Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I was somewhat disappointed as well. I don't think they gave enough information. For example, they didn't explain about needing more surgeries as he grows. They only showed his before x-ray...I think it would have been more powerful if they had shown the after film. It would have been nice to see his back after surgery too. I also thought that they should have showed them explaining the surgery to the parents in detail versus the cursory explanation they gave the parents in the clip that they showed. I am sure the parents got much more information before agreeing to the surgery than what they showed on TV. They should have also explained why VEPTR might be preferable over other surgery options, etc, etc, etc. I did think they showed the emotional toll this takes on the parents and the child himself very well. I think I cried the entire way through this show. When they were wheeling him into surgery and he was crying like that, it just tore me to pieces! And, I also really felt for the girl with Tourettes. I am glad they were able to help her. Noelle (12-2-01)Ian (8-15-04) Miracle Workers Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. Gail****************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I CRIED THROUGH THE WHOLE SHOW! I was thinking they could get to his spine through his chest? After only 2 mos he seemed to be very mobile and that shocked me. Not as educational as I thought is was going to be. The DBS they did on the girl was shocking as well cause 1 yr 1/2 ago - a neurosurgeon was talking about doing that procedure on me for Geniculate Neuralgia (chronic ear-pain for 3 yrs) I am so much better now and to think I could of had to go through that! I believe it to be atypical facial pain and my pain is mild now. I was so happy for her to be able to maintain some normalcy in her life now! I'm not sure about shows like that all I do is cry and that little boy's dad would not quit crying! Even like Swan Princess and Hallmark commercials - oh yeah even the on-star radio commercials - they all make me cry - BIG BABY I AM!"Gail M. Kimball" <gmkimball@...> wrote: Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. Gail****************************************** Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Hi everyone! My name is Arnold and I am very curious about VACTERL. My son has scoliosis and he is now in his third cast from Shriners in SLC. They had never mentioned this to me before but my son has at least 3 of those symptoms. He had a hemivertebrae, he had atrial septal defect that was repaired, and he had polydactyly at birth. I am now just wondering why this dx was never mentioned to me. I met while we were in SLC and since I'd never heard of this, we didn't talk about it. Hi , if you are reading this! I am glad to hear that Olivia is doing well! She has been in our prayers! Anyway, are Dr.s guarded about giving this dx? I cannot tell you how excited I am right now to just know that all of these things aren't as random as previously thought and that others have these same things. I have been keeping up with the posts on this site since we came back from SLC but just hadn't had the time to do the research I had wanted yet about all the different dx's on this site. Anyway, any input would be greatly appreciated! thank you ' Arnold Kasey Arnold, son, scoliosis Stablein <mariahmarieinpa@...> wrote: I CRIED THROUGH THE WHOLE SHOW! I was thinking they could get to his spine through his chest? After only 2 mos he seemed to be very mobile and that shocked me. Not as educational as I thought is was going to be. The DBS they did on the girl was shocking as well cause 1 yr 1/2 ago - a neurosurgeon was talking about doing that procedure on me for Geniculate Neuralgia (chronic ear-pain for 3 yrs) I am so much better now and to think I could of had to go through that! I believe it to be atypical facial pain and my pain is mild now. I was so happy for her to be able to maintain some normalcy in her life now! I'm not sure about shows like that all I do is cry and that little boy's dad would not quit crying! Even like Swan Princess and Hallmark commercials - oh yeah even the on-star radio commercials - they all make me cry - BIG BABY I AM!"Gail M. Kimball" <gmkimball@...> wrote: Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. Gail****************************************** Use Photomail to share photos without annoying attachments. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Well, typically they go through the back. That is where my dd's incisions are and just about anyone else I have talked to it is in the back. Hmmmm. After about 2 months, was pretty much as active as she ever was, so that didn't surprise me. What SHOCKED me was the way the PT and the Father picked him up under his arms to get him off the bed or into the wagon. We were specifically told to "scoop" the child (one arm under the knees, the other across the shoulders) and not to lift under the arms. That had to have hurt! Gail****************************************** Stablein <mariahmarieinpa@...> wrote: I CRIED THROUGH THE WHOLE SHOW! I was thinking they could get to his spine through his chest? After only 2 mos he seemed to be very mobile and that shocked me. Not as educational as I thought is was going to be. The DBS they did on the girl was shocking as well cause 1 yr 1/2 ago - a neurosurgeon was talking about doing that procedure on me for Geniculate Neuralgia (chronic ear-pain for 3 yrs) I am so much better now and to think I could of had to go through that! I believe it to be atypical facial pain and my pain is mild now. I was so happy for her to be able to maintain some normalcy in her life now! I'm not sure about shows like that all I do is cry and that little boy's dad would not quit crying! Even like Swan Princess and Hallmark commercials - oh yeah even the on-star radio commercials - they all make me cry - BIG BABY I AM!"Gail M. Kimball" <gmkimball@...> wrote: Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. Gail****************************************** Use Photomail to share photos without annoying attachments. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 cynthia, hi! i wanted to let you know that there are at least 2 kids i know of who have VACTERL/VATERS. braydon/carmell's son and billy/connie's son. they both host another site for congenital scoliosis: CongenitalScoliosisSupport/ you might want to post there and see what they have to say. also, they have a lot of very good links under their group for all things congenital. another place to look is their individual homepages. they post them a lot so i hope they don't mind me posting them here: connie's http://members.tripod.com/conni60640-ivil/ carmell's http://carmellb-ivil.tripod.com/myfamily/ each of their pages has information regarding VACTERL good luck! deshea mom to lucas and ruby ---- Original message ---- >Date: Tue, 14 Mar 2006 09:34:36 -0800 (PST) >From: cynthia arnold <sassyredcyn@...> >Subject: Re: Miracle Workers >infantile scoliosis treatment > > Hi everyone! My name is Arnold and I am very > curious about VACTERL. My son has scoliosis and he > is now in his third cast from Shriners in SLC. They > had never mentioned this to me before but my son has > at least 3 of those symptoms. He had a > hemivertebrae, he had atrial septal defect that was > repaired, and he had polydactyly at birth. I am now > just wondering why this dx was never mentioned to > me. I met while we were in SLC and since I'd > never heard of this, we didn't talk about it. Hi > , if you are reading this! I am glad to hear > that Olivia is doing well! She has been in our > prayers! Anyway, are Dr.s guarded about giving this > dx? I cannot tell you how excited I am right now to > just know that all of these things aren't as random > as previously thought and that others have these > same things. I have been keeping up with the posts > on this site since we came back from SLC but just > hadn't had the time to do the research I had wanted > yet about all the differe! nt dx's on this site. > Anyway, any input would be greatly appreciated! > thank you > ' > Arnold > Kasey Arnold, son, scoliosis > Stablein <mariahmarieinpa@...> wrote: > > I CRIED THROUGH THE WHOLE SHOW! > I was thinking they could get to his spine through > his chest? After only 2 mos he seemed to be very > mobile and that shocked me. > Not as educational as I thought is was going to > be. > > The DBS they did on the girl was shocking as well > cause 1 yr 1/2 ago - a neurosurgeon was talking > about doing that procedure on me for Geniculate > Neuralgia (chronic ear-pain for 3 yrs) I am so > much better now and to think I could of had to go > through that! I believe it to be atypical facial > pain and my pain is mild now. > I was so happy ! for her to be able to maintain > some normalcy in her life now! > > I'm not sure about shows like that all I do is cry > and that little boy's dad would not quit crying! > Even like Swan Princess and Hallmark commercials - > oh yeah even the on-star radio commercials - they > all make me cry - BIG BABY I AM! > > " Gail M. Kimball " <gmkimball@...> wrote: > > Anyone watch?? I did, and I was somewhat > disappointed. They did not even give an > explanation of what VATER Association is. Plus, > what anomalies did the boy have? Definitely > Vertebral, but what else? They had such an > opportunity and I personally think they blew it > by not giving the info. > > Can someone explai! n to me why it looked like > they opened his chest and not his back? Or maybe > they had turned him when they were waiting for > his legs to respond? > > One thing that I did notice about is he > has facial dysplacia as well. I hope everything > works out for him, he is a cutie. > Gail > ****************************************** > > ------------------------------------------------ > > > Use Photomail to share photos without annoying > attachments. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 cynthia, i found one more thing: http://www.vaterconnection.org/ this is specifically a website to connect parents of kids who have this condition. deshea ---- Original message ---- >Date: Tue, 14 Mar 2006 09:34:36 -0800 (PST) >From: cynthia arnold <sassyredcyn@...> >Subject: Re: Miracle Workers >infantile scoliosis treatment > > Hi everyone! My name is Arnold and I am very > curious about VACTERL. My son has scoliosis and he > is now in his third cast from Shriners in SLC. They > had never mentioned this to me before but my son has > at least 3 of those symptoms. He had a > hemivertebrae, he had atrial septal defect that was > repaired, and he had polydactyly at birth. I am now > just wondering why this dx was never mentioned to > me. I met while we were in SLC and since I'd > never heard of this, we didn't talk about it. Hi > , if you are reading this! I am glad to hear > that Olivia is doing well! She has been in our > prayers! Anyway, are Dr.s guarded about giving this > dx? I cannot tell you how excited I am right now to > just know that all of these things aren't as random > as previously thought and that others have these > same things. I have been keeping up with the posts > on this site since we came back from SLC but just > hadn't had the time to do the research I had wanted > yet about all the differe! nt dx's on this site. > Anyway, any input would be greatly appreciated! > thank you > ' > Arnold > Kasey Arnold, son, scoliosis > Stablein <mariahmarieinpa@...> wrote: > > I CRIED THROUGH THE WHOLE SHOW! > I was thinking they could get to his spine through > his chest? After only 2 mos he seemed to be very > mobile and that shocked me. > Not as educational as I thought is was going to > be. > > The DBS they did on the girl was shocking as well > cause 1 yr 1/2 ago - a neurosurgeon was talking > about doing that procedure on me for Geniculate > Neuralgia (chronic ear-pain for 3 yrs) I am so > much better now and to think I could of had to go > through that! I believe it to be atypical facial > pain and my pain is mild now. > I was so happy ! for her to be able to maintain > some normalcy in her life now! > > I'm not sure about shows like that all I do is cry > and that little boy's dad would not quit crying! > Even like Swan Princess and Hallmark commercials - > oh yeah even the on-star radio commercials - they > all make me cry - BIG BABY I AM! > > " Gail M. Kimball " <gmkimball@...> wrote: > > Anyone watch?? I did, and I was somewhat > disappointed. They did not even give an > explanation of what VATER Association is. Plus, > what anomalies did the boy have? Definitely > Vertebral, but what else? They had such an > opportunity and I personally think they blew it > by not giving the info. > > Can someone explai! n to me why it looked like > they opened his chest and not his back? Or maybe > they had turned him when they were waiting for > his legs to respond? > > One thing that I did notice about is he > has facial dysplacia as well. I hope everything > works out for him, he is a cutie. > Gail > ****************************************** > > ------------------------------------------------ > > > Use Photomail to share photos without annoying > attachments. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 has it too. Gail****************************************** Re: Miracle Workers >infantile scoliosis treatment >> Hi everyone! My name is Arnold and I am very> curious about VACTERL. My son has scoliosis and he> is now in his third cast from Shriners in SLC. They> had never mentioned this to me before but my son has> at least 3 of those symptoms. He had a> hemivertebrae, he had atrial septal defect that was> repaired, and he had polydactyly at birth. I am now> just wondering why this dx was never mentioned to> me. I met while we were in SLC and since I'd> never heard of this, we didn't talk about it. Hi> , if you are reading this! I am glad to hear> that Olivia is doing well! She has been in our> prayers! Anyway, are Dr.s guarded about giving this> dx? I cannot tell you how excited I am right now to> just know that all of these things aren't as random> as previously thought and that others have these> same things. I have been keeping up with the posts> on this site since we came back from SLC but just> hadn't had the time to do the research I had wanted> yet about all the differe! nt dx's on this site.> Anyway, any input would be greatly appreciated!> thank you> '> Arnold> Kasey Arnold, son, scoliosis> Stablein <mariahmarieinpa@...> wrote:>> I CRIED THROUGH THE WHOLE SHOW!> I was thinking they could get to his spine through> his chest? After only 2 mos he seemed to be very> mobile and that shocked me. > Not as educational as I thought is was going to> be.> > The DBS they did on the girl was shocking as well> cause 1 yr 1/2 ago - a neurosurgeon was talking> about doing that procedure on me for Geniculate> Neuralgia (chronic ear-pain for 3 yrs) I am so> much better now and to think I could of had to go> through that! I believe it to be atypical facial> pain and my pain is mild now. > I was so happy ! for her to be able to maintain> some normalcy in her life now!> > I'm not sure about shows like that all I do is cry> and that little boy's dad would not quit crying! > Even like Swan Princess and Hallmark commercials -> oh yeah even the on-star radio commercials - they> all make me cry - BIG BABY I AM!>> "Gail M. Kimball" <gmkimball@...> wrote:>> Anyone watch?? I did, and I was somewhat> disappointed. They did not even give an> explanation of what VATER Association is. Plus,> what anomalies did the boy have? Definitely> Vertebral, but what else? They had such an> opportunity and I personally think they blew it> by not giving the info.> > Can someone explai! n to me why it looked like> they opened his chest and not his back? Or maybe> they had turned him when they were waiting for> his legs to respond?> > One thing that I did notice about is he> has facial dysplacia as well. I hope everything> works out for him, he is a cutie.> Gail> ******************************************>> ------------------------------------------------>> > Use Photomail to share photos without annoying> attachments.>> __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I thought the show quite disappointing too! I much prefered the sweet girl with Tourettes! Which considering Siobhan is scheduled to get her VEPTR implants in a couple of months, did suprise me!!! I expected the network to " sensationalize " it - for ratings!!!! I'd also read that Dr Skaggs isn't a VEPTR doc - So wasn't too suprised that they didn't refer to VEPTR by name... What *shocked* me was when they picked up under the arms!!!!!! OUCH!!!!!!! Even I know that is an absolute no-no!!! Also, I would have expected before AND after x-rays.... Does anyone know if they do 'wake' the kids up during the impants - Gail, Shellie? - I've heard that is routine for fusion.... Next time I'll stick to The Learning Channel or a proper medical show!! Jacki > Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. > > Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? > > One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. > > Gail > ****************************************** > > > > ------------------------------------------------------------------- --------- > > Use Photomail to share photos without annoying attachments. > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I, too, cried almost the entire show and woke up with puffy eyes this a.m. I was also disappointed at the lack of detailed information. I feel they really glossed over most of the situation but was touched by the emotional aspect of it all. That they depicted perfectly! Why was awake and alert before the procedure? Is this normal? No "happy juice" on the west coast? That part upset me. Huge fan of "happy juice", mom to and Jake Claflin <noellesmommy@...> wrote: I was somewhat disappointed as well. I don't think they gave enough information. For example, they didn't explain about needing more surgeries as he grows. They only showed his before x-ray...I think it would have been more powerful if they had shown the after film. It would have been nice to see his back after surgery too. I also thought that they should have showed them explaining the surgery to the parents in detail versus the cursory explanation they gave the parents in the clip that they showed. I am sure the parents got much more information before agreeing to the surgery than what they showed on TV. They should have also explained why VEPTR might be preferable over other surgery options, etc, etc, etc. I did think they showed the emotional toll this takes on the parents and the child himself very well. I think I cried the entire way through this show. When they were wheeling him into surgery and he was crying like that, it just tore me to pieces! And, I also really felt for the girl with Tourettes. I am glad they were able to help her. Noelle (12-2-01)Ian (8-15-04) Miracle Workers Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. Gail****************************************** Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I, too, cried almost the entire show and woke up with puffy eyes this a.m. I was also disappointed at the lack of detailed information. I feel they really glossed over most of the situation but was touched by the emotional aspect of it all. That they depicted perfectly! Why was awake and alert before the procedure? Is this normal? No "happy juice" on the west coast? That part upset me. Huge fan of "happy juice", mom to and Jake Claflin <noellesmommy@...> wrote: I was somewhat disappointed as well. I don't think they gave enough information. For example, they didn't explain about needing more surgeries as he grows. They only showed his before x-ray...I think it would have been more powerful if they had shown the after film. It would have been nice to see his back after surgery too. I also thought that they should have showed them explaining the surgery to the parents in detail versus the cursory explanation they gave the parents in the clip that they showed. I am sure the parents got much more information before agreeing to the surgery than what they showed on TV. They should have also explained why VEPTR might be preferable over other surgery options, etc, etc, etc. I did think they showed the emotional toll this takes on the parents and the child himself very well. I think I cried the entire way through this show. When they were wheeling him into surgery and he was crying like that, it just tore me to pieces! And, I also really felt for the girl with Tourettes. I am glad they were able to help her. Noelle (12-2-01)Ian (8-15-04) Miracle Workers Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. Gail****************************************** Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Hi Betty It seems there are a couple of conversations going on at once! I was asking if any of the VEPTR mums knew if it was common protocol to wake a child midway thru a VEPTR implant! Or if they did it on the show as they knew little was having a problem? I have read that it is common to wake someone midway thru a " regular fusion " to check if they can wiggle their toes - which sounds really scary! Apparently they don't know a thing about it when they do come round. Anyhoo - I don't have first hand experience with this - Just read about it.... Jacki > > Jackie, > > > > Why would they wake up the child during the fusion? I had one and they > didn't wake me up. That's why I'm asking, is this something new? > > > > Thanks, > > > > Betty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Hi Shellie I taped it, but probably won't watch it again. I *may* get into trouble here, but I do wonder at what kind of doc wants to do this kind of " sensational " kind of show? I don't think it was medically informative, it just missed so much! I know Dr Emans (in Boston) did a web cast, which was totally real, and seemed to me to be medically instructive to many, and of course wasn't televised by ABC!!!! LOL This ABC show missed so much.... Like the after x-ray and the long- term 'maintenance' of this kind of " growth rod " ? I'm just so thankful to have Dr D'Astous as Siobhan's Ortho, and that we're going to be lucky enough to have Dr do her implants with him in May! Hugs to the family! Jacki > > Anyone watch?? I did, and I was somewhat disappointed. They > did not even give an explanation of what VATER Association is. Plus, > what anomalies did the boy have? Definitely Vertebral, but what > else? They had such an opportunity and I personally think they blew > it by not giving the info. > > > > Can someone explain to me why it looked like they opened his > chest and not his back? Or maybe they had turned him when they were > waiting for his legs to respond? > > > > One thing that I did notice about is he has facial > dysplacia as well. I hope everything works out for him, he is a > cutie. > > > > Gail > > ****************************************** > > > > > > > > ----------------------------------------------------------------- -- > --------- > > > > Use Photomail to share photos without annoying attachments. > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Thank you Deshea, for the links! Much appreciated! "Deshea L. " <deshea@...> wrote: cynthia,i found one more thing:http://www.vaterconnection.org/this is specifically a website to connect parents of kids whohave this condition.deshea---- Original message ---->Date: Tue, 14 Mar 2006 09:34:36 -0800 (PST)>From: cynthia arnold <sassyredcyn@...> >Subject: Re: Miracle Workers >infantile scoliosis treatment >> Hi everyone! My name is Arnold and I am very> curious about VACTERL. My son has scoliosis and he> is now in his third cast from Shriners in SLC. They> had never mentioned this to me before but my son has> at least 3 of those symptoms. He had a> hemivertebrae, he had atrial septal defect that was> repaired, and he had polydactyly at birth. I am now> just wondering why this dx was never mentioned to> me. I met while we were in SLC and since I'd> never heard of this, we didn't talk about it. Hi> , if you are reading this! I am glad to hear> that Olivia is doing well! She has been in our> prayers! Anyway, are Dr.s guarded about giving this> dx? I cannot tell you how excited I am right now to> just know that all of these things aren't as random> as previously thought and that others have these> same things. I have been keeping up with the posts> on this site since we came back from SLC but just> hadn't had the time to do the research I had wanted> yet about all the differe! nt dx's on this site.> Anyway, any input would be greatly appreciated!> thank you> '> Arnold> Kasey Arnold, son, scoliosis> Stablein <mariahmarieinpa@...> wrote:>> I CRIED THROUGH THE WHOLE SHOW!> I was thinking they could get to his spine through> his chest? After only 2 mos he seemed to be very> mobile and that shocked me. > Not as educational as I thought is was going to> be.> > The DBS they did on the girl was shocking as well> cause 1 yr 1/2 ago - a neurosurgeon was talking> about doing that procedure on me for Geniculate> Neuralgia (chronic ear-pain for 3 yrs) I am so> much better now and to think I could of had to go> through that! I believe it to be atypical facial> pain and my pain is mild now. > I was so happy ! for her to be able to maintain> some normalcy in her life now!> > I'm not sure about shows like that all I do is cry> and that little boy's dad would not quit crying! > Even like Swan Princess and Hallmark commercials -> oh yeah even the on-star radio commercials - they> all make me cry - BIG BABY I AM!>> "Gail M. Kimball" <gmkimball@...> wrote:>> Anyone watch?? I did, and I was somewhat> disappointed. They did not even give an> explanation of what VATER Association is. Plus,> what anomalies did the boy have? Definitely> Vertebral, but what else? They had such an> opportunity and I personally think they blew it> by not giving the info.> > Can someone explai! n to me why it looked like> they opened his chest and not his back? Or maybe> they had turned him when they were waiting for> his legs to respond?> > One thing that I did notice about is he> has facial dysplacia as well. I hope everything> works out for him, he is a cutie.> Gail> ******************************************>> ------------------------------------------------>> > Use Photomail to share photos without annoying> attachments.>> __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 I was really, really hoping for some good technical information, so I was bummed out. Considering it was a show that's out to hit the emotions of a main stream audience I guess they thought it was better to just be vague, and not give all the details only a few of us would appreciate. I think they went in from the back first, and then opened the chest when it was time to break the ribs fusions apart in the front and put in a few more rods. I might be wrong about that; they summed it all up so quickly. I knew there was going to be a happy ending, but I was still terrified during the temporary paralysis. I think for me the most alarming part was the doctor didn't even know why it was happening. Also as a mom I'm very upset to think of the pain and fear a child might have waking up during surgery! I had no idea they would ever have to do that to someone on purpose, scary. I also kept wondering what other anomalies are part of condition. To me his neck looked a little short even after the surgery, so I wondered about klippel- feil but of course I've got that syndrome on my brain. LOL Over all I bet it ends up being a good seed of publicity, people will just have to do their research in other places. Mama to Keegan > > Anyone watch?? I did, and I was somewhat disappointed. They > did not even give an explanation of what VATER Association is. Plus, > what anomalies did the boy have? Definitely Vertebral, but what > else? They had such an opportunity and I personally think they blew > it by not giving the info. > > > > Can someone explain to me why it looked like they opened his > chest and not his back? Or maybe they had turned him when they were > waiting for his legs to respond? > > > > One thing that I did notice about is he has facial > dysplacia as well. I hope everything works out for him, he is a > cutie. > > > > Gail > > ****************************************** > > > > > > > > ------------------------------------------------------------------ - > --------- > > > > Use Photomail to share photos without annoying attachments. > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Deshea, Hope things are well. Haven't been on the board in awhile due to much travelling. Marissa is doing extremely well. Thanks to all for the diaper tips, we've used a little bit of many suggestions to come up with something that has worked tremendously. Pull off tabs of diaper, tuck under cast, use tenderskin tape to tape diaper to cast/shirt to keep up and then use pull up to keep diaper in place. A little pricy but effective. Hope all is well with you and family. Jerry Marissa's Dad Re: Miracle Workers >infantile scoliosis treatment >> Hi everyone! My name is Arnold and I am very> curious about VACTERL. My son has scoliosis and he> is now in his third cast from Shriners in SLC. They> had never mentioned this to me before but my son has> at least 3 of those symptoms. He had a> hemivertebrae, he had atrial septal defect that was> repaired, and he had polydactyly at birth. I am now> just wondering why this dx was never mentioned to> me. I met while we were in SLC and since I'd> never heard of this, we didn't talk about it. Hi> , if you are reading this! I am glad to hear> that Olivia is doing well! She has been in our> prayers! Anyway, are Dr.s guarded about giving this> dx? I cannot tell you how excited I am right now to> just know that all of these things aren't as random> as previously thought and that others have these> same things. I have been keeping up with the posts> on this site since we came back from SLC but just> hadn't had the time to do the research I had wanted> yet about all the differe! nt dx's on this site.> Anyway, any input would be greatly appreciated!> thank you> '> Arnold> Kasey Arnold, son, scoliosis> Stablein <mariahmarieinpa@...> wrote:>> I CRIED THROUGH THE WHOLE SHOW!> I was thinking they could get to his spine through> his chest? After only 2 mos he seemed to be very> mobile and that shocked me. > Not as educational as I thought is was going to> be.> > The DBS they did on the girl was shocking as well> cause 1 yr 1/2 ago - a neurosurgeon was talking> about doing that procedure on me for Geniculate> Neuralgia (chronic ear-pain for 3 yrs) I am so> much better now and to think I could of had to go> through that! I believe it to be atypical facial> pain and my pain is mild now. > I was so happy ! for her to be able to maintain> some normalcy in her life now!> > I'm not sure about shows like that all I do is cry> and that little boy's dad would not quit crying! > Even like Swan Princess and Hallmark commercials -> oh yeah even the on-star radio commercials - they> all make me cry - BIG BABY I AM!>> "Gail M. Kimball" <gmkimball@...> wrote:>> Anyone watch?? I did, and I was somewhat> disappointed. They did not even give an> explanation of what VATER Association is. Plus,> what anomalies did the boy have? Definitely> Vertebral, but what else? They had such an> opportunity and I personally think they blew it> by not giving the info.> > Can someone explai! n to me why it looked like> they opened his chest and not his back? Or maybe> they had turned him when they were waiting for> his legs to respond?> > One thing that I did notice about is he> has facial dysplacia as well. I hope everything> works out for him, he is a cutie.> Gail> ******************************************>> ------------------------------------------------>> > Use Photomail to share photos without annoying> attachments.>> __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Boy I should have bought stock in tissues that day, I too cried uncontrollably the entire show. I don't believe it was informative enough either, but just the thought of what he was undergoing and to know how lucky we are that our dd will hopefully be able to be corrected with casting and not have surgery. The father crying before he went back for surgery is pretty much how I feel everytime Evanlee goes back to be casted. Even though I know she is being cut on, the thought of her being put under and me not being with her or the first person she sees when she wakes up rips me apart everytime. I am also thankful that our dd is so young that she hasn't a clue whats going on and doesn't act like she is scared going back. I would have liked to have more information on the boy in the show though to know how old he was when it was diagnosed, what other medical conditions he has, etc. But when he went paralyzed during the surgery I was scared to death. Definetely held my baby alot more that night. , mom of Evanlee & is (9 months) Viveiros <jviv314@...> wrote: I, too, cried almost the entire show and woke up with puffy eyes this a.m. I was also disappointed at the lack of detailed information. I feel they really glossed over most of the situation but was touched by the emotional aspect of it all. That they depicted perfectly! Why was awake and alert before the procedure? Is this normal? No "happy juice" on the west coast? That part upset me. Huge fan of "happy juice", mom to and Jake Claflin <noellesmommy@...> wrote: I was somewhat disappointed as well. I don't think they gave enough information. For example, they didn't explain about needing more surgeries as he grows. They only showed his before x-ray...I think it would have been more powerful if they had shown the after film. It would have been nice to see his back after surgery too. I also thought that they should have showed them explaining the surgery to the parents in detail versus the cursory explanation they gave the parents in the clip that they showed. I am sure the parents got much more information before agreeing to the surgery than what they showed on TV. They should have also explained why VEPTR might be preferable over other surgery options, etc, etc, etc. I did think they showed the emotional toll this takes on the parents and the child himself very well. I think I cried the entire way through this show. When they were wheeling him into surgery and he was crying like that, it just tore me to pieces! And, I also really felt for the girl with Tourettes. I am glad they were able to help her. Noelle (12-2-01)Ian (8-15-04) Miracle Workers Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. Gail****************************************** Use Photomail to share photos without annoying attachments. Jim and Abercrombie Relax. virus scanning helps detect nasty viruses! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 , the hardest part of the show for me was that same part with him going back into surgery. I am thankful too that Ian doesn't know enough yet to know what is going to happen to him when they take him from me. Noelle (12-2-01)Ian (8-15-04) Miracle Workers Anyone watch?? I did, and I was somewhat disappointed. They did not even give an explanation of what VATER Association is. Plus, what anomalies did the boy have? Definitely Vertebral, but what else? They had such an opportunity and I personally think they blew it by not giving the info. Can someone explain to me why it looked like they opened his chest and not his back? Or maybe they had turned him when they were waiting for his legs to respond? One thing that I did notice about is he has facial dysplacia as well. I hope everything works out for him, he is a cutie. Gail****************************************** Use Photomail to share photos without annoying attachments. Jim and Abercrombie Relax. virus scanning helps detect nasty viruses! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Hi Gail It sounds like the norm isn't to wake kids during the VEPTR - And maybe they don't wake a patient during a fusion any more? I know I read it on various scoliosis sites..... Something to check into in the future.... The lifting under the arms was the most painful thing to watch - Did you see the poor little mite's face? OUCH! And he was still in the hospital!!!!! I agree to have Dr and/ or doing a " proper FDA approved VEPTR " would be well worth watching... Jacki > > Anyone watch?? I did, and I was somewhat disappointed. They > did not even give an explanation of what VATER Association is. Plus, > what anomalies did the boy have? Definitely Vertebral, but what > else? They had such an opportunity and I personally think they blew > it by not giving the info. > > > > Can someone explain to me why it looked like they opened his > chest and not his back? Or maybe they had turned him when they were > waiting for his legs to respond? > > > > One thing that I did notice about is he has facial > dysplacia as well. I hope everything works out for him, he is a > cutie. > > > > Gail > > ****************************************** > > > > > > > > --------------------------------------------------------------- ---- > --------- > > > > Use Photomail to share photos without annoying attachments. > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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