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worried mum from Australia

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  • #61
    Peggy I wasn't sure were to post this reply to you so I figured you'd find it here.
    How wonderful that she went out to do something. That will make it easier to do it again. It doesn't matter that she went straight back home. Maybe next time she could see a movie then go for something to eat. Is her problem that she doesn't want people to see her? I don't know much about braces and how noticable they are but if that is the problem would clothes shopping help? I guess it warm there at the moment (we are almost winter) otherwise she could get a new jacket.
    Anyway you must be so proud of her. I know I am. Congratulations, keep up the good work.
    Cheryl.

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    • #62
      With something like a bath, it would take some trial and error, to see if Amber could "manage" sitting for that long in a bath. What I mean by this is that she might find sitting uncomfortable or perhaps even impossible (for the moment), if it does work, she could probably only be in their for a short period of time (because sitting cross legged and/ or kneeling buts stress on the lower back/ espe towards tailbone area,). It would probably be more of a sit in the bath, because "soaking/lounging" would be a little back uncomfortable. I would say, give it a go, and just make sure that someone is watching/around when Amber is getting in and out of the bath (cause it can be quite slippery). Sorry if this is a little rambled (my brain thinks too fast for my hands sometime)

      Alison

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      • #63
        Don't worry sometimes my brain goes too fast for not only my hands but my mouth as well. I think we might give the bath a miss for awhile. Having a not great back myself, if we both get stuck it might be a bit embarassing to have to call for help. Everything else is going well though. I just thought I'd ask about the bath incase she wants to try.
        Cheryl.

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        • #64
          Hi Cheryl,
          We haven't figured out the shaving leg thing either yet. So I'm still helping. Even putting the leg on a stool in front of her is causing too much bending. Yes, I was happy about the movie. Today we are going out to the hospital where she had surgery to see my newborn nephew. A little at a time. She thinks she looks strange in the brace. Even though her clothes cover it she still feels big and bulky. Can't get her to go shopping yet. By next week she will have too because we have some graduation parties and some other things to attend. We went to the surgeon yesterday and he said everything looks great. She goes back in mid July for her 3 month checkup and he said he would cut down the time she has to wear the brace a day. So that was great news. Even though I'm sure in the fall she will still have to wear it for the full school day. But it is something to look forward too. Hold Amber is holding up ok. That light headedness is normal early on. Its easy to forget what a huge surgery they went through when they are recovering well. Takes a long time for your body to get back to normal. My daughter hits the 7 week mark tomorrow and I noticed a big change in the last week. Movement wise and confidence wise. Sounds like you guys are on the right track. Good Luck.

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          • #65
            I totally understand the leg shaving difficulties - I made my older sister do mine until about two months after surgery. It was probably easier for me though because it was cold after I had surgery, so I was wearing long pants and didn't really need to shave anyway. I only made her do it right before spring break.
            Charlotte

            48 degree upper curve
            L2 to T4
            Braced for 4 years
            Surgery 2/4/04

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            • #66
              I suppose we are lucky. It is winter here now and Amber will be wearing long things so "hairy scary' legs won't be too much of a problem. When Amber got out of the shower yesterday she looked at her back in the mirror and said to me; "Will my scar always look like this?" I said it will stay like that for a while but it should start to fade and maybe go white after awhile. (all my scars have)> She really suprised me with her reponse to that because she then said :" I like it like this it looks pretty cool, I hope it doesn't fade too quick."
              She is going really well and managing most things on her own. The stairs are my major concern incase she gets dizzy, but she will sometimes sneak down and up without me noticing. Has anyone had a fall? How? What happened? I think that's what I'm most worried about.
              Amber is not able to sit at a table for very long. She says it the position that she has to sit in. She wriggles around constantly after the first 5 minutes or so and is up 10 minutes later. She says that it doesn' exactly hurt but she is very uncomfortable. She is still unable to stand still for long either. I realise this is because of how low they went and her hips being straightened but how much longer until it becomes easier? Is there anything that we can do to help it along? We have no hope of getting her back to school if she sit for more than 15 minutes. I know it will come gradually but she is frustrated with herself and I don't know how to help her.
              I know things are getting better because she has started picking on her sisters and they are comfortable enough with her to be giving it back.
              She is not moving/rolling much during the night and I don't want to wake her up to tell her to move. Are the reasons for rolling to prevent bed sores and stiffness? Is it OK too leave her to herself? I'm up alot through the night and always look in on her anyway.
              Peggy I'm so glad things are going well. I hope each day keeps getting better.
              Cheryl.

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              • #67
                hey cheryl!! about tha falling down tha stairs, liek i said my surgery was oct 6 and well during march this yr i fell down tha stairs pretty hard when i was at my dads house! i counted them up and it was 8stairs i fell down!! lol but anyways...nuthin hurt my back its fine i went for a chek up today b.c last saturday i was puched into tha pool and hit tha bottom b.c it was only 4ft *im 5'7* and it jaulted my back and its been hurtin since then, so my mom made an "emergency" appt. *b.c i leave for Va on sun. for 2weeks* so they got me in and took 2 Xrays and my bak is actuallubetter than it was b4, im guessing its because its longer after my surgery so my back has had more time to straiten....but anyways....just keep an eye on her b.c since it isnt that long after her surgery it will most likely hurt her back if she shall fall b.c tha bones havnt quiet fused yet!! just be carefull...take care and good luk with tha recovery! much <3 ~*ellen*
                much <3
                ~*ellen*

                curves before and after surgery*oct6 03*
                before--51 and 21
                after--15 and 14

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                • #68
                  Before I start, I'm sorry if I use so many personal anaecdotes , but I find it is the easiest way to explain things

                  :As long as Amber is comfortable when she is asleep and doesn't wake up too sore it is Ok that she isn't moving much (rolling) during the night. In hospital they roll you a lot because you are not moving/immobile and to prevent pressure sores and blood clots (i think) forming. Once you are home, you are moving during the day.

                  :One of the biggest problems I had when I went back to school was sitting for long enough and comfortably (about two and a bit months post op) I would get bloody wriggley then would either kneel, stand up or sit on the floor (i was desperate for some relief). There are a couple of ways that we "solved" this. I'll try and explain it, but ask again if I don't explain it enough). This might take a visit to an office supply store, and some creative pillows. We found that by me sitting on an office chair that had a height adjustment lever and a seat depth adjustment (could angle the seat), it means that you can angle it to the most comfortable position (the most comfortable position for me is the most uncomfortable for everyone else). It may be worth for when Amber goes back to school checking out to see if this type of chair is in the school, and then Amber could "swap" with the teacher for the lesson. Another option to try could be to try a wedge cushion, that go to a foam supply store (or to the independent living centre in NSW), and they can create one to the angle that Amber finds most comfortable, and then she could sit on it. At this stage, I can't think of how you can help the uncomfortableness along, in my memory I think sitting got easier with time. It gradually got easier to sit for long enough/ long enough at school, and only occasionally did I have to "sit alternatively". As time goes on and sitting at school became easier, the only time it got really uncomfortable was during tests/ exams where you have to sit pretty still and in one position. At home and for tests and stuff like that I swap chairs with the teacher or bring to school my chair (when I was at a "normal" high school (i'm at a senior college now), there was a couple of chairs in the school, and the school made sure one was in a classroom for a test). Ask Amber what it is like to sit and to look at something laying on the table eg a book. (this was something that I had a problem with, it may have been because my fusion went a litle high_

                  Alison





                  We found my office chair in one of the chuck out piles in my Dad's office.

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                  • #69
                    The only reason for rolling is to prevent stiffness and bed sores, so as long as Amber isn't too stiff in the morning, she need not roll. I woke up several times a night for about three weeks post-op, so I kept a lumbar pillow nearby to change my position. This prevented stiffness.

                    I'm having final exams (90 min) right now and its really hard on my back! Like Alison said, all of the sitting with the neck bent in the same position makes it really sore. After an hour and a half like that, I'm practically shaking! I find that the best solution is to spend a lot of time walking or standing in between exams, or whever my back gets sore. Its hard to resist the urge to just sit down, but the walking is better for the back.
                    Charlotte

                    48 degree upper curve
                    L2 to T4
                    Braced for 4 years
                    Surgery 2/4/04

                    Comment


                    • #70
                      It's wonderful how all this help, support and advice comes back so quickly. We have an office chair at home. I'll ask what they have available at the school. The wedge cushion sounds like a great idea. We have a shop hear here that does rubber everything. I'll give them a ring and see if they can help. I don't think that Amber is ready to go back to school right now, but I don't think it will be too much longer. All of her teachers are pre-pared for her to have the rest of the term off, which is another 4 weeks. I am sure she will be there at least a few hours a day by then. How did everyone know when they were ready to go back to school? Amber's surgery was 3 weeks ago yesterday.
                      Cheryl.

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                      • #71
                        Even though my situation was slightly different (I had surgery at the end of the school year- one week of school left) and was more than ready to be back at school by the start of school the end of February. But I do know a couple of people who had fusions in the midle of the school year and these are some factors that they considered before they went back

                        :Am I able to go through the day with not needing to lie down much
                        :Can I sit reasonably comfortably (teachers are pretty understanding and mine never had a problem with me getting up and moving about during class when I became uncomfortable)
                        :How is my concentration
                        :How are my shoulders feeling, can I write comfortably
                        O I feel ready?
                        :How is my pain/pain relief (even though you get pretty sore sitting at school all day, if pain generally is getting better, mum sent me to school with some panadol- gave it to the school nurse and if I needed some I went to her)

                        My best guestimate would be once you reach week five post op, start to consider Amber going back half days (ie up until lunchtime, when you are fresher and less stiff in the morning). If they don't seem to work (or a bit early) have the teachers send home some schoolwork for Amber and then she can do it at home. She will definetly be ready by the start of term three.

                        I've got some more to add to this about school related stuff, which I will add on later.

                        Dapsbounce 8, have you considered leaning on a leaver arch file (big ring file) in class and using a sloped writing board for exams). I have found that this has greatly helped with neck stiffness and being more comfortable.

                        Alison

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                        • #72
                          Heres a bit more:

                          Amber will be the best judge of when she's ready (along with you :-) it will be when she is getting frustrated, edgy, restless, bored and wants to go back

                          I have a few questions before I add the next bit about school stuff. They'll help me make my suggestions a bit more specific to Amber

                          :Are any of Amber's siblings at the same school
                          :does the school have lockers
                          :do you take textbooks with you or do you use a class set
                          :doyou do physical education
                          :How many classes are there a day
                          :In subjects such as Art and Science do you sit on stools with/without a back to them
                          :What are the chairs like in school
                          Last edited by Alison; 06-03-2004, 04:17 AM.

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                          • #73
                            The school has started to send work home for Amber, at her request. She does need to lay down if she has done anything at all 'strenuous'. Her concentration seems OK. But she is really lacking the stamina and the ability to sit or stand for too long. Time will improve both of these problems. She does have a bit of shoulder pain but hasn't really complained of it being worse while she has been doing school work. I hadn't really thought of that being a concern, I'm glad you mentioned it. Her year advisor has said that when she is ready she can come back for 1 or 2 periods (40 minutes each) until she is ready for more. A few days a week, whatever she can cope with. They are being very understanding and helpful. Though Amber is really enjoying the break from school. I know she wants to go back.
                            Cheryl.

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                            • #74
                              1. Yes she has one sister at the same school. I will be driving them all to and from school.
                              2. Yes the teachers have agreed to provide a locker for Amber (even though they are supposed to be for yr 11 & 12 only)
                              3. This year she only has one text book but she has to carry it. Though her teacher may 'keep it' for her.
                              4. The teachers have 'decided' that Amber can sit out PE and sport. I think they are worried that she will get hurt and they will get the blame.
                              5. There are 8 periods a day, 40 minutes each plus lunch, recess and a short break.
                              6. Her roll call class, science, art and cooking classes all have backless stools. Amber says they are all wobbly or the top of the seat falls off. (Scary). The rest of the chairs are the ordinary plastic school chairs of the 'normal' school condition. The teachers chairs apparently aren't much better.
                              Cheryl.

                              Comment


                              • #75
                                This will come in bits and pieces

                                Seat falling off, now that's scary. I know that schools in Australia can get disability support for specialised equipment such as stools etc, or they often have money set aside in their budget or in the education department budget. It may be worth looking into, or getting in touch with the disabilities services commission in NSW. That the school may be able to get funding for the provision of a stool for Amber that has a back. She will find it difficult to sit on a stool without a back support because she will have to hold her back up,and there is nothing to support you. It makes the bottom of your back pretty sore (i found), there wasn't money in the school budget when I went back to school for the provision of a stool, and the way I got around this was I asked for a normal chair to be in the class and I sat on that (it was a bit difficult in subjects such as cooking and art, but we got around art by having a normal desk in there whilst I was in there and then someone took it out for me when I was not there.

                                I still wanted to be able to complete the objectives for sport as much as I could (in Western Australia some of the curriculum is outcomes based). When I was still in the no sport stage, the teachers came up with some written assisments that I could do, that would cover the syllabus objectives. I often still got dressed in my sport clothes, when I got sick of doing the written work in the library when everyone was doing sport, I either got a study period in the library and did homework, went for a walk around the school, school oval (I still wanted some physical exercise, whilst the game was going on ie footy/soccer/netball. Or participated on the sidelines in some way such as keeping score, helping to umpire etc.

                                I found that my shoulders started to feel sore when I had been writing for awhile in school (you write for a while ie copying stuff off the board and you sort of stay in one position and you have a tendancy to tense up)

                                When I went back I was still in the no carrying/little carrying stage. I either left my textbook at home, or the teacher kept it for me if I didn't use it very much at home for homework, or I shared someone's in their class. My sister carried my school bag for me which had my lunch in it, my calculator, a pen, pencil, eraser, ruler. For each of my subjects I used anexercise book and put my pens and stuff in my pocket or used a small pencil case. I would hold the exercise book close to my chest (i often had an exercise book and a textbook if it was a pretty small one, and was given permission to go to my locker either after every class or every two classes, I held it close to my chest so it would be weighted close to my chest). I know ways that other people have done it is to take a few sheets of paper to every class, but I would personally find it difficult to do this, because it would be hard to keep everything organised, or there would be sheets at home that you would need in class, that's why i found an exercise book easier.



                                Alison

                                Alison
                                Last edited by Alison; 06-03-2004, 05:16 AM.

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