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  • #46
    It really is hard, isn't it? It all seems so unfair someitmes. I know there are worse things, but just sometimes.....
    One blessing of scoliosis for Rachel is that she and I have had reasons to spend time together that we never would have otherwise. Maybe this will turn out to be a similar blessing for you. YOU are the BEST at turning a trial into a celebration! I'm praying God will make this into a blessing for you.
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

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    • #47
      Thanks Everyone,

      The hardest part is that Nicole can't go right back to her "old life" as she calls it. This weekend her friends will be spending all day Sat. at the dance studio and she will be taking small walks around the neighborhood. If it was truly temporary and in one year she would have her body back the way it was flexibility and all, I think we would be able to deal with it better. But what will she be able to do next year? Only time will tell.
      Are there worse things? Of course. But if it weren't for all of you and your children, I think it would be really easy for me to just look around at the hundreds of children I know here and wonder why Nicole is the only one who has to deal with this. I really don't want to fall into the trap of feeling sorry for myself or for Nicole. Believe me, when I talk to Nicole I sound very positive and upbeat about everything. But I can tell you the truth about some of my feelings.

      Nicole is a singer, as well, and that is something positive to focus on. Her future high school has an amazing music program and I know she will get very involved there.
      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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      • #48
        Melissa,

        It's very hard to see your child left out of the activities they love. I had my own pity parties now and then, looking at all the kids at his school, and his friends carry on with seemingly care-free lives. Like you said though, this is a great place to unload-we need to stay positive for our kids. It can also be a (good) turning point, I know I was happy to see Joe get motivated enough to find things he could participate in. He initially joined marching band only because it was a way to fulfill his P.E. requirement since he couldn't do regular p.e. Turned out he really enjoyed it, he's now in his second year and is section leader for clarinets. He also is involved in academic team and vice-pres. of chess club, these things he might not have joined pre-surgery, but have turned out to be good things for him. This may well be true for Nicole and singing, since she has to back off dance. Since your school has a good music program, there may be more opportunities to involve herself in.

        Best wishes,
        Renee

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        • #49
          It is hard, isn't it? I think many of the same thoughts, I don't see any kids at my daughter's school with scoliosis, or anywhere for that matter. I can tell you that at 5 weeks post op, she has started back to school, 1/2 days, feels good and doesn't seem to have lost much/if any flexibility. She's not allowed to be doing some of the things I see her doing, and I have to keep reminding her. She wanted to be on the fall swim team, and has been released to swim, but, isn't allowed yet to dive or do the flip turns. I am trying to get her to just be on it in practices and maybe going to the meets (not swimming), hopefully they will let her be an "honorary member". She also was on the marching band this year, however, we have been told that she can't do that until she is released for PE, and that wouldn't be till at least February. In fact, he sounded more likely to not release her to marching band than for pe). Every doctor is different, I guess. Just take it one day at a time, try not to worry about next year. (I try--it's not easy). It keeps getting better, I'm actually amazed at the difference in my daughter from 2 weeks ago -- you will start seeing the same things. Once she can get back into somewhat of a normal routine, she will be happier.
          Last edited by emma12; 09-26-2007, 03:27 PM.

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          • #50
            Thank you for letting me vent. I am so happy that your children are doing so well and are enjoying many new activities. That is wonderful. We actually had a turning point today. Nicole had wanted to do her tap solo to "I Want to be a Rockette" and today she talked to her voice teacher and she is going to work on it as a vocal solo instead. We will begin lessons in November. She has done vocal solos before, but many of the dance competitions don't have them. Hopefully one or two that our dance school is doing will have a vocal competition so that Nicole can go and be a part of something. I haven't seen her this happy since before the surgery. She spent a good deal of the afternoon googling costumes.

            Except for the occassional really bad back pain and the fact that she is not twisting or bending, she is really starting to seem like herself. I am anxious for her follow-up on Friday.
            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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            • #51
              Inspiring

              I'm so glad to hear Nicole is - it's so nice to see that 2weeks post op it is possible to be smiling about something!
              2000 34*L/39*T
              2007 44*L/53*T

              12.3.07 Posterior Spinal Fusion T4-T12
              (initially planned T4-L1)
              12.18.07 11*L/10*T

              23 years old

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              • #52
                Thinking of you.

                Hi Melissa,

                Well, it sounds like you have been through a lot. Just wanted you to know that we are thinking of you and pray that everyday gets better. If strides continue to be made as they have so far, I bet Nicole will surprise you with her strength to adapt to change and her ability to find happiness in her life no matter what she ends up doing in her free time. She is a talented kid with options, and she has a great family to support her.

                Best Wishes.

                Sincerely,

                Sarah

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                • #53
                  Melissa,

                  What Sarah said is so true.

                  As the saying goes - "When one door closes, another one opens up".

                  I've found that sometimes things really do happen for a reason. I hope that one day you and Nicole will look back on all of this and see that probably something good came out of it - even though I'm sure it's not apparent at the moment.

                  I know that I would have never chosen for David to have scoliosis - but I realize that some good things came of it (making so many friends, yourself included, is just one!)

                  Hugs,
                  mariaf305@yahoo.com
                  Mom to David, age 17, braced June 2000 to March 2004
                  Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                  https://www.facebook.com/groups/ScoliosisTethering/

                  http://pediatricspinefoundation.org/

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                  • #54
                    Thanks for sharing your stories, they are encouraging for those of us still waiting for surgery. I have the exact feelings for my daughter, my only wish is that she can get back to her normal life afterwards.

                    Melissa: Any idea when Nicole will return to school? It must be a relief to see her getting back to her old self.

                    Emma12: Glad to hear your daughter doing so well, how long was her fusion?

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                    • #55
                      What is that saying, "When God closes a door, he opens up a window?" Something like that. Anyway, thanks for all of your good thoughts. Nicole's tutors will start to come on Oct 1. We plan to keep Nicole home for the month of October with the tutors coming throughout. Then we can probably start November out with half days, then full days. I am planning on sending her full days when she is 8 weeks post-op. Of course, it will depend on how she is feeling.

                      I have Back-To-School night tonight so it will be nice to get out of the house and meet all of Nicole's teachers.
                      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


                      • #56
                        i think as parents we can get very stuck in our dreams and expectations about our childrens future. They themselves are often much better in adjusting to life's realities and finding new (and better) ways of enjoying themselves. we need to learn from them.

                        l says, what she finds the hardest is not that she has scoliosis, or that it might affect her dancing, but that she sees us upset and that she might disappoint us!! Definitely something i am trying to take on board.

                        still, melissa, you are doing great and it is obvious that nicole, through her own strength and attitude, and with your support, will do very well!!
                        Last edited by gerbo; 03-24-2012, 04:43 AM.

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                        • #57
                          I totally agree with the one door closing and another one opening. Jamie has always loved to swim, but never joined a swim team until after her surgery!

                          Mary Lou
                          Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

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                          • #58
                            Gerbo,

                            I can't believe your daughter said that. That is just so amazing. I am really surprised. What a compassionate and sensitive child. I can't pretend that Nicole is anything like that. She looks so sweet on the outside, but she has attitude coming out everywhere.

                            Mary Lou,

                            That is so awesome about the swimming!!!

                            We had our post-op visit. It was very long including all the waiting and x-rays. Dr. Dormans says everything looks great and she could start back to school half days next week. That is crazy, we are nowhere near ready for that until we get this pain under control. Nicole was crying in the waiting room because of pain. We believe it is muscle spasms because it gets better and worse. He gave us a prescription for a muscle relaxer and I just gave it to Nicole but can't remember the name. It will make her drowsy which can be good because she is having trouble sleeping. But of course I don't want her sleeping all day. He said he believes we are just near turning the corner on the pain and next week will be so much better.

                            Nicole is just shy of 5'7" which means she grew about an inch and a half. She is still down about 7 pounds but she has really been eating a lot lately and I know it will just be temporary.

                            We got our numbers and Nicole was very disappointed. The good news is that her 60 degree curve is now an 18. But she is sad that her 45 is at 20. She always reads of kids being at 0 or 8 or 10. But believe me I know it was the best and the safest he could do. He did say her spine was stiffer than he had thought. The doctor who read us the numbers was reading it off of a screen. Wonder if different people would have different readings.

                            Anyway, thank God that appt. went well. We go back in 6 weeks. My husband went with us, but isn't sure if he will be able to go on all appt. He has already missed enough work.

                            Anyway, thanks always for caring.
                            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


                            • #59
                              Melissa,

                              Please tell Nicole not to be disappointed - from 60 to 18 is not bad at all! I know she hoped to be at 0 or something close to it, but in time she will realize that curves of 18 and 20 will not cause her any problems down the road and won't impact her life in any way.

                              I agree that all-in-all it was a a great appointment

                              Glad to hear it.
                              mariaf305@yahoo.com
                              Mom to David, age 17, braced June 2000 to March 2004
                              Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                              https://www.facebook.com/groups/ScoliosisTethering/

                              http://pediatricspinefoundation.org/

                              Comment


                              • #60
                                After talking to our doctor, I think there are many kids who aren't ready to go back until 8 weeks post op. If she's not ready, everything will work out with the tutors. My daughter was able to start back 1/2 days this week (was about 5 weeks post op). But, she really hadn't had any pain for 2 weeks, although there was one episode the other night when she kind of twisted to answer the phone, and screamed and collapsed in pain. I'm not sure if it was a spasm, or she pinched something. She took some tylenol, and was fine within a half hour. Kind of scary though. Anyways, all these kids are different, and, I would not hesitate to keep them home as long as they need to be. She's done well with the 1/2 days, and could probably go all day next week, but I think I'll keep her to the 1/2 days for at least another week. The last thing these kids need to be is pushed too fast back into their regular routines. If Nicole is still having pain, she needs to have more time. At school, kids are all running in between classes... She'll know when she's ready for all of that. She's only a couple weeks post op, isn't she? The pain will keep getting better for her, I have read alot about muscle spasms continuing for a while.

                                Our doctor talked about over correcting some curves back to 0, he didn't think that was the best thing to do. I think it is better to have both curves relatively equal, from what our doctor claims. The kids look more balanced. It sounds like Nicole had a great correction, can you remember when her curves were originally those numbers? You may not have even known she had scoliosis then - I didn't realize it with my daughter. And, I think that reading the xrays off the screen does give different numbers than when measured off a regular xray--just my observation that seemed to happen in our case.


                                To Sherie, thanks, my daughter was fused T2-T11, she had a lower curve that was thought to be compensatory and wasn't corrected - we're still praying that it straightens out, her doctor said it was not as straight as he would have liked it to be at our 4 week appt.

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