"Sunday Insperation"

08-30-2009
0747 Hours

This morning as I prepare to tell you of my day with Darlene yesterday, I find myself wondering if I am sufficiently giving you information that leaves you as excited as I am.

You, Dar’s readers are not the only ones following a blog. I too, am following not just one but four other blogs of personal friends and yes loved ones that are going through their own “journey back to life”. Caring, praying, supporting, struggling for a loved one of their own. Two of my daily reads you already know about, John Murphy and Ryne Spitzer, these two young men and their families have become a very big part of my life, a cornerstone and support center for my daily ability to get up in the morning.

I receive email notification each and every time John’s mom and Ry’s dad post a blog. My netbook is on 24/7, my blackberry never gets turned off, I am never without the ability for any of these family members to contact me, never out of touch with any of you. It amazes me the technology that we have become so dependant upon. I could not imagine what it would be like these last 8 months without my blackberry and my netbook. Just moments ago I received email notification that Ry’s dad Mark has just posted his latest update on Ryne. I will choose to read it later as I would like to keep my “train of thought going”.

My other two blogs that I follow are of a 6 year old little girl and her recent brain surgery in the bay area. Grace Farris. Her blog is also on Carepages. I have never met Grace, I know her mom and her grandpa through business dealings Darlene and I have had. The families live in Chico and the story of this little “angel” is nothing less than amazing and a read that I would encourage you to look at. Recently released to go back home Grace is an amazing little girl.

My fourth read is of a gentleman that I have known he and his family for many years. Not having personal contact in many years, Dar and I and even many of you have had contract with him directly or indirectly. His name, Ken Riemers, formerly County Assessor for the County of Butte. Ken retired recently in order to save jobs in his office. Just days after his retirement, Ken was at his mountain cabin and was stricken with what turned out to be a stroke. His story can also be read on Carepages.

These four families represent what I have come to realize is that “tragedies” such as these do not recognize age; they don’t discriminate about race, religion, ethnic origin or financial status. These tragedies are a part of life that we never know where and to whom it might strike. When this event does happen it puts all involved into a world unique to itself. People who did not know one another prior to the event, now clutching to, hanging on, struggling together, finding support together, finding the strength to take a single step day after day, hour after hour. Sharing their emotions, sharing their fears, sharing the excitement of some tiny, little sign of progress with their loved one who is working so very hard to return to them. Yes and at times allowing themselves to enjoy but just a brief moment of laughter, share a family story that brings a smile to everyone, a memory of a camping trip, a graduation, a Xmas from the past. These are the things that we as “caregivers”, moms, dads, brothers, sisters, husbands and wives, all family members cling to on a moment-by-moment basis. I am reminded of the cat holding onto the knot at the end of a rope with a look of fear in his face. The caption at the bottom reads, “hang in there”, a phrase that up till 8 months ago for me had a totally different meaning. To each and every on of my “new” family members I am sure it too had a different meaning!!!

I don’t have the writing ability my good friend Mark does, I don’t have the medical knowledge he spent so many years studying to become a doctor. I do share with him a love for music, I look so forward to his daily musical analogy, his thought for the day, his inspirational motivator. I don’t have Peg’s ability to put such a moving and thoughtful package of words together, that after you have read what she has written you leave knowing she writes from a heart filled with love, a sympathetic and compassionate soul that can only be described as God inspired.

What I do share with these two wonderful people and their families is a personal relationship with God. Although some might say that mine is and always has been a “little out of the box”, a little “different” it doesn’t make it any less real. I know that without “Him” in my life, tapping on my shoulder, speaking to me in that little voice, reminding me that He is in control I on my own would not be able to keep the pace and have the endurance to get up every morning, go to work, drive back and forth to the bay, fight the bureaucrats, and stay focused on the task at hand. Dar’s Recovery.

To all of my “new family”, the Murphy’s, the Spitzers, the Stewarts, the Riemers, the Farris’s, thank you for your writings, thank you for your strength, thank you for your commitment, thank you for not ever giving up, thank you for hope, thank you for always looking upward and onward, thank you for what you have given me. The strength to continue day to day, the strength to laugh once in a while, the strength to forget my selfishness and put Dar’s needs first, the strength to look up and see the heavens and the angels that are so apparent in our particular tragedy. God bless each of you.

Dar had a wonderful day, full of joy and laughter. I was again given the opportunity to see things that she is able to do since the increase of her Baclofen that cause me great excitement about the “trial injection” scheduled for Tuesday.

While sitting with Dar and putting lavender lotions on her hands and arms Dar is now moving all of her fingers on her left hand and opening and closing it more than she has ever in the past. Thumb movement on the left hand has also increased dramatically. The right hand and arm are still very stiff and although she has full range of motion it is very painful until we get those muscles stretched out and relaxed. I hope you as readers of Dar’s blog can find your way to be as excited as I when I tell you of these things, it may seem such a small thing, but in reality it is absolutely HUGE. These are phenomenal steps on Dar’s part.

While applying Dar’s lavender cream I found that I needed to put the bottle somewhere and there was not a place to be found. Dar, sitting in her chair in the middle of the activity room and not a place to put this stupid bottle, with greasy hands and me being the “brat” that I am I asked Dar to open her knees and hold the bottle. ****, if the little scamp opened her knees about 8 inches and when I put the bottle against her left knee she closed them and held onto the bottle. You could have knocked me over with a feather!!!!!

Now, mind you, I’m thinking coincidence, so I asked Dar to open her knees and drop the bottle. She did, all the while with that “Cheshire cat” look she is famous for. Ok, you guessed it, I asked her again to open the knees and hold the bottle, and she did just as before only this time when I tried to take it from her she would not let go. You could actually see her ab muscles and her little butt rise up in the chair as she squeezed tighter and tighter on that silly bottle.

Before leaving to come back home, Dar was squeezing my blackberry on edge and making the “voice dialing” active. When she made that phone talk you would have thought she won the lottery. She was able to squeeze the phone so hard it would collapse and fall out from her knees. Little things like this are the things that keep us all going and show how hard Dar is working.

Although still with difficulty “voicing” words Dar answered all questions and worked on memory skills throughout the day. At times her words were very clear but at a minimum she would always “mouth” the answers.

As I said at the top of the editorial, these events of the day give me much excitement about the “trial test” on Tuesday. Here is the plan for the day.

We are leaving CM at 6:00 am on Tuesday (not Monday), arrive by 6:30 at Marin General and have the injection of Baclofen at 7:30. Immediately following and for probably 3-6 hours Dar’s “tone/spastisity” will be re-evaluated. If there is a “reduction or elimination” of the “tone” and or “spastisity” we will have had a successful test. Because I am being optimistic, once the successful test is acknowledged I am sure we will move to discussion of “pump placement” and when the procedure will be done. Everyone believes that due to what we have seen with the increase in the oral Baclofen we will see some dramatic test results.

Dar will spend Tuesday night at MG and barring any complications we will return to CM on Wednesday and await the surgical procedure of pump placement.

Please send out your prayer warriors on Tuesday morning, this is a huge day for Dar and the success of this test and the placement of the pump has gigantic possibilities, this devise not only could eliminate pain but could very well give Dar back “functionality”, the ability to maybe walk again, comb her hair, hold a coffee cup. We already know the mental function, the command request from the brain is intact, and we know she can make the request to move, so as Dr. D so put it last week, “let’s get this show on the road”.

I should know by early afternoon what the results are. The pre-tone evaluation has already been done and “stats” recorded, after the injection the therapists will again “evaluate” and record their findings. Please, keep Dar in your prayers on Tuesday.

We love you all, and miss each of you,

Love,
Dar/Danny

"Baclofen Test Is Scheduled"

August 25, 2009
1834 Hours

Well here it is almost the middle of the week. The second week of school has started and the kids are settling into their routines. For me the added pressures of the kids return with all the projects I have going keeps me very busy during the day.

We have successfully added the “netbook” to Dar’s room. I used it twice on Sunday and have called at least once each of the regular work weekdays.

The audio works very well but we are having some difficulty with the video. Don’t know if it is related to the low pixel rating of the web cam, the distance the image is traveling or what. There is a definitive lapse between the time Dar says something and I actually see the image on the screen. It is like the audio and the video are not in sync. Maybe nothing I can do about it but if anyone has an idea please shoot me a comment. I guess the important thing is that Dar be able to still hear me on a regular basis and we keep her spirits up. We still work on our “tasks” and do our “chores”, I just have to remember to wait to see her reaction on the camera. I wonder if adding a USB Web Cam might have a better result. Someone talk to me. I’m pretty good with computers but this one is a little out of my league when it comes to Skype and web cams. Help me out.

Well, we are officially scheduled for the Baclofen trial test. We will discharge from Caremeridian on Monday and admit to Marin General Hospital, Dar will spend the night and have the Baclofen injection on Tuesday morning at 7:00 am. Evaluations regarding her tone will be done both before and after the injection. Dar will spend the night Tuesday and we hope to return back to CareMeridian on Wednesday. I am not sure if I will be able to stay with Dar in her room, if she will have a private room or what. If she shares I will not be able to stay with her due to HIPPA regulations. So at this point I will take a cot and a sleeping bag and stay in the truck if I need to. Probably could stay in the waiting room if need be, just have to wait and see.

You are probably aware that as of today I am very optimistic about this trial. With what I have seen since the increase of the oral medication I find it hard to believe that we will not have a good test result and move towards the implantation of the Baclofen Pump, something that could for all we know could give her back her mobility and allow her to move more freely. Please, prayer warriors, its time to go to work!!!!!!!!

I initially got pretty upset about having to discharge from one setting, admitting to another and then re-admitting back to where we came. I am somewhat better put still concerned about the whole thing. I have spoken to my Anthem Case Manager and she is doing everything she can to ease my fears. I wrote a letter to several medical people regarding Dar’s issues that I feel need to be addressed before she comes home. These issues to me are the very issues that need to be looked at and further evaluated before and while she is in a medical facility so that when Dar does come home she is at her “optimum” level and not needing a bunch of further test or evals. My case manager asked me to email this same letter to her so that she could forward and speak to the review doctor from Anthem and bring him up to speed on issues that I believe he may not be aware of at this point in time.

Folks again, I ask you and invite you to go see Dar. I realize things are a little up in the air at this time but when they settle down please if you have been at all wanting to go see her, please, please do it. Dar needs to see and hear your voices, she needs your encouragement, CareMeridian invites friends and family to come to see the residents, they encourage it, want it and it is part of the healing process. I’ve said it before and I will plead again, go see Dar.

Robyn Sousa and her merry band of friends are putting together something incredible. Robyn, Joe, Stacy and Jesse Sousa are dear friends of Dar’s and mine. We camp together, fish together and have become very close over the years. Robyn called me a few weeks ago with a burden on her heart to do something for Dar. Having just gone through something similar with a friend of both of ours Robyn saw first hand the things that come up financially that we often times don’t figure into the equation of bringing a loved one home that is going to require 24 hour care. Robyn asked me if I would object if she and her merry band of friends put together a fund raiser to help with those unexpected and always overwhelming costs that will surely arise. Even I, the one who has tried so diligently to think of everything did not think about things like pillows, a roll away chest to store medicines in, the plastic cups to dispense into, the syringes needed to administer the medication, the diapers and wet naps, the list goes on forever, these are just some of the things off the top of my head, the things that I don’t know if insurance is going to cover. Will it cover formula, will it cover linens, will it cover, will it cover.

Robyn is tentatively planning a huge event on the 12th of September. Depending on all things coming together this is when she would like to do it. If needed she will move towards an October “blow out”

She is talking about a huge yard sale, bar-b-que, live music, bake sale; raffle of great gifts, the list goes on. The event will take place at Joe’s Auto and Truck Shop in Oroville.

Dar and I would like to take this moment, this opportunity to say thank you to Robyn, Joe, Stacy, Jesse and Angel. We Love you and thank you and your entire merry band of helpers for what you are doing for Dar and I and wanting to “pay it forward”. The angels are dancing in heaven and I truly believe that He will bless each and every one of you.

Okay, now I’m losing it so I am going to post this for all to read. We love you all and thank each of you for your prayers, your monetary gifts for Dar’s bathroom remodel, her electrical outlets in the front room and just for being our friends. We love you all.

Love ya, good night

Darlene/Danny

"Miss Giggle Britches is Blooming"

August 20, 2009
1609 hours

The last two days have been absolutely amazing. Dar’s sister, mom and dad must have said their good byes on Sunday. When I called on Monday it did not appear that they had seen Dar before starting their journeys homeward. I spoke to Dar twice on Monday and she was in good spirits and vocalizing as much as she could. That was on Monday, Tuesday all heck broke loose.

When I called the first time I spoke with nurse Lissa, I was told that our “little wonder” had a new nickname. When I asked what it was I was told Dar had been nicknamed “miss giggle britches and miss giggle pants” It seems that Dar found her vocal cords and something humorous to think about and decided to entertain the staff and residents all day, I mean alllll day. Laughing and making sounds that we have not heard since leaving Kentfield.

When I spoke to Dar the first time by cell phone, (miss tami) at the helm Dar was still entertaining the staff and me. She was so full of life and happiness it was breath taking. It was one of the most memorable times that we have had on the phone. Able to make “vowel” sounds, attempting to complete questions with “word” answers, it was amazing. We spoke for some time and then I told her that I would call again just before bedtime. Calling about 7:30, again Dar was still laughing and have a great time. We spoke for some time and again worked on her breathing exercises and she was fabulous. We said good night about 8:00 and I reminded her I would call again the next day.

Wednesday I spoke with AnnMarie and was told that Dar rested and slept till about 2:30 in the morning and then decided to continue her laughing and vocalizing. Dar continued her happy attitude all day. When I called yesterday afternoon Dar was a little less “giggly” and definitely ready to work on her speech and saying words. Tami and I worked with Dar for about 20 minutes and Dar was “spot on” and right on task. Filling in the blanks, completing sentences and remembering peoples names just to name a few of the tasks we worked on. We closed our session and I told Dar that I would again call her before bedtime.

At 7:30 Tami called and you just had to be there to appreciate what happened next. For the next 45 minutes Dar shined like a diamond. It was incredible. Tami and I saw a young woman reaching for the stars and grabbing them by the handful. Dar continued right where we left off previously and even took things a step or two further. At times I could not hold back the tears. This lady has come so far and is making such progress, and I am so very proud of her.

We closed our talk about 8:15 and Tami and I spoke for a few more minutes privately and said our “we will see you soons”. You remember today is the day that Mark and Tami’s son Ryne returns to Merced. I know this is not good-bye it is only a break before we see them again. We will continue to text and call, read each other’s blogs and make phone calls all the time. Besides Dr Mark is going to be taking over Dar’s case with regard to her vocal cords and when the time is right her trach issues and sleep apnea. So, they ain’t seen the last of us. The rednecks will be coming with their house on wheels and putting it in their driveway. Dar and I will be praying for Ry and all of his family.

I am in the process of getting another “netbook” so that I can leave it in Dar’s room and use the Skype program to be able to call her and have web video. This way I can continue to work with her on a daily basis and not have her slip into a “funk”. I am hoping all I will have to do is call CM and ask someone to answer the computer when it rings and set the computer in front of Dar on a table and then we can work on her therapy. I truly think these calls on a daily basis have and do mean a lot to Dar and I plan on continuing them.

Lastly, I emailed Dr D about our recent events and asked if the increase in the the oral Baclofen, (in preparation for the trial), could be having an affect on Dar’s vocal cords. Dr D said “yes”, that it may be helping. Well whatever the reason, be it medication or just plain healing I am so excited I can hardly stand it. It is truly amazing what she has done in the last two days.

I just got off the phone with Kaylin, (speech) and she and Dar were working hard in speech class and Dar was doing very well. I had to clear the phone after a little bit cuz my voice was so exciting Dar that she was laughing almost non stop. Hopefully one phone call a day will be ok till this weekend when I get her Skype up and running. The other reason for the netbook is, cell reception for some reason is a real problem for most residents and Dar will not always be able to be rolled to a phone while she is in her chair. That being said I hope the netbook idea will work, we have good wi-fi connection so I will keep my fingers crossed. If you have an idea, speak up.

Well, hope you find this “way cool”, can’t wait to see the” little
giggle pants”. Talk to you soon, love ya all

Danny

"summer is coming to a close"

August 16, 2009
1908 hours

As I sit at the breakfast nook this evening, I find myself full of emotion, emotions that sometimes find their way to the surface and I have no choice but to let them go. This being said, please forgive if I ramble and make no sense.

Saturday with Dar was fabulous; Dar's mom and dad arrived early and were able to see Dar through all of her therapies. Dar was amazing and even I got to see progress I had not seen to date. Dennis worked with Dar for about an hour. Much of the time was working with Dar's neck and shoulder muscles. There has been great progress in Dar's tone but still she has much "tone" that will hopefully continue to dissipate. Dennis worked with Dar in her sitting position and she continues to fight for that center of position that allows her to support herself, Dar continues to do well. As Dennis moved to Dar’s feet, ankle and legs I saw something I had never seen before. Dennis took Dar by the ankles and began to give her “the dancing feet”, moving her feet and legs to a silly song he was singing and showing all of us how much Dar has improved in the lower trunk. She has absolutely “full range of motion”, no pain and even finds this exercise fun and exciting. Laughs and laughs at Dennis. Here I have been treating her like a porcelain china doll and Dennis is taking her dancing. Go figure!!!

After therapy we all went outside to await the arrival of Dar’s sister Diane. Ten hours on the road from Salem Oregon, what a drive. Thank you Diane.

About 6:30 Diane arrived and we all spent some time with Dar before retiring for the evening. I returned home to continue preparations on the house and pay bills. I found a home for our sofa and rearranged the furniture in the front room so that Dar’s needed equipment will all fit. It looks very large now and I believe it will be a great fit in Dar’s recovery when she comes home.

I have been talking a lot about Dar’s “tone”. Maybe a little definition of what “tone” is would be handy for you. In it’s simplest definition, “tone” is the counter active movement when a request is made by the brain to perform a specific task, i.e., move fingers, move arms, kick feet and so on. Dar can make any and all requests to move a certain part and you can watch this command and see that she is trying to perform the task, unfortunately the “tone” is so severe that she cannot power thru it. She can perform some tasks to a small degree, she can kick her feet and legs when sitting in her chair, she can move her fingers on her left hand slightly, she can even move her left arm ever so slowly when you ask her to. Again the “tone” is the issue. I believe that if we eliminate or reduce Dar’s tone we could see Dar reach new rings on her ladder to recovery.

This brings us to where we are today and where we hope to begin to go beginning next week

There is a treatment called the “intrathecal baclofen pump”. This pump is used to help eliminate and or reduce “tone” when conventional oral medication is not performing, as we would hope.

Prior to my final decision to proceed with the “pump”, Dar will participate in a test trial. If at the end of the test we find that Dar’s “tone” is decreased or eliminated than I will meet with all the important heads of therapy and Dr D to discuss the next step.

The "trial"is meant to show only one thing; is “tone” reduced. Prior to the test Dar will be evaluated and rated on a number scale regarding her tone. Next, she will receive a small amount of Baclofen injected into T1/T2 of the spinal column, directly into the fluid. Much the same as an epidural. Over the next 3-6 hours Dar’s “tone will be re-evaluated. If she shows a decrease or elimination, the test is a success and she would be a candidate for the pump.

Should I decide to have the pump placed, Dar would undergo a surgical procedure about 1-1.5 hours to have the pump placed under the abdominal muscle. A cath line would run from the pump to the T1/T2 and permanently placed. The small pump controlled by a computer would then dispense the medication. A small reservoir would hold the medication and be refilled on a periodic basis. The battery of the pump would last about 5-7 years. The pump would be replace only when needed. The size of the pump is about the same as a hockey puk.

As with all “out of the box” treatments there are some risks, but at this point if this can assist Dar and her recovery, and she can continue to recover I feel I have to consider this option and do my homework and be able to make the best decision I can. At this moment my position is that Dar has come too far to hold her back now if something is available that will help. At a minimum we will go on with the “test trial”. Please continue to say your prayers for Dar and I.

It truly has been a weekend of emotion as you can see. Now the anticipation of the test trial, possible placement of the pump, and lastly the home going of Ryne Spitzer.

Ryne will be headed home later in the week, and although we are excited for him, I am sad too. We have made such dear friends in the folks like the Spitzers, the Murphy’s, and the Stewart’s. We were brought together by tragedy, we have laughed together, cried together, screamed together and through it all we have grown closer and closer. We have shared joy, frustration, heartache, and most of all our love for one another.

I will so miss them when they return home, but will look forward to Dar’s and my journey to see Dr Mark in the future and park our “house on wheels” in their driveway. Watch out Spitzer’s the “rednecks” are a comin.

At this point maybe I should close before I get all-emotional, besides it is not good-bye, its “see you soon”. We will forever be in your debt Ms Tami, Mark I look forward to reading your posts, and building Ry’s pool lift. God bless you all, we love ya.
Tami, I hope to see you early this week while Dar is having her test trial.

Thank you everyone, we love ya all.

Dar/Danny/Maverick, the awesome dawg

"blessed yet again"

Last night at 5:00 pm I was yet again blessed. You all remember how I have said that Dar was having difficulty "voicing". Wether this has been a physical issue or something else we may never know.

Last night with Ms. Tami at the helm and controling the cell phone, Dar was amazing. Happy to hear my voice and comfortable in bed, we spent probably 15 minutes or better "voicing" and "speaking" words and phrases we have not heard in a very long time.

Dar answered questions appropriatley, filled in the blank to questions like, "the elevator goes up and _______", the opposite of stop is _____", "some people go to ______ on Sunday", "at bedtime we wash our face and hands and brush our ______".

Dar was "spot on" with all my questions, made her vowel sounds, said "I love you" and was just amazing. Tami and I were so excited to hear Dar speak again after such a long lay off.

I told Dar I would call again about 7:00 to say good night and if she was up to it, work on our voicing some more. We spoke briefly at 7:00 and Dar although tired again "voiced" as much as she could. She is trying so hard to win her battles and reach for her stars and I am so very proud of her.

I will be making a call to her therapist, Ms Amy very early this morning to bring her up to speed about last night and you never know, we might have to have "speech class" by way of long distant cell phone. Praise God Tami was there to witness the glorious happenings. Thank you Tami, we are so blessed to have you in our lives.

Talk later,have a great day everyone, we love you.

Danny

"A beautiful weekend in Fairfax"

With the change in dosage to one of Dar's meds I saw quite a difference in her attitude over the weekend.

Dar's Zoloft was increased slightly on Thursday. By Saturday when I arrived Dar was in much better spirits. Although still having dfficulty with vocalizing words her attitude and demeanor were much improved.

As I have mentioned in the past the fact that Dar's neck muscles are so tight she finds it difficult to speak. Dar'sneck muscles are like that of a snapping turtle. When he rneck is withdrawn inward it is very difficult to speak. Try it, suck your neck into your shoulders and you will see and hear the difficulty Dar is having.
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After stretching and relaxing the neck muscles Dar has an easier time of vocalization. Again this is why we are looking into the Botox injections for the neck. I hope we get it approved.

We spent lots of time on the deck and Dar was very happy to be with Mav and other friends of the facility.

It was a great weekend and a joy to see Dar happy and content. Pain issues are at a minimum when not in therapy but even then Dar is such a tropper that her pain is only short lived.

I have come up with a plan that will enable us to keep our travel trailer and with some modifications I believe it will work very well in meeting Dar's needs. The front of our trailer is the master bedroom with a raised queen size bed. Under the bed is outside wall to wall storage. My plan is to remove the bed and pedestal to the floor and this will leave a space approximatley 51x100. This will allow me to either put Dar's hospital bed across the room from wall to wall or length wize in the room. A hospital bed is about 36x80. I will start looking on Craigs list for a bed soon.

Fortunatley for us our trailer has two entrances, one in the back to the kitchen and one in the front to the bedroom. The doors are a little over 24 inches wide and if I take the outer hand ring off Dar's wheelchair, we will be able to roll her right into the bedroom. In the event that it is too close I have spoken to our dealer and it appears it would be not too much trouble to put a larger door to the bedroom. Maybe make it 3o/32 inches wide. I will probably use some sort of portable ramps to take Dar in and out. Something similar to what we use to load the Polaris Ranger on the truck.

I think it wiser to keep what we have rather than try to sell and re-purchase during these hard economic times. Besides Dar loves her trailer. If you have any suggestions or thoughts feel free to comment.

Well the work week has started and I will keep you up to date as we learn more during the week. Dar's mom,dad and little sister from Oregon are coming this weekend so I am thinking about taking a day or two this week before school starts and have a little "fish time" possibly on the Sac River. See if I can coax a couple of buddies to drift the Lower Sac and do some fly fishing. I do miss time on the water. We'll see.

Love to all, please stay in touch,

Dar/Danny/Mav

"Looking forward to tomorrow"

Have spoken each day with Dar. Tammy has been so faithful to make herself available so that Dar and I can talk.

The last few days have focused alot on relaxing Dar's neck muscles. For whatever reason this seems to help and assists her when she tries to vocalize. It also seems that Dar finds the ability to vocalize more in a "prone" on her back position. A little odd but who knows.

Spoke with both Amy, speech and Christy, OT yesterday and everyone including Dr. Margolin and Dr. D are putting their heads together to see if there are any avenues of assitance that might aid Dar in her ability to speak with ease, help her mental emotions, (I think we are dealing with some depression), "ya think", and help in minimizing the "tone/spasm" in her upper torso.

Some ideas have been mentioned and the staff and doctors are looking into them. As I learn more I will keep you in the loop.

All in all Dar is doing well, and I look forward to seeing her tomorrow.

Jamie, our daughter has had more of her"bricks" fall into place so that she will have an easier transition when "step mom" comes home. I am so proud of the lady that Jamie has become and applaud her "faithfullness" and "courage" that she has shown throughout this tragedy. 143 Jamie

Well, I just wanted to drop all a note and tell you how much we care and appreciate all of you. We love you all and ask that as you begin your weekend, please, be carefull in all that you do and all that you do, do it with love.

Love you all,

Dar/Danny/Mav

PS, The electrical phase of Dar's facelift begins next week.

Thanks Sharp Electric Inc, Bill,Cheryl and Steve

"a very busy few days for Dar"

August 3, 2009
1441 Hours

I don’t think I will ever tire of hearing Dar say, “I love you”. Without fail Dar will always mouth the words but for reasons that are becoming clearer to us, her ability to actually vocalize words is sometimes infrequent.

Saturday as Christine and her family were getting to retire to their motel for the night, Darlene very clearly said, “I love you” to all of us.

Not having said anything all day, hearing those words brought the flood gates open for me. Next I knew Dar was teary eyed too. She is working so hard to make it back to all of us.

I haven specifically not written over the last few days so that I might bring you up to speed with all the recent facts and findings.

Friday, Dar and I went back to see Dr. Currey at UCSF. I learned more this time and believe I have a better understanding of what the issues are regarding her vocal cords.

I now understand that Dar’s vocal cords are not paralyzed. They are in what is called “spasm”. This is a condition controlled strictly and solely by the brain, thus making this a neurological issue. When the cords are in spasm it means that they are not relaxed and opening and closing when requested by the brain. In Dar’s situation this can cause some problems when she tries to swallow and she runs the risk of aspiration. Because of the irregular swallowing and the spasms now is not the time to begin a full court press to begin introducing regular food. It was the opinion of Dr.Currey that small amounts of Dar’s favorite foods might be something we could try under strict and controlled situations.

Dar was a total trooper during the exam and did her best to follow all request and instructions from Dr Currey. Our ambulance ride to and from SF was a treat for Dar and she was in her typical jovial attitude.

Dr Currey agreed that the Modified Barium Swallow test on Monday would give more insight into exactly what is going on when Dar swallows regular food.

We returned to CareMeridian where Dar spent the remainder of the afternoon resting and relaxing.

Saturday Dar was again in great spirits and although she never said much all day she was happy to be able to hold Maverick’s leash and be outside with myself and other residents of the facility. Dar’s nephews played the keyboard for her as a belated birthday present and she was very happy to hear the music. The boys have really gotten big since we last saw them.

I returned home late Saturday afternoon and paid bills and cleaned up around the house somewhat and just kicked back in the recliner several times only to find myself taking “cat naps” throughout the day. I spoke with Dar later in the day after Christine and her family went back to their motel for the day. Dar was in good spirits although not vocalizing word very much while we were on the phone.

Yesterday was a real treat for Dar.

Christine and the family arrived early and with prior permission from the staff were allowed to see Dar earlier than normal. Usually visitation starts about 10:00 am but since Christine’s family needed to return to Bakersfield by 5:00 they were able to see Dar early. I arrived about 7:45 and they were already with Dar saying their goodbyes. Dar handled everything well and was mouthing all the appropriate answers to all questions.

Christine, Gary and the boys left about 8:30 and headed for home.

At 11:30 we started getting Dar ready for her “special” field trip to Marin General Hospital. This trip was for the MBST, to see exactly what happens when Dar swallows.

It was planned that Dar would ride with Julie, Activities Director for CareMeridian on the Whistle Stop non-emergency public transportation for the disabled. Whistle Stop arrived about noon and our excursion began. It was also planned that I would follow in the Silverado and all three of us plus Maverick would return to CareMeridian together. The ride home would be the actual first time I would be doing a transfer from Dar’s chair to the front seat of the pick up.

Dar had a blast on the trip to Marin General; it reminded her of again being on her quad bouncing and being jostled to and fro. Julie told me that although Dar was quiet for the most part she had a smile on her face the whole time.

I arrived behind Dar only to be greeted by “valet” parking at the hospital. I could not believe it. As it turned out valet did not have to park the truck, as there was a space directly in front of the main entrance. It was as if all was planned ahead. “ya think”.

We made our way to radiology where we met Beth and the staff that would be doing the test. I transferred Dar to a special chair that would allow the x-ray machine to view all that goes on when we swallow.

Dar’s attitude was subdued and quiet but being the trooper she is she did not complain or object when I moved her to the special chair. Dar answered all questions by mouthing all the appropriate words and said she was ready for the test.

In preparation for the test all of us that would be in the room and not behind the glass window had to wear lead aprons. Reminded me of putting on my uniform and vest on the sheriff’s dept.Memories,,,, wowser.

Stay tuned I will continue this story later this afternoon

Ok , I’m back.

As I was saying, Dar was a real trooper, sitting in the special chair waiting to get started with the test.

The test was actually very simple. All Dar had to do was eat some vanilla pudding with a Barium paste added to it that made the pudding look like school paste. I think it tasted about as bad too!!!. Dar did not much care for it, but she did as she was asked and we were able to watch its travel as she swallowed.

It is amazing to me how complex and precise the human body is. As a result of this tragedy I cannot believe how much I have learned about the human body.

The best and simplest way to describe the Swallow Factor is to describe it this way.

Picture if you will driving down a single dirt road in your vehicle. You approach a fork in the road, one to the left and one to the right. The road to the right leads to your stomach and the road to the left leads to your lungs. At this intersection of roads there are safeguards in place to protect each of the roadways. The brain, or the neurological center of our being controls all of these safeguards. When Dar swallows each of these safeguards has a special job to do. One closes, one moves over and one drops a solid gate over the road to the lungs.

In Dar’s case, some of these steps or protections are just a little bit late. They are working but not as quickly and efficiently as they should and not 100 per cent of the time. As a result probably 90-95 percent of what Dar is swallowing is going to the stomach there is that little bit that is sneaking by and getting into her lungs and could cause aspiration, choking, vomiting or worse. Gone undetected or not seen all of these could lead to fevers and pneumonia. It amazes me how much of our finite capabilities are solely and strictly controlled by the brain Although I was disappointed that Dar still has a ways to go in this area I am so thankful that now we know beyond a shadow of a doubt that there is still an issue of Dar being able to protect the airway I am so very thankful we did not go ahead with a full court press to get her on solid food. Thank you Amy for your attention to looking at everything before moving forward.

Now you may ask, what about the cuff less trach Dar has. Can she manage her secretions on her own, does she, the answer is yes. Dar has been with the cuff less trach for over a month and has been managing her own secretions very well. Dar requires little to no suctioning on a daily basis. She does not have copious amounts of fluids to deal with. This is a very good thing and I am comfortable with where we are.

It is obvious things are getting better but we still have a long way to go on this “Journey Back to Life” but I would always want Dar safe and not be put in harms way, especially over chocolate ice cream. We will get there it just won’t be today or tomorrow.

Well I am sure there is more that I have left out but as I remember it will give me reason to post again hopefully before the weekend.

I spoke to Dar a little bit ago and she was with Amy and Julie in the PT room. Very tired and pretty laid back Dar answered my questions by mouthing but still not a lot of vocalizing.

We have a call into Dr. Doherty to see if maybe Dar is possibly going through some depression as a result of her becoming more and more aware of her situation. A CT scan has been pretty much ruled out at this point, as Dr. Margolin believes that we are not seeing “new” symptoms that might indicate something like a small stroke or something of that nature. I hope I have been able to convey to you how acutely aware Dar is. She is on top of everything. It is our hope that Dr. D might be able to shed some light on our little predicament and maybe make some adjustments in Dar’s meds.

As I learn more I will be faithful to let everyone know.

Have a great week everyone and I look forward to seeing you all soon. I truly miss all of you and Dar and I miss you very much.

Michael, thank you for your offer to help in any way that I might need. It means more to me than you know to know that I can call 24/7, 365. Bless you. You are a true friend

Ok, I’m done, for awhile, Love ya all, please keep your prayers coming.

Oh, almost forgot, at such time as Dar gets home and we get things settled and will be having to make the occasional trip back to see Dr. D in the bay area, and Dr Mark Spitzer, ENT. We will have to travel with Dar’s mobile house. Dr. Spitzer, Ryne’s dad has told me that he would be more than happy to see Dar and can give her the care she will require and we won’t have to go to San Francisco. The Spitzer family and Mark’s practice is in Merced. I would much rather go to Merced than San Francisco, besides then we can spend time with Ryne and his very special family. The issue is that we cannot make either one of these trips in one day. We will have to spend the night and make it a two-day trip in order to meet Dar’s specific medical schedule and her ability to sit in the truck for extended periods of time. Mark has even told me that he can recommend doctors in the Sacramento area if we find the travel to be too much for Dar.

The specific need is that we be able to find a 30-34 foot toybox hauler that we can equip with all of Dar’s specific needs and equipment. As I have said, we have a 2007, 27 foot Wave pull trailer, immaculate, that would have to be sold and paid off or traded in. Yes, a tall order, but I know from experience God can handle it.

Ok, now I’m done. Love ya

Dar/Danny/Mav