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Thread: Kidsstep Program - Online diary

  1. #11

    Video of walking with stander after treadmill session

    http://www.youtube.com/watch?v=2auhP1CJgnc

    Just loaded this video, If anyone knows how to rotate a video clip in MovieMaker please let me know.

    Anyway, making slow progress. We have managed to straighten Sean out slightly in his hip and pelvis. He's gone from -20 to -7 but he needs to be able to extend his pelvis by 10 degrees to complete the full motion of walking, so we have another 17 to go.
    The good news is that he no longer needs someone in front of him on the treadmill to push him back and they now use bungees to help the person on his trunk and keep Sean posture more consistent. I will upload a video as soon as I can.

    In the video you see, the above ground session went on for about 20 minutes and he is racing another child from the program. When the guy lifted him out of the walker he started singing "I believe I can fly". Anyway there is other footage of him walking with KAFO on YouTube to compair so let me know what you think.

    Another thing is we have been practicing getting Sean to kneel upright against a bench with my knee supporting his bum. We would never have been able to do this before, Sean's legs would just slide under the bench. He will stay in this position for about 15 -20 mins while watching TV. Anyway this evening left I some jelly on the bench for Sean and he just lifted himself up on to his knees and proceed to eat the jelly while balancing against the bench for about 5 secs. When he fell down he just got back up again. It is only a small thing but !!!

  2. #12
    WELL DONE SEAN! he makes it look like fun, but I'm sure it's a lot of very hard work and persistance from all involved.

  3. #13
    "When he fell down he just got back up again."
    Oh you gotta love that boy!
    Happy to read he had a workout buddy for a bit.
    At first I wondered why they didn't have a therapy dog there to walk on a treadmill with the kids. Of course on the dog's own treadmill just next to the kids.

    He is GREAT ireland mum. So are you.
    Life isn't about getting thru the storm but learning to dance in the rain.

  4. #14
    This is the treadmill session - on the same day as the "race". Sean is going through an Army stage at the moment - I am told he will grow out of it.
    http://www.youtube.com/watch?v=4DKPchAB-bk

    Anyway - songs we are training to

    Horse With No Name - Americia
    Sloop John B - Beach Boys
    Barbara Ann - Beach Boys
    Whiskey in the Jar - Thin Lizzy - Irish Influence
    James Bond Theme
    I wanna be like you - Jungle Book

    The people in offices near by are complaining about the music but i think it is rather good.

  5. #15
    Quote Originally Posted by soimumireland
    http://www.youtube.com/watch?v=2auhP1CJgnc

    In the video you see, the above ground session went on for about 20 minutes and he is racing another child from the program. When the guy lifted him out of the walker he started singing "I believe I can fly". Anyway there is other footage of him walking with KAFO on YouTube to compair so let me know what you think.

    Another thing is we have been practicing getting Sean to kneel upright against a bench with my knee supporting his bum. We would never have been able to do this before, Sean's legs would just slide under the bench. He will stay in this position for about 15 -20 mins while watching TV. Anyway this evening left I some jelly on the bench for Sean and he just lifted himself up on to his knees and proceed to eat the jelly while balancing against the bench for about 5 secs. When he fell down he just got back up again. It is only a small thing but !!!
    It is all wonderful Irish Mum! I can really see where the glint of the devil comes out in his grin. He didn't have us fooled in his tux a year ago! What a lovely spirited child, the fact that you have keep that intact for Sean speaks wonders.

    Impressive, thank you. I love following this thread.
    Every day I wake up is a good one

  6. #16

    Christmas in Florida

    My husband Rory and daughter flew in on the 15th Dec so we could have Christmas together. We went to Orlando for Christmas on the 23rd and got back today. We had a great time, went to all 4 Disney Parks. Kids didn't want to leave. We had some great times in all the parks and can't agree which was best, I loved Soring in Epcot, Sean n Rory liked Thunder Mountain, Niamh liked meeting the Princesses and Space Mountain.

    One of the best moments had to have been yesterday in MGM, Sean had just got his face painted 5 minutes before the Star Wars show and while watching the show kept hoping they would pick him as one of the kids to fight Dart Varder. They didn't pick him but one of the crew members brought us back stage and we had an impromtu photo shoot. There was stunned silence while Niamh and Sean met the cast, but Sean hasn't stop talking about it since and how he is going to take Dart Vader down. It was so specail I feel like writing to Disney to thank the Star Wars crew and cast.

    Hope everyone has a lovely New Year. We start back on the threadmill on Jan 2, The "miracle" hasn't happened (yet) but Sean is so much straigher than before, and we are working on trying to get him to stand - I am trying to get a video of him doing it. Rory and Niamh leave next Sat 5th Jan and we have 4 more weeks until we fly home.
    Last edited by soimumireland; 12-28-2007 at 10:47 AM.

  7. #17
    Good picture, he doesn't look like the same kid with his red face.
    C2/3 quad since February 20, 1985.

  8. #18
    What a wonderful Christmas for the entire family.
    Sean looks like he can't believe he actually is where he is in that photo. Awesome.
    Life isn't about getting thru the storm but learning to dance in the rain.

  9. #19
    Can't post anymore videos as my hubbie took the digital camera home with him. Anyway we are concentrating on trying to find ways to get Sean to "switch on" the ability to straighten his legs. He can sometimes do this when his feet and toes curl or if someone touches his instep then his legs lock.

    We discovered this one night while I was sitting on the floor with Sean perched on my lap. Sean lunges forward, puts his 2 hands on the floor and pushes, next thing I know I have a bum in my face. Anyway I proped my head against his bum and Sean tilts his back up so he is standing. Leaning against my head but standing for all of 1 second. He was happy to show off his new trick in the lab the next day and I think he surprised them all. This is what is so frustrating, Sean will experiment and test his capabilities but in the lab he just switches off - like he is a puppet on a string - a noisy puppet.

    Please excuse the bad spelling and grammar but 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

  10. #20
    Senior Member kate's Avatar
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    This is so fun to read!

    I've been looking for the notes I made when I was there with Bruce in 2004. I vividly remember Mark Bowden and Preeti and Chetan, and of course Dr. Behrman.

    You should ask her if she still has her Xena the Warrior Princess outfit . . .

    Your comments about names of things made me laugh; there was one afternoon when we were between bouts, just visiting idly, and Preeti started talking about her deep love for sticky buns.

    Bruce and I were cracking up and telling her about other connotations of the word "buns" . . . which provoked a very serious examination of how formal a place has to be before it's not okay to use that word. Is it okay to say in a grocery store? In a church? lol, I can hear Preeti's lovely Indian accent asking these questions, trying to learn.

    I also have a very vivid picture of how intimate this training process is -- with the trainer/researchers trying their intense best to become like extra body parts to the subject. I can see them, very focused and intent with their hands firm on my husband's body, trying so hard to catch his rhythm and give him just enough help, just the right kind of help. Lovely people!

    Please say hello to Dr. Behrman from us, and keep up the story. (I read it with an Irish accent.)

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