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Thread: My little girl, an update.

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  1. #1
    Registered User Rapid_Roy's Avatar
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    My little girl, an update.

    As many of you know, my little girl contracted West Nile 10+ years ago. We have been to Florida to see a Dr they consulted with on the Terry Schiavo case, we saw a specialist in Toronto, and we have even been to China for Stem Cell Treatments. Now she is 15 years old, and she is still not walking, and we recently found something that, when she used it the first time almost made me cry. It's a stationary bike that you push the wheelchair right up to, strap her legs in and she pedals. There is a motor that "helps" and it graphs who is doing what, so you can actually see her muscles start kicking in on the graph. The local hospital has on here, so before trying to get one, we asked if we could use it. They scheduled 3 sessions, and in the first one she pedaled 1.5 miles! I haven't seen that for over 10 years. The next week though, she cried and did not do well at all.
    On the final try, she pedaled 2.25 miles, and they are submitting the paperwork to insurance. If insurance doesn't buy it, we feel it will be helpful enough that we are getting it whether Insurance buys it or not. I didn't really want a new GS Adventure anyway. 3
    Check out the video, she is getting big.


    It looks like my thread about nothing is gone as well, darn. 3
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  2. #2
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    keep posting - it's nice to see progress, bless all of your efforts.

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    Registered User tourunigo's Avatar
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    The other day I was wondering how she was doing. Thank you for the video clip. A thread about Something Special I suppose. Looking forward to following her (and your family's) progress with this new technology. - Bob
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    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by Weasel View Post
    keep posting - it's nice to see progress, bless all of your efforts.
    Edit: to remove my reading blunder: Thank you very much.
    I stumbled a bit, mostly because some jerks at ADV insisted I was posting stuff about her for sympathy for myself, even after I stated that was never my intention.
    I finally realized that not everybody is a jerk, and jerks should not matter, so I will go right back to posting my updates.
    Last edited by Rapid_Roy; 05-08-2013 at 03:19 AM.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

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    Registered User Rapid_Roy's Avatar
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    She seems to be plateauing, so her therapist for her walking said perhaps we should take a break. We both sort of feel that this is it, and if it doesn't build up her leg strength, she may never really walk again. If you look at the video, you can see she has electrodes attached to her legs. If she doesn't pedal, the muscles are stimulated by the e-stim to activate. They are not painful, as you can see she seems content in the video. The cool part was seeing the graph and her muscles picking up more of the load right at the end. Her arms are seeming to become a bit more lazy, so we have to work on them more. It's going to be an interesting summer, and unfortunately, I won't be making the National Rally either this year. We have work to do.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  6. #6
    sMiling Voni's Avatar
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    Great update! Amazing new science.

    I for one really appreciate your sharing.

    Voni
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  7. #7
    Just me rad's Avatar
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    wow! She did great, you must be thrilled. Keep it up, dad.

  8. #8
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by Voni View Post
    Great update! Amazing new science.

    I for one really appreciate your sharing.

    Voni
    Thank you.
    I am sorry, and I didn't want to interrupt you too much from the group you were talking to already in Sedalia, but I had to at least say Hi.

    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

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    Cage Rattler wezul's Avatar
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    Quote Originally Posted by Rapid_Roy View Post
    Thanks Bruce, you are a good friend.

    I stumbled a bit, mostly because some jerks at ADV insisted I was posting stuff about her for sympathy for myself, even after I stated that was never my intention.
    I finally realized that not everybody is a jerk, and jerks should not matter, so I will go right back to posting my updates.
    Boy, are you confused.

    get yer wezuls straight boi
    GOD bless

  10. #10
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by wezul View Post
    Boy, are you confused.

    get yer wezuls straight boi
    GOD bless
    Oops, I missed that. Sorry Bruce, I'll straighten my weaels immediately.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  11. #11
    Survivor akbeemer's Avatar
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    Good to get an update and see progress being made.
    Kevin Huddy
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  12. #12
    Registered User lbarbee's Avatar
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    Roy,
    We have never met, but I enjoyed the update. I have found that blogging about the trials in my life cathartic. You write it and we will read it. No sympathy from me, only cheers, encouragement and compassion my friend.
    I'm not sure about miracles, but human determination and a positive attitude can make amazing things happen.
    Keep up the good work dad!
    Lynn
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  13. #13
    IBA #44567 Ken F's Avatar
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    Roy, I had no idea that West Nile could do that, until I read your post and researched it.

    So, your post did do some good- in so much as sharing important information.

    I too have been wondering of late how she was doing, and I'm glad to see the progress.

    Bless your family Roy, and you for being a good Dad!

    Ken
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  14. #14
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by Ken F View Post
    Roy, I had no idea that West Nile could do that, until I read your post and researched it.

    So, your post did do some good- in so much as sharing important information.

    I too have been wondering of late how she was doing, and I'm glad to see the progress.

    Bless your family Roy, and you for being a good Dad!

    Ken
    Thank you.
    it is not an easy transition to go from "she is severely impaired now" to "we are lucky we still have her" and I may have gotten there sooner than my wife. However, the 5 years later diagnosis of West Nile, and after being in support groups, only to find some folks have children impaired much more and even dying, "we are lucky we still have her" *Says Roy with gritted teeth*

    That is mostly because she had a Grand Mal seizure about a month ago, so we are walking on eggshells around here, even after her meds were upped.
    Even though she has had seizures in the past, they were Petit Mal, and this one was even more upsetting to see. So far so good.

    I also want to say, I can't remember logging in since before the the forum upgrade, I was locked out for a while after, I missed the memo. I used that opportunity to get my bikes running again, but my good friend Dale sent some pm's and here we are.
    Thank you Webmaster Kurt, I will try and pay more attention.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  15. #15
    Registered User Rapid_Roy's Avatar
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    Quote Originally Posted by lbarbee View Post
    Roy,
    We have never met, but I enjoyed the update. I have found that blogging about the trials in my life cathartic. You write it and we will read it. No sympathy from me, only cheers, encouragement and compassion my friend.
    I'm not sure about miracles, but human determination and a positive attitude can make amazing things happen.
    Keep up the good work dad!
    Lynn
    I think we just have met Lynn,
    Thank you so much, I will admit that I get the occasional mouthful of rain using my smile as an umbrella, and it is hard to change from "I am certain we can fix all of this" to "That is just the way it is" without feeling like one is giving up. I just hope we are lucky enough to make the right decisions about those things. Another issue is that she is 15 now, and how easy is it to get any 15 year old to do anything that is good for them?
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

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