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  • #91
    hi nikki
    so glad to hear you guys are home!! I can't believe it's over. How is she feeling?
    jennifer

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    • #92
      Jennifer,
      Crystal is doing much better now that we are home. She is a little more content. I am proud of her though. No matter how bad she hurt in the hospital, she never got nasty or rude with the staff there. She was really pretty good with me. The only time she got real nasty with me, I was trying to put her brace on her and she started to bite my head off. I just let her lay there with her brace half on and went and got a nurse to finish the job. That was about the only time she got nasty with me, and I think it was her impatience that got the best of her. But, she has been smiling a lot today. It is good to see that. Her biggest complaint is her right shoulder is really sore. She said it actually is more sore than her back. So, I'm not sure if a heat pack or cold pack might help it. Got any ideas on that one.

      She's watching a NBA game right now - TrailBlazers vs. Kings. She is excited for the next 3 months to go by. Doctor said she could probably start light running then to start getting in shape for basketball season. He sees no reason for her to not be able to play next November. So, she is following his rules to a tee.

      Tell Nicole that she will survive this. There are moments during the day, about the time pain meds are due, that Crystal wonders if it was worthwhile. But, then when she is feeling good and can take a deep breath, which she could never do before, she says it was worth while.

      It will get better once you get done with surgery and can go home.

      Love and prayers to you.

      'til later,
      Nikki

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      • #93
        hi nikki
        it's great to hear that crystal is doing good. Can you believe that it is over. I definitely thought the stress before the surgery was worse. The shoulder pain is very normal and common. Alot of kids really complain about that. My nicole really didn't complain about it too much, but i every once in a while she says that her shoulder bothers her, but then it goes a way. I would think a heating pad or ice would probably be good. How is Crystal doing with the brace? Did she have to wear one before her surgery?
        jennifer

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        • #94
          Nikki,

          When is Crystal's shoulder bothering her? Jamie discovered that in the beginning, if she sat on the floor too long without anything to support her back, her shoulders would hurt. If she sat in a chair with a high back for awhile, it would go away without ice or heating pad. Is the brace pushing on her shoulder?

          Jennifer,

          Has Nicole complained in the past few months of her back being sore? Jamie has commented more recently about her back being sore than she did right after surgery. I'm guessing that it is because of going to therapy (over an hour and a half each day) twice a week.

          Mary Lou

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          • #95
            Nikki,

            Shoulder pain is something I hear on this board all the time. From what I understand it can take up to a year for the muscles to adjust to their new position. My daughter complained a lot the first week of her shoulder getting a spasm, but that has calmed down a lot since we've been home. We bought a giant heating pad (18x30) and she finds the heat to be very comforting.

            Also, we got a massage wand. Sometimes, when it's not quite time for the pain meds, she gets a little despondent and she starts to cry and wonder if the hurting will ever stop. I have found that the massage wand is kind of a pattern interrupt. The vibration seems to distract her from the pain somewhat, and it's been a good coping tool. She uses it on her neck and shoulder and it really seems to help.

            Susanna
            Susanna
            ~~~~~~
            Mother of a 17 year old daughter. Her "S" curve was 40 degree thoracic from T3 to T9, and a 70 degree rotatory thorcolumbar from T9 to L4. She was operated on March 9th, 2005 by Dr. Boachie-Adjei at the Hospital for Special Surgery in NYC. She was fused from T11 to L3, using an anterior approach, and the major curve corrected to 20 degrees. She's doing great!

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            • #96
              hi marylou
              nicole was complaing about a month ago and that's where Jamie is now, she would complain on and off. Somedays things would bother her and other days she was fine. She hasn't complained in a while now, so i'm happy about that. When we went back to the dr. he gave us another 6 weeks of physical therapy, which my husband is yelling at me to call and make an appointment for that, so maybe next month jamie won't be complaining at all lol. I'm sure there will be some achy days. Jamie's physical therapy is long, nicole's was only for a 1/2 hour. What do they have her do there?
              jennifer

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              • #97
                Jennifer,

                Jamie does about 1/2 hour of exercises in the pool-leg stretches, leg kicks, "crunches", arm exercises with floats, walking on the treadmill (Do you remember hearing about the football player who did his rehab in a Hydroworx pool to be able to play in the super bowl? That is the same exact pool Jamie is working in! In fact the company who invented the pool asked for our permission to follow Jamie's progress in the pool as not too many kids use this pool) and about 5-8 minutes in front of the jets. She then goes upstairs, for about 1 hour to 1 hour and 15 minutes.There she sits on a large ball and does leg lifts and stretches, she uses straps that are stretchy and attached to the wall to work on her arms, she does a lot of leg work on the table, she does "crunches", and I can't remember the rest. Jamie has always had tight legs, and that is limiting her bending ability. We had hoped to be done with therapy by now, but she is going to be re-evaluated today and they are planning on asking for another prescription. She has already had seven weeks of therapy and this is the second time they asked for a new prescription.

                Mary Lou

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                • #98
                  hi marylou
                  that sounds like a good workout. It will sure get her back into shape. When does she go after school? I'm sure they will keep asking for prescriptions from the dr. because they probably don't want you to stop coming so they can keep getting paid. Does she do alot of bending? Nicole is allowed to bend now, but i don't think she does, i think she still bends at her waist.
                  Jennifer

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                  • #99
                    Jennifer,

                    When we started out, Jamie went to therapy during gym class, but since she goes for such a long time now, we go after school. Jamie was re-evaluated today and they would like to try and get two more weeks. She has made good progress, but her legs are still very tight and that is limiting her bending somewhat. She doesn't really bend too much. She is so use to bending at the knees, that she still does that. However, when she starts being allowed to lift, that is the best way for all of us to lift, so it's a good habit to be in. I do try and remind her to bend at the waist, because with as much fusion as she has, that is the only place she can bend from.

                    Mary Lou

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                    • Hi Everybody,
                      Was any of your kids legs tight because of the scoloisis? Marisa right leg is so tight her curve is to the left which makes her bend to the right and her leg is tight. Risa
                      Risa the mother of a 11 year old girl. She has CP, Coritcal visual impairment, non verbal, non mobile, total spinal fusion with 4 screws at the base. God's blessing

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