an OT and a PT session today. Each of which lasted for two hours and was jam packed with the work of re-learning all the simple tasks you and I take for granted. Not only is Dean firing on all chargers, he's determined.
I feel privileged, not to mention humbled, to be able to witness his impressive progress.
Next time I log in, I'll tell you about the rampant laughter and humor in this household. I only hope on can convey half of Dean's good cheer!
Until then,
~Bon
Wednesday, October 7, 2009
Wednesday October 7th
Guest Blogger Bonnie signing in.
The best way to describe the feeling here at the Namba home in Venice is, peaceful.
Very peaceful.
Despite the fact that their lives have been completely derailed, Dean and Teri have begun to rebuild their new life in a most remarkable way.
Dean (I promise to elaborate more on his precise condition in a minute) appears to be completely at peace with the work he is to do. There is a sense of utter bliss about him that I wish we could all tap into. He is living in the moment, and taking each one as he can;
rebuilding those brain cells minute by minute, day by day.
Teri is completely devoted to helping Dean recover and re-learn all those pesky details that his left brain used to manage for him. Her energy is amazing and seemingly undying. I cannot think of a better person to help someone rebuild all those circuits that just a few months ago were swimming in a pool of blood.
When I arrived yesterday, Dean's OT, Pam, was teaching him how to fold laundry.
She had him stand at the kitchen table with his stronger left leg elevated on a phone book covered with duct tape (to keep his foot from sliding off) so that his weaker right leg could support his body. Not only does this stance build strength in the right leg, it also aids in re-circuiting the brain-reminding it, that yes, indeed, we do use that right leg!
With the laundry spread out on the table before him, his task was to reach for an article of clothing, spread it out, and then fold it - just like they do at the Gap. All the while Pam would ask him questions and, get this, he would answer!
" Dean, who's shirt is that?" A bit of a pause, "Mah - ree -ah's."
"Dean, who's pants are those?" wheels turning, "Riley's."
Then lots of laughter, because he could make those thoughts into words - the right words.
Not yet an easy accomplishment for Dean.
It was visibly tiring, but he folded the entire load.
To my amazement, after this work session, Dean was game to go out for dinner.
Just as the sun was beginning to set over the Pacific, the three of us (Riley just had to go to Grandma Jo's his first night back), headed into Santa Monica and went to Houston's for a lovely meal in a chic L.A. restaurant.
Imagine the courage that takes. Walking into a crowded restaurant.
Well, maybe I should explain walking for Dean these days.
Although he has the option of the wheelchair, he chose the cane for this outing. That means something like this: Cane in left hand, right arm hanging rather useless in a brace at his side. First, he places the cane where he wants it. Then he drags the right foot forward, cane again, then the left foot. Or, something like that. The point is, it's a slow and thoughtful process. Each step is planned with care and great focus.
Yet, Dean walked through that restaurant like a champ.
Teri at his side, the whole way, making sure the path was safe and clear.
We had a terrific meal, with terrific conversation.
Dean had sushi - which he ate with chopsticks.
Pretty amazing my friends, pretty amazing.
Oh - do I dare mention that Dean and Teri carried on like newlyweds at dinner?
Kissing and holding hands - so happy to be in each other's company and so happy to be out in the real world.
As you can tell, it was a wonderful evening.
The best way to describe the feeling here at the Namba home in Venice is, peaceful.
Very peaceful.
Despite the fact that their lives have been completely derailed, Dean and Teri have begun to rebuild their new life in a most remarkable way.
Dean (I promise to elaborate more on his precise condition in a minute) appears to be completely at peace with the work he is to do. There is a sense of utter bliss about him that I wish we could all tap into. He is living in the moment, and taking each one as he can;
rebuilding those brain cells minute by minute, day by day.
Teri is completely devoted to helping Dean recover and re-learn all those pesky details that his left brain used to manage for him. Her energy is amazing and seemingly undying. I cannot think of a better person to help someone rebuild all those circuits that just a few months ago were swimming in a pool of blood.
When I arrived yesterday, Dean's OT, Pam, was teaching him how to fold laundry.
She had him stand at the kitchen table with his stronger left leg elevated on a phone book covered with duct tape (to keep his foot from sliding off) so that his weaker right leg could support his body. Not only does this stance build strength in the right leg, it also aids in re-circuiting the brain-reminding it, that yes, indeed, we do use that right leg!
With the laundry spread out on the table before him, his task was to reach for an article of clothing, spread it out, and then fold it - just like they do at the Gap. All the while Pam would ask him questions and, get this, he would answer!
" Dean, who's shirt is that?" A bit of a pause, "Mah - ree -ah's."
"Dean, who's pants are those?" wheels turning, "Riley's."
Then lots of laughter, because he could make those thoughts into words - the right words.
Not yet an easy accomplishment for Dean.
It was visibly tiring, but he folded the entire load.
To my amazement, after this work session, Dean was game to go out for dinner.
Just as the sun was beginning to set over the Pacific, the three of us (Riley just had to go to Grandma Jo's his first night back), headed into Santa Monica and went to Houston's for a lovely meal in a chic L.A. restaurant.
Imagine the courage that takes. Walking into a crowded restaurant.
Well, maybe I should explain walking for Dean these days.
Although he has the option of the wheelchair, he chose the cane for this outing. That means something like this: Cane in left hand, right arm hanging rather useless in a brace at his side. First, he places the cane where he wants it. Then he drags the right foot forward, cane again, then the left foot. Or, something like that. The point is, it's a slow and thoughtful process. Each step is planned with care and great focus.
Yet, Dean walked through that restaurant like a champ.
Teri at his side, the whole way, making sure the path was safe and clear.
We had a terrific meal, with terrific conversation.
Dean had sushi - which he ate with chopsticks.
Pretty amazing my friends, pretty amazing.
Oh - do I dare mention that Dean and Teri carried on like newlyweds at dinner?
Kissing and holding hands - so happy to be in each other's company and so happy to be out in the real world.
As you can tell, it was a wonderful evening.
Monday, September 21, 2009
Monday, September 21
Last Sunday morning
The Sunshine felt like rain
Week before
They all seemed the same
With the help of God and true friends
I come to realize
I still had two strong legs
And even wings to fly
Voice over, please:
Patterns: Websters defines "patterns" as: a) person or thing worthy of imitation or b) a model or plan used in making things; and c) a regular way of acting or doing.
So we buy patterns to create beautiful things like clothes or oragami and then there are the patterns we grow up with, some of which, we (collective we and not necessarily me) that we spend tons of money trying to change and there are those we see and try desperately to imitate.
This life's experience has certainly exposed some patterns for me and yes some of which I not only want to change but some that need change and some of which I treasure. I probably do not need to go into detail of those patterns I guess just that I am more aware of them is enough, for now.
A few therapy sessions ago Kwan and Pam brouth in a guest physical therapist and he was of the opinion that Dean should be using a cane instead of a walker. He saw that Dean had pretty good posture and since he is a lot closer to the ground than someone 6'2" and his balance was improving quite a bit that a cane would be better for him and Kwan and Pam agreed as long as Dean did not show signs of forgetting about his right side and relying solely on his left side for strength and movement.
Saturday evening May and I were talking on the phone and I asked Deano if he wanted to say hi to his Mom and he nodded yes and I could see that he was trying very hard to form words with his mouth. I said wait Dean let me give you the phone first. I put the phone to Dean's ear and out of his mouth came the words "Hi Mom". Now keep in mind it did not sound like the Deano that I am more familiar with but it was very clear what he was saying. And after I was done screaming and jumping up and down I got back on the phone to make sure that May heard what I heard and she said she heard it loud and clear. So like a baby who first hears their sounds, he can now begin to build on those sounds.
Last Thursday, Dean had and appt. with a new neurologist, who will now be following his condition. Dean was taken on the Sinemet and replaced with a drug that is currently being used for dementia patients. Here is the kicker, insurance did not approve the use of this drug for Deano since it is experimental for brain injury patients. Now the Dr. will have to write an appeal to the insurance company explaining his reason for prescribing this medication. The use of this drug for Deano is to help speed up the recovery of the brain cells. Other than that we are currently doing everything for Deano that can possibly be done.
I have spoken with the administrator of "Rehab without Walls" to see if there is a more aggressive course of action that could be taken for the recovery of Deans ability to use language as a means of communication. They are investigating and will follow up with us.
In the mean time it appears the Dean is in good spirit and and continues to laugh a lot and as the speech therapist observed this morning with more sound.
And oh I ain't wastin time no more
'Cause time goes by like hurricanes
The Sunshine felt like rain
Week before
They all seemed the same
With the help of God and true friends
I come to realize
I still had two strong legs
And even wings to fly
Voice over, please:
Patterns: Websters defines "patterns" as: a) person or thing worthy of imitation or b) a model or plan used in making things; and c) a regular way of acting or doing.
So we buy patterns to create beautiful things like clothes or oragami and then there are the patterns we grow up with, some of which, we (collective we and not necessarily me) that we spend tons of money trying to change and there are those we see and try desperately to imitate.
This life's experience has certainly exposed some patterns for me and yes some of which I not only want to change but some that need change and some of which I treasure. I probably do not need to go into detail of those patterns I guess just that I am more aware of them is enough, for now.
A few therapy sessions ago Kwan and Pam brouth in a guest physical therapist and he was of the opinion that Dean should be using a cane instead of a walker. He saw that Dean had pretty good posture and since he is a lot closer to the ground than someone 6'2" and his balance was improving quite a bit that a cane would be better for him and Kwan and Pam agreed as long as Dean did not show signs of forgetting about his right side and relying solely on his left side for strength and movement.
Saturday evening May and I were talking on the phone and I asked Deano if he wanted to say hi to his Mom and he nodded yes and I could see that he was trying very hard to form words with his mouth. I said wait Dean let me give you the phone first. I put the phone to Dean's ear and out of his mouth came the words "Hi Mom". Now keep in mind it did not sound like the Deano that I am more familiar with but it was very clear what he was saying. And after I was done screaming and jumping up and down I got back on the phone to make sure that May heard what I heard and she said she heard it loud and clear. So like a baby who first hears their sounds, he can now begin to build on those sounds.
Last Thursday, Dean had and appt. with a new neurologist, who will now be following his condition. Dean was taken on the Sinemet and replaced with a drug that is currently being used for dementia patients. Here is the kicker, insurance did not approve the use of this drug for Deano since it is experimental for brain injury patients. Now the Dr. will have to write an appeal to the insurance company explaining his reason for prescribing this medication. The use of this drug for Deano is to help speed up the recovery of the brain cells. Other than that we are currently doing everything for Deano that can possibly be done.
I have spoken with the administrator of "Rehab without Walls" to see if there is a more aggressive course of action that could be taken for the recovery of Deans ability to use language as a means of communication. They are investigating and will follow up with us.
In the mean time it appears the Dean is in good spirit and and continues to laugh a lot and as the speech therapist observed this morning with more sound.
And oh I ain't wastin time no more
'Cause time goes by like hurricanes
Friday, September 11, 2009
Friday, September 11
Gotta make a change
For once in my life
It's gonna feel real good
Gonna make a difference
Gonna make it right
Who am I to be blind
Pretending not to see their needs
A summer's disregard
A broken bottle top
And a one man's soul
They follow each other
On the wind ya' know'
Cause they got nowhere to go
At times as I type I can hear the sound over reading as I type so today I am feeling kind of like Carrie Bradshaw of "Sex and the City" or maybe even Julie of "Julie & Julia".
So I ask the question which comes first the chicken or the egg:
One of our field trips was to the grocery market and Pam (occupational therapy) had Dean pushing the grocery cart up and down isles to locate items on our grocery list. It took approximately 1-1/2 hours to obtain maybe 12 items so I wonder was this a wake up call to slow down or are we slowing down only long enough to let this pass????????
As we cruised down the baby isle of the grocery market and I had time to notice various items down that isle I was drawn to the baby food and wondered "does a baby need baby food to strengthen their swallow muscles as does some brain injury patients or is it as simple as their teeth have not yet developed. The other thought that occurred to me is all the learned behavior that happens from birth on and all the things that are just taken for granted. Who knew, after all, that swallowing required muscle tone. Certainly not I. (me sounds much better and as I processed this I believe "I" is correct).
Since we last met we have taken quite a few field trips one of which was to "Chuck E Cheese". Did I always worry whether or not someone would be bothered that it took us to long to cross a parking lot or did we just rush across so we would not have to worry about someone else's feelings. On that particular day we found that everyone in the parking lot that day was quite generous. So was there generosity because it happened to be the Friday before a holiday or are people more generous than I ever gave them credit for???(oops another preposition at the end of a sentence - to bad; to sad or if you prefer tough toodles with noodles. Either one works for me).
This morning we went to the beach with Kwan the occupational therapist. Dean walked with his walker (no chair) and jumped some hurdles. Not really hurdles although for him it probably seemed like the curbs were some pretty intense hurdles. Deano even got to put his feet in the sand. I have to say again how amazed I am that stroke is so common. Every time I talk to someone they have been touched personally or they have stories of someone who has suffered a stroke. Today at the beach while Kwan was assisting Deano, a man walking a dog approached us to let us know that the sand was great therapy for stroke patients. His 60 year old father had had a stroke and the man took his father to the beach to have him walk in the soft and hard sand to help him regain the ability to walk and he said his father is back to prestroke walking. Back to the Chuck E Cheese outing, as Deano was crossing the parking lot and cars were waiting for him to cross a woman told me I should rub his feet and explaining certain pressure points. Just amazing.
So again I ask were we just not paying attention???
As I have shared probably to many times we are the very proud parents of a 4th grader. And what that means is all the activity that goes along with back to school, ie, fund raisers, festivals, volunteer work and all that fabulous stuff that one hopes will give a child a good foundation. Anyway September 2 was registration and September 10 was "Back to School" night. I left it up to Dean as to whether or not he wanted to participate and of course he wouldn't miss it. I was thinking maybe he might not be ready to be around so many people or that it may be way to exhausting for him and maybe a little uncomfortable. What I found as we approached the school on registration day that I had a whole bunch of trepidation. The cause of my anxiety was rampant and ranging from jealousy, maybe a little anger and so many other things. I found that maybe we don't have what other families have in the way or normalcy, and then again what really is normal. I definitely had a strong sense of vulnerability because Deano appears so vulnerable. I guess suffice to say just a whole lot of emotion in those moments as we presented ourselves to the world.
So have these feelings always been there or are they new???
Deano has been in therapy with "Rehab Without Walls" for 3 weeks now and the therapist has all commented on Dean's perseverance and determination and that in just 3 weeks he has made a lot of progress. The speech therapist seems to think Dean is ready for another swallow test and that she is confident it may go well for him this time around and she is consistently working on getting sound out of Dean.
The Dnyno Vox was approved by insurance and delivered today. For those of you who don't remember it is a computer that can act as Dean's voice as he works to find his voice. Any computer techs out there because I know how to take it out of the box and that is about it.
So we are continuing on this journey and we have all shared some really special moments along the way. It makes my heart smile when I hear Dean and Riley laughing together and that seems to be happening more and more.
I don't think I am done writing yet and I wont leave without saying goodbye.
So until next time.
That's why I want you to know
I'm starting with the man in the mirror
I'm asking him to change his ways
And no message could have been any clearer
If you wanna make the world a better place
Take a look at yourself and then make a change,
I've been a victim of A selfish kinda love
It's time that I realize
There are some with no home
P.S. Tim guess who I am going to be seeing tonight at a meeting for our Fall Festival. Heicke Macklin, Manford's sister. Such a small world or as she said just six degrees.
For once in my life
It's gonna feel real good
Gonna make a difference
Gonna make it right
Who am I to be blind
Pretending not to see their needs
A summer's disregard
A broken bottle top
And a one man's soul
They follow each other
On the wind ya' know'
Cause they got nowhere to go
At times as I type I can hear the sound over reading as I type so today I am feeling kind of like Carrie Bradshaw of "Sex and the City" or maybe even Julie of "Julie & Julia".
So I ask the question which comes first the chicken or the egg:
One of our field trips was to the grocery market and Pam (occupational therapy) had Dean pushing the grocery cart up and down isles to locate items on our grocery list. It took approximately 1-1/2 hours to obtain maybe 12 items so I wonder was this a wake up call to slow down or are we slowing down only long enough to let this pass????????
As we cruised down the baby isle of the grocery market and I had time to notice various items down that isle I was drawn to the baby food and wondered "does a baby need baby food to strengthen their swallow muscles as does some brain injury patients or is it as simple as their teeth have not yet developed. The other thought that occurred to me is all the learned behavior that happens from birth on and all the things that are just taken for granted. Who knew, after all, that swallowing required muscle tone. Certainly not I. (me sounds much better and as I processed this I believe "I" is correct).
Since we last met we have taken quite a few field trips one of which was to "Chuck E Cheese". Did I always worry whether or not someone would be bothered that it took us to long to cross a parking lot or did we just rush across so we would not have to worry about someone else's feelings. On that particular day we found that everyone in the parking lot that day was quite generous. So was there generosity because it happened to be the Friday before a holiday or are people more generous than I ever gave them credit for???(oops another preposition at the end of a sentence - to bad; to sad or if you prefer tough toodles with noodles. Either one works for me).
This morning we went to the beach with Kwan the occupational therapist. Dean walked with his walker (no chair) and jumped some hurdles. Not really hurdles although for him it probably seemed like the curbs were some pretty intense hurdles. Deano even got to put his feet in the sand. I have to say again how amazed I am that stroke is so common. Every time I talk to someone they have been touched personally or they have stories of someone who has suffered a stroke. Today at the beach while Kwan was assisting Deano, a man walking a dog approached us to let us know that the sand was great therapy for stroke patients. His 60 year old father had had a stroke and the man took his father to the beach to have him walk in the soft and hard sand to help him regain the ability to walk and he said his father is back to prestroke walking. Back to the Chuck E Cheese outing, as Deano was crossing the parking lot and cars were waiting for him to cross a woman told me I should rub his feet and explaining certain pressure points. Just amazing.
So again I ask were we just not paying attention???
As I have shared probably to many times we are the very proud parents of a 4th grader. And what that means is all the activity that goes along with back to school, ie, fund raisers, festivals, volunteer work and all that fabulous stuff that one hopes will give a child a good foundation. Anyway September 2 was registration and September 10 was "Back to School" night. I left it up to Dean as to whether or not he wanted to participate and of course he wouldn't miss it. I was thinking maybe he might not be ready to be around so many people or that it may be way to exhausting for him and maybe a little uncomfortable. What I found as we approached the school on registration day that I had a whole bunch of trepidation. The cause of my anxiety was rampant and ranging from jealousy, maybe a little anger and so many other things. I found that maybe we don't have what other families have in the way or normalcy, and then again what really is normal. I definitely had a strong sense of vulnerability because Deano appears so vulnerable. I guess suffice to say just a whole lot of emotion in those moments as we presented ourselves to the world.
So have these feelings always been there or are they new???
Deano has been in therapy with "Rehab Without Walls" for 3 weeks now and the therapist has all commented on Dean's perseverance and determination and that in just 3 weeks he has made a lot of progress. The speech therapist seems to think Dean is ready for another swallow test and that she is confident it may go well for him this time around and she is consistently working on getting sound out of Dean.
The Dnyno Vox was approved by insurance and delivered today. For those of you who don't remember it is a computer that can act as Dean's voice as he works to find his voice. Any computer techs out there because I know how to take it out of the box and that is about it.
So we are continuing on this journey and we have all shared some really special moments along the way. It makes my heart smile when I hear Dean and Riley laughing together and that seems to be happening more and more.
I don't think I am done writing yet and I wont leave without saying goodbye.
So until next time.
That's why I want you to know
I'm starting with the man in the mirror
I'm asking him to change his ways
And no message could have been any clearer
If you wanna make the world a better place
Take a look at yourself and then make a change,
I've been a victim of A selfish kinda love
It's time that I realize
There are some with no home
P.S. Tim guess who I am going to be seeing tonight at a meeting for our Fall Festival. Heicke Macklin, Manford's sister. Such a small world or as she said just six degrees.
Tuesday, September 1, 2009
Tuesday, September 1
I am happy to see you are still out there. Thanks for the words of encouragement and they do get me through some days.
Dean is looking very healthy and that was confirmed by our family Dr. who just did blood work on Deano. His liver and kidney function is great and everything looks good on his blood panel. We will be seeing a neurologist on the 17th of this month and that will be interesting to see how he has progressed in that area.
Kwan (Physical Therapy) suggested we have an outing today. Some place with air conditioning (it was miserable hot at the beach today so I can only imagine what it was like in the Valleys). Dean chose Barnes & Noble and we took the field trip with only his walker. Even in the air conditioning, beads of sweat were dripping from Deano's face. By the time we made it home, he went straight to bed without passing Go.
Tomorrow our outing will be with Pam (Occupational Therapy) to the grocery market.
Well Riley starts school one week from tomorrow and he is (shall we say) physically ready, meaning he has everything he needs to start, ie. supplies, new uniforms, shoes and backpack. Now mentally is a whole different story. Can you believe 4th grade. Did I talk about this already (so sorry) I guess I am the one that cannot believe 4th grade.
We need your prayers now more than ever.
Until we meet again.
Dean is looking very healthy and that was confirmed by our family Dr. who just did blood work on Deano. His liver and kidney function is great and everything looks good on his blood panel. We will be seeing a neurologist on the 17th of this month and that will be interesting to see how he has progressed in that area.
Kwan (Physical Therapy) suggested we have an outing today. Some place with air conditioning (it was miserable hot at the beach today so I can only imagine what it was like in the Valleys). Dean chose Barnes & Noble and we took the field trip with only his walker. Even in the air conditioning, beads of sweat were dripping from Deano's face. By the time we made it home, he went straight to bed without passing Go.
Tomorrow our outing will be with Pam (Occupational Therapy) to the grocery market.
Well Riley starts school one week from tomorrow and he is (shall we say) physically ready, meaning he has everything he needs to start, ie. supplies, new uniforms, shoes and backpack. Now mentally is a whole different story. Can you believe 4th grade. Did I talk about this already (so sorry) I guess I am the one that cannot believe 4th grade.
We need your prayers now more than ever.
Until we meet again.
Friday, August 28, 2009
Friday, August 28
To Everything, Turn, Turn, Turn
There is a season (and what a season it has been)
And a time to every purpose, under Heaven;
A time to be born, a time to die;
A time to plant, a time to reap;
A time to kill, a time to heal (killing happens in a lot of different ways)
A time to laugh, a time to weep
Honey, I'm home
My goodness it seems a lifetime has passed and the truth is maybe it has or is in the process of doing so and what if that is exactly what needed to happen. "What if"?
I have wanted to come to this place and share with you all the progress Dean has been making. It seems as though my feet hit the floor running in the am and before I know it I am closing everything down for bed time.
This was definitely a much greater task than I imagined.
Funny, I bought a no brainer fun book to read, the title of which for some reason I cannot even remember right now to escape for short periods of time during the day. The funny thing was the main character, Addie Downs, has weight issues and her brother when he was in high school was in a car accident and suffered brain damage and Addie assumed the responsibility of caring for her brother after both the parents passed. Coincidence or happenstance, (things that make you go hmmmm).
This pass week has been quite the challenge (yes, more so than past ones). Riley's 40gallon fish tank leaked and it took me 3 hours to get that all cleaned up. I had to call a plumber and they hydro something'd the pipes and there was water coming from everywhere in the bathroom during the process. Can you believe I had to throw away my hair dryer, curling iron and flat iron. Now, like it or not hair is wash and wear and yes that was the worst part of it all (well not really and it sounded good, don't you think).
Rehab without Walls has put together a really fabulous team for Deano, consisting of Louise for Speech, Kwan for Physical, Pam for Occupational and Ibis the Social Worker. Verdict is still out on the social worker. I guess at this point I just don't get it. Today I asked Deano if he liked the Speech Therapist and he said no. She is definetly the least patient with him and difficult to see progress. Next week we will go on a field trip with Pam to the grocery market so Dean can pick-up some things so he and Riley can make Milk Shakes together. We will try and take some field trips with Ry to the park or something to play catch or basket ball before back to school gets here. Which, by the way is September 9. My little superstar will be in the 4th grade.
Oh, did you notice our computer is working. Strange thing when the fish tank leaked I tore Riley's room apart and used the opportunity to rearrange and that includes the computer. I put it all back together and the mouse is working and the fax machine is also working. Amazing what we are capable of.
I now have 6 weeks and 2 days before returning to work. I am really needing some more miracles to happen for us in Dean's recovery so we can get a more clear picture of what long term care will look like for Deano.
I tell you there are days when I just know that he will recover and even if not 100% close to it and then I watch him struggle through things we (collective we) take for granted. The thought that goes into taking the next step, into brushing his teeth, into pointing to a hammer. Then I wonder what is in store for us all (meaning the California Namba's). Maybe not time for me to know.
The other observation I made not long ago, no matter how far or fast you run, aspects of yourself will still be there. I see that in Dean and how sometimes he will do without first listening for instruction and I think I remember that and he is not the only one. I see that when I want to tell him "Dean you aren't trying hard enough" (Hard enough for who?). And then I see when he goes down for a nap or for the evening and the efforts of the day are visible. Anyway, just observation.
Dean was weighed today and he is holding steady at 151.8. I would like to see him gain 15 lbs and a little challenging right now because the swallowing is still an issue. I can only get so much osmolite into his body a day. Kinda of a catch 22, the more he swallows the stronger the muscles will get for swallowing and his swallow isn't strong enough to stop the feeding tube. Today, he had scrambled eggs and toast with oj (and thick-it) for breakfast, 3 cans of osmolite for lunch and for dinner some pasta with chicken, and asparagus and for the most important meal, dessert, chocolate pudding. Now I will wait a couple of days before giving him so many meals to make sure there were no problems.
I am now taking Deano for acupuncture treatments every Saturday. Ideal would be twice a week but they want him to have a day off so right now just on Saturdays.
Is anyone still out there.
A time to build, a time to break down (and according to Mama Namba, not my time for the latter - she says she will let me no when the time comes and I am waiting);
A time to dance, a time to mourn;
A time to gain, a time to lose
A time to time for love, a time for hate
A time for peace, I swear it's not too late (And that my friends is the truth I pray for)
There is a season (and what a season it has been)
And a time to every purpose, under Heaven;
A time to be born, a time to die;
A time to plant, a time to reap;
A time to kill, a time to heal (killing happens in a lot of different ways)
A time to laugh, a time to weep
Honey, I'm home
My goodness it seems a lifetime has passed and the truth is maybe it has or is in the process of doing so and what if that is exactly what needed to happen. "What if"?
I have wanted to come to this place and share with you all the progress Dean has been making. It seems as though my feet hit the floor running in the am and before I know it I am closing everything down for bed time.
This was definitely a much greater task than I imagined.
Funny, I bought a no brainer fun book to read, the title of which for some reason I cannot even remember right now to escape for short periods of time during the day. The funny thing was the main character, Addie Downs, has weight issues and her brother when he was in high school was in a car accident and suffered brain damage and Addie assumed the responsibility of caring for her brother after both the parents passed. Coincidence or happenstance, (things that make you go hmmmm).
This pass week has been quite the challenge (yes, more so than past ones). Riley's 40gallon fish tank leaked and it took me 3 hours to get that all cleaned up. I had to call a plumber and they hydro something'd the pipes and there was water coming from everywhere in the bathroom during the process. Can you believe I had to throw away my hair dryer, curling iron and flat iron. Now, like it or not hair is wash and wear and yes that was the worst part of it all (well not really and it sounded good, don't you think).
Rehab without Walls has put together a really fabulous team for Deano, consisting of Louise for Speech, Kwan for Physical, Pam for Occupational and Ibis the Social Worker. Verdict is still out on the social worker. I guess at this point I just don't get it. Today I asked Deano if he liked the Speech Therapist and he said no. She is definetly the least patient with him and difficult to see progress. Next week we will go on a field trip with Pam to the grocery market so Dean can pick-up some things so he and Riley can make Milk Shakes together. We will try and take some field trips with Ry to the park or something to play catch or basket ball before back to school gets here. Which, by the way is September 9. My little superstar will be in the 4th grade.
Oh, did you notice our computer is working. Strange thing when the fish tank leaked I tore Riley's room apart and used the opportunity to rearrange and that includes the computer. I put it all back together and the mouse is working and the fax machine is also working. Amazing what we are capable of.
I now have 6 weeks and 2 days before returning to work. I am really needing some more miracles to happen for us in Dean's recovery so we can get a more clear picture of what long term care will look like for Deano.
I tell you there are days when I just know that he will recover and even if not 100% close to it and then I watch him struggle through things we (collective we) take for granted. The thought that goes into taking the next step, into brushing his teeth, into pointing to a hammer. Then I wonder what is in store for us all (meaning the California Namba's). Maybe not time for me to know.
The other observation I made not long ago, no matter how far or fast you run, aspects of yourself will still be there. I see that in Dean and how sometimes he will do without first listening for instruction and I think I remember that and he is not the only one. I see that when I want to tell him "Dean you aren't trying hard enough" (Hard enough for who?). And then I see when he goes down for a nap or for the evening and the efforts of the day are visible. Anyway, just observation.
Dean was weighed today and he is holding steady at 151.8. I would like to see him gain 15 lbs and a little challenging right now because the swallowing is still an issue. I can only get so much osmolite into his body a day. Kinda of a catch 22, the more he swallows the stronger the muscles will get for swallowing and his swallow isn't strong enough to stop the feeding tube. Today, he had scrambled eggs and toast with oj (and thick-it) for breakfast, 3 cans of osmolite for lunch and for dinner some pasta with chicken, and asparagus and for the most important meal, dessert, chocolate pudding. Now I will wait a couple of days before giving him so many meals to make sure there were no problems.
I am now taking Deano for acupuncture treatments every Saturday. Ideal would be twice a week but they want him to have a day off so right now just on Saturdays.
Is anyone still out there.
A time to build, a time to break down (and according to Mama Namba, not my time for the latter - she says she will let me no when the time comes and I am waiting);
A time to dance, a time to mourn;
A time to gain, a time to lose
A time to time for love, a time for hate
A time for peace, I swear it's not too late (And that my friends is the truth I pray for)
P.S. Thank you to Mike Sweeney for taking Dean to the pier and spending time with him. When he got home I could tell he really enjoyed being out
with you
P.S.S. Thank you to Adam and Kathleen Chammorro for taking Riley into your home as we were adjusting to Deano at home with us and for taking down the screen door. Much easier for us to get in and out.
P.S.S.S Thank you to Scott for including Riley on your outings this past week. He really needed time outside of the house and he truly enjoyed himself
And continued thanks to Grandma Jo who comes several times during the week so I can take a break and to my Mom for coming during the week to check-up on us and to my sisters for being sisters. And to my brother for all the hard work in taking out the bamboo. So many have commented on its absence.
Friday, August 14, 2009
Friday, August 14,
Today I thought it would be nice for us all to take a field trip to the movies. Now I am really not sure at times how much Deano can understand so the picking of a movie was a bit of a challenge. Of course Riley wanted to see something with a lot of action and the more things getting blown up the better. Now I thought it has been along time since Dean has been out and probably not a good idea to start him off with shoot m' ups. Now the thing is I needed to pick a family movie; something safe for Riley. I chose "Julia & Julie". Riley certainly was not happy with that decision and taking that into consideration he was, or shall I say, he tried to be a good sport about it. The show started at 10:40 am so that seemed pretty safe, not to crowded. Well into the movie Riley announced he had to use the restroom and I missed what seemed like a very important part of the movie. And just when I got comfortable again Deano signaled to me that he had to use the restroom. I took this as a sign (didn't feel real comfortable with the word "omen") that the movie was probably not the best idea at this time. I asked Dean if he enjoyed the movie and he told me no (in his way). My response to him was "You always liked the Movies". A couple of things occurred to me in that moment: 1) It is possible that Julia and Julie is a chick flick (no offense intended), 2) It is very possible that Dean may not like things he used to like and visa versa and 3) I was hoping this field trip would be good because I really needed to get out.
I am very excited about the new program that Deano will be starting on Monday, Rehab without Walls. It comes highly recommended from Long Beach Memorial and after our two week hiatus, it is about time. On Monday at 11:00 am we will have our first (I don't know, visitor does not seem like the correct use of the word and since I cannot think of anything else right now, we will have to go with it) visitor from Rehab, who will admit Deano; then at 5:00 pm we will be meeting with a social worker. On Tuesday at 10 am Dean meets with the speech therapist for an 1-1/2 evaluation and at 12 noon with the occupational therapist. On Wednesday he will meet with the physical therapist and on Thursday at 10am the speech therapist and at noon the occupational and physical therapist will double team Deano, (sounds like they mean business).
We are trying to get back to some sense of normalcy (is that even a word - I am going with it) like reading to Riley at night in bed which Riley really enjoys, saying our prayers together and little things like that (the things that matter most and their importance forgotten until gone or modified).
We are working with Deano to utilize his walker (at home) more than his wheel chair. He has gone from dragging his right foot to lifting and placing his right foot and more independent on transfers from one location to another. Riley has taken over the duties of assisting Deano in and out of the car and they seem to have a pretty good system worked out.
If you will allow me this one moment (oh I forgot I am the one typing and these moments are all mine - humor me): I grew up around a wheel chair (my Aunt Sylvia is paralyzed) and I am familiar with putting them in and out of any vehicle and really that is one thing (I know I know there are so many) that I do not like.
Well computer cooperated again today - so before I run out of luck I will say good night for now.
I am very excited about the new program that Deano will be starting on Monday, Rehab without Walls. It comes highly recommended from Long Beach Memorial and after our two week hiatus, it is about time. On Monday at 11:00 am we will have our first (I don't know, visitor does not seem like the correct use of the word and since I cannot think of anything else right now, we will have to go with it) visitor from Rehab, who will admit Deano; then at 5:00 pm we will be meeting with a social worker. On Tuesday at 10 am Dean meets with the speech therapist for an 1-1/2 evaluation and at 12 noon with the occupational therapist. On Wednesday he will meet with the physical therapist and on Thursday at 10am the speech therapist and at noon the occupational and physical therapist will double team Deano, (sounds like they mean business).
We are trying to get back to some sense of normalcy (is that even a word - I am going with it) like reading to Riley at night in bed which Riley really enjoys, saying our prayers together and little things like that (the things that matter most and their importance forgotten until gone or modified).
We are working with Deano to utilize his walker (at home) more than his wheel chair. He has gone from dragging his right foot to lifting and placing his right foot and more independent on transfers from one location to another. Riley has taken over the duties of assisting Deano in and out of the car and they seem to have a pretty good system worked out.
If you will allow me this one moment (oh I forgot I am the one typing and these moments are all mine - humor me): I grew up around a wheel chair (my Aunt Sylvia is paralyzed) and I am familiar with putting them in and out of any vehicle and really that is one thing (I know I know there are so many) that I do not like.
Well computer cooperated again today - so before I run out of luck I will say good night for now.
Wednesday, August 12, 2009
Wednesday, August 12
My gosh how time flies when you are in the middle of falling apart.
Some bloggers have reminded me how long it has been since last we communicated (I guess this is a form of communication. Don't you think?).
First let me start with the excuse for why I have been away so long. See we have two computers at home and neither one of them seems to be working. (Although since I am blogging right at the moment it would appear that I got the laptop to cooperate). The home computer, if I had to guess and since Dean is really not feeling like working on my issues right now so I do have to guess. Anyway, my guess would be we need a new hard drive. And I am guessing that because we have 4 mice (they would be mice right? and not mouses?) and not one of the damn mice/mouses wants to do its job. So that is my excuse.
Many of you probably know that Deano is now home and has been since July 30, 2009.
Dean being home certainly has brought with it some challenges.
For instance, continued therapy was supposed to have been set up upon Dean's discharge from the hospital and now we are going on 2 weeks at home and rehab therapy has just started. Now I am not a therapist nor am I a nurse and there have been so many times that I have felt that I am doing a terrible disservice to Deano. Example, I had no idea that Deano was ready to actually lift his right leg while in his walker rather than slide. So after the first visit from the physical therapist Deano is now practicing what we like to call "Lift and Lock", which means the lifting of his right leg and locking his knee to support the walking motion.
Deano has also learned some new arm lessons from the occupational therapist.
I do have to admit to you all out there: There was truly something special about the staff at Long Beach Memorial. There techniques just seem superior.
Riley and I are certainly trying new ways to incorporate Dean back into life at home, taking into consideration his new abilities. Deano has been outside watering and using the vacuum cleaner quite nicely.
Suffice to say we have crossed the line of the first Marathon our family has run together. Deano is healthy and at home. So now we embark on a new race and as I suspected probably more difficult than the one we just completed. This one brings with it challenges that I not only could not have anticipated/ I could not have trained and prepared in anyway (well that may be debatable and for now lets just say I am correct).
See through out this journey I have seriously contemplated our wedding vows, more specifically that part that says "In sickness and in health". I really believed that if my spouse got the flu or a cold I would take him chicken soup and aspirin in bed. Never once when I spoke those vows did I dream it would be a stroke and that I would temporarily stop working to become a full time nurse and therapist. See, in my opinion anyway, when you are those roles it doesn't allow for other things in a marriage, like being a woman or a mom or a wife.
I truly believed when we got Dean home I would no longer have to worry about his well being and now I am solely responsible for his well being. And I learned that weighs a whole lot. Now I worry more than ever. Is the food he can eat going down the wrong pipe and is it building up in his lungs and creating an infection, do we need to rush to emergency. You name it; it is on my mind.
And though Riley knows that his dad is home, it really isn't his dad, at least not how he was when he dropped Riley off at school on Friday morning, April 3. And the relationship is not the same. Riley is definitely testing the waters where Dean is concerned. I guess the two of them will have to figure that out. (And you wouldn't even believe as I am typing the computer just goes blank and I am lucky nothing got erased). Maybe a sign I should stop now.
Lets not let so much time pass between updates.
P.S. Ricky I couldn't have said it better myself.
P.S.S. Bob and Laura thank you again for the beautiful basket of goodies.
P.S.S.S. This has taken me two days to post so I guess I better just post and hope for the best
P.S.S.S.S. On Monday, August 17, Rehab without wall will finally begin and we do have a busy week next week. Keep sending the love and prayers. Miracles happen everyday.
Some bloggers have reminded me how long it has been since last we communicated (I guess this is a form of communication. Don't you think?).
First let me start with the excuse for why I have been away so long. See we have two computers at home and neither one of them seems to be working. (Although since I am blogging right at the moment it would appear that I got the laptop to cooperate). The home computer, if I had to guess and since Dean is really not feeling like working on my issues right now so I do have to guess. Anyway, my guess would be we need a new hard drive. And I am guessing that because we have 4 mice (they would be mice right? and not mouses?) and not one of the damn mice/mouses wants to do its job. So that is my excuse.
Many of you probably know that Deano is now home and has been since July 30, 2009.
Dean being home certainly has brought with it some challenges.
For instance, continued therapy was supposed to have been set up upon Dean's discharge from the hospital and now we are going on 2 weeks at home and rehab therapy has just started. Now I am not a therapist nor am I a nurse and there have been so many times that I have felt that I am doing a terrible disservice to Deano. Example, I had no idea that Deano was ready to actually lift his right leg while in his walker rather than slide. So after the first visit from the physical therapist Deano is now practicing what we like to call "Lift and Lock", which means the lifting of his right leg and locking his knee to support the walking motion.
Deano has also learned some new arm lessons from the occupational therapist.
I do have to admit to you all out there: There was truly something special about the staff at Long Beach Memorial. There techniques just seem superior.
Riley and I are certainly trying new ways to incorporate Dean back into life at home, taking into consideration his new abilities. Deano has been outside watering and using the vacuum cleaner quite nicely.
Suffice to say we have crossed the line of the first Marathon our family has run together. Deano is healthy and at home. So now we embark on a new race and as I suspected probably more difficult than the one we just completed. This one brings with it challenges that I not only could not have anticipated/ I could not have trained and prepared in anyway (well that may be debatable and for now lets just say I am correct).
See through out this journey I have seriously contemplated our wedding vows, more specifically that part that says "In sickness and in health". I really believed that if my spouse got the flu or a cold I would take him chicken soup and aspirin in bed. Never once when I spoke those vows did I dream it would be a stroke and that I would temporarily stop working to become a full time nurse and therapist. See, in my opinion anyway, when you are those roles it doesn't allow for other things in a marriage, like being a woman or a mom or a wife.
I truly believed when we got Dean home I would no longer have to worry about his well being and now I am solely responsible for his well being. And I learned that weighs a whole lot. Now I worry more than ever. Is the food he can eat going down the wrong pipe and is it building up in his lungs and creating an infection, do we need to rush to emergency. You name it; it is on my mind.
And though Riley knows that his dad is home, it really isn't his dad, at least not how he was when he dropped Riley off at school on Friday morning, April 3. And the relationship is not the same. Riley is definitely testing the waters where Dean is concerned. I guess the two of them will have to figure that out. (And you wouldn't even believe as I am typing the computer just goes blank and I am lucky nothing got erased). Maybe a sign I should stop now.
Lets not let so much time pass between updates.
P.S. Ricky I couldn't have said it better myself.
P.S.S. Bob and Laura thank you again for the beautiful basket of goodies.
P.S.S.S. This has taken me two days to post so I guess I better just post and hope for the best
P.S.S.S.S. On Monday, August 17, Rehab without wall will finally begin and we do have a busy week next week. Keep sending the love and prayers. Miracles happen everyday.
Thursday, July 30, 2009
Thursday, July 30
Everyday I sit and ask myself
How did love slip away
Something whispers in my ear and says
That you are not alone
For I am here with you
Though you're far away
I am here to stay
But you are not alone
For I am here with you
Though we're far apart
You're always in my heart
But you are not alone'Lone, 'lone Why, 'lone
Well by the looks of it I would have to say Dean is looking mighty, comfy, cozy in his bed.
Just the other night
I thought I heard you cry
Asking me to come
And hold you in my arms
I can hear your prayers
Your burdens I will bear
But first I need your hand
Then forever can begin
How did love slip away
Something whispers in my ear and says
That you are not alone
For I am here with you
Though you're far away
I am here to stay
But you are not alone
For I am here with you
Though we're far apart
You're always in my heart
But you are not alone'Lone, 'lone Why, 'lone
Well by the looks of it I would have to say Dean is looking mighty, comfy, cozy in his bed.
Just the other night
I thought I heard you cry
Asking me to come
And hold you in my arms
I can hear your prayers
Your burdens I will bear
But first I need your hand
Then forever can begin
Wednesday, July 29, 2009
Wednesday, July 29
Ever have one of those moments when you would bet 1 mil that you did something; just to find out you just lost 1 mil. I would of bet I posted last night and I didn't.
Anyway, Riley is no longer counting days but hours.
Now we are doing final preparations for Deano's journey back home.
I will keep you posted.
Less than 24 hours and counting!
Anyway, Riley is no longer counting days but hours.
Now we are doing final preparations for Deano's journey back home.
I will keep you posted.
Less than 24 hours and counting!
Monday, July 27, 2009
Monday, July 27
3 Days and Counting
Dorothy, We certainly ain't in Kansas, no more.
In my mind it seems like there is so so much preparation for Dean's coming home. And in reality what can we really do to prepare. My head has been filled with instructions from all the therapists: speech, occupational, recreational and physical. So much information I cannot tell you what I remember and what I don't. My new saying "I don't even know what I don't know!" And truth be told Riley and I are already prepared for his arrival with love in our hearts and enough support to fill up any stadium in the world and then some.
Riley told me today I didn't even have to lift Deano to transfer him from one location to another. I told Riley he can show me how it's done when Dad comes home.
Tonight Riley prepared dinner and we had chicken with corn on the cob from his garden and a cucumber salad with cucumbers from his garden.
So not Kansas anymore and where ever we end up just might be better than Kansas.
Dorothy, We certainly ain't in Kansas, no more.
In my mind it seems like there is so so much preparation for Dean's coming home. And in reality what can we really do to prepare. My head has been filled with instructions from all the therapists: speech, occupational, recreational and physical. So much information I cannot tell you what I remember and what I don't. My new saying "I don't even know what I don't know!" And truth be told Riley and I are already prepared for his arrival with love in our hearts and enough support to fill up any stadium in the world and then some.
Riley told me today I didn't even have to lift Deano to transfer him from one location to another. I told Riley he can show me how it's done when Dad comes home.
Tonight Riley prepared dinner and we had chicken with corn on the cob from his garden and a cucumber salad with cucumbers from his garden.
So not Kansas anymore and where ever we end up just might be better than Kansas.
Sunday, July 26, 2009
Sunday, July 26
DID EVERYONE NOTICE THE ROOM CHANGE. DEANO IS NOW IN ROOM 146.
Tomorrow Riley and I will begin our family training at the hospital which will involve further lessons on showers, assistance with hygene, getting in and out of the car, etc. We will also learn different activities that we can do with Deano at home as he continues to recover.
Today Deano and Riley participated in recreational therapy which involved a baseball game on the Wii. How cool is that. Finally a reason to have Wii in the house. Me, Grandma Jo, Riley and Deano also went to a drumming ceramony this morning. Fun day at LBM.
We had to leave a little early. Time to start getting Riley ready for the new school year. Shit from Wii to planning for the new school year. Not so cool.
Alot to do to get ready for Deano's home coming. Riley told Deano he is very excited about Dean coming home. Riley also wants to have a big welcome home party for his dad.
Saturday, July 25, 2009
Thursday, July 23, 2009
Monday, July 20, 2009
Monday, July 20
May is in town so after work we grabbed a bite to eat and then headed out to visit Deano.
We are still having a heated dicussion about some changes I want to make which he does not want me to. So stay tuned. Dean is going to think about my argument tonight and give me the answer I want to hear in the AM.
All three of us had a lot of giggles tonight and that was a nice note to end the evening on.
Today was Riley's first day of basket ball camp (I think I was more excited than he was - from the moment I walked into the camp I knew it was well worth it). I will have to wait and see if Riley feels the same. Today Derek Fisher was there.
Night, Night....
We are still having a heated dicussion about some changes I want to make which he does not want me to. So stay tuned. Dean is going to think about my argument tonight and give me the answer I want to hear in the AM.
All three of us had a lot of giggles tonight and that was a nice note to end the evening on.
Today was Riley's first day of basket ball camp (I think I was more excited than he was - from the moment I walked into the camp I knew it was well worth it). I will have to wait and see if Riley feels the same. Today Derek Fisher was there.
Night, Night....
Sunday, July 19, 2009
Sunday, July 19
First of all Riley is home and May is back in town. I was surprised because my boy looks the same; just a little taller and I must say a lot cuter or a lot more cute (which ever you prefer).
Thanks Uncle Dave and I do know you come with good intentions and a loving heart.
I certainly was not aware of what you saw when you looked in my eyes or at the moment you noticed.
What was there was exactly what you said along with fear, panic, doubt and any other adjective which falls into this same category.
Not only is Deano getting ready to come home; my boy is now home.
On Friday I spent the day at the hospital and met with the physical, occupational and speech therapist and there was actually one more which cancelled. Along with them I also met with the case worker. It appears our stay at LBM is quickly coming to an end. So I need to learn in as little time as possible how to care for Dean under these new unexpected circumstances. How to get him out of the wheelchair without hurting either one of us; the proper way to walk with him using the walker, how to get him in and out of a car or up and down stairs. Though Dean is certainly getting stronger he still requires care 24/7. Oh, did I mention hygiene; bathing, etc. Overwhelmed; I say scared shit less.
I must say again the staff and therapists at LBM are so accommodating and helpful.
I picked up Riley and May from the airport and then we went to the hospital and Dean and I got into a little scuttle but - wow try doing that with charades. Not so easy especially when you have never played charades.
The device that Uncle Dave is speaking of would give Deano a voice, either via pressing pictures on a computer or typing in phrases with a lot more functions once it is utilized in the home. However this device is apprx. $10,000.00, which is covered by insurance (amount of coverage unknown) and must be approved and at this stage it is not approved for Deano. The protocol goes something like this: the devise is set up in his room and the various speech therapist both observe and assist Deano in the use of this device to determine whether or not it is a viable means of communication for Dean. Provided they determine that it would in fact be beneficial for him a report is written by the head speech therapist and submitted to Dean's case worker and then the case worker will submit and correspond with the insurance company for approval.
This coming week the hospital will be ordering Dean's wheelchair, walker and various other items which we will need for his homecoming. It still has not been determined whether or not he will require a hospital bed. If so, Deano's room will be our old living room and we will then have that 3 bedroom house we always wanted.
Deano has become very emotional and rightly so. He is becoming more aware of his circumstances and I imagine feeling like he is not getting the results which all his hard work has warranted. Especially with the apraxia - the harder you try to talk; the harder it is to talk. Words or no words I could certainly tell he was yelling at me today and very loudly. What I can gather from Deano's sadness is that right now he is feeling very alone. So maybe if you happen to stop by and see him if you could just remind him he is definitely not alone.
A lot to do so I guess we will catch up later.
Thanks Uncle Dave and I do know you come with good intentions and a loving heart.
I certainly was not aware of what you saw when you looked in my eyes or at the moment you noticed.
What was there was exactly what you said along with fear, panic, doubt and any other adjective which falls into this same category.
Not only is Deano getting ready to come home; my boy is now home.
On Friday I spent the day at the hospital and met with the physical, occupational and speech therapist and there was actually one more which cancelled. Along with them I also met with the case worker. It appears our stay at LBM is quickly coming to an end. So I need to learn in as little time as possible how to care for Dean under these new unexpected circumstances. How to get him out of the wheelchair without hurting either one of us; the proper way to walk with him using the walker, how to get him in and out of a car or up and down stairs. Though Dean is certainly getting stronger he still requires care 24/7. Oh, did I mention hygiene; bathing, etc. Overwhelmed; I say scared shit less.
I must say again the staff and therapists at LBM are so accommodating and helpful.
I picked up Riley and May from the airport and then we went to the hospital and Dean and I got into a little scuttle but - wow try doing that with charades. Not so easy especially when you have never played charades.
The device that Uncle Dave is speaking of would give Deano a voice, either via pressing pictures on a computer or typing in phrases with a lot more functions once it is utilized in the home. However this device is apprx. $10,000.00, which is covered by insurance (amount of coverage unknown) and must be approved and at this stage it is not approved for Deano. The protocol goes something like this: the devise is set up in his room and the various speech therapist both observe and assist Deano in the use of this device to determine whether or not it is a viable means of communication for Dean. Provided they determine that it would in fact be beneficial for him a report is written by the head speech therapist and submitted to Dean's case worker and then the case worker will submit and correspond with the insurance company for approval.
This coming week the hospital will be ordering Dean's wheelchair, walker and various other items which we will need for his homecoming. It still has not been determined whether or not he will require a hospital bed. If so, Deano's room will be our old living room and we will then have that 3 bedroom house we always wanted.
Deano has become very emotional and rightly so. He is becoming more aware of his circumstances and I imagine feeling like he is not getting the results which all his hard work has warranted. Especially with the apraxia - the harder you try to talk; the harder it is to talk. Words or no words I could certainly tell he was yelling at me today and very loudly. What I can gather from Deano's sadness is that right now he is feeling very alone. So maybe if you happen to stop by and see him if you could just remind him he is definitely not alone.
A lot to do so I guess we will catch up later.
Friday, July 17, 2009
Friday, July 17
Today I spent the day with Deano, attending his various therapies, and actually today was devoted to me and him. The purpose of today was to continue the conversation about his inevitable discharge from LBH. I must say the staff there are incredibaly caring and helpful and are really accommodating in insuring a smooth transition home.
Alot happened and I intended to share it all and truth be told, I am on emotional and physical overload right now and am finding it difficult to concentrate.
Good night for now.
Alot happened and I intended to share it all and truth be told, I am on emotional and physical overload right now and am finding it difficult to concentrate.
Good night for now.
Monday, July 13, 2009
Monday, July 13
Hey all you listeners from Kwourworld this dedication goes out to Dean Namba from Maria Namba in Venice.
Starting all over again is gonna be rough, so rough
But we're gonna make it
We lost what we had
That's why it hurt so bad
It set us back a thousand years
We're gonna make it up
Though it's gonna be rough
To erase all the hurt and tears
Starting all over again is gonna be hard
But I pray that the love will help us make it
Starting all over again is gonna be slow
But we both know that we can make it
We gotta take life as it comes
And never worry about who's right or wrong
It's an uphill climb
To the finish line
We're gonna try to make it
One more time
Tim Hagan spent part of the day with Deano today and watched Dean participate in his treatments today. The consensus is Dean is working really hard and doing what he needs to do.
According to Tim Dean was in good spirits today.
On the home front we are preparing the best we can to make home a safe environment for Deano to continue on his journey to recovery.
Starting all over again is gonna be rough, so rough
But we're gonna make it
We lost what we had
That's why it hurt so bad
It set us back a thousand years
We're gonna make it up
Though it's gonna be rough
To erase all the hurt and tears
Starting all over again is gonna be hard
But I pray that the love will help us make it
Starting all over again is gonna be slow
But we both know that we can make it
We gotta take life as it comes
And never worry about who's right or wrong
It's an uphill climb
To the finish line
We're gonna try to make it
One more time
Tim Hagan spent part of the day with Deano today and watched Dean participate in his treatments today. The consensus is Dean is working really hard and doing what he needs to do.
According to Tim Dean was in good spirits today.
On the home front we are preparing the best we can to make home a safe environment for Deano to continue on his journey to recovery.
Sunday, July 12, 2009
Sunday, July 12
The reality that in just a few weeks Deano will be coming home was very evident when the nurse asked me whether or not any one had showed me how to use the feeding tube. Guess what I think I now know how to use a feeding tube.
The thing is I made up a story in my mind around "Deano coming home", and it certainly did not have anything to do with feeding tubes, wheel chairs and retrofitting our house.
"Deano coming home" meant he would be eating steaks, and cooking them to. It meant that he would be walking, maybe with a little limp now and then and that he would be verbally communicating with us.
Deano had the weekend off so he will resume his therapy on Monday.
Where do we go from here??????????
Stay tuned!
The thing is I made up a story in my mind around "Deano coming home", and it certainly did not have anything to do with feeding tubes, wheel chairs and retrofitting our house.
"Deano coming home" meant he would be eating steaks, and cooking them to. It meant that he would be walking, maybe with a little limp now and then and that he would be verbally communicating with us.
Deano had the weekend off so he will resume his therapy on Monday.
Where do we go from here??????????
Stay tuned!
Saturday, July 11, 2009
Saturday, July 11, 2009
Thank you Tim DiMarco for filling us all in of the events from Thursday.
In case some of you didn't know Tim was our best man when Dean and I married almost 14 years ago.
I almost can't believe today is Saturday. The time I have at the hospital now is just about reserved for weekends only.
Well today I again find myself at a loss for words without even a song in my repertoire to express the amount of fear that I feel for Dean and our family, especially since it appears that, ready or not, Dean will be coming home on July 30.
At some point early on in this journey it occurred to me that maybe what we had just been through was the easy part and that the hard part of this journey was yet to come. And as July 30 approaches I feel the weight of what this could possibly mean and the changes and adjustments that still lie ahead for us.
Until next we meet.
In case some of you didn't know Tim was our best man when Dean and I married almost 14 years ago.
I almost can't believe today is Saturday. The time I have at the hospital now is just about reserved for weekends only.
Well today I again find myself at a loss for words without even a song in my repertoire to express the amount of fear that I feel for Dean and our family, especially since it appears that, ready or not, Dean will be coming home on July 30.
At some point early on in this journey it occurred to me that maybe what we had just been through was the easy part and that the hard part of this journey was yet to come. And as July 30 approaches I feel the weight of what this could possibly mean and the changes and adjustments that still lie ahead for us.
Until next we meet.
Wednesday, July 8, 2009
Wednesday, July 8
I saw Dean this evening and he was looking comfy cozy and ready for mimi. Not a long visit because of the drive time.
Good night ya all...
Good night ya all...
Tuesday, July 7, 2009
Tuesday, July 7
Can you believe the 4th of July has come and gone. Incredible!
Kudos to Uncle Jim for so eloquently keeping us posted on Deano's continued progress. Deano is really doing some amazing work in his recovery process right now.
Oh in case you hadn't noticed I am back ("She's back"). In case you were wondering, this is what happened (metaphorically speaking, of course).
As I was jogging along looking forward to another milestone (was it 11 - I believe it was and if not let us just say it was for sake of argument). Anyway, as I was jogging along I slipped and fell upon the tiniest of pebbles. And you know it always amazes me that it is the tiniest ones that seem to do the most damage. Isn't that funny like ironic or maybe just funny like funny. So I decided to sit on the curb for a bit while I contemplated my plans for completing this race. And the timing couldn't be more perfect because just as this happened Jim and Mia, magically arrived in town. And now they have flown back home with my little one in tow (well not really so little).
So I am up and running again.
From what I hear and not from the horse's mouth, Riley is having a fabulous time. He is doing what a 9 year old should be doing during the summer. And according to Riley it isn't normal if he has not flown somewhere at least twice a year. Riley is swimming both at Grandma May's and at the YMCA with Jim and his family. Jim and Bonnie have Riley and Mia signed up for some swim lessons so they can use the pool slide. He spent most of Sunday playing with Larry's boys (his cousins) Elliott, Preston and Max. I tell you the kid is in seventh heaven. According to Riley he will be in Seattle for 3 weeks.
So much going on behind the scenes with and for Deano right now. His tentative release date from LBM is July 30, 2009 and as of right now I am not exactly sure what that looks like.
Today, Dr. Huang started to administer the Sinemet in hopes that this will stimulate some form of language from Deano. They are also currently working on some other forms. There is a keyboard that they are trying to obtain for Deano. With the use of this keyboard you type in what message you want relayed and the computer says what you type. The user can pick the voice and everything. In a couple of days, provided there is no adverse reaction to the Sinemet then they will start the Ritalin.
Dean and I spend alot of time laughing and I can see that he really is trying to speak.
I will be delivering clean laundry and some reading glasses to the hospital tomorrow and checking up on Deano and will let you know what is happening.
P.S. We did have a nice 4th of July visit with Mark and Karen - lots of laughs. Hey Mark if you get a chance can you call me regarding the matter we discussed.
P.S.S. Tim DiMarco you are due in town tomorrow. Any plans and when are you headed back home.
P.S.S.S. Thanks to the Seattle Namba's for taking in Riley with so much love and patience.
Kudos to Uncle Jim for so eloquently keeping us posted on Deano's continued progress. Deano is really doing some amazing work in his recovery process right now.
Oh in case you hadn't noticed I am back ("She's back"). In case you were wondering, this is what happened (metaphorically speaking, of course).
As I was jogging along looking forward to another milestone (was it 11 - I believe it was and if not let us just say it was for sake of argument). Anyway, as I was jogging along I slipped and fell upon the tiniest of pebbles. And you know it always amazes me that it is the tiniest ones that seem to do the most damage. Isn't that funny like ironic or maybe just funny like funny. So I decided to sit on the curb for a bit while I contemplated my plans for completing this race. And the timing couldn't be more perfect because just as this happened Jim and Mia, magically arrived in town. And now they have flown back home with my little one in tow (well not really so little).
So I am up and running again.
From what I hear and not from the horse's mouth, Riley is having a fabulous time. He is doing what a 9 year old should be doing during the summer. And according to Riley it isn't normal if he has not flown somewhere at least twice a year. Riley is swimming both at Grandma May's and at the YMCA with Jim and his family. Jim and Bonnie have Riley and Mia signed up for some swim lessons so they can use the pool slide. He spent most of Sunday playing with Larry's boys (his cousins) Elliott, Preston and Max. I tell you the kid is in seventh heaven. According to Riley he will be in Seattle for 3 weeks.
So much going on behind the scenes with and for Deano right now. His tentative release date from LBM is July 30, 2009 and as of right now I am not exactly sure what that looks like.
Today, Dr. Huang started to administer the Sinemet in hopes that this will stimulate some form of language from Deano. They are also currently working on some other forms. There is a keyboard that they are trying to obtain for Deano. With the use of this keyboard you type in what message you want relayed and the computer says what you type. The user can pick the voice and everything. In a couple of days, provided there is no adverse reaction to the Sinemet then they will start the Ritalin.
Dean and I spend alot of time laughing and I can see that he really is trying to speak.
I will be delivering clean laundry and some reading glasses to the hospital tomorrow and checking up on Deano and will let you know what is happening.
P.S. We did have a nice 4th of July visit with Mark and Karen - lots of laughs. Hey Mark if you get a chance can you call me regarding the matter we discussed.
P.S.S. Tim DiMarco you are due in town tomorrow. Any plans and when are you headed back home.
P.S.S.S. Thanks to the Seattle Namba's for taking in Riley with so much love and patience.
Friday, July 3, 2009
right-sided progress
Hello again from Long Beach,
It was an oddly traffic-free day, this day before the official holiday. Our group consisted of Teri, Riley, Miya and myself. We arrived earlier today and got to observe Deano working with his occupational therapist, Marianna. She and Dean achieved a major breakthrough, Dean began exercising his right arm today for the first time. It was a simple push/pull with his hand attached to a pvc frame to guide his motion, but he was able to accomplish the task on his own!!!
Next, she asked for one of Dean's favorite songs and Teri said "My Funny Valentine". So Marianna asked Dean to sing it for her and Dean mouthed several lines from the song - his longest attempt to vocalize yet.
Later, when Venus, the physical therapist, had her session with Dean, she strapped him into a support system so he could walk on the treadmill and begin to regain the feeling of supporting himself.
the weekend promises to be a quiet one, simply because of the holiday and the fact that the staff, as dedicated as they are, are people too, with lives away from the hospital. Next week, Dean will most likely undergo a swallow test/x-ray to make sure his throat has healed properly as he prepares to switch to eating his nutrition, rather than having it delivered through the stomach port. In fact, he is getting his meals now as single injections instead of a constant drip, to stretch his stomach and further simulate getting a normal meal.
Dean will also begin receiving 2 medications on a trial basis to see if they can stimulate his recovery. One will be focused on the vocal side and the other will be more for his physical side. Neither drug is officially sanctioned for these purposes but have shown in some patients to have good results. Keep your fingers crossed...
Well, Miya, Riley and I are off to Seattle tomorrow, leaving Teri to shoulder the burden on her own for a bit this summer. Please let her and Dean know they are not alone on this long journey. Thanks to those of you who have been able to visit (Cornelius was spotted playing chess with Dean and Ed dropped of a book for Dean to read).
Several mileposts have been seen in the rear view mirror this week and many more are on the horizon.
Enjoy the 4th,
Jim
It was an oddly traffic-free day, this day before the official holiday. Our group consisted of Teri, Riley, Miya and myself. We arrived earlier today and got to observe Deano working with his occupational therapist, Marianna. She and Dean achieved a major breakthrough, Dean began exercising his right arm today for the first time. It was a simple push/pull with his hand attached to a pvc frame to guide his motion, but he was able to accomplish the task on his own!!!
Next, she asked for one of Dean's favorite songs and Teri said "My Funny Valentine". So Marianna asked Dean to sing it for her and Dean mouthed several lines from the song - his longest attempt to vocalize yet.
Later, when Venus, the physical therapist, had her session with Dean, she strapped him into a support system so he could walk on the treadmill and begin to regain the feeling of supporting himself.
the weekend promises to be a quiet one, simply because of the holiday and the fact that the staff, as dedicated as they are, are people too, with lives away from the hospital. Next week, Dean will most likely undergo a swallow test/x-ray to make sure his throat has healed properly as he prepares to switch to eating his nutrition, rather than having it delivered through the stomach port. In fact, he is getting his meals now as single injections instead of a constant drip, to stretch his stomach and further simulate getting a normal meal.
Dean will also begin receiving 2 medications on a trial basis to see if they can stimulate his recovery. One will be focused on the vocal side and the other will be more for his physical side. Neither drug is officially sanctioned for these purposes but have shown in some patients to have good results. Keep your fingers crossed...
Well, Miya, Riley and I are off to Seattle tomorrow, leaving Teri to shoulder the burden on her own for a bit this summer. Please let her and Dean know they are not alone on this long journey. Thanks to those of you who have been able to visit (Cornelius was spotted playing chess with Dean and Ed dropped of a book for Dean to read).
Several mileposts have been seen in the rear view mirror this week and many more are on the horizon.
Enjoy the 4th,
Jim
Thursday, July 2, 2009
Hi All,
Guest Blogger Jim back on line.
Today we saw Dean working with Venus, his PT. During the portion I witnessed, she had him scoot along the edge of the bed with his feet on the floor and his torso upright. His goal was to get to the end of the bed. Once there, with assistance, he stood up and pivoted to place his back to the wall. With his heels against the wall, his task was to shift his balance from his right to his left, alternately supporting himself on one side and then the other. Even though he responded yes when asked if he was tired, he wanted to continue with the exercise until the set was complete. Afterwards, he was to scoot back down to the center of the 'bed' and lay himself down with both feet off the bed. First he lifted his left leg and then he was told to lift his right leg with a bent knee. He was almost able to bring it up onto the bed without assistance (if he had been wearing his shoes, he probably would have had enough clearance to complete the command).
At this, I took the kids down to the cafeteria for ice cream and when we met up with Dean in his room, we started up the poker game again, this time with chips rather than the push tacks. The game shifted from 5 card draw to 7 card stud, in order to up the complexity of the situation. Dean gave the kids a lesson in how to bet. With one particular hand, Dean had 3 10's in his first 3 cards. He bet 1 chip. The next card paired Riley with 9's...he bet 5 and Dean and Miya saw the bet. The rest of the cards were dealt and Dean consistantly bet a single chip to draw the others into the net. When the cards were revealed, Miya thought she had a chance with 7's & Riley thought he had won with 9's. In fact, Riley started to scoop the pot when Dean flipped over his cards, still with a straight face. It wasn't until Riley figured out that he didn't win that Dean gave his little smirk, another lesson in life for the young man. Soon after, I suggested that perhaps the kids and I should leave and let Dean have a few moments alone to rest and read the newspaper before his next therapy session - to which he eagerly agreed. So off we went to the Long Beach Aquarium (Miya says she likes the Seattle one better).
So tomorrow promises to be another day of hard work and small progressions.
until then,
Jim
PS...I finally ran into some Famous LA traffic. on the way home on the 405, it took 20 minutes to get to LAX. the reader boards said the next 2 miles past the airport would take 20 minutes so I got clever and got off the freeway and over to LAX and then Lincoln. 90 minutes later, we got home in Venice.
Guest Blogger Jim back on line.
Today we saw Dean working with Venus, his PT. During the portion I witnessed, she had him scoot along the edge of the bed with his feet on the floor and his torso upright. His goal was to get to the end of the bed. Once there, with assistance, he stood up and pivoted to place his back to the wall. With his heels against the wall, his task was to shift his balance from his right to his left, alternately supporting himself on one side and then the other. Even though he responded yes when asked if he was tired, he wanted to continue with the exercise until the set was complete. Afterwards, he was to scoot back down to the center of the 'bed' and lay himself down with both feet off the bed. First he lifted his left leg and then he was told to lift his right leg with a bent knee. He was almost able to bring it up onto the bed without assistance (if he had been wearing his shoes, he probably would have had enough clearance to complete the command).
At this, I took the kids down to the cafeteria for ice cream and when we met up with Dean in his room, we started up the poker game again, this time with chips rather than the push tacks. The game shifted from 5 card draw to 7 card stud, in order to up the complexity of the situation. Dean gave the kids a lesson in how to bet. With one particular hand, Dean had 3 10's in his first 3 cards. He bet 1 chip. The next card paired Riley with 9's...he bet 5 and Dean and Miya saw the bet. The rest of the cards were dealt and Dean consistantly bet a single chip to draw the others into the net. When the cards were revealed, Miya thought she had a chance with 7's & Riley thought he had won with 9's. In fact, Riley started to scoop the pot when Dean flipped over his cards, still with a straight face. It wasn't until Riley figured out that he didn't win that Dean gave his little smirk, another lesson in life for the young man. Soon after, I suggested that perhaps the kids and I should leave and let Dean have a few moments alone to rest and read the newspaper before his next therapy session - to which he eagerly agreed. So off we went to the Long Beach Aquarium (Miya says she likes the Seattle one better).
So tomorrow promises to be another day of hard work and small progressions.
until then,
Jim
PS...I finally ran into some Famous LA traffic. on the way home on the 405, it took 20 minutes to get to LAX. the reader boards said the next 2 miles past the airport would take 20 minutes so I got clever and got off the freeway and over to LAX and then Lincoln. 90 minutes later, we got home in Venice.
Wednesday, July 1, 2009
Happy July
Hello all,
guest blogger Jim back on duty.
First, I apologize for not posting yesterday. I got back from the hospital after Teri and Riley had gone to bed and I didn't know how to access the blog. I had gone to see how the evening went for Dean and when I got there he was in bed and seemed very comfortable. We had a pleasant conversation without the kids present so it seemed more adult and personal. Earlier, the kids and I had visited when the speech therapist was working on non-verbal communication signals with Dean (and forming an assessment on how to proceed with his therapy. One tip, if you are visiting and Dean makes any type of sound...a cough or a laugh or an 'ahh', please ask him to repeat it and get those vocal cords back in action.) When we left to attend a birthday celebration for a very cute 3 year old niece of Dean, Lauren., Dean was tired and somewhat irritable after his 3 sessions - so it was pleasant to see him in better spitits at the end of the day.
Today, we arrived between his sessions with the therapists and spent the time playing cards. First we played blackjack and rotated dealing between Riley, Miya and Dean. Then we added betting, using push tacks for chips. Dean played his cards and kept an eye on Riley's also, giving him advice on whether to take cards or stay, as well as helping Riley manage the tacks in the middle when Riley was the dealer. Next came 5 card stud. Dean drew and filled small straights on 2 different occaisions. and was the overall pin leader when the game ended.
We were interupted by his nurse, who needed to do some maintenence on his feeding tube/port and set up an IV port. Dean has contracted another infection, this time from his urinary tract and will begin receiving antibiotics again tonight. All visitors to his room need to were gowns and gloves to keep the infection from spreading to the visitors or others at the hospital.
When we got back from lunch, Dean was ready to go to physical therapy. He practiced sitting, standing and taking a single step with his left leg, the key being holding his right knee locked so it can support. Dean is in a kind of catch 22...he needs to use his right side more to gain strength and rebuild his atrophied muscles but he doesn't have the strength to do more work and improve his dexterity. But he is working...the therapist asked Dean to perform certain manuvers and he shook his head no, but on repeated urging, went ahead and did the exercises as originally requested. He is stronger than he thinks he is....and he is getting stronger with each passing day.
that's all the news from Long Beach,
Jim
guest blogger Jim back on duty.
First, I apologize for not posting yesterday. I got back from the hospital after Teri and Riley had gone to bed and I didn't know how to access the blog. I had gone to see how the evening went for Dean and when I got there he was in bed and seemed very comfortable. We had a pleasant conversation without the kids present so it seemed more adult and personal. Earlier, the kids and I had visited when the speech therapist was working on non-verbal communication signals with Dean (and forming an assessment on how to proceed with his therapy. One tip, if you are visiting and Dean makes any type of sound...a cough or a laugh or an 'ahh', please ask him to repeat it and get those vocal cords back in action.) When we left to attend a birthday celebration for a very cute 3 year old niece of Dean, Lauren., Dean was tired and somewhat irritable after his 3 sessions - so it was pleasant to see him in better spitits at the end of the day.
Today, we arrived between his sessions with the therapists and spent the time playing cards. First we played blackjack and rotated dealing between Riley, Miya and Dean. Then we added betting, using push tacks for chips. Dean played his cards and kept an eye on Riley's also, giving him advice on whether to take cards or stay, as well as helping Riley manage the tacks in the middle when Riley was the dealer. Next came 5 card stud. Dean drew and filled small straights on 2 different occaisions. and was the overall pin leader when the game ended.
We were interupted by his nurse, who needed to do some maintenence on his feeding tube/port and set up an IV port. Dean has contracted another infection, this time from his urinary tract and will begin receiving antibiotics again tonight. All visitors to his room need to were gowns and gloves to keep the infection from spreading to the visitors or others at the hospital.
When we got back from lunch, Dean was ready to go to physical therapy. He practiced sitting, standing and taking a single step with his left leg, the key being holding his right knee locked so it can support. Dean is in a kind of catch 22...he needs to use his right side more to gain strength and rebuild his atrophied muscles but he doesn't have the strength to do more work and improve his dexterity. But he is working...the therapist asked Dean to perform certain manuvers and he shook his head no, but on repeated urging, went ahead and did the exercises as originally requested. He is stronger than he thinks he is....and he is getting stronger with each passing day.
that's all the news from Long Beach,
Jim
Monday, June 29, 2009
Monday, June 29
I will remember you
Will you remember me?
Don't let your life pass you by
Weep not for the memories
I'm so tired but I can't sleep
Standin' on the edge of something much too deep
It's funny how we feel so much but we cannot say a word
Though we are screaming inside oh we can't be heard
I'm so afraid to love you, but more afraid to loose
Clinging to a past that doesn't let me choose
But once there was a darkness, deep and endless night
You gave me everything you had, oh you gave me light
That I will remember you
Will you remember me?
Don't let your life pass you by
Weep not for the memories
Guest Blogger Jim back on duty -
first order of business...Grandma May, I can't call you if your line is continually busy. Today, Riley, Miya and I arrived at the hospital during Dean's physical therapy session. We got to watch while Dean practiced getting up from bed and shifting to a sitting position with his legs out of bed. We left him while he was streching his torso and right arm (while using it for support). Achieving a more upright posture allowed Dean to take a fuller breath, using his diaphram and complete chest cavity, rather than just the stomach breathing that he preformed for the night nurse taking his vital signs.
So, after we returned from lunch, we found Dean waiting for us in his room, sitting in his wheelchair. I suggested a chess match and asked if he wanted to play Miya or Riley and of course Riley got the finger of fate pointed at him. When Dean plays chess against his son, everything is on the line, so there is no looking off out the window or even at the TV. His entire focus is on the game. He held that concentration for at least 15 minutes and the only thing that broke the spell was an irritation with his feeding tube. Eventually we called for some help, but the CNA insisted that he keep the tube in place. Finally, after checking twice with his nurse, she disconnected the tube. Immediately Dean gestured to leave but as we moved toward the door, he took a turn to the bathroom...he needed to use the facilities, that was the reason for his agitation with the feeding tube, it needed to be disconnected before he could go to the bathroom. A simple human need for which we had not yet developed a way to communicate between us. Ahh, the things we take for granted.
Well, later we went out the the interior courtyard of the rehab center and when we returned, Dean was tired enough that he wanted to get into his bed. I assisted him to a standing position but he was able to do the rest himself, adjusting his body so he could drop into bed and moving his body until he was in a normal position, centered, with his hips above the crease created when the bed is adjusted when the head is raised. The work and training is paying off in a very practical sense and again, I can't help but think that his self-confidence took another step forward.
Tomorrow we will most likely see the occupational therapist at work and report back.
Goodbye for now,
Jim
Will you remember me?
Don't let your life pass you by
Weep not for the memories
I'm so tired but I can't sleep
Standin' on the edge of something much too deep
It's funny how we feel so much but we cannot say a word
Though we are screaming inside oh we can't be heard
I'm so afraid to love you, but more afraid to loose
Clinging to a past that doesn't let me choose
But once there was a darkness, deep and endless night
You gave me everything you had, oh you gave me light
That I will remember you
Will you remember me?
Don't let your life pass you by
Weep not for the memories
Guest Blogger Jim back on duty -
first order of business...Grandma May, I can't call you if your line is continually busy. Today, Riley, Miya and I arrived at the hospital during Dean's physical therapy session. We got to watch while Dean practiced getting up from bed and shifting to a sitting position with his legs out of bed. We left him while he was streching his torso and right arm (while using it for support). Achieving a more upright posture allowed Dean to take a fuller breath, using his diaphram and complete chest cavity, rather than just the stomach breathing that he preformed for the night nurse taking his vital signs.
So, after we returned from lunch, we found Dean waiting for us in his room, sitting in his wheelchair. I suggested a chess match and asked if he wanted to play Miya or Riley and of course Riley got the finger of fate pointed at him. When Dean plays chess against his son, everything is on the line, so there is no looking off out the window or even at the TV. His entire focus is on the game. He held that concentration for at least 15 minutes and the only thing that broke the spell was an irritation with his feeding tube. Eventually we called for some help, but the CNA insisted that he keep the tube in place. Finally, after checking twice with his nurse, she disconnected the tube. Immediately Dean gestured to leave but as we moved toward the door, he took a turn to the bathroom...he needed to use the facilities, that was the reason for his agitation with the feeding tube, it needed to be disconnected before he could go to the bathroom. A simple human need for which we had not yet developed a way to communicate between us. Ahh, the things we take for granted.
Well, later we went out the the interior courtyard of the rehab center and when we returned, Dean was tired enough that he wanted to get into his bed. I assisted him to a standing position but he was able to do the rest himself, adjusting his body so he could drop into bed and moving his body until he was in a normal position, centered, with his hips above the crease created when the bed is adjusted when the head is raised. The work and training is paying off in a very practical sense and again, I can't help but think that his self-confidence took another step forward.
Tomorrow we will most likely see the occupational therapist at work and report back.
Goodbye for now,
Jim
Sunday, June 28, 2009
Sunday, June 28
Guest Blogger brother Jim signing in -
What a difference since the last time I saw Deano at Kindred. He is in a new space (still with a window view, overlooking a small garden) both phyically and emotionally. My daughter, Miya, and I went to see Dean directly from the airport and met a man with a big smile on his face and one who giggled as he was being tickled by his wife. Just seeing him in a t-shirt made a change in his appearance and I can't help to think that Dean feels much less like a patient by being able to wear civilian clothing again. He showed me how he could flex his right toes and move his leg. His attention span is much improved from a few weeks ago and the level of communication has increased.
They do things a bit differently at Long Beach...Dean was given 2 sessions of therapy today, rather than waiting while the therapists take the weekend off. When we went to visit him this afternoon, it was obvious that he was tired from the physical & occupational therapy sessions, as well as the visitors that were kind enough to make the effort to see Dean. The crew here intends to work him, whether he wants to or not...everything is geared to his becoming self-sufficient as soon as possible while he is on this long journey back. I am looking forward to observing (and helping out as needed) when he undergoes the therapy sessions this week.
As I always told the kids on the soccer team during the summer training sessions as I sent them off on yet another lap, "The journey of a thousand miles begins with a single strp". I would cite Chairman Mao and his Little Red Book, but I think he stole it.
Tomorrow promises to bring more work and with that effort comes progress.
Jim
What a difference since the last time I saw Deano at Kindred. He is in a new space (still with a window view, overlooking a small garden) both phyically and emotionally. My daughter, Miya, and I went to see Dean directly from the airport and met a man with a big smile on his face and one who giggled as he was being tickled by his wife. Just seeing him in a t-shirt made a change in his appearance and I can't help to think that Dean feels much less like a patient by being able to wear civilian clothing again. He showed me how he could flex his right toes and move his leg. His attention span is much improved from a few weeks ago and the level of communication has increased.
They do things a bit differently at Long Beach...Dean was given 2 sessions of therapy today, rather than waiting while the therapists take the weekend off. When we went to visit him this afternoon, it was obvious that he was tired from the physical & occupational therapy sessions, as well as the visitors that were kind enough to make the effort to see Dean. The crew here intends to work him, whether he wants to or not...everything is geared to his becoming self-sufficient as soon as possible while he is on this long journey back. I am looking forward to observing (and helping out as needed) when he undergoes the therapy sessions this week.
As I always told the kids on the soccer team during the summer training sessions as I sent them off on yet another lap, "The journey of a thousand miles begins with a single strp". I would cite Chairman Mao and his Little Red Book, but I think he stole it.
Tomorrow promises to bring more work and with that effort comes progress.
Jim
Saturday, June 27, 2009
Saturday, June 27
I took my love and I took it down
I climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Well the landslide brought me down
What can I say - the picture speaks for itself and he does look good outside. We sat out in the court yard and then we watched some tennis in the family room. No schedule of events today.
Jim and Mia arrived from Seattle today and just in the nick of time. The drive to Long Beach is really not that bad - if you do not get traffic on the 405.
Dean and I laughed a lot today and that was really nice.
Oh, mirror in the sky
What is love
Can the child within my heart rise above
Can I sail thru the changing ocean tides
Can I handle the seasons of my life
I climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Well the landslide brought me down
What can I say - the picture speaks for itself and he does look good outside. We sat out in the court yard and then we watched some tennis in the family room. No schedule of events today.
Jim and Mia arrived from Seattle today and just in the nick of time. The drive to Long Beach is really not that bad - if you do not get traffic on the 405.
Dean and I laughed a lot today and that was really nice.
Oh, mirror in the sky
What is love
Can the child within my heart rise above
Can I sail thru the changing ocean tides
Can I handle the seasons of my life
Friday, June 26, 2009
Friday, June 26
Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking
But I gotta keep trying
Gotta keep my head held high
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb
The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking
Can you believe we quietly approached Mile Marker 10 and I believe we are picking up momentum.
After a long day of waiting, Deano's transfer from Kindred to Long Beach Memorial was a success and he seemed to tolerate the ambulance drive very well.
Our departure from Kindred was definitely bittersweet. There were some, on staff, that touched my heart. There was also the convenience and being able to see Dean during lunch and after work. Because of the distance it just may work out that I now only see him on the weekends. Some think that may very well be a good thing. May make Dean want to work harder. There was another aspect of the departure that I also had to come to terms with. When we were transferred to Kindred there was a sense by me that we had no choice and I know there is always choice. We were given, probably, a 2 hour window to be transferred from UCLA to Kindred. And I believe that made it very easy for me to forget to honor the next step of Deano's journey. The difference now is that I was given time to discuss the discharge from Kindred and to make a decision on the next facility. And it was ultimately, as it was before, my decision on where we would travel next. I toured Long Beach Memorial and made a decision for the transfer. The decision was based on several things, not one of which was the distance. I based it on the look of the facility, my understanding of their program for rehabilitation, the kindness of the case worker on the phone and the social worker that provided me with the tour and their philosophy to have patients out of bed as much as possible. I don't like to be wrong (and I have to say again, for those of you who know me - you know that to be true) and in this circumstance I feel like I cannot be wrong because Deano's well being depends upon it.
Deano's first day at LBM and his schedule consisted of: a) bathing himself in the morning, b) dressing himself (that is right, clothes that do not consist of a hospital gown but of his own tennis shoes, socks, T-Shirt (you were expecting a button down) and c) hospital provided draw string pants (because I do not have a pair that fit him and he had to be ready to go by 9:00 am.
9:00 am Occupational Therapy
11:00 am Speech Therapy which consisted of food trials (applesauce, water & nectar)
1:00 pm Speech Therapy for swallowing and speaking
2:00 pm Physical Therapy
And at 4pm in the social room will be music therapy (optional).
Dean said he didn't sleep well last night and I think he just might sleep like a happy dog after chasing his tail tonight.
When visiting Deano and you don't find him in his room there is a BIG board in front of the nurses station and it is a schedule of each patients activities for the day. Just look up the room no. and it will tell you exactly where he is. It is their philosophy to have patients out of bed as much as possible so they do have a wheel chair in the room for Dean and they do encourage friends and family to take him out. There is a court yard and a family visiting area with a huge flat screen and computers. You just need to check with the nurse and let her know and also have her or him help you with getting Deano in and out of bed.
If you were wondering why I do not have pants that fit Deano, wonder no more. It is official he has lost apprx. 45 lbs. (shit is that all you ever had to do to drop that kinda weight - you think someone would have shared this info with me long ago).
After talking with the Social worker at LBM they try and have patients home within two weeks. Can you even believe that time frame. Well I cannot and to be honest, kinda took my breath away. First of all, he will require in home care, which I learned today, is not covered by insurance (I will have a sign up sheet at my front door for volunteers). The other thing that has me nervous (just one thing; I don't think so - for there are so many things) is our home may need to be retrofitted to accommodate Deano's needs (I am thinking we aren't going to fit here anymore (Grandma May, get ready us California Nambas are going to become Washington Nambas).
Deano's new attending physicians are still evaluating him and the Social worker thinks by next week they will have a more clear picture of the length of time Dean will be visiting LBM.
The Dr.'s are currently contemplating two new medications: Sinemet, which is used on Parkinsons Patients, and has been found to stimulate language in brain injury patients. Ritain, which is used for children with ADD, has been found to stimulate movement in patients with brain injury. The use of these two medications are optional and would be on a short term basis. With the Sinemet the time frame would be 3 months and if the patient is responding well then after 3 months they would start the weaning process and after cutting back and the language is still present they can then determine it was not the drug that stimulated the language and continue to wean. The Ritalin is known to cause agitation and insomnia in brain injury patients and if that is the reaction then it would be immediately omitted. So this is a decision for Deano on whether or not to start this type of therapy (Did I say Dean).
Oh, in Deans room right below his T.V. is another board and that too will display his schedule for the day.
I think that will do it for today.
I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going
And I, I got to be strong
Just keep pushing on
Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa
(from the mouth of a 16 year old - you think she knows something I don't. Or maybe I just need to try and be 16 again).
P.S. Nice hearing from you Ricky and thanks it is good to know someone is paying attention.
P.S.S. Thanks Grandma Jo and Mom and May - where would we be without you.
Every move I make feels
Lost with no direction
My faith is shaking
But I gotta keep trying
Gotta keep my head held high
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb
The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking
Can you believe we quietly approached Mile Marker 10 and I believe we are picking up momentum.
After a long day of waiting, Deano's transfer from Kindred to Long Beach Memorial was a success and he seemed to tolerate the ambulance drive very well.
Our departure from Kindred was definitely bittersweet. There were some, on staff, that touched my heart. There was also the convenience and being able to see Dean during lunch and after work. Because of the distance it just may work out that I now only see him on the weekends. Some think that may very well be a good thing. May make Dean want to work harder. There was another aspect of the departure that I also had to come to terms with. When we were transferred to Kindred there was a sense by me that we had no choice and I know there is always choice. We were given, probably, a 2 hour window to be transferred from UCLA to Kindred. And I believe that made it very easy for me to forget to honor the next step of Deano's journey. The difference now is that I was given time to discuss the discharge from Kindred and to make a decision on the next facility. And it was ultimately, as it was before, my decision on where we would travel next. I toured Long Beach Memorial and made a decision for the transfer. The decision was based on several things, not one of which was the distance. I based it on the look of the facility, my understanding of their program for rehabilitation, the kindness of the case worker on the phone and the social worker that provided me with the tour and their philosophy to have patients out of bed as much as possible. I don't like to be wrong (and I have to say again, for those of you who know me - you know that to be true) and in this circumstance I feel like I cannot be wrong because Deano's well being depends upon it.
Deano's first day at LBM and his schedule consisted of: a) bathing himself in the morning, b) dressing himself (that is right, clothes that do not consist of a hospital gown but of his own tennis shoes, socks, T-Shirt (you were expecting a button down) and c) hospital provided draw string pants (because I do not have a pair that fit him and he had to be ready to go by 9:00 am.
9:00 am Occupational Therapy
11:00 am Speech Therapy which consisted of food trials (applesauce, water & nectar)
1:00 pm Speech Therapy for swallowing and speaking
2:00 pm Physical Therapy
And at 4pm in the social room will be music therapy (optional).
Dean said he didn't sleep well last night and I think he just might sleep like a happy dog after chasing his tail tonight.
When visiting Deano and you don't find him in his room there is a BIG board in front of the nurses station and it is a schedule of each patients activities for the day. Just look up the room no. and it will tell you exactly where he is. It is their philosophy to have patients out of bed as much as possible so they do have a wheel chair in the room for Dean and they do encourage friends and family to take him out. There is a court yard and a family visiting area with a huge flat screen and computers. You just need to check with the nurse and let her know and also have her or him help you with getting Deano in and out of bed.
If you were wondering why I do not have pants that fit Deano, wonder no more. It is official he has lost apprx. 45 lbs. (shit is that all you ever had to do to drop that kinda weight - you think someone would have shared this info with me long ago).
After talking with the Social worker at LBM they try and have patients home within two weeks. Can you even believe that time frame. Well I cannot and to be honest, kinda took my breath away. First of all, he will require in home care, which I learned today, is not covered by insurance (I will have a sign up sheet at my front door for volunteers). The other thing that has me nervous (just one thing; I don't think so - for there are so many things) is our home may need to be retrofitted to accommodate Deano's needs (I am thinking we aren't going to fit here anymore (Grandma May, get ready us California Nambas are going to become Washington Nambas).
Deano's new attending physicians are still evaluating him and the Social worker thinks by next week they will have a more clear picture of the length of time Dean will be visiting LBM.
The Dr.'s are currently contemplating two new medications: Sinemet, which is used on Parkinsons Patients, and has been found to stimulate language in brain injury patients. Ritain, which is used for children with ADD, has been found to stimulate movement in patients with brain injury. The use of these two medications are optional and would be on a short term basis. With the Sinemet the time frame would be 3 months and if the patient is responding well then after 3 months they would start the weaning process and after cutting back and the language is still present they can then determine it was not the drug that stimulated the language and continue to wean. The Ritalin is known to cause agitation and insomnia in brain injury patients and if that is the reaction then it would be immediately omitted. So this is a decision for Deano on whether or not to start this type of therapy (Did I say Dean).
Oh, in Deans room right below his T.V. is another board and that too will display his schedule for the day.
I think that will do it for today.
I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going
And I, I got to be strong
Just keep pushing on
Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa
(from the mouth of a 16 year old - you think she knows something I don't. Or maybe I just need to try and be 16 again).
P.S. Nice hearing from you Ricky and thanks it is good to know someone is paying attention.
P.S.S. Thanks Grandma Jo and Mom and May - where would we be without you.
Wednesday, June 24, 2009
Thursday, June 24
Well it appears we are on the move again.
Tomorrow Deano will be transferred to Long Beach Memorial, you guessed it, in Long Beach.
Tomorrow I will post the address and room no.
Tomorrow Deano will be transferred to Long Beach Memorial, you guessed it, in Long Beach.
Tomorrow I will post the address and room no.
Tuesday, June 23, 2009
Tuesday, June 23
Where does the time go???
Before I forget: Deano is now in Room 51, right down the hall from where is was and two doors up from where he started.
So, (that just continually seems a great way to start out), These past couple of days (actually since Friday) have put me a little (okay a lot) on edge.
As I previously indicated it started on Friday (Not April 3 Friday, a few days ago Friday) when I was working and received the call from the case manager wanting to discuss Deano's discharge plan. Upon hearing my very panicked voice the case manager said not to worry because they wouldn't be moving Deano until Monday so I had plenty of time. Yeah right....
Let me see if I can keep on track because my brain has been filled with so much information these past couple of days in addition to the past couple of months.
Let's see how is the shortest way possible I can explain what has transpired:
On Monday I met with the Dr. and the case manager, and that was after talking to the case manager from Long Beach Memorial, and the Dr. does not believe that Deano is ready to endure acute therapy (now acute by definition at Long Beach Memorial would mean 3 hours of daily therapy consisting of: occupational, speech and physical). Here is the thing, and this is all decided by the insurance companies and come to find out Deano was already being evaluated by Long Beach Memorial before I even knew they existed. Once our insurance company declines treatment for Deano at Kindred he will have to move to either an acute rehab facility, whether that be Long Beach Memorial or quite possibly, a nursing home.
So I have been speaking with Dr.'s, case workers, and directors to first of all, buy us more time where we are to try and get Deano better prepared for what lies ahead and to convince the powers that be that the reason, as I see it, that Dean has not been doing well in his therapy is because he is not sleeping well. And it would appear that he is not sleeping well (at night that is) because he appears to be quite agitated by loud noise, (like the t.v. and the sounds of other patients in tremendous amount of pain). This is what we have worked out so far: a) Dean is now in a private room (Room 51), b) He is receiving Benadryl at night to help him sleep and c) the PT will make every attempt to work with Deano in the morning rather than late afternoon and d) PT will also increase the intensity of his various therapies.
And while all that is going on I am in communication with the case manager for Long Beach Memorial daily so that they can reevaluate and praying that we do not get evicted from our current location. And at the end of the day "We might just get what we need" and whose to say, certainly not me...
That is pretty much what I can explain without having you read on and on for hours.
This afternoon, when I saw Deano he was eating applesauce and then he drank milk. The speech therapist said he made a tremendous improvement on his ability to swallow and follow direction. Tomorrow he will be treated to a trial meal which will consist of pureed vegetables, meat and mashed potatoes (yum, yum). Provided he continues to tolerate this well and does not show any signs that the food may be traveling down the wrong path, then they will continue to incorporate foods into his diet and eventually remove the feeding tube.
With regards to his speech I was incorrect in the information I provided (well not really) I just wasn't up to date on the tests that Dean had been given. The good news he does not have vocal cord paralysis. What he is faced with, however, is Dysphagia and Apraxia of Speech.
Basically dysphagia occurs when there is a problem with any part of the swallowing process caused by such things as severe trauma to the brain such as a stroke. The speech therapists have been working with Dean to strengthen the muscles which allow him to swallow and process food and beverage. And as of today it would appear that is on the mend.
Apraxia is a speech disorder in which a person has trouble saying what he wants to say correctly and consistently not caused by weakness or paralysis of the speech muscles. It is caused by damage to the parts of the brain that are involved in speaking and involves the loss or impairment of existing speech abilities.
Again all in a nut shell and it would appear we have our work cut out.
The Dr. also ordered a CT scan today to make sure nothing else was causing Deano's reluctance to participate in PT.
Oh, before I forget, one more thing, I did tour the facilities at Long Beach Memorial and it appears they have a really great program for rehabilitation of its patience. Did I say based on there initial evaluation Long Beach declined Deano at this time.
Music is the healing force of the world;
It's understood by every Man, Woman, Boy and Girl...........................
Before I forget: Deano is now in Room 51, right down the hall from where is was and two doors up from where he started.
So, (that just continually seems a great way to start out), These past couple of days (actually since Friday) have put me a little (okay a lot) on edge.
As I previously indicated it started on Friday (Not April 3 Friday, a few days ago Friday) when I was working and received the call from the case manager wanting to discuss Deano's discharge plan. Upon hearing my very panicked voice the case manager said not to worry because they wouldn't be moving Deano until Monday so I had plenty of time. Yeah right....
Let me see if I can keep on track because my brain has been filled with so much information these past couple of days in addition to the past couple of months.
Let's see how is the shortest way possible I can explain what has transpired:
On Monday I met with the Dr. and the case manager, and that was after talking to the case manager from Long Beach Memorial, and the Dr. does not believe that Deano is ready to endure acute therapy (now acute by definition at Long Beach Memorial would mean 3 hours of daily therapy consisting of: occupational, speech and physical). Here is the thing, and this is all decided by the insurance companies and come to find out Deano was already being evaluated by Long Beach Memorial before I even knew they existed. Once our insurance company declines treatment for Deano at Kindred he will have to move to either an acute rehab facility, whether that be Long Beach Memorial or quite possibly, a nursing home.
So I have been speaking with Dr.'s, case workers, and directors to first of all, buy us more time where we are to try and get Deano better prepared for what lies ahead and to convince the powers that be that the reason, as I see it, that Dean has not been doing well in his therapy is because he is not sleeping well. And it would appear that he is not sleeping well (at night that is) because he appears to be quite agitated by loud noise, (like the t.v. and the sounds of other patients in tremendous amount of pain). This is what we have worked out so far: a) Dean is now in a private room (Room 51), b) He is receiving Benadryl at night to help him sleep and c) the PT will make every attempt to work with Deano in the morning rather than late afternoon and d) PT will also increase the intensity of his various therapies.
And while all that is going on I am in communication with the case manager for Long Beach Memorial daily so that they can reevaluate and praying that we do not get evicted from our current location. And at the end of the day "We might just get what we need" and whose to say, certainly not me...
That is pretty much what I can explain without having you read on and on for hours.
This afternoon, when I saw Deano he was eating applesauce and then he drank milk. The speech therapist said he made a tremendous improvement on his ability to swallow and follow direction. Tomorrow he will be treated to a trial meal which will consist of pureed vegetables, meat and mashed potatoes (yum, yum). Provided he continues to tolerate this well and does not show any signs that the food may be traveling down the wrong path, then they will continue to incorporate foods into his diet and eventually remove the feeding tube.
With regards to his speech I was incorrect in the information I provided (well not really) I just wasn't up to date on the tests that Dean had been given. The good news he does not have vocal cord paralysis. What he is faced with, however, is Dysphagia and Apraxia of Speech.
Basically dysphagia occurs when there is a problem with any part of the swallowing process caused by such things as severe trauma to the brain such as a stroke. The speech therapists have been working with Dean to strengthen the muscles which allow him to swallow and process food and beverage. And as of today it would appear that is on the mend.
Apraxia is a speech disorder in which a person has trouble saying what he wants to say correctly and consistently not caused by weakness or paralysis of the speech muscles. It is caused by damage to the parts of the brain that are involved in speaking and involves the loss or impairment of existing speech abilities.
Again all in a nut shell and it would appear we have our work cut out.
The Dr. also ordered a CT scan today to make sure nothing else was causing Deano's reluctance to participate in PT.
Oh, before I forget, one more thing, I did tour the facilities at Long Beach Memorial and it appears they have a really great program for rehabilitation of its patience. Did I say based on there initial evaluation Long Beach declined Deano at this time.
Music is the healing force of the world;
It's understood by every Man, Woman, Boy and Girl...........................
Sunday, June 21, 2009
Sunday, June 21
Happy first day of Summer and Happy Fathers Day!!!!
Meeting with the Dr. and the Case Social Worker tomorrow. Will fill you in then.
You can't always get what you want and if try sometime you just might find you get what you need....
Meeting with the Dr. and the Case Social Worker tomorrow. Will fill you in then.
You can't always get what you want and if try sometime you just might find you get what you need....
Saturday, June 20, 2009
Saturday, June 20
Happy Fathers Day to all you Dads out there!!!
Well something has been bothering Deano for the past few days and he has not wanted to participate in physical therapy. I think Deano has a crush on Naoko, his female therapist and she has been on vacation and Adam, the male therapist just cannot get Deano to cooperate. Dean's sitting balance has really improved. He can sit up without holding himself up with his hand. He still has a little difficulty looking up instead of down.
Today, I waited all day, just like yesterday, to see the Dr. No luck today.
Tomorrow Riley and I will be driving to Long Beach to get a feel for the area where the hospital is located. I probably will not be able to tour the facilities until Monday and it is really looking like Tuesday will be the transfer day.
That's it; that's all, just for now.........................
Well something has been bothering Deano for the past few days and he has not wanted to participate in physical therapy. I think Deano has a crush on Naoko, his female therapist and she has been on vacation and Adam, the male therapist just cannot get Deano to cooperate. Dean's sitting balance has really improved. He can sit up without holding himself up with his hand. He still has a little difficulty looking up instead of down.
Today, I waited all day, just like yesterday, to see the Dr. No luck today.
Tomorrow Riley and I will be driving to Long Beach to get a feel for the area where the hospital is located. I probably will not be able to tour the facilities until Monday and it is really looking like Tuesday will be the transfer day.
That's it; that's all, just for now.........................
Friday, June 19, 2009
Friday, June 19
Today, I got that phone call at work that I knew was coming - especially when I saw the trach button had been removed. Which I might add, is healing very nicely.
The account manager from Kindred called me today so that we could discuss Deano's discharge plan. Which is really not a plan, more like insurance will no longer pay for him to be here so you (meaning me) need to decide where Deano's next home will be.
Even though I knew the call was coming - still not prepared.
According to his current Dr. and that too will be changing soon, Dean has paralysis of the Vocal Cords and that is actually referred to by another name (ooops, couldn't help it and I did it again 2 prepositions together). The Dr. thought that was good news because it means with extensive therapy that Dean will find his voice.
I tried to leave the hospital 10 times tonight and what I noticed Dean even without words has discovered how to get what he wants. When you are visiting keep a close eye on that left pointer because it is working overtime.
So anyway, we are looking for his new home to provide acute rehabilitation therapy (was that an oxymoron and I think not after all).
The two choices we have been given are both in Long Beach: St. Mary's, which is not accredited, and Long Beach Memorial, which has come highly recommended.
As of right now we have another 5 days, after spending all day at the hospital thinking we were being transferred on Monday, we now have until Tuesday, I believe. I am trying to get an appt. to tour Long Beach Memorial.
Keep checking and I will post our new location as quickly as I possibly can.
And were rolln'.................................................
The account manager from Kindred called me today so that we could discuss Deano's discharge plan. Which is really not a plan, more like insurance will no longer pay for him to be here so you (meaning me) need to decide where Deano's next home will be.
Even though I knew the call was coming - still not prepared.
According to his current Dr. and that too will be changing soon, Dean has paralysis of the Vocal Cords and that is actually referred to by another name (ooops, couldn't help it and I did it again 2 prepositions together). The Dr. thought that was good news because it means with extensive therapy that Dean will find his voice.
I tried to leave the hospital 10 times tonight and what I noticed Dean even without words has discovered how to get what he wants. When you are visiting keep a close eye on that left pointer because it is working overtime.
So anyway, we are looking for his new home to provide acute rehabilitation therapy (was that an oxymoron and I think not after all).
The two choices we have been given are both in Long Beach: St. Mary's, which is not accredited, and Long Beach Memorial, which has come highly recommended.
As of right now we have another 5 days, after spending all day at the hospital thinking we were being transferred on Monday, we now have until Tuesday, I believe. I am trying to get an appt. to tour Long Beach Memorial.
Keep checking and I will post our new location as quickly as I possibly can.
And were rolln'.................................................
Thursday, June 18, 2009
Thursday, June 18
I can barely believe it is the middle of June and summer is upon us.
Which brings to mind the words of a song: "Cause it's summer; summer time is here".
Anyway, as we head towards mile marker 6, I believe we have reached a plateau. So if you were on a course a plateau would basically mean you weren't going either up or down hill.
For those of you who know me well you know that I am not particularly fond of plateaus. You get no momentum from them.
See you at 6..........
Which brings to mind the words of a song: "Cause it's summer; summer time is here".
Anyway, as we head towards mile marker 6, I believe we have reached a plateau. So if you were on a course a plateau would basically mean you weren't going either up or down hill.
For those of you who know me well you know that I am not particularly fond of plateaus. You get no momentum from them.
See you at 6..........
Tuesday, June 16, 2009
Tuesday, June 16
Day after day I'm more confused
Yet I look for the light through the pourin' rain
You know that's a game that I hate to lose
And I'm feelin' the strain;
Well I would say we just approached mile marker 5 (that means we only have 4 more sets of 5):
This evening when I visited Dean he had a bandage with tape around his neck. And ya wanna know why... Because they removed the Trach Button.
I don't know if anyone noticed but the only tubes he now has are the feeding tube and catheter. He is not even getting oxygen anymore (ooh, is that a double negative; I hope not because I said it and I ain't changin' it).
And when my mind is free
You know a melody can move me
And when I'm feelin' blue
A guitar's comin' through to sooth me
Thanks for the joy that you've given me
I want you to know I believe in your song
Your rythem and rhyme and harmony
You've helped me along
Makin' me strong
Yet I look for the light through the pourin' rain
You know that's a game that I hate to lose
And I'm feelin' the strain;
Well I would say we just approached mile marker 5 (that means we only have 4 more sets of 5):
This evening when I visited Dean he had a bandage with tape around his neck. And ya wanna know why... Because they removed the Trach Button.
I don't know if anyone noticed but the only tubes he now has are the feeding tube and catheter. He is not even getting oxygen anymore (ooh, is that a double negative; I hope not because I said it and I ain't changin' it).
And when my mind is free
You know a melody can move me
And when I'm feelin' blue
A guitar's comin' through to sooth me
Thanks for the joy that you've given me
I want you to know I believe in your song
Your rythem and rhyme and harmony
You've helped me along
Makin' me strong
Monday, June 15, 2009
Monday, June 15, 2009
Not much to report today.
Still working on that uphill climb to mile 5. I hope we get there soon because I am running out of gas(that reminds me I need gas in both vehicles).
Deano is really liking the T.V. right now (oh, that was nothing new). The new thing is without sound.
I have not heard any more rumors about us moving to a different location.
Goodnight and may God wake you with the morning light.
Still working on that uphill climb to mile 5. I hope we get there soon because I am running out of gas(that reminds me I need gas in both vehicles).
Deano is really liking the T.V. right now (oh, that was nothing new). The new thing is without sound.
I have not heard any more rumors about us moving to a different location.
Goodnight and may God wake you with the morning light.
Sunday, June 14, 2009
June 14, 2009
Those happy hours
That we once knew
Though long ago,
They still make me blue
......................................
Well I think last time we met we were headed for mile marker 5 and let me tell you I think it is all up hill on this mile and we are still climbing to reach 5. I am working so hard to get there I was so out of breath I couldn't even talk. As you can see, Dean managed to write his first name with his left hand. The last name on the page was supposed to be Riley. This exercise really pooped him out.
Both me and Riley have been playing tic-tac-toe with Deano and when Dean and I played neither one of us won. That says a lot (or maybe not)(no Blondie jokes).
Nioko, the physical therapist, is working very aggressively with Deano. They are working on his sitting balance and now he can sit up in the bed without her holding on to him and his standing balance. They are also working on his balance with a cane. The occupational therapist, Lana, works with Dean on brushing his teeth and hair (which was a new one for him, since he was a wash and wear kinda guy).
My sister Kristine was with us today and at some point she will post a video of Riley and Deano playing catch. I am not sure what that does for Dean's spirit and I can see what it does for Riley to be able to play catch and tic-tac-toe with his Dad.
So, when I said we may be looking for a new home shortly I didn't think it meant we would be playing musical rooms. Well the music has stopped and we have safely landed in Room 47B-East Wing.
P.S. Thank you to Janet and Fred for the Banana Nut Bread. I am sorry I missed you and Karen and Mark. Maybe next time you make your way out here.
P.S.S. Thank you Kristine for checking in with me today.
P.S.S.S. Thank you Kathy and Alan for the best ham and cheese sandwich (actually best sandwich period) that I have ever had.
P.S.S.S.S. And thank you to everyone out there who continue to pray and keep us in your thoughts and for continuing to check up on Deano. He continues to get a steady stream of daily visitors.
............................................
They say that time
It heals a broken heart
But time has stood still
Since we've been apart...
That we once knew
Though long ago,
They still make me blue
......................................
Well I think last time we met we were headed for mile marker 5 and let me tell you I think it is all up hill on this mile and we are still climbing to reach 5. I am working so hard to get there I was so out of breath I couldn't even talk. As you can see, Dean managed to write his first name with his left hand. The last name on the page was supposed to be Riley. This exercise really pooped him out.
Both me and Riley have been playing tic-tac-toe with Deano and when Dean and I played neither one of us won. That says a lot (or maybe not)(no Blondie jokes).
Nioko, the physical therapist, is working very aggressively with Deano. They are working on his sitting balance and now he can sit up in the bed without her holding on to him and his standing balance. They are also working on his balance with a cane. The occupational therapist, Lana, works with Dean on brushing his teeth and hair (which was a new one for him, since he was a wash and wear kinda guy).
My sister Kristine was with us today and at some point she will post a video of Riley and Deano playing catch. I am not sure what that does for Dean's spirit and I can see what it does for Riley to be able to play catch and tic-tac-toe with his Dad.
So, when I said we may be looking for a new home shortly I didn't think it meant we would be playing musical rooms. Well the music has stopped and we have safely landed in Room 47B-East Wing.
P.S. Thank you to Janet and Fred for the Banana Nut Bread. I am sorry I missed you and Karen and Mark. Maybe next time you make your way out here.
P.S.S. Thank you Kristine for checking in with me today.
P.S.S.S. Thank you Kathy and Alan for the best ham and cheese sandwich (actually best sandwich period) that I have ever had.
P.S.S.S.S. And thank you to everyone out there who continue to pray and keep us in your thoughts and for continuing to check up on Deano. He continues to get a steady stream of daily visitors.
............................................
They say that time
It heals a broken heart
But time has stood still
Since we've been apart...
Thursday, June 11, 2009
Thursday, June 11
Nothing today.
When you visit Dean, check his room no. because as of this evening he is no longer in 59B and I am not sure what room he will be in tomorrow.
...................
When you visit Dean, check his room no. because as of this evening he is no longer in 59B and I am not sure what room he will be in tomorrow.
...................
Wednesday, June 10, 2009
Tuesday, June 9, 2009
Tuesday, June 9
Well what can I say, it is 8:54 Tuesday evening and Riley and I are just getting home from leaving the house at 8:00 am this morning.
Tim has gone home. Larry and Paul left on Monday and I dropped May off at the airport early afternoon.
May and I made several trips to the hospital today for reasons that I will not even go into at this moment.
Suffice to say Deano's health continues to improve.
So here we are.
Looking forward to brighter tomorrows.............
Tim has gone home. Larry and Paul left on Monday and I dropped May off at the airport early afternoon.
May and I made several trips to the hospital today for reasons that I will not even go into at this moment.
Suffice to say Deano's health continues to improve.
So here we are.
Looking forward to brighter tomorrows.............
Monday, June 8, 2009
Monday, June 8
Today my emotions have the better of me.
So for the second night I am left with nothing to say.
P.S. Thank you Larry Namba for the deeeeelicious meals while you were here and for getting the truck door to work. Anytime you want to come back and help me out with that project we were talking about would be greaaaaaaaaaat.
Signing off for now.............
So for the second night I am left with nothing to say.
P.S. Thank you Larry Namba for the deeeeelicious meals while you were here and for getting the truck door to work. Anytime you want to come back and help me out with that project we were talking about would be greaaaaaaaaaat.
Signing off for now.............
Sunday, June 7, 2009
Sunday, June 7
Crazy day today. My body feeling lots of the stress today.
Got to talk to the Dr. today and he said he is working on Deano's stay and where we go from here.
It is some one's bedtime right now so got to cut it short.
Larry and Paul leaving tomorrow and May leaving on Tuesday.
Lots of adjusting.
Got to talk to the Dr. today and he said he is working on Deano's stay and where we go from here.
It is some one's bedtime right now so got to cut it short.
Larry and Paul leaving tomorrow and May leaving on Tuesday.
Lots of adjusting.
Saturday, June 6, 2009
Saturday, June 6
Hotel Namb's is becoming very popular these days. Who woulda thunk it??? Amazing what can happen when you just let it happen. Our two bedroom, 1 bathroom has now lovingly held so many wanting to be close to Deano.
Rumor was as I suspected. It appears that our sacred time at Kindred may be coming to a close. And may I say they have prepared him well for the next step of his journey.
I am hoping to catch the Dr. tomorrow so I can get a sense of where we go from here.
Okay what Hags failed to mention, I didn't really let him stay here. He actually worked for room and board. Hags painted the side of the garage which by the way was tagged with graffiti. He fixed the toilet. He fixed the fence that was becoming weak from Coffee jumping on it (that Coffee, you just got to love him). He cleaned up the fish tank and I think he even fixed the front door which was sticking. And what he doesn't know is I actually slept with my mouth open which means I was pretty relaxed and I haven't slept that relaxed since Deano's been gone. I am making another list for the next time you come so check that calendar of yours. THANK YOU!
:-)
Larry cooked dinner tonight. Those Namba boys sure can cook and yesterday he fixed a downspout for grandma Jo.
Well I will keep you abreast of our moving situation.
Rumor was as I suspected. It appears that our sacred time at Kindred may be coming to a close. And may I say they have prepared him well for the next step of his journey.
I am hoping to catch the Dr. tomorrow so I can get a sense of where we go from here.
Okay what Hags failed to mention, I didn't really let him stay here. He actually worked for room and board. Hags painted the side of the garage which by the way was tagged with graffiti. He fixed the toilet. He fixed the fence that was becoming weak from Coffee jumping on it (that Coffee, you just got to love him). He cleaned up the fish tank and I think he even fixed the front door which was sticking. And what he doesn't know is I actually slept with my mouth open which means I was pretty relaxed and I haven't slept that relaxed since Deano's been gone. I am making another list for the next time you come so check that calendar of yours. THANK YOU!
:-)
Larry cooked dinner tonight. Those Namba boys sure can cook and yesterday he fixed a downspout for grandma Jo.
Well I will keep you abreast of our moving situation.
Friday, June 5, 2009
Friday, June 5
Wow busy day:
Every one made it safely into town today.
And today we have a guest speaker:
I've learned why Nambs loves it here so much... It's really beautiful here.
Great to be joined by May and brother Larry today.
First a few clarifications... Contrary to popular belief in the greater Seattle area and who knows where else, Teri's name isn't Teri. It's Maria. Her Mom wanted to name her Theresa but her Dad won that battle. Dad called her Teri for short anyway so that's how it went till she had to actually use a name that was documented.
After she straightened me out on that I helped her out with some Seattle name stuff: Deano's last name is Coles. (He's a childhood neighbor) Dean's name is Nambs (or Namboid). Tim's last name is DiMarco (sorry about the spelling Tim). I'm Hags (Hrags), not Tim. When I showed up Nambs was expecting Tim, not me. It all worked out though.
My observations on Nambs yesterday and today: He's way in there when you look in his eyes and he's working his way out. It takes several moments for our questions to sink in and several more for his response. If there are no distractions his responses are mostly accurate. His Physical Therapists (I wish this thing had spell-check) tell me he is improving along these lines.
Yesterday I got to see him roll over to his left side unassisted several times. He has to really concentrate to drag his right leg over but he does it. Interestingly when he's doing his PT his brain works much faster and you can tell he is really focused. At PT they had him work on standing up from his wheelchair between parallel bars. His right arm can't help yet but he does most of the work himself. He took a couple very short steps with lots of help today. His left side is really strong but I could see his right quad flexing. He's chewed ice and swallowed so the Nilla Wafer therapy should be coming soon. I expect drastic improvement at that time.
I've been lucky to join Teri (Maria!) on the emotional roller coaster during my stay. It's heart-wrenching to see Nambs now compared to last Christmas when he visited us but it's equally overwhelming to see him standing himself up and working so hard. Things could be so much worse...
That being said, I encourage you to visit if you can. Nambs will give you a big "cowboy-grin" followed by hand holding and maybe a hug. It sure worked for me...
Thanks Teri for letting me blog tonight. (Or did you just want the night off?!)
Hags
Every one made it safely into town today.
And today we have a guest speaker:
I've learned why Nambs loves it here so much... It's really beautiful here.
Great to be joined by May and brother Larry today.
First a few clarifications... Contrary to popular belief in the greater Seattle area and who knows where else, Teri's name isn't Teri. It's Maria. Her Mom wanted to name her Theresa but her Dad won that battle. Dad called her Teri for short anyway so that's how it went till she had to actually use a name that was documented.
After she straightened me out on that I helped her out with some Seattle name stuff: Deano's last name is Coles. (He's a childhood neighbor) Dean's name is Nambs (or Namboid). Tim's last name is DiMarco (sorry about the spelling Tim). I'm Hags (Hrags), not Tim. When I showed up Nambs was expecting Tim, not me. It all worked out though.
My observations on Nambs yesterday and today: He's way in there when you look in his eyes and he's working his way out. It takes several moments for our questions to sink in and several more for his response. If there are no distractions his responses are mostly accurate. His Physical Therapists (I wish this thing had spell-check) tell me he is improving along these lines.
Yesterday I got to see him roll over to his left side unassisted several times. He has to really concentrate to drag his right leg over but he does it. Interestingly when he's doing his PT his brain works much faster and you can tell he is really focused. At PT they had him work on standing up from his wheelchair between parallel bars. His right arm can't help yet but he does most of the work himself. He took a couple very short steps with lots of help today. His left side is really strong but I could see his right quad flexing. He's chewed ice and swallowed so the Nilla Wafer therapy should be coming soon. I expect drastic improvement at that time.
I've been lucky to join Teri (Maria!) on the emotional roller coaster during my stay. It's heart-wrenching to see Nambs now compared to last Christmas when he visited us but it's equally overwhelming to see him standing himself up and working so hard. Things could be so much worse...
That being said, I encourage you to visit if you can. Nambs will give you a big "cowboy-grin" followed by hand holding and maybe a hug. It sure worked for me...
Thanks Teri for letting me blog tonight. (Or did you just want the night off?!)
Hags
Thursday, June 4, 2009
Thursday, June 4
There's nothing you can do that can't be done.
Nothing you can sing that can't be sung.
Nothing you can say but you can learn how to play the game. It's easy.
Nothing you can make that can't be made.
No one you can save that can't be saved.
Nothing you can do but you can learn how to be you in time. It's easy.
Big weekend with lots of visitors.
Tim, an old friend of Deano's made it in today from Seattle (but not really, actually via San Diego but from Seattle). Tomorrow May and, as I understand it, Larry (the twin of Gary), Deano's brother, are flying in tomorrow. And Paul, Deano's cousin, was also supposed to be in tonight (flying standby so I guess we will just wait and see if he makes it).
Tim spent the afternoon with Deano and they were able to take a cruise outside around the parking lot and through an obstacle course. Tim said Deano turns over to his left all on his own. He also thought Deano is in much better shape than what he expected. Tim was a little concerned that maybe Deano would not remember him and Tim said as soon as he saw Deano he knew right of way there was definitely recognition. Tim also got one of those huge teddy bear hugs from Deano.
Well it is pretty late and I have had a couple of Tim's Mrs. Lupner's and they are pretty darn deeeelicioussssssssss. We will see how they taste tomorrow morning.
All you need is love, All you need is love. Love is all you need.
Nothing you can know that can't be known.
Nothing you can see that isn't shown.
Nowhere you can be that isn't where you're meant to be. It's easy.
P.S. Hey Colorado Uncle Jim, what did you say about the Magic. That was some Magic displayed tonight. Oh that's right, just not by the Orlando Magic.
Nothing you can sing that can't be sung.
Nothing you can say but you can learn how to play the game. It's easy.
Nothing you can make that can't be made.
No one you can save that can't be saved.
Nothing you can do but you can learn how to be you in time. It's easy.
Big weekend with lots of visitors.
Tim, an old friend of Deano's made it in today from Seattle (but not really, actually via San Diego but from Seattle). Tomorrow May and, as I understand it, Larry (the twin of Gary), Deano's brother, are flying in tomorrow. And Paul, Deano's cousin, was also supposed to be in tonight (flying standby so I guess we will just wait and see if he makes it).
Tim spent the afternoon with Deano and they were able to take a cruise outside around the parking lot and through an obstacle course. Tim said Deano turns over to his left all on his own. He also thought Deano is in much better shape than what he expected. Tim was a little concerned that maybe Deano would not remember him and Tim said as soon as he saw Deano he knew right of way there was definitely recognition. Tim also got one of those huge teddy bear hugs from Deano.
Well it is pretty late and I have had a couple of Tim's Mrs. Lupner's and they are pretty darn deeeelicioussssssssss. We will see how they taste tomorrow morning.
All you need is love, All you need is love. Love is all you need.
Nothing you can know that can't be known.
Nothing you can see that isn't shown.
Nowhere you can be that isn't where you're meant to be. It's easy.
P.S. Hey Colorado Uncle Jim, what did you say about the Magic. That was some Magic displayed tonight. Oh that's right, just not by the Orlando Magic.
Wednesday, June 3, 2009
Wednesday, June 3
Late night tonight...
P.S. Thanks to Bob and Laura for leaving Baby Blu for Deano.
P.S.S. Thanks to Michael for trusting Deano with your Magical Blanket - he obviously remembers...
P.S. Thanks to Bob and Laura for leaving Baby Blu for Deano.
P.S.S. Thanks to Michael for trusting Deano with your Magical Blanket - he obviously remembers...
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