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.
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