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Kidsstep Program - Online diary

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    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; 28 Dec 2007, 10:47 AM.


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


        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.


          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


            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.)


              Got a phone call from my brother to tell me my mum had a heartattack on the day before. She is doing well as anyone who has just had a heartattack can be. My family didn't want to tell me, which I understand but I feel so helpless I can't even talk to her.


                Oh, no.

                Sending good thoughts your way, and hers. Hang in there.


                  Mum is home from the hospital, she is doing well but very shaken. Sean getting over yet another UTI. Both are made of stern stuff. I got some video footage from the program to send home so I will post it in YouTube as soon as I have edited it.


                    Sending positive vibes for your mum and Sean. Hang tight it will all work out ok. I will keep my eye open for the YouTube video
                    Every day I wake up is a good one


                      Hi, I just read through all your postings, and I want to say that Sean is a brave young fella, and that I hope your mom continues in her road back to health. On another note, thank you for writing about my trip to Co. Cork last month. It was a wonderful two weeks, filled with gorgeous vistas and the ever present rainbows. Our little town of Eyeries was wonderful, and we made several trips into Castletownbere for dinners and shopping. Now that I have found this thread I will keep up to date with how you are doing. All the best to you!



                        This is one of my favourite videos as I will never forget the look in Sean's eye when he saw himself standing for the first time without any braces or harness. Isn't he lovely and straight? Anyway 2 days after this session, Sean tried his little trick while on my lap and I had to employ the head to bum technique. Have one video of it but not great, will try and get a better one.

                        I sometimes feel self conscious about posting all this stuff and putting the videos in youtube. I have learnt so much from other people sharing their stories and I believe it is important to share information and hope. Anyway thanks to everyone for your support, I loved the comment on one of the videos where the person was going to sing the James Bond theme during their 1st Lokomat session after watching Sean's Youtube videos. Maybe we should make it a tradition for all lokomat or gait training.

                        Eileen - glad you enjoyed Ireland. It is a great place as long as you dress for the weather. Since it is possible to get 4 seasons in one day, you can always tell an Irish person by size of their luggage.


                          That was me that said I wanted to sing the James Bond song. I didn't sing it the first couple times cause I was too overwhelmed but I did sing it eventually. I was really inspired by Sean and all the people who post their videos. Keep up the good work Sean, maybe we can race down the hall someday
                          C3/4 Brown Sequard


                            He looks like he's doing very well, especially on to standing without much support. I am very happy for your family.
                            C2/3 quad since February 20, 1985.


                              Originally posted by AlexAgain
                              That was me that said I wanted to sing the James Bond song. I didn't sing it the first couple times cause I was too overwhelmed but I did sing it eventually. I was really inspired by Sean and all the people who post their videos. Keep up the good work Sean, maybe we can race down the hall someday
                              Thanks AlexAgain - your on for the race - be warned Sean will have a "Q" equipped walker.

                              Great video and I hope your training is going well. Have you noticed any differences?
                              Last edited by soimumireland; 22 Jan 2008, 10:07 PM.


                                i have read all the posts and watched all the videos and it tears at my heart to watch this darling child working so hard and yet he is so happy! you can feel his joy as you watch the videos. from your posts it sounds like he is progressing and i pray this will continue. i am so happy that he could participate in this program and i hope that he will improve and improve and improve.

                                as a mother i know this must be so bittersweet, to watch him have to live with his limitations and yet to see such promise and hope. and, it must be so hard to be so far from home and family. i hope that this program will be only the start of great strides towards recovery.

                                i had laugh at your post about learning the new language! lol my husband of four years is from london. before i met him, i never realized that there was so much difference in the meaning of words in the english language! imagine my surprise when on our fourth date, he said, let me go put on a jumper before we go out. ?????? to me a jumper is a dress worn with a blouse underneath! so i're gonna put on a jumper??? he said, yep be right back. imagine my surprise when he returned wearing a sweater! lol

                                humor aside, i am so happy to see your sean making such progress and i will be anxiously watching each post and rejoicing with you as he continues to improve.

                                tell sean to try "eye of the tiger" for his music one day, maybe he will like that one! it has a good beat too!