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Thread: Off to Shiners in Philadelphia - where good for kids

  1. #11
    Thanks everyone for the advice

    We are going to see if we can address the lordosis in Sean's back and help him walk better in his RGO - here he is playing football

    http://www.youtube.com/watch?v=hDlvxDqyujU

  2. #12
    Senior Member lynnifer's Avatar
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    LOL! Love his running commentary!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #13
    Senior Member
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    i stayed at shriners out in sa fran (i believe they have a different name now) after my injury to be taught my ADLs. my mom said i couldnt go to sleep without watching start trek: the next generation and once the nurses turned OFF the tv right as it came on. i threw a fit. my mother was called. and she was all "let her watch the show! she wont go to sleep until it's done" and sure enough as soon as ending credits came, i was out lol

    philly is great. do all the museums and the zoo.
    "Smells like death in a bucket of chicken!"
    http://www.elportavoz.com/

  4. #14
    Quote Originally Posted by crypticgimp View Post
    i stayed at shriners out in sa fran (i believe they have a different name now) after my injury to be taught my ADLs. my mom said i couldnt go to sleep without watching start trek: the next generation and once the nurses turned OFF the tv right as it came on. i threw a fit. my mother was called. and she was all "let her watch the show! she wont go to sleep until it's done" and sure enough as soon as ending credits came, i was out lol

    philly is great. do all the museums and the zoo.
    I taught at Shriners SF before they closed it. They opened a SCI facility at UC Davis Med Center in Sacramento.
    Every day I wake up is a good one

  5. #15
    Quote Originally Posted by soimumireland View Post
    Thanks everyone for the advice

    We are going to see if we can address the lordosis in Sean's back and help him walk better in his RGO - here he is playing football

    http://www.youtube.com/watch?v=hDlvxDqyujU
    I still remember the first photo of Sean with Angel wings but the devils twinkle in his eyes. He has come so far. Please keep us posted on Philadelphia and your adventures.
    Every day I wake up is a good one

  6. #16

    We are home

    Back from Shriners in Philly - we managed to miss the earthquake. We were very impressed with Shriners and would recommend any parents of kids with SCI to try it. You apply for treatment and once accepted any treatment provided by the hospital is free. Loews is a lovely hotel which offers a discount to people attending Shriners, in the city centre and only 2 miles from the hospital. We didn't get much time to sight-see but the hotel is opposite the Hard Rock Cafe and Sean and Niamh got to sing with the band on stage. It was 2 18 year old twins and Sean asked them back to his hotel room. They said yes - I said No. check out attached photo


    Anyway we got good and bad news, at age 9 Sean could have tendon lengthening but he would probably need a second op before he finishes growing. Also because he is so functional in his RGO. see video above they feel that the op would weaken the muscles he uses to walk in his RGO so it is something we can consider at a later date. At first they did not believe Sean was walking in the RGO's but once they saw him move they were impressed with his ability. They don't know how he does it but it is certainly not doing him any harm as he was not using his spine to move which they originally thought.

    Also met a urologotist and a hip specalist who gave us very detailed information about Sean - all good at the moment. Down side they want him to wear a body cast for 23 hours a day. Sean is a very mobile and independant child so this is a body blow for us. I don't know how / or if I want to keep him in a cast. Shriners made up the cast while we were there - would take 8 weeks start to finish in Ireland if not longer)

    So we are finished our adventures for the moment and getting ready for back to school which is not impressing Sean at all.
    Last edited by SCI-Nurse; 08-29-2011 at 08:55 AM. Reason: Right-size photo

  7. #17
    What a beautiful (and photogenic) family you have.
    I'm not surprised the Shriner's treated you first class, but sorry about the "blows."
    Still, it sounds like Sean is doing just fine.
    Thanks for the update!

  8. #18
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    Ha! Sean's got good taste when it comes to asking girls back to his room!!

    I noticed that your original reason for going to Shriners was to help Sean walk better in his RGO - did you achieve that? Reason I ask is that I thought he was doing pretty well in his RGO in video you posted...

    As for the body cast, I know exactly where you are coming from with your thoughts. We're looking into this straps bracing method instead:

    http://strapsbracing.com/bracing-gar...coliosis-suit/

    The other reason for looking into this bracing method is that one of my son's hips is getting a bit close to being "out" of position, so we are hoping that this suit will assist.

    Not sure how well it will work, and it is certainly taking a long time to be finally ready, but I think it will be a lot better for our son than a rigid cast. Will let you know...

    Cheers,
    Gordon
    Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

  9. #19
    I love Hershey Park even better than Disney World! There are lots of things to do and they have a great Animal Park. The staff was always really friendly (genuinely not fake or "good training") It is a good time of year also. If you go, I hope the experience is as good as the ones I had. It has been about 4 years since I was last year.
    "Nothing ventured, nothing gained." - My Grammie

  10. #20
    Oppa. didn't realize you already came back! I didn't click "page 2"
    "Nothing ventured, nothing gained." - My Grammie

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