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  • #16
    Pat,

    Yes, you can and will handle this! I won't say that you won't end up with grey hair, lol, from stress/worry, but you will handle this. You have to handle this, 'cause how else will the rest of us get through it without your example? lol I take it that Jamie's appointment went well. I agree with Pat, basically all of Jamie's restrictions are lifted already? WOW!

    I'm glad to hear that Ali's numbers are holding. We'll pray that they stay that way.

    Jennifer,

    I'll ask you like I asked Pat, do you personally check your other children's backs? Thank you for saying exactly what I thought when it came to Jamie's braces--the fighting wasn't worth it! My husband and mom used to tell me "just make her wear the brace." That's easier said than done. They weren't the ones in her bedroom listening to her cry and beg you to not make her wear it.

    Thank you both for all your continued support/advice. I couldn't get through this without great people like you on this forum.

    Mary Lou

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    • #17
      hi marylou
      yes i have my other childrens backs checked at every physical. Right after nicole's surgery one of the attending physcians were in the room and she checked my son as well and said he was fine, but like i said he is still young. My 7 year old wasn't there at the time but she gets checked as well.
      I know what you mean by people saying "just make her wear the brace", easier said then done. You can't force them to wear it and they're living with the screaming and crying about it. She was making our house nuts trying to get her to wear it. She had the surgery now 2 months ago and says that she is so happy she had it and doesn't have to deal with the guilt of not wearing her brace and she is glad she doesn't have to worry about scoliosis anymore, those were her words.
      how is your daughter doing?? Nicole is doing good. School is going fine, she is still walking a bit stiff though. How about Jamie?
      keep in touch
      jennifer

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      • #18
        Jennifer,

        I'm glad Nicole is doing better. I think being back at school is good for all our girls. They need that support from friends.

        Jamie is doing well. She has mentioned hip pain recently, but she is much more active right now. Her shoulder blade tends to hurt if she sits too long on the floor for example. She went to school Monday, but didn't manage to get there yeterday. She was to be at school at 7:30 a.m. and came downstairs around 6:00 and said she didn't get much sleep. I told her to go back to bed and she slept until almost 11:00! Needless to say, we didn't take her to school as her classes would be done at 11:25. Steri-strips are starting to come off. She is very cautious about people touching her back. She doesn't even want me putting lotion on the sides of her back which are very dry.


        Mary Lou
        Last edited by ; 01-05-2005, 08:05 AM.

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        • #19
          hi marylou
          i'm sure jamie is going to have some days where she just doesn't feel so great and can't make it to school. How many weeks is she now? I know that nicole is ahead of her and is just getting back to school half days so jamie is doing great starting already. When we took nicole for her 3 1/2 week check up she still had steri strips on and they took them off, she was not happy. She still does not let me touch her back and the dr said that it needs to be touched and rubbed to desensitize it. He said if it is not touched it will never get the feeling back. Since nicole doesn't let me touch it i have the physical therapy person do it. Nicole cried the first few times the lady touched it. She said it feels weird. Nicole didn't have any hip removed they used bone from her ribs for the fusion, but i have heard of the kids complain of the hip after for a while being sore.
          stay in touch jennifer

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          • #20
            Jennifer,

            Jamie is only four weeks post-op as of yeterday. I've already told her that if we feel it is too soon, I'll pull her out without hesitation. Her school has been great.

            Here's a thought for you. Have you talked to your school about what Nicole will do when they have fire drills? Jamie's principal will notify her teacher ahead of time and Jamie will be called to the office since she leaves her classes later than everyone else so she can avoid the busy hallways.

            Jamie didn't have bone removed from her hip or from her ribs for the fusion. They did osteomotomies on her and used the bone from that plus artificial material. I think the hip discomfort is just from adjusting to the different position of the spine, hips, etc plus the added activity of walking in school.

            As for the steri-strips, at her two-week check-up, the doctor actually had a nurse put a few back on! He removed a few strips to remove the stitches and check her incision but wanted them replaced. He said at this point to just let them fall off themselves. I'm sure that will be different when we go back in February if they are still there. lol May I ask what they are doing in P.T.? Jamie's doctor said she'll probably start 3-6 months out to work on mobility and flexibility.


            Mary Lou

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            • #21
              hi marylou
              i can't believe that jamie is 4 weeks and is going to school already part time. Wow, that is awesome! I think the recovery is a little better for the kids who use the artificial bone. I know that "bills mom" from the board her son also used the artificial bone and was recovering alot quicker than my nicole and they had their surgery on the same day. When nicole was 4 weeks she was basically sitting on the couch all day and just starting little outings.
              Nicole started p/t at 4 weeks i thought it was a bit too soon but that is what the dr. wanted. I was very nervous at first thinking they would have her do something that she shouldn't do yet, but basically they have her do some certain stretching of her shoulder muscles, they massage her shoulders, light massage on her back, she goes on a machine that looks like an exercise bike but it is just arm pedalling, and basically they are working on her posture and loosening her up a bit.
              I am so glad that you mentioned the fire drills. Thank you. Nicole and i had talked about that before her going back to school and i totally forgot to ask them what she should do when they have them. I am going to make sure i give them a call and talk to them about that. That is important. Thanks again for reminding me of that.
              jennifer

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              • #22
                Hello Jennifer and Mary Lou!

                Mary Lou, I just hung up from Jamie's school; we're all set with the fire drill issue, NOBODY even thought of that one - Thanks!

                I'm so grateful to you both for thinking of these things.

                Yup, pretty much lifted all her restrictions, she sat there grinning ear to ear, and I'm sitting there shocked! Well, I guess when you really think about it, what restrictions do they really have (am I clear on this?!), lifting heavy objects, bending, and .. . . . . ? So, he now told her she can lift up to 20 lbs., which is more than enough for any kid. And he had her bend right there in his office. Not to go crazy bending, but . . . . . Told her she can start diving (swimming/water) again. She is a little timid about that. I don't know!!!!! We go back again in three months.

                I asked her ortho about p/t, and for "regular" scoli post op kids he doesn't prescribe it. She moves very freely, you'd never know she had a back issue, and she's certainly pain-free, and has been for at least a month now.

                We shall see what the future holds!!!???

                Pat

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                • #23
                  hi pat and marylou
                  wow, that is amazing that she is allowed to do all that. I thought they couldn't do those things for a while. That is very exciting. I just received a letter from the dr. for me to give to the school and it said for her to get a set of text books for home and one for the class, no gym for the rest of the year and as of now she is allowed to lift 12 pounds. Nicole has only been to the dr. at 3 1/2 weeks and he said to come back in 3 months so we go back at the end of next month. I am looking forward to that appointment because nicole only bends from the knees so i'm sure she will be allowed to bend when we go back. That will be exciting.
                  I think nicole needs the p/t, she still walks a bit stiff. If you didn't know she had surgery you couldn't tell by looking at her, but i notice that she is still walking stiff. What is Jamie fused from?
                  And i have to remind myself about the fire drill issue tomorrow. Thanks
                  keep me posted on their progress

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                  • #24
                    Hi Pat and Jennifer...

                    I'm happy for Jamie that her restrictions were lifted, but I too thought they were restricted for much longer. I think the thought of her diving into the pool would scare the daylights out of me! We were told Jamie probably won't be riding our 4-wheeler, go hunting, hiking in the mountains, stuff like that for up to a year. At this point she isn't allowed to take gym or run or jump for 3 months. We also have a set of books at home and a book in every class room (no lifting more than 5-10 pounds).

                    Isn't it funny how each doctor does things so differently? Nicole was seen at 3 1/2 weeks and will be seen again at 3 months. I'm not sure about your Jamie, Pat, but my Jamie was seen at 2 weeks and will be seen again at 8 weeks.

                    Mary Lou

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                    • #25
                      hi marylou
                      i was going to ask you about if she was allowed to return to gym, but you answered that. So in three months she is allowed to do gym class? Wow, i wonder why each dr. is so different. As i said, the letter i just received said that nicole will be out of gym for the year. I guess i'll no more when we go next month. Nicole wasn't upset about the gym though, she doesn't like gym class anyway.
                      stay in touch
                      jennifer

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                      • #26
                        Hello

                        Yikes, sorry ladies, Yes, Jamie's still out of P.E. for the year, but he said she could run, jump and do anything. I didn't point blank ask him if she could rejoin P.E., and since the school's all set for her being out for the year, we'll hold off on it; Jamie doesn't mind, she's swimming every morning anyway. And we've been off hiking with her, she's doing it!?

                        She told me only yesterday, that about a month after surgery, she jumped from her bed over to be sister's, which is a couple feet away! I guess it's good I didn't know it back then, right!!??

                        The doctor says she's got enough screws and/or bolts in her protect her. I'm still on the fence if that's a good thing or not, I know short-term, of course, it is - - but long term . . . oh well . . ..

                        Keep posting ladies - Thanks so much!

                        Pat

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                        • #27
                          I'm not sure if Jamie will be able to return to gym after three months or not. I'm thinking my Jamie's restrictions will be longer than that of others, because they really didn't use pedicle screws because her pedicles were so small, so maybe he is being extra cautious? Sounds like we all have a lot of questions for our doctors when we next see them.

                          Pat, here's a question for you: did you happen to ask if/when Jamie can ride amusement park rides? The reason I ask is that my girls' band is going to an amusment park/water park in May and I'm concerned that the fusion may not even be complete by then. What's the sense in raising $60.00 in fundraisers and then not be able to go?

                          Talk to you later.

                          Mary Lou

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                          • #28
                            amusement rides!

                            Hi Mary Lou, Hmm, I did ask him back in October if we could plan a trip to DisneyWorld for June, and he said that would be absolutely fine - - but, Jamie's surgery was a month earlier than your Jamie's, and it's June not May. Pedicles screws . . . never heard that term before, that must be the big difference.

                            pat

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                            • #29
                              Hi Pat,

                              As I understand it, the pedicles are a place in the back where they place screws to anchor everything, thus the name "pedicle screws." Jamie's CAT scan and MRI showed her pedicles to be very narrow and they felt they wouldn't get a good result. Thanks, for you input--I'll ask the doctor on Feb. 3rd.

                              Anyway, Pat and Jennifer, have your girls returned to school full-time yet or do you know when they will be returning full-time? Our school contacted us yesterday and they wanted an update from the doctor to know how long Jamie will be part-time. After asking how she is doing I was asked if I felt she was ready for full days yet. I was told that most kids return full-time after six weeks. She suggested Jamie return on the 19th, so she would only go full-time for a few days and then have the weekend to rest. I requested we wait until the 21st because that's when they switch classes, so she returns full-time January 21st! This is all happening so fast!

                              Let me know what's up with your girls.



                              Mary Lou

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                              • #30
                                hi marylou
                                This monday that just passed (actually yesterday) was nicole's first full day! She did great with no complaints when she got home. The week before that she went half days for the week. when i had told the dr. when she would be returning to school for half days they asked "why half days". They also said most children go back at 6 weeks some even sooner. Nicole was 9 weeks when she went half days and now 10 weeks full days. I think they felt that she could have returned sooner, but i felt alittle more time wouldn't hurt and it was perfect to return after the break rather than before.
                                I am curious reading the post about the "pedicle screws". I have no clue what kind of screws they used for nicole. I know on the x-rays there were screws and rods, but have no clue what kind they are.
                                Your girls are doing great going back to school so quick!!
                                Jennifer

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