Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 I bet she would make a darling " Annie " if anyone ever puts it on in your area. We have a group here that does theater, with kids with all abilities. I was talking with Dylan's DO about all of the low tone issues, scoliosis, hip surgery etc. Of course he thinks cranial sacral can make a big difference. I do believe it has made a difference with Dylan's spine. We haven't had the hip problems, so can't really say there. It might be worth a try after she gets all done with this. I know it's out of your way, so you do have to weigh the pros and cons. Dylan is still wound up after seeing Dr. s today, but often times he will be a little worse before he is better, because we are messing with his nervous sx, which is already on overload. The neurologist had us check some blood work today, which made me feel better that he was at least looking to see if there was something underlying that triggered this. While Dylan has been in constant motion, either spinning, running in circles, dancing on his toes, or ticing for 2 days now, his balance has been terrible. Surprisingly he is jumping in place straight as can be and with such control, something he has never done more than 1 or 2 jumps. It reminds me of Judith Bluestone (Handle Institue saying when she was 10 and had horrible balance that she went around on a pogo stick. Anyways we'll see what tomorrow brings. Sounds like you are as ready for the surgery as you'll ever be and I agree waiting is a pain. We had to wait over an hour for Dylan's labs in a tiny waiting room filled with people, and Dylan walked back and forth, spun in circles, lost his balance into people the whole time. I was exhausted. Kim L Kim > We had our preop visit at Shriners St Louis today. Waited 4-ever to get no > new info -- but we did see the 3D CT films and had a new hip xray today. > Don't know why we needed the additional xray exposure today. I guess it's > just standard to get a current film before such a major undertaking. > > My only beef with Shriners is that you wait so long every time. We had a > 3:30 appt. Went directly to xray, took 2 films rather quickly, then waited > in the waiting room for an exam room, then waited in the exam room. Didn't > see the dr til after 5 -- I'm pretty sure it was nearly 5:30. Too long to > wait with little kids. > > Anyway -- got the details of the surgery -- which we already knew since I > asked so many questions at previous visits. The 3D pictures were pretty > cool even though I didn't really know the significance of what I was seeing. > > Kim had brought up the point about possibility of repeat surgeries in the > future. Well, since low muscle tone is what caused the problem, and we > can't correct that, it is likely to recur. I asked if you can redo the > procedure indefinitely and he said well not really and sort of shrugged like > we'd just have to wait and see how it all goes. Seems like there's no easy > answer. But you can bet I'll be looking for some -- even if they're not > easy. (Sound like a familiar strategy, Kim?) > > I am thinking that Aubrie needs to keep up her hip strengthening exercises > for life in order to do the best to maximize her muscle tone and strength. > Then I wonder about any nutritional supplements that could help with her > muscles and connective tissue (glucosamine etc) if they are appropriate for > kids. Then I think I'll look into a way to restrict her movement at night. > She falls asleep with her legs out in a frog fashion (like a really wide > cross-legged sit) and bent doubled over with her head in her toes. If she > had some kind of band that kept her legs together, she wouldn't be able to > do that in her sleep. During waking hours, she can learn to keep herself in > alignment, but there is no controlling it when she's sleeping. > > Another thought is that I really need to make the endo appt that has been on > my list since the conference last year. GHT might be important for her as > far as muscle mass and strength more than anything. > > So I am sharing in Kim's feeling of defeat. This seems like it will be a > lifelong issue and one that could have very serious consequences if we don't > keep it under control. There are more and more lifelong issues to keep on > top of. More than I can juggle in my lil' ol' brain not to mention in our > daily family life. We have done hip exercises once, handwriting lessons a > few times, and computer not at all this summer. Shame on me. Our summer is > more than half over with surgery being only a few weeks away. > > Good news was that he thought she might only need a cast for 6 weeks. We'll > see. > > Oh-- and DJ and I both gave a unit of blood today so that is all taken care > of. The staff at donor services was great so we actually had a fun time. > Aubrie sang " Tomorrow " for them all and was, as usual, the star of the day. > > Michele W > mom to Aubrie > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 I bet she would make a darling " Annie " if anyone ever puts it on in your area. We have a group here that does theater, with kids with all abilities. I was talking with Dylan's DO about all of the low tone issues, scoliosis, hip surgery etc. Of course he thinks cranial sacral can make a big difference. I do believe it has made a difference with Dylan's spine. We haven't had the hip problems, so can't really say there. It might be worth a try after she gets all done with this. I know it's out of your way, so you do have to weigh the pros and cons. Dylan is still wound up after seeing Dr. s today, but often times he will be a little worse before he is better, because we are messing with his nervous sx, which is already on overload. The neurologist had us check some blood work today, which made me feel better that he was at least looking to see if there was something underlying that triggered this. While Dylan has been in constant motion, either spinning, running in circles, dancing on his toes, or ticing for 2 days now, his balance has been terrible. Surprisingly he is jumping in place straight as can be and with such control, something he has never done more than 1 or 2 jumps. It reminds me of Judith Bluestone (Handle Institue saying when she was 10 and had horrible balance that she went around on a pogo stick. Anyways we'll see what tomorrow brings. Sounds like you are as ready for the surgery as you'll ever be and I agree waiting is a pain. We had to wait over an hour for Dylan's labs in a tiny waiting room filled with people, and Dylan walked back and forth, spun in circles, lost his balance into people the whole time. I was exhausted. Kim L Kim > We had our preop visit at Shriners St Louis today. Waited 4-ever to get no > new info -- but we did see the 3D CT films and had a new hip xray today. > Don't know why we needed the additional xray exposure today. I guess it's > just standard to get a current film before such a major undertaking. > > My only beef with Shriners is that you wait so long every time. We had a > 3:30 appt. Went directly to xray, took 2 films rather quickly, then waited > in the waiting room for an exam room, then waited in the exam room. Didn't > see the dr til after 5 -- I'm pretty sure it was nearly 5:30. Too long to > wait with little kids. > > Anyway -- got the details of the surgery -- which we already knew since I > asked so many questions at previous visits. The 3D pictures were pretty > cool even though I didn't really know the significance of what I was seeing. > > Kim had brought up the point about possibility of repeat surgeries in the > future. Well, since low muscle tone is what caused the problem, and we > can't correct that, it is likely to recur. I asked if you can redo the > procedure indefinitely and he said well not really and sort of shrugged like > we'd just have to wait and see how it all goes. Seems like there's no easy > answer. But you can bet I'll be looking for some -- even if they're not > easy. (Sound like a familiar strategy, Kim?) > > I am thinking that Aubrie needs to keep up her hip strengthening exercises > for life in order to do the best to maximize her muscle tone and strength. > Then I wonder about any nutritional supplements that could help with her > muscles and connective tissue (glucosamine etc) if they are appropriate for > kids. Then I think I'll look into a way to restrict her movement at night. > She falls asleep with her legs out in a frog fashion (like a really wide > cross-legged sit) and bent doubled over with her head in her toes. If she > had some kind of band that kept her legs together, she wouldn't be able to > do that in her sleep. During waking hours, she can learn to keep herself in > alignment, but there is no controlling it when she's sleeping. > > Another thought is that I really need to make the endo appt that has been on > my list since the conference last year. GHT might be important for her as > far as muscle mass and strength more than anything. > > So I am sharing in Kim's feeling of defeat. This seems like it will be a > lifelong issue and one that could have very serious consequences if we don't > keep it under control. There are more and more lifelong issues to keep on > top of. More than I can juggle in my lil' ol' brain not to mention in our > daily family life. We have done hip exercises once, handwriting lessons a > few times, and computer not at all this summer. Shame on me. Our summer is > more than half over with surgery being only a few weeks away. > > Good news was that he thought she might only need a cast for 6 weeks. We'll > see. > > Oh-- and DJ and I both gave a unit of blood today so that is all taken care > of. The staff at donor services was great so we actually had a fun time. > Aubrie sang " Tomorrow " for them all and was, as usual, the star of the day. > > Michele W > mom to Aubrie > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 I bet she would make a darling " Annie " if anyone ever puts it on in your area. We have a group here that does theater, with kids with all abilities. I was talking with Dylan's DO about all of the low tone issues, scoliosis, hip surgery etc. Of course he thinks cranial sacral can make a big difference. I do believe it has made a difference with Dylan's spine. We haven't had the hip problems, so can't really say there. It might be worth a try after she gets all done with this. I know it's out of your way, so you do have to weigh the pros and cons. Dylan is still wound up after seeing Dr. s today, but often times he will be a little worse before he is better, because we are messing with his nervous sx, which is already on overload. The neurologist had us check some blood work today, which made me feel better that he was at least looking to see if there was something underlying that triggered this. While Dylan has been in constant motion, either spinning, running in circles, dancing on his toes, or ticing for 2 days now, his balance has been terrible. Surprisingly he is jumping in place straight as can be and with such control, something he has never done more than 1 or 2 jumps. It reminds me of Judith Bluestone (Handle Institue saying when she was 10 and had horrible balance that she went around on a pogo stick. Anyways we'll see what tomorrow brings. Sounds like you are as ready for the surgery as you'll ever be and I agree waiting is a pain. We had to wait over an hour for Dylan's labs in a tiny waiting room filled with people, and Dylan walked back and forth, spun in circles, lost his balance into people the whole time. I was exhausted. Kim L Kim > We had our preop visit at Shriners St Louis today. Waited 4-ever to get no > new info -- but we did see the 3D CT films and had a new hip xray today. > Don't know why we needed the additional xray exposure today. I guess it's > just standard to get a current film before such a major undertaking. > > My only beef with Shriners is that you wait so long every time. We had a > 3:30 appt. Went directly to xray, took 2 films rather quickly, then waited > in the waiting room for an exam room, then waited in the exam room. Didn't > see the dr til after 5 -- I'm pretty sure it was nearly 5:30. Too long to > wait with little kids. > > Anyway -- got the details of the surgery -- which we already knew since I > asked so many questions at previous visits. The 3D pictures were pretty > cool even though I didn't really know the significance of what I was seeing. > > Kim had brought up the point about possibility of repeat surgeries in the > future. Well, since low muscle tone is what caused the problem, and we > can't correct that, it is likely to recur. I asked if you can redo the > procedure indefinitely and he said well not really and sort of shrugged like > we'd just have to wait and see how it all goes. Seems like there's no easy > answer. But you can bet I'll be looking for some -- even if they're not > easy. (Sound like a familiar strategy, Kim?) > > I am thinking that Aubrie needs to keep up her hip strengthening exercises > for life in order to do the best to maximize her muscle tone and strength. > Then I wonder about any nutritional supplements that could help with her > muscles and connective tissue (glucosamine etc) if they are appropriate for > kids. Then I think I'll look into a way to restrict her movement at night. > She falls asleep with her legs out in a frog fashion (like a really wide > cross-legged sit) and bent doubled over with her head in her toes. If she > had some kind of band that kept her legs together, she wouldn't be able to > do that in her sleep. During waking hours, she can learn to keep herself in > alignment, but there is no controlling it when she's sleeping. > > Another thought is that I really need to make the endo appt that has been on > my list since the conference last year. GHT might be important for her as > far as muscle mass and strength more than anything. > > So I am sharing in Kim's feeling of defeat. This seems like it will be a > lifelong issue and one that could have very serious consequences if we don't > keep it under control. There are more and more lifelong issues to keep on > top of. More than I can juggle in my lil' ol' brain not to mention in our > daily family life. We have done hip exercises once, handwriting lessons a > few times, and computer not at all this summer. Shame on me. Our summer is > more than half over with surgery being only a few weeks away. > > Good news was that he thought she might only need a cast for 6 weeks. We'll > see. > > Oh-- and DJ and I both gave a unit of blood today so that is all taken care > of. The staff at donor services was great so we actually had a fun time. > Aubrie sang " Tomorrow " for them all and was, as usual, the star of the day. > > Michele W > mom to Aubrie > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Kim -I wish I could find a convenient CST nearby that I trust. I'll keep working on it. Just hearing about the spinning, etc has me worn out too :-( Michele W Quote Link to comment Share on other sites More sharing options...
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