"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