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
Monday, September 21, 2009
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.
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