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Thread: C5 ASIA B-Incomplete

  1. #11
    twnzmom...

    I also am in Arkansas... My son has a SCI and we did our rehab at BHRI in Little Rock. He is now currently living in Baltimore doing therapy at Kennedy Krieger Institute. I would love to talk to your sister-in-law. I will private mssg you my contact info.

    The Arkansas Spinal Cord Commission just had a wonderful conference last Friday. I hope she was able to attend.

  2. #12
    Arkansas Children's Hospital. Please read my post above, too, if you haven't already...about Dr's advice question. Thanks!

  3. #13
    Many places have a Ronald McDonald House nearby that family can stay at.

    Have you looked into Shriners?

    My son was 14 when he was injured 2 years ago and I am still kicking myself that I didn't overrule his doctor and get him transfered.

    Please keep in mind that most doctors know VERY LITTLE about spinal cord injuries. You will get the best advice on the planet on this website. Lucky you found it so quickly.

    Also keep in mind that the parents will have to be pushy and even obnoxiously so. Their job is to advocate for their daughter and unfortunately that often means putting up a good fight.

    Anywhere your niece goes she will make new friends. Her future is at stake and it is so important to get the best care possible immediately after injury and then set up the best program possible for the next 2 years.

    Good luck.
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

  4. #14
    The doctors obviously think quite highly of themselves.

    Don't believe them.

    There are much better places.

    Don't hesitate to move her!

    They just want the insurance money -- keep in mind we're talking 6 figures here and they don't want to loose out.

    What about Shriners in Philly or Shepherd in Atlanta?
    Ugh, I've been kissed by a dog!
    Get some hot water, get some iodine ...
    -- Lucy VanPelt

  5. #15
    Senior Member
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    Agreed. The doctors are on an ego trip of some sorts, and not based in reality. Your neice should be in a specialized SCI unit, and Shriner's takes people without insurance. Do not let them convince you that they are the best out there. There is a reason certain sites are designated as specialized SCI units, and it is because they know more, can anticipate more, and give the patient the optimal chance at a better life.

  6. #16
    Hi Twnzmom,
    I just sent you a message. Check on the top right hand corner of the homepage and click on private message.
    Thanks.
    Teri
    Luke 5:24

  7. #17
    Thanks so much for all of your responses! We have convinced my sil to go to tour the closest center that specializes in SCI, Baylor, on Friday. Hoping it goes well and I know from what others have told us that the difference in the 2 facilities is going to be drastic. Hoping she will be motivated to make a change after seeing what is out there!

  8. #18
    Oh, please keep trying to encourage her. That was exactly the attitude we received from the doctors at TIRR. Such old school mentality, not willing to try new things, etc.. If we knew then, what we know now! We've been driving our son from Houston to Austin three days/week, it's a sacrifice, but well worth it. I couldn't live with myself thinking, "What if?".
    FAITH: Is not believing God can, but knowing he will.

  9. #19
    Went and toured Baylor yesterday and it was a dramatic difference from ACH. They have aquatics center, mandatory 3 hours of therapy a day vs. 1.5 she is getting now, a lot more pt/ot equipment, treadmills with the harnesses (pardon my lack of technical terms here), a car in the gym to teach her adaptive driving, etc. We are really excited about getting her moved and my SIL is on board with doing so. They say they can have her moved in 24-48 hours as soon as she gives the go ahead. I am hoping that happens beginning of the week.

  10. #20
    twnzmom,
    Great news! Keep plugging there!

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