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Thread: Kidsstep Program - Online diary

  1. #41

    Standing and Stomping

    This is the last one I promise unless Sean decides to something new on our last testing session.

  2. #42
    Yeah Sean!!!

    You go boy and show them, Bond, James Bond
    Every day I wake up is a good one

  3. #43
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa
    And STOMP!

    That was lovely, thanks so much.

    In case anybody watching these videos thinks the people are warmer or more focused with a child like Sean than they would be with an adult, it's not so.

    One of the most interesting things about Andrea Behrman's lab work is how intimate the researchers become with the subjects. I remember watching them literally trying to make themselves synch up with Bruce's body so that their hands became like surrogate muscles in his legs and hips.

    They would move with him, breathe with him, sometimes even whisper little instructions to his body as they tried to retrain the central pattern generator. It's quite remarkable to witness, especially when you think that these people are writing scientific papers about their work with these subjects--they're collecting data, yeah, but they're also just putting their whole hearts into every effort they ask the patient to make.

    Plus, hey, their methods do work.

  4. #44

    Talking Sean tries dancing

    We go to N. Ireland every Sat for 1.5 session - this is where the videos were taken. He also has phyiscal trainer come to the house for 1.5 hour every week. Sean has improved in his truck control and we are waiting to get a pair of RGO's for him - fitting in March. We had alot of problems with UTI's before and during our trip to Florida, but thankfully we haven't had one since April 08. We manage to fit in scouts, Drama, guitar, chess and basketball lessons around his PT. Also he goes to the local junior wheelchair sports club. I want to get him a hand cycle to put onto his wheechair as he does get fed up when the kids on the road are all playing on their bikes etc.

    If Sean shows some good improvement in his RGO we might consider trying one of the training centres like Project Walk in the UK.

    Anyway watch this space.

  5. #45
    Senior Member
    Join Date
    Mar 2006
    Quote Originally Posted by soimumireland View Post
    I am learning a new language here

    Soda = Mineral
    Trash = bin
    chips = crisps
    fries = chips
    gas = petrol

    Sean has the lingo down pat - he is in for a tough slagging when he goes back to school in Ireland
    I smiled at that. My daughter is studying at University College Cork for a semester. I am already seeing bits creep in!

    Don;t apologize about all the videos! He is doing great, and it is wonderful to see.
    T7-8 since Feb 2005

  6. #46
    wow that dancing contraption is pretty cool. I realized he was actually moving his legs but at first I though they were moving when he pulled a cord - like a marionette.
    does that have a name?

  7. #47
    Great to see Sean doing so well. He looks much taller since the last movies. Where do you go in the North - are there better facilities there? I remember after I got out of rehab in Dun Laoghaire and was living in Wexford I couldn't find anyone at all who had a clue what to do with me, and the rep from the Wheelchair Association who came to see me, and who had been injured for about 18 years, said that he never had any physio and didn't know of anyone who did! That was a depressing revelation. Hopefully things are changing a bit.

  8. #48

    Hand Bike

    We got this new hand bike. It has made a big difference for Sean. He actually wants to go out to play and he is actually getting a little colour in his cheeks instead of the deadly pale look he usually has. His sister insisted on walking him home from school with his bike last week, something I wouldn't have dreamt of 2 weeks ago.

    We are collecting his RGO in June. The state phyiso is going to be working with Sean using the RGOs and our private phyiso (see video's of Sean dancing) wants to practice walking with walker using AFO and gatters for bracing.

    All for now

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