Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 What wonderful news Bert! I am so glad to hear that she is doing well and you are seeing such great improvement. Noelle (12-2-01) Ian (8-15-04) Bridget back from SLC Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 what fabulous news, bert! what a relief it must be for you, and such a vindication for your effort to get the best possible care for bridget. around the world, in fact (am i exaggerating? i'm not quite sure!) anyway, enjoy the summer. it's warm here in boston, but rainy. my best, deshea ---- Original message ---- >Date: Thu, 9 Nov 2006 00:36:20 -0800 (PST) >From: bert lehane <bert_lehane@...> >Subject: Bridget back from SLC >infantile scoliosis treatment > > Hi everyone, > > Bridget and I are just back from SLC. We had > wonderful results. Bridget began at 38 degrees 2 > years ago at age 3 and a half. She had a series of 4 > casts over 14 months then was fitted for a brace > last November. At that time she was 8 degrees in her > last cast but went back to 28 degrees out of cast > due to her connective tissue disorder Ehlers Danlos. > She has just been fitted for her third brace and is > now 16 dgrees out of brace (with a 1.5cm shoe rise > to address a leg length difference) and an amazing 0 > degrees in her new brace. (her 3rd) No measureable > curve and no rotation. > > Dr D'Astous was very excited as were the orthotics > guys. She is wearing the brace 16 hrs a day rather > than 23 and working on a physio program including > heaps of swimming (it's summer in Aus) > > We have no idea what the future holds but for now we > are very excited and so grateful that this treatment > was available to us. Thanks so much and all > the mums on this site. You have really changed our > lives. > > Love Bert and Bridget > > --------------------------------- > Access over 1 million songs - Music > Unlimited. > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 This is great news! Congrats. I am curious as to whether the doctors have structured the out of brace time? Ours did not specificy and since it was summer we left it off 8 hours straight during the day when it was hot and her curve worsened. So I have always wondered if we would have done 4 hours 2 times a day if it would have been different. Did they give any advice on the timing? E ________________________________ From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of bert lehane Sent: Thursday, November 09, 2006 2:36 AM infantile scoliosis treatment Subject: Bridget back from SLC Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Great to hear from you, Bert. I'm so happy about the news and how well Bridget is doing. She's an amazing young lady. How did she like her first North American Halloween? I hope she had a great time. Hopefully your summer is treating you well. We had snow today, and will have off and on through the weekend. This is after a record hot 73 degrees in SLC yesterday (Wednesday). I wish we could have come to visit while you were here. Glad you understand. My best! Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ ________________________________________________________________________________\ ____ Music Unlimited Access over 1 million songs. http://music./unlimited Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 I just love stories like this. Thanks for the update and congrats on the continued success in this amazing treatment. Have fun swimming this summer, Bridget. Keep us posted. What is the next plan of care at this point? /Cole " Deshea L. " <deshea@...> wrote: what fabulous news, bert! what a relief it must be for you, and such a vindication for your effort to get the best possible care for bridget. around the world, in fact (am i exaggerating? i'm not quite sure!) anyway, enjoy the summer. it's warm here in boston, but rainy. my best, deshea ---- Original message ---- >Date: Thu, 9 Nov 2006 00:36:20 -0800 (PST) >From: bert lehane <bert_lehane@...> >Subject: Bridget back from SLC >infantile scoliosis treatment > > Hi everyone, > > Bridget and I are just back from SLC. We had > wonderful results. Bridget began at 38 degrees 2 > years ago at age 3 and a half. She had a series of 4 > casts over 14 months then was fitted for a brace > last November. At that time she was 8 degrees in her > last cast but went back to 28 degrees out of cast > due to her connective tissue disorder Ehlers Danlos. > She has just been fitted for her third brace and is > now 16 dgrees out of brace (with a 1.5cm shoe rise > to address a leg length difference) and an amazing 0 > degrees in her new brace. (her 3rd) No measureable > curve and no rotation. > > Dr D'Astous was very excited as were the orthotics > guys. She is wearing the brace 16 hrs a day rather > than 23 and working on a physio program including > heaps of swimming (it's summer in Aus) > > We have no idea what the future holds but for now we > are very excited and so grateful that this treatment > was available to us. Thanks so much and all > the mums on this site. You have really changed our > lives. > > Love Bert and Bridget > > --------------------------------- > Access over 1 million songs - Music > Unlimited. > > [Non-text portions of this message have been > removed] > > --------------------------------- Everyone is raving about the all-new beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Thanks Deshea, No you are not exaggerating. We did begin treatment in England and then switched to Dr D'Astous in SLC. We are so happy and though we know the connective tissue disorder means she could grow and curve again Miss Mehta did say that casting can correct chn with connective tissue disorders if you persevere. (though not all will respond) I think exercise is playing an important role for Bridge and we banned sitting on the floor for a year to try to break her from her habit of side sitting and leaning into her curve which Dr Mehta told me was contributing to its progression. It sounds a bit Hitler like but I wanted to do everything Miss Mehta told me to do and at the time her cast dug into her legs when she sat on the floor so it wasn't so dreadful. She had a little chair at kindy which she sat on while th other kids were on the carpet. Anyway one growth spurt at a time and we will see how we go but for now we are really happy,, as is Dr D and the orthotics team at SLC. Thanks again Bert and Bridge " Deshea L. " <deshea@...> wrote: what fabulous news, bert! what a relief it must be for you, and such a vindication for your effort to get the best possible care for bridget. around the world, in fact (am i exaggerating? i'm not quite sure!) anyway, enjoy the summer. it's warm here in boston, but rainy. my best, deshea ---- Original message ---- >Date: Thu, 9 Nov 2006 00:36:20 -0800 (PST) >From: bert lehane <bert_lehane@...> >Subject: Bridget back from SLC >infantile scoliosis treatment > > Hi everyone, > > Bridget and I are just back from SLC. We had > wonderful results. Bridget began at 38 degrees 2 > years ago at age 3 and a half. She had a series of 4 > casts over 14 months then was fitted for a brace > last November. At that time she was 8 degrees in her > last cast but went back to 28 degrees out of cast > due to her connective tissue disorder Ehlers Danlos. > She has just been fitted for her third brace and is > now 16 dgrees out of brace (with a 1.5cm shoe rise > to address a leg length difference) and an amazing 0 > degrees in her new brace. (her 3rd) No measureable > curve and no rotation. > > Dr D'Astous was very excited as were the orthotics > guys. She is wearing the brace 16 hrs a day rather > than 23 and working on a physio program including > heaps of swimming (it's summer in Aus) > > We have no idea what the future holds but for now we > are very excited and so grateful that this treatment > was available to us. Thanks so much and all > the mums on this site. You have really changed our > lives. > > Love Bert and Bridget > > --------------------------------- > Access over 1 million songs - Music > Unlimited. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Dr D'Astous said he wouldn't recommend 8 hrs out straight. Bridget will have hers on all night and to go to school then off at school for playtime and sport back on at school for the afternoon session then off after school for exercise and activities. Basically when she is exercising she has it off but if she is sitting still or watching TV it should be on. How much worse did her curve get? Bert " D. Esser " <cesser@...> wrote: This is great news! Congrats. I am curious as to whether the doctors have structured the out of brace time? Ours did not specificy and since it was summer we left it off 8 hours straight during the day when it was hot and her curve worsened. So I have always wondered if we would have done 4 hours 2 times a day if it would have been different. Did they give any advice on the timing? E ________________________________ From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of bert lehane Sent: Thursday, November 09, 2006 2:36 AM infantile scoliosis treatment Subject: Bridget back from SLC Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Dr D'Astous said he wouldn't recommend 8 hrs out straight. Bridget will have hers on all night and to go to school then off at school for playtime and sport back on at school for the afternoon session then off after school for exercise and activities. Basically when she is exercising she has it off but if she is sitting still or watching TV it should be on. How much worse did her curve get? Bert " D. Esser " <cesser@...> wrote: This is great news! Congrats. I am curious as to whether the doctors have structured the out of brace time? Ours did not specificy and since it was summer we left it off 8 hours straight during the day when it was hot and her curve worsened. So I have always wondered if we would have done 4 hours 2 times a day if it would have been different. Did they give any advice on the timing? E ________________________________ From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of bert lehane Sent: Thursday, November 09, 2006 2:36 AM infantile scoliosis treatment Subject: Bridget back from SLC Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Back to 35 which is where we started at but the good news is that they were able to get her to 0 in her cast--she gets it changed tomorrow so hopefully we will be done with round 2 of casting soon, and I will keep Dr. D'Astous's advice in mind when we start bracing again! Thanks! ________________________________ From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of bert lehane Sent: Thursday, November 09, 2006 4:23 PM infantile scoliosis treatment Subject: RE: Bridget back from SLC Dr D'Astous said he wouldn't recommend 8 hrs out straight. Bridget will have hers on all night and to go to school then off at school for playtime and sport back on at school for the afternoon session then off after school for exercise and activities. Basically when she is exercising she has it off but if she is sitting still or watching TV it should be on. How much worse did her curve get? Bert " D. Esser " <cesser@... <mailto:cesser%40habush.com> > wrote: This is great news! Congrats. I am curious as to whether the doctors have structured the out of brace time? Ours did not specificy and since it was summer we left it off 8 hours straight during the day when it was hot and her curve worsened. So I have always wondered if we would have done 4 hours 2 times a day if it would have been different. Did they give any advice on the timing? E ________________________________ From: infantile scoliosis treatment <mailto:infantile scoliosis treatment%40> [mailto:infantile scoliosis treatment <mailto:infantile scoliosis treatment%40> ] On Behalf Of bert lehane Sent: Thursday, November 09, 2006 2:36 AM infantile scoliosis treatment <mailto:infantile scoliosis treatment%40> Subject: Bridget back from SLC Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Great to see you posting Bridgey's good news Bert! I've been bursting to let people know!!! We loved having you and Bridgey here, and we all MISS YOU TERRIBLY - Even 'the Legend' (and Chester and Toffy xx) Hugs to all Jacki and Siobhan > > Great to hear from you, Bert. I'm so happy about the > news and how well Bridget is doing. She's an amazing > young lady. How did she like her first North American > Halloween? I hope she had a great time. Hopefully > your summer is treating you well. We had snow today, > and will have off and on through the weekend. This is > after a record hot 73 degrees in SLC yesterday > (Wednesday). I wish we could have come to visit while > you were here. Glad you understand. > > My best! > Carmell > > > > mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ > > > > _____________________________________________________________________ _______________ > Music Unlimited > Access over 1 million songs. > http://music./unlimited > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Hi If I could interrrupt (LOL) - Siobhan (now aged 7) was dx with a connective tissue disorder at around 2 yrs old. Dr D'Astous got her biggest curve to zero (in cast) from it's original 45*. By the time the cast came off and the brace was ready (a few hours - with lots of adjustments and padding from the wonderful team at SLC), she was back up to 29* in brace. I don't even know what she was out of brace? Pretty much where we started unfortunately. That's not to say that casting didn't buy her valuable time, just that maybe some connective tissue disorders (with super flexible spines) aren't as responsive to bracing? The brace did really help with controlling her rotation though. Hope all goes well tomorrow. Jacki > This is great news! Congrats. I am curious as to whether the doctors > have structured the out of brace time? Ours did not specificy and since > it was summer we left it off 8 hours straight during the day when it was > hot and her curve worsened. So I have always wondered if we would have > done 4 hours 2 times a day if it would have been different. Did they > give any advice on the timing? > > E > > ________________________________ > > From: infantile scoliosis treatment > <mailto:infantile scoliosis treatment%40> > [mailto:infantile scoliosis treatment > <mailto:infantile scoliosis treatment%40> ] On Behalf Of bert > lehane > Sent: Thursday, November 09, 2006 2:36 AM > infantile scoliosis treatment > <mailto:infantile scoliosis treatment%40> > Subject: Bridget back from SLC > > Hi everyone, > > Bridget and I are just back from SLC. We had wonderful results. Bridget > began at 38 degrees 2 years ago at age 3 and a half. She had a series of > 4 casts over 14 months then was fitted for a brace last November. At > that time she was 8 degrees in her last cast but went back to 28 degrees > out of cast due to her connective tissue disorder Ehlers Danlos. She has > just been fitted for her third brace and is now 16 dgrees out of brace > (with a 1.5cm shoe rise to address a leg length difference) and an > amazing 0 degrees in her new brace. (her 3rd) No measureable curve and > no rotation. > > Dr D'Astous was very excited as were the orthotics guys. She is wearing > the brace 16 hrs a day rather than 23 and working on a physio program > including heaps of swimming (it's summer in Aus) > > We have no idea what the future holds but for now we are very excited > and so grateful that this treatment was available to us. Thanks so much > and all the mums on this site. You have really changed our > lives. > > Love Bert and Bridget > > --------------------------------- > Access over 1 million songs - Music Unlimited. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Thanks Jacki, We had a fabulous time and I have just been up at school with Bridget showing her photos. She had a long explanation for each one so it's lucky some of the kids didn't doze off. We missed getting photos of Chester and Toffee though but I will send some others to you as they are wonderful. For some reason some of my posts are going twice while others not at all so sorry if I am clogging the cyberwaves. Love Bert jabostock <jabostock@...> wrote: Great to see you posting Bridgey's good news Bert! I've been bursting to let people know!!! We loved having you and Bridgey here, and we all MISS YOU TERRIBLY - Even 'the Legend' (and Chester and Toffy xx) Hugs to all Jacki and Siobhan > > Great to hear from you, Bert. I'm so happy about the > news and how well Bridget is doing. She's an amazing > young lady. How did she like her first North American > Halloween? I hope she had a great time. Hopefully > your summer is treating you well. We had snow today, > and will have off and on through the weekend. This is > after a record hot 73 degrees in SLC yesterday > (Wednesday). I wish we could have come to visit while > you were here. Glad you understand. > > My best! > Carmell > > > > mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ > > > > __________________________________________________________ _______________ > Music Unlimited > Access over 1 million songs. > http://music./unlimited > --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Thanks Carmell and I know we will catch up one of these trips. We had Halloween in Vancouver with Jacki and Siobhan. We even woke up to snow at the hospital one morning and I think we were the only two excited enough to be throwing snowballs at each other and playing around. It was great Love Bert Carmell Burns <cjbmom23@...> wrote: Great to hear from you, Bert. I'm so happy about the news and how well Bridget is doing. She's an amazing young lady. How did she like her first North American Halloween? I hope she had a great time. Hopefully your summer is treating you well. We had snow today, and will have off and on through the weekend. This is after a record hot 73 degrees in SLC yesterday (Wednesday). I wish we could have come to visit while you were here. Glad you understand. My best! Carmell mom to Kara, idiopathic scoliosis, Blake 16, GERD and Braydon 11, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________________ Music Unlimited Access over 1 million songs. http://music./unlimited __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Thanks , We will send an xray in April and then come back when she has out grown her brace which seems to be every 6 months. We are trialing 16 hrs a day bracing with lots of swimming and physio. I think maintaining the correction gained is the area that the docs are still not sure about. My physio is very keen to work on getting Bridget to move symmetrically as she has been so used to dropping one shoulder and leaning more to the left because of her curve and she now has better muscle tone on that side so that side is stronger so she still moves that way because it feels normal to her even though her curve is reduced. However she is 5 and a half so she can cooperate if she chooses and have some idea of what we are asking her to do. We will see if it works but at least it's worth a try. Bert Baird <michelle_r_baird@...> wrote: I just love stories like this. Thanks for the update and congrats on the continued success in this amazing treatment. Have fun swimming this summer, Bridget. Keep us posted. What is the next plan of care at this point? /Cole " Deshea L. " <deshea@...> wrote: what fabulous news, bert! what a relief it must be for you, and such a vindication for your effort to get the best possible care for bridget. around the world, in fact (am i exaggerating? i'm not quite sure!) anyway, enjoy the summer. it's warm here in boston, but rainy. my best, deshea ---- Original message ---- >Date: Thu, 9 Nov 2006 00:36:20 -0800 (PST) >From: bert lehane <bert_lehane@...> >Subject: Bridget back from SLC >infantile scoliosis treatment > > Hi everyone, > > Bridget and I are just back from SLC. We had > wonderful results. Bridget began at 38 degrees 2 > years ago at age 3 and a half. She had a series of 4 > casts over 14 months then was fitted for a brace > last November. At that time she was 8 degrees in her > last cast but went back to 28 degrees out of cast > due to her connective tissue disorder Ehlers Danlos. > She has just been fitted for her third brace and is > now 16 dgrees out of brace (with a 1.5cm shoe rise > to address a leg length difference) and an amazing 0 > degrees in her new brace. (her 3rd) No measureable > curve and no rotation. > > Dr D'Astous was very excited as were the orthotics > guys. She is wearing the brace 16 hrs a day rather > than 23 and working on a physio program including > heaps of swimming (it's summer in Aus) > > We have no idea what the future holds but for now we > are very excited and so grateful that this treatment > was available to us. Thanks so much and all > the mums on this site. You have really changed our > lives. > > Love Bert and Bridget > > --------------------------------- > Access over 1 million songs - Music > Unlimited. > > [Non-text portions of this message have been > removed] > > --------------------------------- Everyone is raving about the all-new beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Bert, WOW! I just got goose bumps...Thats the best news a parent could get. O deg in her new brace! I am so glad that you made the decision to come all the way out to SLC. I bet you are, too! Bridge is very lucky to have a mum as determined, and persistent as you Bert! Distance and $ means nothing, when it comes down to acquiring the best care. Where there is a will, there is a way.... I am just happy that ISOP, and parents on this group were there to support you. We are all here to support eachother, and I am reminded everyday (w/ stories like Bridgettes) how awsome this group is. I feel priveledged (sp?) to be a part of it, and hope that CAST/ISOP can provide support to parents of children with scoliosis for many years to come. Plug into parent power! HRH Bridget back from SLC Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Bert What great news for you and Bridgette and the family. Way to go. You have done so well to get the best care for her possible. What an inspiration YOU are to the other families joining on here. It is a big deal to travel as much as you have and dedicate so much time to help your girl!!! Enjoy the summer there. It is getting colder here in Kansas and I don't like it!! I'm a Spring kind of girl. :0) Shellie bert lehane <bert_lehane@...> wrote: Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 That is interesting to know. They are still trying to figure out what her muscular issues are--we are still waiting on the muscle biopsy results. I should say--to give some hope for those doing bracing--that when she wore the brace after finishing casting we wore it 20 hours a day and she actually improved 8 degrees while in her brace, down to a 12 degree curve after being out of it for 24 hours for x-rays. It was only when we had it off for 8 hours a day (which was done because she had improved) that she got worse. So maybe the lesson for us is to not have it off for more than 4 hours at a time. But alas we are in casting right now, so all we can do is keep trying! E ________________________________ From: infantile scoliosis treatment on behalf of jabostock Sent: Thu 11/9/2006 5:39 PM infantile scoliosis treatment Subject: Re: Bridget back from SLC Hi If I could interrrupt (LOL) - Siobhan (now aged 7) was dx with a connective tissue disorder at around 2 yrs old. Dr D'Astous got her biggest curve to zero (in cast) from it's original 45*. By the time the cast came off and the brace was ready (a few hours - with lots of adjustments and padding from the wonderful team at SLC), she was back up to 29* in brace. I don't even know what she was out of brace? Pretty much where we started unfortunately. That's not to say that casting didn't buy her valuable time, just that maybe some connective tissue disorders (with super flexible spines) aren't as responsive to bracing? The brace did really help with controlling her rotation though. Hope all goes well tomorrow. Jacki > This is great news! Congrats. I am curious as to whether the doctors > have structured the out of brace time? Ours did not specificy and since > it was summer we left it off 8 hours straight during the day when it was > hot and her curve worsened. So I have always wondered if we would have > done 4 hours 2 times a day if it would have been different. Did they > give any advice on the timing? > > E > > ________________________________ > > From: infantile scoliosis treatment <mailto:infantile scoliosis treatment%40> > <mailto:infantile scoliosis treatment%40> > [mailto:infantile scoliosis treatment <mailto:infantile scoliosis treatment%40> > <mailto:infantile scoliosis treatment%40> ] On Behalf Of bert > lehane > Sent: Thursday, November 09, 2006 2:36 AM > infantile scoliosis treatment <mailto:infantile scoliosis treatment%40> > <mailto:infantile scoliosis treatment%40> > Subject: Bridget back from SLC > > Hi everyone, > > Bridget and I are just back from SLC. We had wonderful results. Bridget > began at 38 degrees 2 years ago at age 3 and a half. She had a series of > 4 casts over 14 months then was fitted for a brace last November. At > that time she was 8 degrees in her last cast but went back to 28 degrees > out of cast due to her connective tissue disorder Ehlers Danlos. She has > just been fitted for her third brace and is now 16 dgrees out of brace > (with a 1.5cm shoe rise to address a leg length difference) and an > amazing 0 degrees in her new brace. (her 3rd) No measureable curve and > no rotation. > > Dr D'Astous was very excited as were the orthotics guys. She is wearing > the brace 16 hrs a day rather than 23 and working on a physio program > including heaps of swimming (it's summer in Aus) > > We have no idea what the future holds but for now we are very excited > and so grateful that this treatment was available to us. Thanks so much > and all the mums on this site. You have really changed our > lives. > > Love Bert and Bridget > > --------------------------------- > Access over 1 million songs - Music Unlimited. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 Thanks Your support and that of everyone means so much for us. I would hate to think where we would have been if we hadn't been able to access this treatment. We are still working hard on maintaining as I don't believe our journey's done yet. The team appproach at SLC with docs and orthotists working together rather than one person thinking they have all the answers is the big difference. They also really listen to the parent's ideas too and take a personal interest in the child so Bridget is a person they want to help rather than just an xray. I think that's the beauty of this group too. I am always learning from listening to others and following everyone's experiences. We are feeling really wonderful at the moment. Thanks again Bert heather hyatt <heather@...> wrote: Bert, WOW! I just got goose bumps...Thats the best news a parent could get. O deg in her new brace! I am so glad that you made the decision to come all the way out to SLC. I bet you are, too! Bridge is very lucky to have a mum as determined, and persistent as you Bert! Distance and $ means nothing, when it comes down to acquiring the best care. Where there is a will, there is a way.... I am just happy that ISOP, and parents on this group were there to support you. We are all here to support eachother, and I am reminded everyday (w/ stories like Bridgettes) how awsome this group is. I feel priveledged (sp?) to be a part of it, and hope that CAST/ISOP can provide support to parents of children with scoliosis for many years to come. Plug into parent power! HRH Bridget back from SLC Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 Thanks Shellie, you are too kind, But remember I only had the courage to make this treatment journey because you and and everyone else who followed had the courage to share their children's stories and offer encouragement along the way. Casting has its challenges but it is worthwhile when performed properly and our children live happily and comfortably in their casts and achieve great results. This is the message that I am hoping to be able to help spread to people in Australia so that their children can have the same chance that Bridget is getting. It's a big challenge. Love to Moriah and Bridget thanks her. Bert Shellie Grant <shelliegrant@...> wrote: Bert What great news for you and Bridgette and the family. Way to go. You have done so well to get the best care for her possible. What an inspiration YOU are to the other families joining on here. It is a big deal to travel as much as you have and dedicate so much time to help your girl!!! Enjoy the summer there. It is getting colder here in Kansas and I don't like it!! I'm a Spring kind of girl. :0) Shellie bert lehane <bert_lehane@...> wrote: Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 Bert & Bridget, So happy to hear your great news!!! All the traveling has definitely been worth it, hasn't it? Enjoy your summer! Smiles, & Jake > > Hi everyone, > > Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. > > Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) > > We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. > > Love Bert and Bridget > > > --------------------------------- > Access over 1 million songs - Music Unlimited. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Thanks , Yes we are soo happy with the results and we are quite used to the travelling now. We are well and truly back into Summer today very hot and humid. We had a picnic day andthe kids were in and out of the water all day. Good luck to you and Jake too. Bert and Bridget jviv314 <jviv314@...> wrote: Bert & Bridget, So happy to hear your great news!!! All the traveling has definitely been worth it, hasn't it? Enjoy your summer! Smiles, & Jake > > Hi everyone, > > Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. > > Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) > > We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. > > Love Bert and Bridget > > > --------------------------------- > Access over 1 million songs - Music Unlimited. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 I sure miss you, Bert! I hope we can meet again someday... So happy that you are feeling wonderful! I would have to say that I am feeling wonderful about Olivias treatment, as well. Our lives have changed for the better, and I feel so lucky to have found the team, and especially our doc in SLC. talk soon, h Bridget back from SLC Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Hey Bert, I do hope you and can get Australia online with this. Very exciting. I'm just so glad Bridgette is doing so well. It definitely is good to be on this side of things!! Keep us updated. I read 's story a few days ago and was just blown away. Shellie bert lehane <bert_lehane@...> wrote: Thanks Shellie, you are too kind, But remember I only had the courage to make this treatment journey because you and and everyone else who followed had the courage to share their children's stories and offer encouragement along the way. Casting has its challenges but it is worthwhile when performed properly and our children live happily and comfortably in their casts and achieve great results. This is the message that I am hoping to be able to help spread to people in Australia so that their children can have the same chance that Bridget is getting. It's a big challenge. Love to Moriah and Bridget thanks her. Bert Shellie Grant <shelliegrant@...> wrote: Bert What great news for you and Bridgette and the family. Way to go. You have done so well to get the best care for her possible. What an inspiration YOU are to the other families joining on here. It is a big deal to travel as much as you have and dedicate so much time to help your girl!!! Enjoy the summer there. It is getting colder here in Kansas and I don't like it!! I'm a Spring kind of girl. :0) Shellie bert lehane <bert_lehane@...> wrote: Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Hi Shellie, I think is amazing too and is a lucky little boy to have such an inspirational mum. has already overcome so many challenges and I hope proper casting will reduce his curve and take the pressure off his heart and lungs. Say some prayers for him as he is being casted this Thursday. is also fighting hard try to bring casting to Australia so that other families have the opportunity to use growth as a corrective force before their children have passed their rapid growth phase. Cheers Bert Shellie Grant <shelliegrant@...> wrote: Hey Bert, I do hope you and can get Australia online with this. Very exciting. I'm just so glad Bridgette is doing so well. It definitely is good to be on this side of things!! Keep us updated. I read 's story a few days ago and was just blown away. Shellie bert lehane <bert_lehane@...> wrote: Thanks Shellie, you are too kind, But remember I only had the courage to make this treatment journey because you and and everyone else who followed had the courage to share their children's stories and offer encouragement along the way. Casting has its challenges but it is worthwhile when performed properly and our children live happily and comfortably in their casts and achieve great results. This is the message that I am hoping to be able to help spread to people in Australia so that their children can have the same chance that Bridget is getting. It's a big challenge. Love to Moriah and Bridget thanks her. Bert Shellie Grant <shelliegrant@...> wrote: Bert What great news for you and Bridgette and the family. Way to go. You have done so well to get the best care for her possible. What an inspiration YOU are to the other families joining on here. It is a big deal to travel as much as you have and dedicate so much time to help your girl!!! Enjoy the summer there. It is getting colder here in Kansas and I don't like it!! I'm a Spring kind of girl. :0) Shellie bert lehane <bert_lehane@...> wrote: Hi everyone, Bridget and I are just back from SLC. We had wonderful results. Bridget began at 38 degrees 2 years ago at age 3 and a half. She had a series of 4 casts over 14 months then was fitted for a brace last November. At that time she was 8 degrees in her last cast but went back to 28 degrees out of cast due to her connective tissue disorder Ehlers Danlos. She has just been fitted for her third brace and is now 16 dgrees out of brace (with a 1.5cm shoe rise to address a leg length difference) and an amazing 0 degrees in her new brace. (her 3rd) No measureable curve and no rotation. Dr D'Astous was very excited as were the orthotics guys. She is wearing the brace 16 hrs a day rather than 23 and working on a physio program including heaps of swimming (it's summer in Aus) We have no idea what the future holds but for now we are very excited and so grateful that this treatment was available to us. Thanks so much and all the mums on this site. You have really changed our lives. Love Bert and Bridget --------------------------------- Access over 1 million songs - Music Unlimited. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 congratulations!!!! that is such exciting news!!!! all the best, abigail and nadia --------------------------------- Check out the all-new beta - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
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