Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 We went to check in with the dr at Shriners yesterday because of new developments with Aubrie's hips. I'll start at the beginning briefly. About 2.5 yrs ago, Aubrie had bilateral hip reconstruction. Her hips were popping out of joint so the dr realigned her femurs and did bone grafting to build up her shallow hip sockets. That seemed to help for a short time. Then she started popping her hips again. She is so loose-jointed that her joints are extremely hyperflexible all over. Her hands are loose. Her shoulders lift out of the sockets when she laughs. But the only very troublesome thing has been her hips. About a year ago, she began falling when they would pop out as she walked or ran. Her connective tissue is so loose that her joints just can't stay stable. She was fitted for a ish Rite hip brace. She was instructed to wear it as needed - when doing things that might include hip problems. She wore it most waking hours - except lazy weekends and stuff. I don't know when we switched to wearing it all waking hours, but at some point we did. Then about 2 months ago, her hips began popping out and getting stuck in her sleep. So we began wearing the brace 24/7. For a girl who already has fatigue issues, this was not good. But whatever. When the brace was fit initially, we knew it did allow for a bit of hyperextension. We purposely did not restrict it more because it would interfere too much with mobility. This setting seemed to give just enough support with minimal interference. But it wasn't doing the job at night. So I developed a way to use Velcro straps to limit her more at night. That has provided the support we needed while we waited for an appt with the dr at Shriners. Our Shriner appt yesterday was long with lots of waiting! We got some good news and some not so good. The dr has no more medical interventions to help her hips. He said he has never seen a kid with such high flexibility. So she is a case of her own with nothing for us to look towards for examples of the future. He's seen tons of kids so I was surprised to hear that she is that unique. Our only remedy is to continue bracing 24/7 forever. " The shop " is where you go for orthotics and prostheses. The guy at the shop said he's got lots of contraptions that can restrict her more - but we don't want to do that until and if we have to. So we will stick with the brace we have for now because it does the job during the day while allowing mobility. At night, we'll stick with my Velcro remedy as long as it does the trick to keep her stable through the night. The good news was that her scoliosis measured less than 10 degrees! Under 10 is not clinically diagnosed as scoliosis - too insignificant. The file did reflect the 17 degree scoliosis curvature that we'd seen in the past. So that is amazing news. It could be that the old xray was incorrect, but her aide and I both think we've seen improvements in her posture. So I think we're doing something right. The PT said horse riding was a good thing for her hips. That wide sitting posture is actually good. She's been riding weekly for over a year now. Actually, it's less often when you take off for schedule conflicts and bad weather, but you get the idea. I think the combination of good PT at school and the horseback riding are doing as much good as possible for her back and her hips. The PT at Shriners was pleased to see that her hip and leg strength continue to improve noticeably. We sort of knew that there was nothing more to be done about her hips. But I had hoped they would not continue to present new problems. I worry about her future mobility. The dr seems to think that she should be able to maintain mobility with bracing. He was adamant that there is no surgical intervention - and that we should be extremely cautious if anyone tries to tell us otherwise. Her little body is so cute. I hate to see it always covered by the brace. And it does get in the way of cuddling. But - it is a handy handle when I pick her up, steady her on the horse, or whatever :-) We have lots of cute clothes we bought before the brace that she can't wear. It's a huge, obvious thing that makes her stand out as different. But at least she can walk, right? Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Michele- I am glad to hear of Aubrie's good news!! The not so good-I am glad to hear you keeping your sense of humor and finding the bright side. Your attitude is inspiring! Janay PS Maybe you can modify those new clothes into flowing skirts or riding pants? > > We went to check in with the dr at Shriners yesterday because of new > developments with Aubrie's hips. I'll start at the beginning briefly. > > > > About 2.5 yrs ago, Aubrie had bilateral hip reconstruction. Her hips were > popping out of joint so the dr realigned her femurs and did bone grafting to > build up her shallow hip sockets. That seemed to help for a short time. > Then she started popping her hips again. She is so loose-jointed that her > joints are extremely hyperflexible all over. Her hands are loose. Her > shoulders lift out of the sockets when she laughs. But the only very > troublesome thing has been her hips. > > > > About a year ago, she began falling when they would pop out as she walked or > ran. Her connective tissue is so loose that her joints just can't stay > stable. She was fitted for a ish Rite hip brace. She was instructed > to wear it as needed - when doing things that might include hip problems. > She wore it most waking hours - except lazy weekends and stuff. > > > > I don't know when we switched to wearing it all waking hours, but at some > point we did. Then about 2 months ago, her hips began popping out and > getting stuck in her sleep. So we began wearing the brace 24/7. For a girl > who already has fatigue issues, this was not good. But whatever. > > > > When the brace was fit initially, we knew it did allow for a bit of > hyperextension. We purposely did not restrict it more because it would > interfere too much with mobility. This setting seemed to give just enough > support with minimal interference. But it wasn't doing the job at night. > So I developed a way to use Velcro straps to limit her more at night. That > has provided the support we needed while we waited for an appt with the dr > at Shriners. > > > > Our Shriner appt yesterday was long with lots of waiting! We got some good > news and some not so good. > > > > The dr has no more medical interventions to help her hips. He said he has > never seen a kid with such high flexibility. So she is a case of her own > with nothing for us to look towards for examples of the future. He's seen > tons of kids so I was surprised to hear that she is that unique. Our only > remedy is to continue bracing 24/7 forever. " The shop " is where you go for > orthotics and prostheses. The guy at the shop said he's got lots of > contraptions that can restrict her more - but we don't want to do that until > and if we have to. So we will stick with the brace we have for now because > it does the job during the day while allowing mobility. At night, we'll > stick with my Velcro remedy as long as it does the trick to keep her stable > through the night. > > > > The good news was that her scoliosis measured less than 10 degrees! Under > 10 is not clinically diagnosed as scoliosis - too insignificant. The file > did reflect the 17 degree scoliosis curvature that we'd seen in the past. > So that is amazing news. It could be that the old xray was incorrect, but > her aide and I both think we've seen improvements in her posture. So I > think we're doing something right. > > > > The PT said horse riding was a good thing for her hips. That wide sitting > posture is actually good. She's been riding weekly for over a year now. > Actually, it's less often when you take off for schedule conflicts and bad > weather, but you get the idea. I think the combination of good PT at school > and the horseback riding are doing as much good as possible for her back and > her hips. The PT at Shriners was pleased to see that her hip and leg > strength continue to improve noticeably. > > > > We sort of knew that there was nothing more to be done about her hips. But > I had hoped they would not continue to present new problems. I worry about > her future mobility. The dr seems to think that she should be able to > maintain mobility with bracing. He was adamant that there is no surgical > intervention - and that we should be extremely cautious if anyone tries to > tell us otherwise. > > > > Her little body is so cute. I hate to see it always covered by the brace. > And it does get in the way of cuddling. But - it is a handy handle when I > pick her up, steady her on the horse, or whatever :-) We have lots of > cute clothes we bought before the brace that she can't wear. It's a huge, > obvious thing that makes her stand out as different. But at least she can > walk, right? > > > > Michele W > Aubrie's mom 9 yrs > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 wow good things r doing k > > Michele- > > I am glad to hear of Aubrie's good news!! The not so good-I am glad > to hear you keeping your sense of humor and finding the bright side. > Your attitude is inspiring! > > Janay > > PS Maybe you can modify those new clothes into flowing skirts or > riding pants? > > > > > > We went to check in with the dr at Shriners yesterday because of > new > > developments with Aubrie's hips. I'll start at the beginning > briefly. > > > > > > > > About 2.5 yrs ago, Aubrie had bilateral hip reconstruction. Her > hips were > > popping out of joint so the dr realigned her femurs and did bone > grafting to > > build up her shallow hip sockets. That seemed to help for a short > time. > > Then she started popping her hips again. She is so loose-jointed > that her > > joints are extremely hyperflexible all over. Her hands are > loose. Her > > shoulders lift out of the sockets when she laughs. But the only > very > > troublesome thing has been her hips. > > > > > > > > About a year ago, she began falling when they would pop out as she > walked or > > ran. Her connective tissue is so loose that her joints just can't > stay > > stable. She was fitted for a ish Rite hip brace. She was > instructed > > to wear it as needed - when doing things that might include hip > problems. > > She wore it most waking hours - except lazy weekends and stuff. > > > > > > > > I don't know when we switched to wearing it all waking hours, but > at some > > point we did. Then about 2 months ago, her hips began popping out > and > > getting stuck in her sleep. So we began wearing the brace 24/7. > For a girl > > who already has fatigue issues, this was not good. But whatever. > > > > > > > > When the brace was fit initially, we knew it did allow for a bit of > > hyperextension. We purposely did not restrict it more because it > would > > interfere too much with mobility. This setting seemed to give > just enough > > support with minimal interference. But it wasn't doing the job at > night. > > So I developed a way to use Velcro straps to limit her more at > night. That > > has provided the support we needed while we waited for an appt > with the dr > > at Shriners. > > > > > > > > Our Shriner appt yesterday was long with lots of waiting! We got > some good > > news and some not so good. > > > > > > > > The dr has no more medical interventions to help her hips. He > said he has > > never seen a kid with such high flexibility. So she is a case of > her own > > with nothing for us to look towards for examples of the future. > He's seen > > tons of kids so I was surprised to hear that she is that unique. > Our only > > remedy is to continue bracing 24/7 forever. " The shop " is where > you go for > > orthotics and prostheses. The guy at the shop said he's got lots > of > > contraptions that can restrict her more - but we don't want to do > that until > > and if we have to. So we will stick with the brace we have for > now because > > it does the job during the day while allowing mobility. At night, > we'll > > stick with my Velcro remedy as long as it does the trick to keep > her stable > > through the night. > > > > > > > > The good news was that her scoliosis measured less than 10 > degrees! Under > > 10 is not clinically diagnosed as scoliosis - too insignificant. > The file > > did reflect the 17 degree scoliosis curvature that we'd seen in > the past. > > So that is amazing news. It could be that the old xray was > incorrect, but > > her aide and I both think we've seen improvements in her posture. > So I > > think we're doing something right. > > > > > > > > The PT said horse riding was a good thing for her hips. That wide > sitting > > posture is actually good. She's been riding weekly for over a > year now. > > Actually, it's less often when you take off for schedule conflicts > and bad > > weather, but you get the idea. I think the combination of good PT > at school > > and the horseback riding are doing as much good as possible for > her back and > > her hips. The PT at Shriners was pleased to see that her hip and > leg > > strength continue to improve noticeably. > > > > > > > > We sort of knew that there was nothing more to be done about her > hips. But > > I had hoped they would not continue to present new problems. I > worry about > > her future mobility. The dr seems to think that she should be > able to > > maintain mobility with bracing. He was adamant that there is no > surgical > > intervention - and that we should be extremely cautious if anyone > tries to > > tell us otherwise. > > > > > > > > Her little body is so cute. I hate to see it always covered by > the brace. > > And it does get in the way of cuddling. But - it is a handy > handle when I > > pick her up, steady her on the horse, or whatever :-) We have > lots of > > cute clothes we bought before the brace that she can't wear. It's > a huge, > > obvious thing that makes her stand out as different. But at least > she can > > walk, right? > > > > > > > > Michele W > > Aubrie's mom 9 yrs > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Oh Michele, I hear pain in your voice. I am so sorry. I hate that we are so sad for our children. I honestly don't know what to say because I've been at the end of my " hope rope " and I sense that I could be there again. I haven't quite learned how to move past those types of situations without sadness, so I feel as if I have no words of wisdom. So, instead I'm sending hugs and prayer. , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 10 years! The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Janay- I had to laugh when you mentioned my sense of humor. I felt like I had none yesterday! We had a night of no sleep here - many little interferences all at once on top of a premenopausal insomnia on my part - argh. Yesterday, I remembered how I felt for the first year or 2 of Aubrie's life. And how many of you feel every day. I have no idea how a person can get through life in such a state. I'm thankful for a good night's rest and feeling like myself again today. And I'm thinking hard and heavy about all the folks living in a constant state of serious sleep-deprivation combined with huge stress. Somehow, we need to get the world-at-large to understand that. In fact, I'm thinking it's the makings the next Mom on a Mission column! Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of jkhayes95 Sent: Thursday, March 22, 2007 11:12 PM To: CHARGE Subject: Re: Aubrie's hips Michele- I am glad to hear of Aubrie's good news!! The not so good-I am glad to hear you keeping your sense of humor and finding the bright side. Your attitude is inspiring! Janay PS Maybe you can modify those new clothes into flowing skirts or riding pants? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 - That's just it. There are times when the pain rises to the surface. Other times, it stays quietly down in the deeps. I have mine well-trained to stay low for the most part. It's when I am tired or caught off-guard by some event (which can be small or large) that it takes the opportunity to come up for air. Thanks for the hugs. Michele _____ From: CHARGE [mailto:CHARGE ] On Behalf Of and Melton Sent: Friday, March 23, 2007 12:30 AM To: CHARGE Subject: Re: Aubrie's hips Oh Michele, I hear pain in your voice. I am so sorry. I hate that we are so sad for our children. I honestly don't know what to say because I've been at the end of my " hope rope " and I sense that I could be there again. I haven't quite learned how to move past those types of situations without sadness, so I feel as if I have no words of wisdom. So, instead I'm sending hugs and prayer. , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 10 years! The mention of my child's name might make me cry. Not mentioning my child's name will break my heart. Unknown Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Sorry about the bad new but happy about the good. You know you are doing all you can and what is best for Aubrie, she is one great little girl. Hugs, Crystal and Eva > > We went to check in with the dr at Shriners yesterday because of new > developments with Aubrie's hips. I'll start at the beginning briefly. > > > > About 2.5 yrs ago, Aubrie had bilateral hip reconstruction. Her hips were > popping out of joint so the dr realigned her femurs and did bone grafting to > build up her shallow hip sockets. That seemed to help for a short time. > Then she started popping her hips again. She is so loose-jointed that her > joints are extremely hyperflexible all over. Her hands are loose. Her > shoulders lift out of the sockets when she laughs. But the only very > troublesome thing has been her hips. > > > > About a year ago, she began falling when they would pop out as she walked or > ran. Her connective tissue is so loose that her joints just can't stay > stable. She was fitted for a ish Rite hip brace. She was instructed > to wear it as needed - when doing things that might include hip problems. > She wore it most waking hours - except lazy weekends and stuff. > > > > I don't know when we switched to wearing it all waking hours, but at some > point we did. Then about 2 months ago, her hips began popping out and > getting stuck in her sleep. So we began wearing the brace 24/7. For a girl > who already has fatigue issues, this was not good. But whatever. > > > > When the brace was fit initially, we knew it did allow for a bit of > hyperextension. We purposely did not restrict it more because it would > interfere too much with mobility. This setting seemed to give just enough > support with minimal interference. But it wasn't doing the job at night. > So I developed a way to use Velcro straps to limit her more at night. That > has provided the support we needed while we waited for an appt with the dr > at Shriners. > > > > Our Shriner appt yesterday was long with lots of waiting! We got some good > news and some not so good. > > > > The dr has no more medical interventions to help her hips. He said he has > never seen a kid with such high flexibility. So she is a case of her own > with nothing for us to look towards for examples of the future. He's seen > tons of kids so I was surprised to hear that she is that unique. Our only > remedy is to continue bracing 24/7 forever. " The shop " is where you go for > orthotics and prostheses. The guy at the shop said he's got lots of > contraptions that can restrict her more - but we don't want to do that until > and if we have to. So we will stick with the brace we have for now because > it does the job during the day while allowing mobility. At night, we'll > stick with my Velcro remedy as long as it does the trick to keep her stable > through the night. > > > > The good news was that her scoliosis measured less than 10 degrees! Under > 10 is not clinically diagnosed as scoliosis - too insignificant. The file > did reflect the 17 degree scoliosis curvature that we'd seen in the past. > So that is amazing news. It could be that the old xray was incorrect, but > her aide and I both think we've seen improvements in her posture. So I > think we're doing something right. > > > > The PT said horse riding was a good thing for her hips. That wide sitting > posture is actually good. She's been riding weekly for over a year now. > Actually, it's less often when you take off for schedule conflicts and bad > weather, but you get the idea. I think the combination of good PT at school > and the horseback riding are doing as much good as possible for her back and > her hips. The PT at Shriners was pleased to see that her hip and leg > strength continue to improve noticeably. > > > > We sort of knew that there was nothing more to be done about her hips. But > I had hoped they would not continue to present new problems. I worry about > her future mobility. The dr seems to think that she should be able to > maintain mobility with bracing. He was adamant that there is no surgical > intervention - and that we should be extremely cautious if anyone tries to > tell us otherwise. > > > > Her little body is so cute. I hate to see it always covered by the brace. > And it does get in the way of cuddling. But - it is a handy handle when I > pick her up, steady her on the horse, or whatever :-) We have lots of > cute clothes we bought before the brace that she can't wear. It's a huge, > obvious thing that makes her stand out as different. But at least she can > walk, right? > > > > Michele W > Aubrie's mom 9 yrs > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Hi , I was sorry to read about Aubrie's hip problems. I wanted to write a cheery upbeat letter to you but I am dealing with some issues of my own with Amita although not so serious as Aubrie's and I am depressed and tired. Sometimes it is better to let it go and have good cry. I wish I could come there and we could have a good cry session. THEN, as I always say When the going gets tougher, the tough grit their teeth and get going again. Deepta > > We went to check in with the dr at Shriners yesterday because of new > developments with Aubrie's hips. I'll start at the beginning briefly. > > > > About 2.5 yrs ago, Aubrie had bilateral hip reconstruction. Her hips were > popping out of joint so the dr realigned her femurs and did bone grafting to > build up her shallow hip sockets. That seemed to help for a short time. > Then she started popping her hips again. She is so loose-jointed that her > joints are extremely hyperflexible all over. Her hands are loose. Her > shoulders lift out of the sockets when she laughs. But the only very > troublesome thing has been her hips. > > > > About a year ago, she began falling when they would pop out as she walked or > ran. Her connective tissue is so loose that her joints just can't stay > stable. She was fitted for a ish Rite hip brace. She was instructed > to wear it as needed - when doing things that might include hip problems. > She wore it most waking hours - except lazy weekends and stuff. > > > > I don't know when we switched to wearing it all waking hours, but at some > point we did. Then about 2 months ago, her hips began popping out and > getting stuck in her sleep. So we began wearing the brace 24/7. For a girl > who already has fatigue issues, this was not good. But whatever. > > > > When the brace was fit initially, we knew it did allow for a bit of > hyperextension. We purposely did not restrict it more because it would > interfere too much with mobility. This setting seemed to give just enough > support with minimal interference. But it wasn't doing the job at night. > So I developed a way to use Velcro straps to limit her more at night. That > has provided the support we needed while we waited for an appt with the dr > at Shriners. > > > > Our Shriner appt yesterday was long with lots of waiting! We got some good > news and some not so good. > > > > The dr has no more medical interventions to help her hips. He said he has > never seen a kid with such high flexibility. So she is a case of her own > with nothing for us to look towards for examples of the future. He's seen > tons of kids so I was surprised to hear that she is that unique. Our only > remedy is to continue bracing 24/7 forever. " The shop " is where you go for > orthotics and prostheses. The guy at the shop said he's got lots of > contraptions that can restrict her more - but we don't want to do that until > and if we have to. So we will stick with the brace we have for now because > it does the job during the day while allowing mobility. At night, we'll > stick with my Velcro remedy as long as it does the trick to keep her stable > through the night. > > > > The good news was that her scoliosis measured less than 10 degrees! Under > 10 is not clinically diagnosed as scoliosis - too insignificant. The file > did reflect the 17 degree scoliosis curvature that we'd seen in the past. > So that is amazing news. It could be that the old xray was incorrect, but > her aide and I both think we've seen improvements in her posture. So I > think we're doing something right. > > > > The PT said horse riding was a good thing for her hips. That wide sitting > posture is actually good. She's been riding weekly for over a year now. > Actually, it's less often when you take off for schedule conflicts and bad > weather, but you get the idea. I think the combination of good PT at school > and the horseback riding are doing as much good as possible for her back and > her hips. The PT at Shriners was pleased to see that her hip and leg > strength continue to improve noticeably. > > > > We sort of knew that there was nothing more to be done about her hips. But > I had hoped they would not continue to present new problems. I worry about > her future mobility. The dr seems to think that she should be able to > maintain mobility with bracing. He was adamant that there is no surgical > intervention - and that we should be extremely cautious if anyone tries to > tell us otherwise. > > > > Her little body is so cute. I hate to see it always covered by the brace. > And it does get in the way of cuddling. But - it is a handy handle when I > pick her up, steady her on the horse, or whatever :-) We have lots of > cute clothes we bought before the brace that she can't wear. It's a huge, > obvious thing that makes her stand out as different. But at least she can > walk, right? > > > > Michele W > Aubrie's mom 9 yrs > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Deepta said " When the going gets tougher, the tough grit their teeth and get going again. " Perfect!!! Thanks for sharing that! I hope your difficult time passes soon. Hugs - Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Oh . Wow. And worry about her future? That's what mothers do best but I have a sneaky suspension she'll be as empowered and independent as Patty. Keep hope within you. You'll see the miracles. Give her a hug from me. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 michele, sorry to hear about Aubries hip issues. hope she is ok with it. i know tim gets so tired of wearing his orthotics. but, luckily, we can give him a break although we probably shouldn't as much as we do! Aubrie's hips We went to check in with the dr at Shriners yesterday because of new developments with Aubrie's hips. I'll start at the beginning briefly. About 2.5 yrs ago, Aubrie had bilateral hip reconstruction. Her hips were popping out of joint so the dr realigned her femurs and did bone grafting to build up her shallow hip sockets. That seemed to help for a short time. Then she started popping her hips again. She is so loose-jointed that her joints are extremely hyperflexible all over. Her hands are loose. Her shoulders lift out of the sockets when she laughs. But the only very troublesome thing has been her hips. About a year ago, she began falling when they would pop out as she walked or ran. Her connective tissue is so loose that her joints just can't stay stable. She was fitted for a ish Rite hip brace. She was instructed to wear it as needed - when doing things that might include hip problems. She wore it most waking hours - except lazy weekends and stuff. I don't know when we switched to wearing it all waking hours, but at some point we did. Then about 2 months ago, her hips began popping out and getting stuck in her sleep. So we began wearing the brace 24/7. For a girl who already has fatigue issues, this was not good. But whatever. When the brace was fit initially, we knew it did allow for a bit of hyperextension. We purposely did not restrict it more because it would interfere too much with mobility. This setting seemed to give just enough support with minimal interference. But it wasn't doing the job at night. So I developed a way to use Velcro straps to limit her more at night. That has provided the support we needed while we waited for an appt with the dr at Shriners. Our Shriner appt yesterday was long with lots of waiting! We got some good news and some not so good. The dr has no more medical interventions to help her hips. He said he has never seen a kid with such high flexibility. So she is a case of her own with nothing for us to look towards for examples of the future. He's seen tons of kids so I was surprised to hear that she is that unique. Our only remedy is to continue bracing 24/7 forever. " The shop " is where you go for orthotics and prostheses. The guy at the shop said he's got lots of contraptions that can restrict her more - but we don't want to do that until and if we have to. So we will stick with the brace we have for now because it does the job during the day while allowing mobility. At night, we'll stick with my Velcro remedy as long as it does the trick to keep her stable through the night. The good news was that her scoliosis measured less than 10 degrees! Under 10 is not clinically diagnosed as scoliosis - too insignificant. The file did reflect the 17 degree scoliosis curvature that we'd seen in the past. So that is amazing news. It could be that the old xray was incorrect, but her aide and I both think we've seen improvements in her posture. So I think we're doing something right. The PT said horse riding was a good thing for her hips. That wide sitting posture is actually good. She's been riding weekly for over a year now. Actually, it's less often when you take off for schedule conflicts and bad weather, but you get the idea. I think the combination of good PT at school and the horseback riding are doing as much good as possible for her back and her hips. The PT at Shriners was pleased to see that her hip and leg strength continue to improve noticeably. We sort of knew that there was nothing more to be done about her hips. But I had hoped they would not continue to present new problems. I worry about her future mobility. The dr seems to think that she should be able to maintain mobility with bracing. He was adamant that there is no surgical intervention - and that we should be extremely cautious if anyone tries to tell us otherwise. Her little body is so cute. I hate to see it always covered by the brace. And it does get in the way of cuddling. But - it is a handy handle when I pick her up, steady her on the horse, or whatever :-) We have lots of cute clothes we bought before the brace that she can't wear. It's a huge, obvious thing that makes her stand out as different. But at least she can walk, right? Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Michele, Sorry I'm so late in replying to this - I wouldn't give up hope - just because they can't find anything else to do now doesn't mean something else won't come along in the future. Hugs to you both, Kennedy's Mom http://www.chargesyndrome.info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 UGH< MIchele, I am sorry to hear of the hips. I am sending your email to Ann here-is that ok? I think she would want to know and may want, if I know her!, to see Aubrie when we are all in CA. YOu were so cute about the handle!! xo pam Aubrie's hips We went to check in with the dr at Shriners yesterday because of new developments with Aubrie's hips. I'll start at the beginning briefly. About 2.5 yrs ago, Aubrie had bilateral hip reconstruction. Her hips were popping out of joint so the dr realigned her femurs and did bone grafting to build up her shallow hip sockets. That seemed to help for a short time. Then she started popping her hips again. She is so loose-jointed that her joints are extremely hyperflexible all over. Her hands are loose. Her shoulders lift out of the sockets when she laughs. But the only very troublesome thing has been her hips. About a year ago, she began falling when they would pop out as she walked or ran. Her connective tissue is so loose that her joints just can't stay stable. She was fitted for a ish Rite hip brace. She was instructed to wear it as needed - when doing things that might include hip problems. She wore it most waking hours - except lazy weekends and stuff. I don't know when we switched to wearing it all waking hours, but at some point we did. Then about 2 months ago, her hips began popping out and getting stuck in her sleep. So we began wearing the brace 24/7. For a girl who already has fatigue issues, this was not good. But whatever. When the brace was fit initially, we knew it did allow for a bit of hyperextension. We purposely did not restrict it more because it would interfere too much with mobility. This setting seemed to give just enough support with minimal interference. But it wasn't doing the job at night. So I developed a way to use Velcro straps to limit her more at night. That has provided the support we needed while we waited for an appt with the dr at Shriners. Our Shriner appt yesterday was long with lots of waiting! We got some good news and some not so good. The dr has no more medical interventions to help her hips. He said he has never seen a kid with such high flexibility. So she is a case of her own with nothing for us to look towards for examples of the future. He's seen tons of kids so I was surprised to hear that she is that unique. Our only remedy is to continue bracing 24/7 forever. " The shop " is where you go for orthotics and prostheses. The guy at the shop said he's got lots of contraptions that can restrict her more - but we don't want to do that until and if we have to. So we will stick with the brace we have for now because it does the job during the day while allowing mobility. At night, we'll stick with my Velcro remedy as long as it does the trick to keep her stable through the night. The good news was that her scoliosis measured less than 10 degrees! Under 10 is not clinically diagnosed as scoliosis - too insignificant. The file did reflect the 17 degree scoliosis curvature that we'd seen in the past. So that is amazing news. It could be that the old xray was incorrect, but her aide and I both think we've seen improvements in her posture. So I think we're doing something right. The PT said horse riding was a good thing for her hips. That wide sitting posture is actually good. She's been riding weekly for over a year now. Actually, it's less often when you take off for schedule conflicts and bad weather, but you get the idea. I think the combination of good PT at school and the horseback riding are doing as much good as possible for her back and her hips. The PT at Shriners was pleased to see that her hip and leg strength continue to improve noticeably. We sort of knew that there was nothing more to be done about her hips. But I had hoped they would not continue to present new problems. I worry about her future mobility. The dr seems to think that she should be able to maintain mobility with bracing. He was adamant that there is no surgical intervention - and that we should be extremely cautious if anyone tries to tell us otherwise. Her little body is so cute. I hate to see it always covered by the brace. And it does get in the way of cuddling. But - it is a handy handle when I pick her up, steady her on the horse, or whatever :-) We have lots of cute clothes we bought before the brace that she can't wear. It's a huge, obvious thing that makes her stand out as different. But at least she can walk, right? Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 - Thankfully, Aubrie never complains. Never. She just goes along with a smile on her face and a skip in her step. She's truly gotten the skip thing down and now she skips constantly :-) I feel so bad when I have a negative outlook - because it's all totally fine with her. Why should it bother me? Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of PATRICK HALLORAN Sent: Saturday, March 24, 2007 11:59 AM To: CHARGE Subject: Re: Aubrie's hips michele, sorry to hear about Aubries hip issues. hope she is ok with it. i know tim gets so tired of wearing his orthotics. but, luckily, we can give him a break although we probably shouldn't as much as we do! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 Whenever I get feeling overwhelmed with the " what if's " and " how's this gonna work out? " , I just look at Kennedy with her happy little ways, not knowing any different and I am thankful for every day of her innocence. > > - > > Thankfully, Aubrie never complains. Never. She just goes along with a > smile on her face and a skip in her step. She's truly gotten the skip > thing > down and now she skips constantly :-) I feel so bad when I have a negative > outlook - because it's all totally fine with her. Why should it bother me? > > Michele W > > _____ > > From: CHARGE <CHARGE%40yahoogroups.com> [mailto: > CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of > PATRICK HALLORAN > Sent: Saturday, March 24, 2007 11:59 AM > To: CHARGE <CHARGE%40yahoogroups.com> > Subject: Re: Aubrie's hips > > michele, sorry to hear about Aubries hip issues. hope she is ok with it. i > know tim gets so tired of wearing his orthotics. but, luckily, we can give > him a break although we probably shouldn't as much as we do! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 Pam- Thanks for sending the info on the Ann. I was going to ask you to! Michele W _____ From: CHARGE [mailto:CHARGE ] On Behalf Of pamela.ryan@... Sent: Saturday, March 24, 2007 6:24 PM To: CHARGE Subject: RE: Aubrie's hips UGH< MIchele, I am sorry to hear of the hips. I am sending your email to Ann here-is that ok? I think she would want to know and may want, if I know her!, to see Aubrie when we are all in CA. YOu were so cute about the handle!! xo pam Quote Link to comment Share on other sites More sharing options...
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