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  • It is not easy, we, too, are going longer without wearing the brace; what we're doing is more shorter stretches, instead of one or two long ones; so she probably never has it off more than two hours . . . I don't know what to do . . . . . it's summertime! p

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    • We just got back from the shore and there were times that Nicole had her brace off for 5 hours or so because of the beach or pool. Of course, she is not swimming many laps, so I can't say the hours don't count. There is not much we can do. As soon as we come in, she showers and puts it back on. I really don't think it will make a difference. It will work or it won't, regardless of these events.

      I keep asking Nicole to try something other than those bodysuits, but she refuses. She is doing indoor performing arts camp starting next week, so it will be cool where she is.

      Today is officially 10 months that she is in the Spinecor.

      Anyone want to meet us in Montreal? We are going for just one night because Nicole will have her camp show the next day.
      I think we are going on the 19th of July. I have to go look it up.

      Happy 4th of July.

      Melissa
      Melissa
      From Bucks County, Pa., USA

      Mom to Matthew,19, Jessica, 17, and Nicole, 14
      Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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      • The first time she went into the lake, I said "o.k. 2 hours of water fun and then get the brace back on" Well…. it’s really difficult to get a kid out of water especially when her brother and friends are in there having a grand old time. I know that 2 hours out of brace are allowed in the morning and evening and I'm pretty sure that the 4 hours are not to be taken together. I'm just hoping that when she's in the water she's weightless and it won't have any effect on her vertebrae --- wishful thinking?????

        Melissa, I would love to get together but we won't be there until October.

        Canadian eh
        Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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        • Hello to everyone,
          as you know my daughter is going to have surgery. By now we are all very positive about it and know that it is the best we can do for her. The Spinecor was a great hope for us but with a curve of 40+ at the time of discovery and age and risser of 0, it became clear that nothing would have stopped the progression.
          We just got the surgery date about a week ago, Aug 16th (my birthday) so that for me is an extra special of a day.....
          We are flying to the US, Springfield, Mass. at Shriners hospital, July 17th-yes in less than 2 weeks - for the first pre-op meeting, first blood donation etc. Then we will have 3 weeks to spend in California, stay with family and for Anastasia to do her favorite summer camp at Idyllwild summer arts academy for 2 weeks....couldn't have better activity before surgery!
          Then Aug.8th back to Mass. for the rest of the pre-op tests and prepare for the day.
          The main thing is that she is positive and ready to have the surgery, she will only miss the first 2 weeks of the new school year.
          Like everyone else she has been wearing the brace less and less, with beach trips and pool days....we do live on a very hot island.... it is hard to ask her to wear it more....
          Hope everyone is having a great summer, I will keep you posted.......
          Love to all,
          Pola

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          • Now, just imagine what it would be like with a boston type brace, that is really, really hot. We have always sinned against the 2x2 hour rule as with lisanna's daily ballet classes, this is nearly impossible. Most days she'll have a 3 hour stretch without and on saturday, which is washday and the day of her special ballet classes she goes for about 6 hours. Mr Mills has accepted that as long as things do not deteriorate.

            When Lisanna wore the tslo, we used a "coolmax" undershirt, which did have a special effect on sweating. I have tried to persuade isanna to try this one with the spinecor as well, unfortunately she is unwilling as she associates it too much with that nasty hardbrace

            We alsways have seen swimming as weightless time and there fore not counting. This is surely what was said with regards to wearing the TSLO brace, so celia, i think you can relax about that one

            Generally, what ever regime we want to put our daughters in, it needs to be manageable and livable, otherwise they will eventually completely rebel and not wear the damned thing at all, abit of flexibility now and again will help with long term compliance, i am sure. We do not want to destroy their youth completely, do we??

            Pola, i was just thinking about you this week and wondering how things were going, so thanks for writing in. It really looks as if you are facing the future positive, this is great and i am sure well warranted. Just think of it, a few months and no brace at all; what a blessing. Can i please sincerely wish your daughter, you and your family all the best with regards to the operation. Do keep us posted

            with best and warm (hot) wishes (anybody want to have another go at my polarbear joke, just to cool down a bit?)

            gerbo

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            • Pola,

              We all wish you the best as you prepare for the surgery. It sounds as though it will be combined with a lot of fun and family visits. That is great that you were able to work it out that way.

              Would you prefer that we visit you in Mass before the surgery or sometime after? Please let us know and we will make the arrangements. How long do they want Anastasia to stay before she is allowed to fly back home.

              Nicole is really looking forward to meeting Anastasia.

              Keep in touch. Our thoughts and prayers are with you.

              Melissa
              Melissa
              From Bucks County, Pa., USA

              Mom to Matthew,19, Jessica, 17, and Nicole, 14
              Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

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              • Gerbo,

                As hot as I am, I couldn't possibly take that polar bear joke again. Our humor is so different here in the States!!!

                Anyway, I agree with you that our girls have to have fun in the summer. I am sure they are all doing fine with their extra breaks.

                Melissa
                Melissa
                From Bucks County, Pa., USA

                Mom to Matthew,19, Jessica, 17, and Nicole, 14
                Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                Comment


                • What really bothers lisanna again and again is that with most trendy "tops", which tend to have quite open necks, the straps are so visible. If she feels strong that's ok, if she feels insecure, it becomes very tough.....

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                  • Our humor is so different here in the States!!!
                    Absolutely not; Friends, Mash, Shrek, Steve Martin (nothing beats older steve martin films in our family) george bush, Humor in the states can be fantastic!!!
                    Last edited by gerbo; 07-06-2006, 04:57 AM.

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                    • Oh... have you seen the new Steve Martin movie "The Pink Panther" ????? It is sooooooo funny ! I highly recommend it. We also saw "Eight Degrees Below" and my 8 year old son couldn't stop crying at the end.

                      Gerbo, thanks for the reassurance about having the brace off for more than the recommended number of hours. I certainly don't want to rob her of the thrill of childhood.

                      Canadian eh
                      Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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                      • Pola,

                        I can't possibly imagine the emotions you're feeling right now. It's such a huge operation for a seemingly healthy young girl. I'll be thinking of you and Anastasia as the day approaches.

                        Canadian eh
                        Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                        Comment


                        • Oh... have you seen the new Steve Martin movie "The Pink Panther" ????? It is sooooooo funny ! I highly recommend it. We also saw "Eight Degrees Below" and my 8 year old son couldn't stop crying at the end.
                          that was much better than we expected and really made me and my 13 year old son laugh. Our favourite remains "Roxanne" and if you have never seen it, get the dvd, get a bottle of wine and take the phone of the hook, it is so funny

                          eight below, that was the doggy one of walt disney wasn't it? Louise (my wife) and myself had more tears in our eyes than our children

                          Gerbo, thanks for the reassurance about having the brace off for more than the recommended number of hours. I certainly don't want to rob her of the thrill of childhood
                          it isn't really meaned as reassurance, as i am not in a position to really reassure, just sharing what we are doing, rightly or wrongly. (i think that was meaned as kind of a disclaimer celia, still, i do believe that life is for living, and we cannot stop our children enjoying their childhoods)

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                          • and not to forget "three amigos", set in the heat of the mexican desert, so no polar bear in sight, seriously funny....

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                            • Pink Panther and Spinecor

                              Just thought I'd jump in and update- my daughter and I took the train from Seattle to L.A. connecting to Fullerton. The Starlite Express as it is called runs anywhere from 9-14 hours late and plays funny movies like the Pink Panther repeatedly to help parents like me finally get why - "I would like to buy a hamburger" is so funny.

                              We were a little late for our appt. with Dr. Gorrie's office but they graciously accommodated us.

                              I was very happy with his thorough evaluation of my daughter. I believe some decisions are made because of a matter of degrees.

                              Olivia went from a 45 T.L. with original x-ray to 40 with a lift and then 33w/lift in brace. Her Mid Thoracic went from 34 to 25.

                              Dr. Gorrie determined she was at Risser 3 instead of 4 with the clearer x-ray, confirming my thoughts that she really isn't done growing.

                              The word compliance has new meaning to me, as we are working toward full-time in the brace. She seems to be getting used to it, but not without a few complaints. Luckily, our N.W. weather is not too hot.

                              Take care all, Megan

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                              • Originally posted by meagain
                                - "I would like to buy a hamburger" is so funny.
                                Definitely my favorite part in the movie, I laughed until I cried.

                                Originally posted by meagain
                                Olivia went from a 45 T.L. with original x-ray to 40 with a lift and then 33w/lift in brace. Her Mid Thoracic went from 34 to 25.

                                The word compliance has new meaning to me, as we are working toward full-time in the brace. She seems to be getting used to it, but not without a few complaints. Luckily, our N.W. weather is not too hot.
                                Hi Megan,

                                I was particularly interested in your post because your daughter's curves are nearly identical to my daughter's, Sheena. She's also been in Spinecor, next week we are going for 3 month eval.

                                The results you are getting are much better than ours. I was wondering if the 'lift' your referring to is for the shoe? That's a big difference with and without it. I plan on going to a different dr. if there's been no improvement in-brace after next weeks xrays.

                                We are in Houston, it's really hot and humid here in the summer but Sheena hasn't complained too much because we just don't do much outdoors in the heat.

                                Take care and it's encouraging that you are getting such good results.
                                Sherie

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