Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 Pat- I can't recall anything that was detrimental to Aubrie. I do recall that she cried during PT as a small infant. It really bothered me but I was there to see that the PT wasn't doing anything offensive or upsetting. She would hold her on her chest and was very kind and nurturing. Aubrie simply didn't like being on her tummy and let that be known. It was more like a complaining cry that a torturous cry. I'll never be sure if it was the right thing to do, but I think it made sense that she would complain and, yet, needed to do the task. There are times now when she doesn't particularly like what she has to do, but she does it. Looking back, perhaps I could have suggested that the PT coach me as I held her on my chest to encourage that tummy time. It was very difficult for me at the time to decide to let things proceed or not. We usually went on until or unless the cry had that different, more urgent quality. If we thought she was just complaining, we continued with care. Just a heads up in case Aidan would respond in the same way. It can be very unsettling for Mom and may be something you want to be prepared to consider. Of course, I hope he'll have nothing but positive experiences. But then, isn't the goal to gently push them past their own limits? Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 Hi Michele! Thank you for your post So far Aidan is taking PT, as everything he's undergoing, surprisingly well! Of course, as a good CHARGEr, he limits his time on his belly to the minimum (I think rolling from belly to back was the first thing he ever learned!) but no further hassles apart from that. He tolerates really well all the pulling and dragging of doctors and nurses. My post asking also for " not to do " -s in OT meant to give some enlightment to the therapist that is treating Aidan at the moment, 'cause she hasn't worked with any CHARGEr yet and she was wondering if there was ever any contraindication. Let me know if you can think of anything! Thank you!! Pat, mum to Aidan (9.5 months old, 2.5 months prem) -- IRELAND > > Pat- > I can't recall anything that was detrimental to Aubrie. I do recall that > she cried during PT as a small infant. It really bothered me but I was > there to see that the PT wasn't doing anything offensive or upsetting. She > would hold her on her chest and was very kind and nurturing. Aubrie simply > didn't like being on her tummy and let that be known. It was more like a > complaining cry that a torturous cry. I'll never be sure if it was the > right thing to do, but I think it made sense that she would complain and, > yet, needed to do the task. There are times now when she doesn't > particularly like what she has to do, but she does it. Looking back, > perhaps I could have suggested that the PT coach me as I held her on my > chest to encourage that tummy time. > > It was very difficult for me at the time to decide to let things proceed or > not. We usually went on until or unless the cry had that different, more > urgent quality. If we thought she was just complaining, we continued with > care. > > Just a heads up in case Aidan would respond in the same way. It can be very > unsettling for Mom and may be something you want to be prepared to consider. > Of course, I hope he'll have nothing but positive experiences. But then, > isn't the goal to gently push them past their own limits? > > Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 I can't think of anything that was a problem. I can think of things I'd wished we could have avoided -- but there was no way. Aubrie sat in a wide triangular position and then scooted on her bottom with her legs like that -- sort of " criss cross applesauce " but with the bottom of her feet together rather than cross-legged. She also rocked herself to sleep in that position and would end up asleep with her legs like that and her face down forward into her feet. We'd get up in the night to go " unfold the baby " . By age 6 or so, she needed bilateral hip reconstruction. I'm sure that mode of mobility and the constant positioning of her hips like that led to the problem. But there really was no way to eliminate it. The PT and I talked about how troubling it was to have her like that in the night, but we'd have had to strap her to the bed to prevent it. And that was her only way to get around so we would've taken away her mobility if we'd have stopped it. On the other hand, I wonder if we should have used a standing frame to strengthen her hips and provide more time in appropriate weight bearing positions. At the time, her PT didn't think she needed one cuz she did pull up and walk around furniture etc. Again, time in a standing frame would have been limiting in some ways so we chose not to do it. I don't know if it would've had an impact on her hips, but I'll always wonder. So... as you get to the standing and mobility phase, watch the hips. Very few kids with CHARGE have had the hip problems that Aubrie did, but it is possible. I can't think of anything you can do that will hurt Aidan -- that is contraindicated by CHARGE. Michele Re: PT + OT Hi Michele! Thank you for your post So far Aidan is taking PT, as everything he's undergoing, surprisingly well! Of course, as a good CHARGEr, he limits his time on his belly to the minimum (I think rolling from belly to back was the first thing he ever learned!) but no further hassles apart from that. He tolerates really well all the pulling and dragging of doctors and nurses. My post asking also for " not to do " -s in OT meant to give some enlightment to the therapist that is treating Aidan at the moment, 'cause she hasn't worked with any CHARGEr yet and she was wondering if there was ever any contraindication. Let me know if you can think of anything! Thank you!! Pat, mum to Aidan (9.5 months old, 2.5 months prem) -- IRELAND > > Pat- > I can't recall anything that was detrimental to Aubrie. I do recall that > she cried during PT as a small infant. It really bothered me but I was > there to see that the PT wasn't doing anything offensive or upsetting. She > would hold her on her chest and was very kind and nurturing. Aubrie simply > didn't like being on her tummy and let that be known. It was more like a > complaining cry that a torturous cry. I'll never be sure if it was the > right thing to do, but I think it made sense that she would complain and, > yet, needed to do the task. There are times now when she doesn't > particularly like what she has to do, but she does it. Looking back, > perhaps I could have suggested that the PT coach me as I held her on my > chest to encourage that tummy time. > > It was very difficult for me at the time to decide to let things proceed or > not. We usually went on until or unless the cry had that different, more > urgent quality. If we thought she was just complaining, we continued with > care. > > Just a heads up in case Aidan would respond in the same way. It can be very > unsettling for Mom and may be something you want to be prepared to consider. > Of course, I hope he'll have nothing but positive experiences. But then, > isn't the goal to gently push them past their own limits? > > Michele W > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca or email info@... . 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Michele- Your post about how Aubrie sat and slept really struck a chord with me. My son Jake will be two next month. He is a chronic W-sitter (which is a HUGE NO NO in the PT world). No matter how many times I try to change his position, he always ends up sitting that way. We are now in a Mommy and me gymnastics class and he is having trouble with it because his hamstrings and adductors are so tight. He fights any kind of positioning and stretching. He had a pretty traumatic birth and I always wonder if there will be some repercutions down the line (especially, will he show increased muscle tone). Even with my background and profession, I cannot change how and what he is doing. I second guess myself all the time. I think its a lot of wasted energy, but I can't help it. Just wanted you to know you are not alone! Kate (PT to a CHARGEr) > > > > Pat- > > I can't recall anything that was detrimental to Aubrie. I do > recall that > > she cried during PT as a small infant. It really bothered me but > I was > > there to see that the PT wasn't doing anything offensive or > upsetting. She > > would hold her on her chest and was very kind and nurturing. > Aubrie simply > > didn't like being on her tummy and let that be known. It was more > like a > > complaining cry that a torturous cry. I'll never be sure if it > was the > > right thing to do, but I think it made sense that she would > complain and, > > yet, needed to do the task. There are times now when she doesn't > > particularly like what she has to do, but she does it. Looking > back, > > perhaps I could have suggested that the PT coach me as I held her > on my > > chest to encourage that tummy time. > > > > It was very difficult for me at the time to decide to let things > proceed or > > not. We usually went on until or unless the cry had that > different, more > > urgent quality. If we thought she was just complaining, we > continued with > > care. > > > > Just a heads up in case Aidan would respond in the same way. It > can be very > > unsettling for Mom and may be something you want to be prepared to > consider. > > Of course, I hope he'll have nothing but positive experiences. > But then, > > isn't the goal to gently push them past their own limits? > > > > Michele W > > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@c... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@c... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Kate, I recall W sitting, as her favorite position choice. I think I remember the pt telling her to " sit like an indian " . Another thing that didn't occur to me for years as a probable problem, was that because of where her cribs and beds have been positioned, it has happened that she's spent her entire life sleeping on her right side. Even today, both at home and at school, the logical bed position puts her on her right side to face out into the room. She has sloping shoulders and a short neck, and her left shoulder is weak and rounded forward. They cut the back muscles there for her heart surgery. She has significant scoliosis. I asked her if she ever sleeps on her left side. She said " not really " , because her left shoulder feels " funky, weird. " Aren't we supposed to sleep on our left side to aid digestion? .. mom to age 20 w/ charge and chiari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Kate- You got it-- wasted time and energy but real worries! It's really awful when you know what is happening is likely to cause problems down the road but you can't stop it. Isn't that our job -- to stop all the bad things?? Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 What's exactly a W sitting? Aidan has to have his arms held if we want him to be sitting down and anyway he hunches over, his back arched. His legs, sometimes straight, most of the times, feet together, like an indian.. and his head wobbling a bit, getting better.. Slow process, PT... Pat, mum to Aidan (9.5 months old, 2.5 months prem) -- IRELAND > > Kate, > I recall W sitting, as her favorite position choice. I think I > remember the pt telling her to " sit like an indian " . > Another thing that didn't occur to me for years as a probable problem, was > that because of where her cribs and beds have been positioned, it has happened > that she's spent her entire life sleeping on her right side. Even today, > both at home and at school, the logical bed position puts her on her right side > to face out into the room. She has sloping shoulders and a short neck, and > her left shoulder is weak and rounded forward. They cut the back muscles > there for her heart surgery. She has significant scoliosis. > I asked her if she ever sleeps on her left side. She said " not really " , > because her left shoulder feels " funky, weird. " > Aren't we supposed to sleep on our left side to aid digestion? > . > mom to age 20 w/ charge and chiari > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Thanks Kate! I know PT is a very slow process and that you can only see the results in a long/medium term, but never (or very rarely) at short term... but I cannot help worrying (how could I!?) about Aidan's development since he still feels so floppy.. Well, I guess the key is just keep on it, don't put any landmark and just take each child at their own pace.. And that's Mummy's duty! Pat- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 With Patty and any therapy she had I learned therapies worked when they did not " force " something. All the children are different, but therapies can be overwhelming at times. Listen to the child, allow the child to join in as comfortably as they can. Keep therapy as something meaningful and positive as possible. They already have negatives in their lives. Don't prod and push but work together within the child's comfort levels. That doesn't mean therapy is always a happy time, but it can be positive. But hey, isn't that what therapy is about. Or at least that is what it should be. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Kate, It is hard when you know the dangers of something from your profession, but then again you know your child's needs are different. Have you ever done cranial sacral therapy for your son? It can be really helpful following traumatic births. Kim > Michele- > Your post about how Aubrie sat and slept really struck a chord with > me. My son Jake will be two next month. He is a chronic W-sitter > (which is a HUGE NO NO in the PT world). No matter how many times I > try to change his position, he always ends up sitting that way. We > are now in a Mommy and me gymnastics class and he is having trouble > with it because his hamstrings and adductors are so tight. He > fights any kind of positioning and stretching. He had a pretty > traumatic birth and I always wonder if there will be some > repercutions down the line (especially, will he show increased > muscle tone). Even with my background and profession, I cannot > change how and what he is doing. I second guess myself all the > time. I think its a lot of wasted energy, but I can't help it. > Just wanted you to know you are not alone! > > Kate (PT to a CHARGEr) > > >>> >>> Pat- >>> I can't recall anything that was detrimental to Aubrie. I do >> recall that >>> she cried during PT as a small infant. It really bothered me > but >> I was >>> there to see that the PT wasn't doing anything offensive or >> upsetting. She >>> would hold her on her chest and was very kind and nurturing. >> Aubrie simply >>> didn't like being on her tummy and let that be known. It was > more >> like a >>> complaining cry that a torturous cry. I'll never be sure if it >> was the >>> right thing to do, but I think it made sense that she would >> complain and, >>> yet, needed to do the task. There are times now when she doesn't >>> particularly like what she has to do, but she does it. Looking >> back, >>> perhaps I could have suggested that the PT coach me as I held > her >> on my >>> chest to encourage that tummy time. >>> >>> It was very difficult for me at the time to decide to let things >> proceed or >>> not. We usually went on until or unless the cry had that >> different, more >>> urgent quality. If we thought she was just complaining, we >> continued with >>> care. >>> >>> Just a heads up in case Aidan would respond in the same way. It >> can be very >>> unsettling for Mom and may be something you want to be prepared > to >> consider. >>> Of course, I hope he'll have nothing but positive experiences. >> But then, >>> isn't the goal to gently push them past their own limits? >>> >>> Michele W >>> >> >> >> >> >> >> >> Membership of this email support groups does not constitute > membership in >> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter), >> please contact marion@c... or visit >> the web site at http://www.chargesyndrome.org - for CHARGE > Syndrome Canada >> information and membership, please visit > http://www.chargesyndrome.ca or >> email info@c... . >> 8th International >> CHARGE Syndrome Conference, July, 2007. Information will be > available at >> www.chargesyndrome.org or by calling 1-. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Hi ! That " Bumbo " seat that you describe seems to be what the OT told me she would try to get for Aidan. She said it's a seat with foam supports to be seated straight up. I'm expecting her to get back to me next week so I'll let you know then. Keep us posted about Evan and his new contrivance! Pat- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Hi, I've just checked in the web that Bumbo seat.. Doesn't it look like a huge potty?? LOL By no means was like the one I meant. Mine was more awkard, with 2 straps for the body and detachable foam supports for the head and legs. A real bulky thing. I'm relying this thing about the Bumbo seat on Aidan's PT and OT, to see what they think.. Thank you for your input! Pat > > > > > > Kate, > > > I recall W sitting, as her favorite position choice. I > think > > I > > > remember the pt telling her to " sit like an indian " . > > > Another thing that didn't occur to me for years as a probable > > problem, was > > > that because of where her cribs and beds have been positioned, > it > > has happened > > > that she's spent her entire life sleeping on her right side. > Even > > today, > > > both at home and at school, the logical bed position puts her on > > her right side > > > to face out into the room. She has sloping shoulders and a > short > > neck, and > > > her left shoulder is weak and rounded forward. They cut the > back > > muscles > > > there for her heart surgery. She has significant scoliosis. > > > I asked her if she ever sleeps on her left side. She said " not > > really " , > > > because her left shoulder feels " funky, weird. " > > > Aren't we supposed to sleep on our left side to aid digestion? > > > . > > > mom to age 20 w/ charge and chiari > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.