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Thread: Finally! Some good news about my daughter.

  1. #526
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by Muriel View Post
    Roy, know that many others are thinking of you and your wife and your daughter - often. You have one hard row to hoe. And it would be very tiring to have to be on 100% alert at all times. Does your daughter have a dog that senses oncoming seizures? My neighbor's daughter has one, and it seems to heop alot. My neighbor is raising her daugher (now about 18) by herself; she is one brave woman. Bless you all,
    Muriel
    I could not log in last night, Thank you Muriel.
    The seizures stopped once we moved her meds back, so it appears we can't wean her off them yet. I am hoping we can do something else with her retainer, there is no way I will allow them anything loose in her mouth overnight. It may mean more work for us but anything worth doing is worth doing right, IMO.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  2. #527
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by bobs98 View Post
    More thoughts and prayers coming your way, Roy!
    Thank you Bob.

    Didn't you have a trip planned out his way and was that you I was talking with about meeting in Northern Wisconsin?
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  3. #528
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by womanridge View Post
    hugs to the Rapid's family. Best regards, Roy/ Enjoy Hiawatha.
    You won't be there?
    Dang.
    I'll do my best Karen, Thank you.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  4. #529
    Registered User womanridge's Avatar
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    Saturday might be a good day for a ride to Minn.............Got a club to run on Friday, ya know.
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  5. #530
    Registered User Rapid_Roy's Avatar
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    Hmmm. I swear I started another thread about this, as I couldn't find this one, yet here it is.

    Lessee, Rachael is 15, and being weaned off her original seizure meds from several years ago. They ramped up the dose to 1250 mg after they started up again. She is now down to 250 mg, and fully on the new meds, which do not damage liver (or kidneys, I forget which). She never made much progress on the tricycle, but we had tried a new device at the Hospital in their rehab dept, before buying one. It's like a stationary bike with one wheel, made to haev a wheelchair roll right up. There is a computer and a motor that asisists if they can't, to keep up the rotary motion. They attach e-stim elctrodes and fire her muscles to work the pedals. Some very complicated and cool stuff. They were so impressed with her display in it that they submitted the paperwork to Insurance, who promptly denied it as "experimental." I have 180 days to appeal, and I am going to try and send them this video, so they understand it's something she hasn't done for 10 years, and can only improve her general health.



    Truth be told, if they still deny it, we were going to buy it anyway. We feel fairly strongly about this one.
    We have been swimming with her all summer, and she is strong but still not really walking and helping as much as she used to before the Scoliosis surgery. This device will help us in the winter, and she can watch TV while building up cardio (more than she does now) and evenly building up leg muscles. She just had to go today for more botox in her left leg, the inside muscles are too strong and pull her whole leg inward, which makes it really hard to walk. She cried. I would like to stop that too.

    So there it is, I am still riding and I get to ride to work now. It's only 10 miles but
    I will see some of you at the Dells Rally, and miss the rest of you.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  6. #531
    Raspberry waffles Bob!!! kewlmoose's Avatar
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    Glad to hear some good news Roy, see you at the Dells! I suspect you'll get that bike for Rachael too somehow or another.

    Sent magically!
    82 R65LS - gone but not forgotten
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    "Oh good, my dog found the chainsaw"
    "I finally got my head together, now my body is falling apart."

  7. #532
    Amma Holly's Avatar
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    The good people at ADVrider have set up a page where we can all donate for Rachael's bike. Link to donation site

  8. #533
    Raspberry waffles Bob!!! kewlmoose's Avatar
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    Thanks Holly, I couldn't find the link before.

    Sent magically!
    82 R65LS - gone but not forgotten
    02 R1150RT
    "Oh good, my dog found the chainsaw"
    "I finally got my head together, now my body is falling apart."

  9. #534
    Registered User Rapid_Roy's Avatar
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    I did not see that Thank you again Holly.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  10. #535
    Registered User Rapid_Roy's Avatar
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    Well Thank you all, it appears we reached the goal. Words can't express how we feel about this.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  11. #536
    sMiling Voni's Avatar
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    Wonderful news!!

    Can't wait to see her happy face!

    Voni
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  12. #537
    Cage Rattler wezul's Avatar
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    Quote Originally Posted by Rapid_Roy View Post
    Well Thank you all, it appears we reached the goal. Words can't express how we feel about this.
    No kidding.
    And the goal was like, wow. BIG
    It's a George Bailey moment.
    Cool

  13. #538
    Raspberry waffles Bob!!! kewlmoose's Avatar
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    Quote Originally Posted by Rapid_Roy View Post
    Well Thank you all, it appears we reached the goal. Words can't express how we feel about this.
    It's all that good Karma you got there Roy. Here's to Rachael getting lots a miles on that new bike! up:
    82 R65LS - gone but not forgotten
    02 R1150RT
    "Oh good, my dog found the chainsaw"
    "I finally got my head together, now my body is falling apart."

  14. #539
    Registered User Rapid_Roy's Avatar
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    So, the RST 300 Therapy bike is at our house, and will be assembled and we will be trained by Lisa next Wednesday.
    I am trying not to get too worked up about this, but I really hope Rachael responds to this. I am not sure if we can get her walking again if this does not do what we hope it will do.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  15. #540
    Still Wondering mika's Avatar
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