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Thread: Recent Accident to My Son

  1. #131
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    Brian has been using the EasyStand 6000 everyday. We have also been doing at home the electrical stimulation program setup by Dr. Sadowski at the Kennedy Krieger Institute. When Brian completed the program at KKI they gave him a PowerPoint with pictures and instructions on how to apply the electrical stimulation. The pictures are of Brian showing where to place the e-stem pads and all of the setting for the EMPI machine. At night Brian wears a hand split and contracture boots. Twice a week he goes for hand therapy and three times a week he goes to St. Joseph's for out-patient physical therapy.
    I've been following with great interest the postings on the Carecure.org CURE FORUM concerning Dr. Davies research. I've made a couple of donations to Dr. Davies lab and I hope others will also donate. I'm no expert on spinal cord research but I've listened to Dr. Davies lecture on UTUBE and I believe his research has great promise. Schmeky, a Carecure member recently visited Dr. Davies' lab and posted a couple of reports on what he saw. I encourage everyone to read the thread in the CURE FORUM Stephen Davies Update. After you read the thread please donate to Dr. Davies' lab. For instructions on how to donate see page 14 posting 139 on the Stephen Davies Update thread. I would love to see Dr. Davies and Dr. Young collaborating. I have also donated money to Dr. Young's lab.

    Roger

  2. #132
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    Last night at about midnight we got back from our visit to Irvine California. On Wednesday, Brian and I visited the UC Irvine campus. Prior to his accident Brian had applied to the UC Irvine Medical School. We talked to people in the disability office and the medical school admissions office. It started out as a grueling experience but we hung in there and everything worked out better than we ever could have expected.

    We arrived at the campus at 1:00 pm for a 2:30 pm meeting at the disability office. We had several campus maps and had located parking near the building where the disability office was shown on the map. To make a long story short the disability office had been moved and no one knew where it was moved to. We finally arrived at the office at 2:15 pm after walking and pushing to the opposite side of campus. After our meeting we decided to go to the Registrar's Office for the School of Medicine which was back near where we had parked originally. Well that office was also moved, we never found out where it had been moved to. We ended up in office of the Director of Admissions for the UC Irvine Medical School. We had not intended on going to this office and apologized for barging in on her without an appointment. She interrupted her work and spent more that 30 minutes talking to Brian about the medical school application process. No one could have been more helpful.

    Wednesday night we had dinner with four other Carecure members. On Thursday the Carecure members Jennifer, Brian, Karen and Susan together with Karen's daughter Mandy, my wife and I all visited Dr. Keirstead's lab. Jennifer and Brian are preparing a report that will be posted on Carecure. Karen and Susan had traveled from Sacramento to visit Dr. Keirstead's lab. We toured the lab and met with Dr. Keirstead for almost 2 hours anyone who meets him I'm sure will conclude that he's a wonderful man. I had suspected as much when he graciously declined the $200,000 donation from Ricky James earlier this year.

    Roger

  3. #133
    Thanks for the update! Good luck to your son, and sorry I couldn't be there for the CC get together!!

    (KLD)

  4. #134
    I have been following your sons story. I am so glad he is continiuing with his education!
    You and your son seem like amazing people! You need to pat yourself on the shoulder, you have done a wonderful job raising your son!
    Diana

  5. #135
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    Diana

    Thanks for the compliment but it has mainly been Brian. I could go on and on with example but it would be a father bragging about his son's accomplishments.

    Roger
    Last edited by Roger; 12-16-2007 at 09:45 PM.

  6. #136
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    Brian completed the Keirstead Lab Report on Friday night. Jennifer posted the report on: Carecure/Cure Forum /A visit to Dr. Keirstead's Lab/.

    The report is attached to message #100 on sheet 10.

    As I said in a previous message Dr. Keirstead impressed me very much. He's very down to earth and compassionate. I wish that the cure for chronic spinal cord injury was closer, Dr. Keirstead has a plan but it is going to require a lot of work and money. My goal is to get better at raising money to support Dr. Keirstead and Dr. Davies. Asking people to contribute money is not something that comes easily to me.

    Roger

  7. #137
    My goal is to get better at raising money to support Dr. Keirstead and Dr. Davies. Asking people to contribute money is not something that comes easily to me.
    Roger~ It never came easily to me either but at year 15 I said, "What the hell do I have to loose?" In the last two years I have raised over $30,000 personally and recruited others who have exceeded $100,000.

    I have found that if I speak from the heart, share why it is important to me and show a direct impact, I am successful.

    Good luck.

    Brian, Marcia says hello.
    Every day I wake up is a good one

  8. #138
    Roger, I just got on CC again for the first time in a long time. I am so glad that Brian is doing so much. Good luck with getting the equipment that you need. My brother bought my husband his standing frame and it's the one that glides. My brothers in-laws live in Phoenix and they are there visiting right now. I can't to read Brian's report. Take care!
    Tonya

    Husband, Ron, is a T-7 complete as of Oct. 06

  9. #139
    Senior Member Dave E's Avatar
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    I was treated at Craig. I have since then talked to people all over the country and have come to believe what I thought was the case. CRAIG ROCKS! As the SCI nurse stated, There is so much more to rehab than just PT. Craig will give him the whole package, and he will always have access to them for follow-up or just about any question or situation that comes up.
    Dave E. C6-7 Incomp. Quad 9-06

    "NEVER LOSE SIGHT OF YOUR DREAMS!"
    "THERE IS NOTHING BETTER FOR THE INSIDE OF A MAN / WOMAN THAN THE OUTSIDE OF A HORSE"

  10. #140
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    Today, I called Restorative Therapies and ordered the RT-300 bike. I have no excuse for why I've been waiting to order the RT-300. Brian has been going to St. Joseph's three times a week and using a RT-300 bike at St. Josephs rehab. Blue Shield of California sent a denial letter to us in the middle of October. Restorative Therapies has submitted an appeal to Blue Shield but we won't have a determination on that until February. I have the letter of medical necessity written by Dr. Sadowsky at Kennedy Krieger. This letter was submitted by Restorative Therapies when they were requesting pre-approval for this piece of durable medical equipment. In the letter there's a paragraph titled:

    NOT EXPERIMENTAL OR INVESTIGATIONAL
    The RT-300-S system has been cleared by the FDA for marketing. The listing number is E239018 and the 510(k) number is K050036. Thus from a regulatory point of view this device and treatment is neither experimental nor investigational.

    The letter of medical necessity details all of the benefits and the reasons why it's necessary. It's a well written detailed letter with two pages of technical references. I doubt that the doctor who signed the Blue Shield denial letter even looked at the letter of medical necessity. He said that the request was denied because:

    The clinical rationale is that there is no scientific evidence that this cycle has long term benefits. It is considered investigational and not in accord with Blue Shield of California Medical Policy.

    Obviously, the Blue Shield denial form letter is intended to discourage you from pursuing the claim. They don't respond directly to the letter of medical necessity they just act like they've never read it. Anyway we're getting the bike and I will pursue the appeal. I'm going to attempt to get another letter from the St. Joseph's rehab PT or director.

    Last June our case worker from The Shepherd Center wrote a GREAT letter to Blue Shield that resulted in the transportation expense from Phoenix to Atlanta being appoved. I wish I had a copy of that letter to show to the St. Joseph's rehab PT.

    Roger

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