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

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.

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.

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)

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,

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.

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.

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