Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Belinda: It was towards the last half of the year when she noted the corded muscle, so haven't really done a whole lot of work on it yet. She just does stretching exercises - I think mostly with a physio ball. We should get going really good on some work on that this year. We are still working on balance issues on uneven surfaces. And still won't go down stairs well unless she puts both feet on each stair tread. (Instead of one foot per tread.0 But if that is the only goal she never gets, I don't figure it's a huge thing. And I think it is visually related: I don't think she can see the depth of the drop going down the stairs. She can see the difference in color/shadow of the rise of the step when going up; but going down it just looks like a line and she can't judge it. Otherwise - besides the kyphosis and the tight muscle in her side/arm - she has done so well. She walks, jumps (trouble on one-footed left-side hops), runs, and even skips very well. Oh, yeah, she also uses her hands for balance to get up off the floor. (So do I, but mine is because of weight!) I think knows her left side is less organized/more effected and compensates when needed by walking on our right side, forcing her left side to be organized by proximity or by holding our hand. We are fortunate that our PT is so good, and she is free because of it occuring at the school. When was three, I asked if it would matter to find out if 's semi-circular canals were present, malformed, or normal. Her response was that, whatever an MRI showed, we still had to teach how to walk and find her center of balance; and the imaging would not really tell us what the specific effect might be for her. So, we didn't bother with the MRI and forged ahead figuring out what worked for . I hope you can get help finding a PT to work with you. It has done amazing things with 's balance. I'm looking forward to see the specifics of what the PT does for this corded muscle problem. Your GP should be able to refer and find you a PT to work with. Good luck, and I'll hope to be hearing that you are scheduled with one soon. Friends in CHARGE, Marilyn Ogan Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+) Wife of Rick oganm@... oganr@... to marilyn ogan Hi.the messages ive been getting from here have been giving me a bit of hope hehe.. yeah the doctor at the childrens hospital said there wouldtn be any point seeing a physio, and i cant go back there anyway coz im to old..i have an appointment with a local gp next week and was going to aslk her..i donno where to go to a physico i mean do u need o specialist physio or any one? im not sure..Hows going now? Belinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Because of the coloboma she probably cannot see the steps going down and that is why she is going one step at a time like that. She can learn through a mobility instructor to use her foot to feel her way and become more comfortable on steps. I'd rather see her go one step at a time than fall. Kay to marilyn ogan > > > Hi.the messages ive been getting from here have been giving me a bit of > hope > hehe.. yeah the doctor at the childrens hospital said there wouldtn be any > point seeing a physio, and i cant go back there anyway coz im to old..i > have > an appointment with a local gp next week and was going to aslk her..i > donno > where to go to a physico i mean do u need o specialist physio or any one? > im > not sure..Hows going now? > > Belinda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Kay: I'd rather see her do what she is comfortable with regarding the stairs. The PT keeps putting it in her goals for the IEP, but has been working on it now for several years (at least 4 that I can think of). I don't think it is realistic given the problems may be visually related, not a a balance issue. But like one social worker at Shriner's told me: " If it keeps the PT services involved, leave it in the IEP! " Friends in CHARGE, Marilyn Ogan Mom of Ken (15 yrs., ADD) and (12 yrs., CHARGE+) Wife of Rick oganm@... oganr@... Re: to marilyn ogan Because of the coloboma she probably cannot see the steps going down and that is why she is going one step at a time like that. She can learn through a mobility instructor to use her foot to feel her way and become more comfortable on steps. I'd rather see her go one step at a time than fall. Kay to marilyn ogan > > > Hi.the messages ive been getting from here have been giving me a bit of > hope > hehe.. yeah the doctor at the childrens hospital said there wouldtn be any > point seeing a physio, and i cant go back there anyway coz im to old..i > have > an appointment with a local gp next week and was going to aslk her..i > donno > where to go to a physico i mean do u need o specialist physio or any one? > im > not sure..Hows going now? > > Belinda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Now Marilyn I love that attitude! Kay with new computer and lost in cyberspace to marilyn ogan > > > > > > Hi.the messages ive been getting from here have been giving me a bit > of > > hope > > hehe.. yeah the doctor at the childrens hospital said there wouldtn be > any > > point seeing a physio, and i cant go back there anyway coz im to > old..i > > have > > an appointment with a local gp next week and was going to aslk her..i > > donno > > where to go to a physico i mean do u need o specialist physio or any > one? > > im > > not sure..Hows going now? > > > > Belinda > > > > > > Quote Link to comment Share on other sites More sharing options...
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