Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Went well. We were scheduled for 12:40, but got a call asking if we could come in earlier. Got there at 10:30, by the time we were seen and left, it was 12:40. Hmmmm... Anyway, her xrays look good. And her next surgery date will be....in 2007! If we go by the " every 4-6 months " standard, her surgery should have been next month. However, the last surgery did so well, that her shoulders are symetrical and she is balanced at this point, so there is no point in expanding the VEPTR right now. She is up to 41.1 inches tall (or 104.3 cm up from 101) so she is gaining height - of course I could have told you that since all her long pants are now capri length! So we can get through the holidays without worrying about a surgery and we will see Dr. C in 2007! Gail Crafting Blog: http://itsmineitsallmine.blogspot.com/ ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 & 04/20/06 Put a little 'TLC' into your scrapbook! Independent TLC Scrapbooking Instructor http:\\www.topline-creations.com\gail --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 congrats, gail! you must be so happy to put that off until she needs it which makes a lot of sense . . . now she can just enjoy the fall and holidays without thinking about surgery. yippeee! my best, deshea On Sep 11, 2006, at 6:28 PM, Gail Kimball wrote: > Went well. We were scheduled for 12:40, but got a call asking if we > could come in earlier. Got there at 10:30, by the time we were seen > and > left, it was 12:40. Hmmmm... > > Anyway, her xrays look good. And her next surgery date will be....in > 2007! If we go by the " every 4-6 months " standard, her surgery should > have been next month. However, the last surgery did so well, that her > shoulders are symetrical and she is balanced at this point, so > there is > no point in expanding the VEPTR right now. > > She is up to 41.1 inches tall (or 104.3 cm up from 101) so she is > gaining height - of course I could have told you that since all her > long > pants are now capri length! > > So we can get through the holidays without worrying about a surgery > and we will see Dr. C in 2007! > > Gail > Crafting Blog: http://itsmineitsallmine.blogspot.com/ > ************************************************ > Mom to , 11/28/98 - ADHD/ODD/SID > and , 02/02/02 - Congenital Scoliosis, VATER Association > (vertebral and renal anomalies), Torticollis, Klippel Feil > Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati > Children's Hospital 3/21/05, VEPTR Expansions: 11/05 & 04/20/06 > > Put a little 'TLC' into your scrapbook! > Independent TLC Scrapbooking Instructor > http:\\www.topline-creations.com\gail > > --------------------------------- > All-new - Fire up a more powerful email and get things > done faster. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 What great news Gail! I am so happy that she'll not have to worry about surgery over the holidays!! Noelle (12-2-01) Ian (8-15-04) Re: 's Ortho Visit Wow congratulations Gail, that is great news. good news makes up for a long wait doesn't it? Are you all mourning the croc hunter over there? We are all so sad. What will we do without all that positive enthusiasm for conservation and love of animals? Love to the big bus girl! Gail Kimball <patsmum2000@...> wrote: Went well. We were scheduled for 12:40, but got a call asking if we could come in earlier. Got there at 10:30, by the time we were seen and left, it was 12:40. Hmmmm... Anyway, her xrays look good. And her next surgery date will be....in 2007! If we go by the " every 4-6 months " standard, her surgery should have been next month. However, the last surgery did so well, that her shoulders are symetrical and she is balanced at this point, so there is no point in expanding the VEPTR right now. She is up to 41.1 inches tall (or 104.3 cm up from 101) so she is gaining height - of course I could have told you that since all her long pants are now capri length! So we can get through the holidays without worrying about a surgery and we will see Dr. C in 2007! Gail Crafting Blog: http://itsmineitsallmine.blogspot.com/ ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 & 04/20/06 Put a little 'TLC' into your scrapbook! Independent TLC Scrapbooking Instructor http:\\www.topline-creations.com\gail --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 G'day Bert! Long time no talk to! How is YOUR big girl? That is awesome news about not needing surgery until next year - I was thrilled. yes, my family is mourning the loss of Steve Irwin. My son broke down in tears and said " But I loved him and that show. " I tried to explain that it was a freak accident and that Steve died doing what he loved to do. Of course, what bugs me is as soon as the poor guy dies, all these people come out of the woodwork saying he did more harm than good, he exploited the animals etc. bert lehane <bert_lehane@...> wrote: Wow congratulations Gail, that is great news. good news makes up for a long wait doesn't it? Are you all mourning the croc hunter over there? We are all so sad. What will we do without all that positive enthusiasm for conservation and love of animals? Love to the big bus girl! Gail Kimball wrote: Went well. We were scheduled for 12:40, but got a call asking if we could come in earlier. Got there at 10:30, by the time we were seen and left, it was 12:40. Hmmmm... Anyway, her xrays look good. And her next surgery date will be....in 2007! If we go by the " every 4-6 months " standard, her surgery should have been next month. However, the last surgery did so well, that her shoulders are symetrical and she is balanced at this point, so there is no point in expanding the VEPTR right now. She is up to 41.1 inches tall (or 104.3 cm up from 101) so she is gaining height - of course I could have told you that since all her long pants are now capri length! So we can get through the holidays without worrying about a surgery and we will see Dr. C in 2007! Gail Crafting Blog: http://itsmineitsallmine.blogspot.com/ ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 & 04/20/06 Put a little 'TLC' into your scrapbook! Independent TLC Scrapbooking Instructor http:\\www.topline-creations.com\gail --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 Noelle (12-2-01) Ian (8-15-04) 's ortho visit Yes, I am cross posting this - easier to type it once. We got kinda good news and kinda bad news. The kinds good news is that doesn't need an expansion again. So this means it has been a year (in April) since her last expansion. Her " surgery side " (the left) is still a bit higher than the " non-surgery side " so we don't want to make it more out of sync. So that is one reason for not having the expansion done. Another reason for not having it done is the kinda bad news. She is developing some (and I hope I have the terminology correct - I have asked Dr. Crawford's nurse to confirm it for me) structural kyphosis. What this means is that some of her discs (not the vertabrae, she does have some hemivertabrae, but this is different) are not staying " squared " as they should. They are becoming more of a wedged shape where one part is narrowing and the other is enlarging. He assured me that her spine, itself, is in no way compromised, so that is good. As he put it, with , as we work on one issue, another issue pops up. He is going to be talking about her at another symposium in the next couple of weeks. I would love to know just how many she has been brought up at, I can guess at about 8-10. So, I know he is ALWAYS working towards the best treatment plan for her. We will see him again in June. Now, the cool part of the visit. While sitting in the waiting room, there was an older girl - probably 16 or 17, and her mom asked me if had scoliosis - I said yes and explained that had had the VEPTR etc. Her daughter had had fusion surgery at about the same time that had her VEPTR and she said that she remembered reading about in the paper. And that looked great and how did it go etc. Well, another mom, with a girl about 3 or 4 came over and said, " I hate to be nosy, but I heard you talking about the VEPTR, could I ask you some questions? They are talking about that surgery for my daughter and I have no idea what to expect etc. " Of course, right then they called 's name. So while we were waiting in the exam room, I ran out and gave that mom my email address and told her to contact me. Her daughter was so cute and just a bundle of energy - much like . , Dr. Crawford's nurse, saw me and asked " Are you passing out your name again? " So hopefully, I can help them a bit. And there we are. Gail Crafting Blog: http://itsmineitsallmine.blogspot.com/ ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 & 04/20/06 Put a little 'TLC' into your scrapbook! Independent TLC Scrapbooking Instructor http:\\www.topline-creations.com\gail --------------------------------- Want to start your own business? Learn how on Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 Noelle (12-2-01) Ian (8-15-04) 's ortho visit Yes, I am cross posting this - easier to type it once. We got kinda good news and kinda bad news. The kinds good news is that doesn't need an expansion again. So this means it has been a year (in April) since her last expansion. Her " surgery side " (the left) is still a bit higher than the " non-surgery side " so we don't want to make it more out of sync. So that is one reason for not having the expansion done. Another reason for not having it done is the kinda bad news. She is developing some (and I hope I have the terminology correct - I have asked Dr. Crawford's nurse to confirm it for me) structural kyphosis. What this means is that some of her discs (not the vertabrae, she does have some hemivertabrae, but this is different) are not staying " squared " as they should. They are becoming more of a wedged shape where one part is narrowing and the other is enlarging. He assured me that her spine, itself, is in no way compromised, so that is good. As he put it, with , as we work on one issue, another issue pops up. He is going to be talking about her at another symposium in the next couple of weeks. I would love to know just how many she has been brought up at, I can guess at about 8-10. So, I know he is ALWAYS working towards the best treatment plan for her. We will see him again in June. Now, the cool part of the visit. While sitting in the waiting room, there was an older girl - probably 16 or 17, and her mom asked me if had scoliosis - I said yes and explained that had had the VEPTR etc. Her daughter had had fusion surgery at about the same time that had her VEPTR and she said that she remembered reading about in the paper. And that looked great and how did it go etc. Well, another mom, with a girl about 3 or 4 came over and said, " I hate to be nosy, but I heard you talking about the VEPTR, could I ask you some questions? They are talking about that surgery for my daughter and I have no idea what to expect etc. " Of course, right then they called 's name. So while we were waiting in the exam room, I ran out and gave that mom my email address and told her to contact me. Her daughter was so cute and just a bundle of energy - much like . , Dr. Crawford's nurse, saw me and asked " Are you passing out your name again? " So hopefully, I can help them a bit. And there we are. Gail Crafting Blog: http://itsmineitsallmine.blogspot.com/ ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 & 04/20/06 Put a little 'TLC' into your scrapbook! Independent TLC Scrapbooking Instructor http:\\www.topline-creations.com\gail --------------------------------- Want to start your own business? Learn how on Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 I am glad to hear that she isn't going to need an expansion. I am sorry to hear about the kyphosis, but hopefully it is something that won't progress beyond what it is now. I will keep my fingers crossed for her. That is great that you are in contact with another parent about the VEPTR. It's always great to help someone out who is going through the same thing as you. Noelle (12-2-01) Ian (8-15-04) 's ortho visit Yes, I am cross posting this - easier to type it once. We got kinda good news and kinda bad news. The kinds good news is that doesn't need an expansion again. So this means it has been a year (in April) since her last expansion. Her " surgery side " (the left) is still a bit higher than the " non-surgery side " so we don't want to make it more out of sync. So that is one reason for not having the expansion done. Another reason for not having it done is the kinda bad news. She is developing some (and I hope I have the terminology correct - I have asked Dr. Crawford's nurse to confirm it for me) structural kyphosis. What this means is that some of her discs (not the vertabrae, she does have some hemivertabrae, but this is different) are not staying " squared " as they should. They are becoming more of a wedged shape where one part is narrowing and the other is enlarging. He assured me that her spine, itself, is in no way compromised, so that is good. As he put it, with , as we work on one issue, another issue pops up. He is going to be talking about her at another symposium in the next couple of weeks. I would love to know just how many she has been brought up at, I can guess at about 8-10. So, I know he is ALWAYS working towards the best treatment plan for her. We will see him again in June. Now, the cool part of the visit. While sitting in the waiting room, there was an older girl - probably 16 or 17, and her mom asked me if had scoliosis - I said yes and explained that had had the VEPTR etc. Her daughter had had fusion surgery at about the same time that had her VEPTR and she said that she remembered reading about in the paper. And that looked great and how did it go etc. Well, another mom, with a girl about 3 or 4 came over and said, " I hate to be nosy, but I heard you talking about the VEPTR, could I ask you some questions? They are talking about that surgery for my daughter and I have no idea what to expect etc. " Of course, right then they called 's name. So while we were waiting in the exam room, I ran out and gave that mom my email address and told her to contact me. Her daughter was so cute and just a bundle of energy - much like . , Dr. Crawford's nurse, saw me and asked " Are you passing out your name again? " So hopefully, I can help them a bit. And there we are. Gail Crafting Blog: http://itsmineitsallmine.blogspot.com/ ************************************************ Mom to , 11/28/98 - ADHD/ODD/SID and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 & 04/20/06 Put a little 'TLC' into your scrapbook! Independent TLC Scrapbooking Instructor http:\\www.topline-creations.com\gail --------------------------------- Want to start your own business? Learn how on Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 Hi Gail Thanks for the update - I was getting worried..... Hmmmm, I'm afraid I don't know much about the " wedging " , though Dr D'Astous did talk about Siobhan having some wedging after casting? Not sure if it's the same kind of thing. Siobhan also had some lumbar kyphosis, but the VEPTR seems to have gotten rid of it. It's great that Dr C is really looking after so well, and she is getting the best care possible - It is important for doctors to compare notes and brainstorm - We know that our kids are all unique and what works for one, doesn't necessarily work for another. Hopefully you connect with this new mum and can help her out - Jacki > > Yes, I am cross posting this - easier to type it once. > > We got kinda good news and kinda bad news. > > The kinds good news is that doesn't need an expansion again. So this means it has been a year (in April) since her last expansion. Her " surgery side " (the left) is still a bit higher than the " non- surgery side " so we don't want to make it more out of sync. So that is one reason for not having the expansion done. Another reason for not having it done is the kinda bad news. She is developing some (and I hope I have the terminology correct - I have asked Dr. Crawford's nurse to confirm it for me) structural kyphosis. > > What this means is that some of her discs (not the vertabrae, she does have some hemivertabrae, but this is different) are not staying " squared " as they should. They are becoming more of a wedged shape where one part is narrowing and the other is enlarging. He assured me that her spine, itself, is in no way compromised, so that is good. > > As he put it, with , as we work on one issue, another issue pops up. He is going to be talking about her at another symposium in the next couple of weeks. I would love to know just how many she has been brought up at, I can guess at about 8-10. So, I know he is ALWAYS working towards the best treatment plan for her. We will see him again in June. > > Now, the cool part of the visit. > > While sitting in the waiting room, there was an older girl - probably 16 or 17, and her mom asked me if had scoliosis - I said yes and explained that had had the VEPTR etc. Her daughter had had fusion surgery at about the same time that had her VEPTR and she said that she remembered reading about in the paper. And that looked great and how did it go etc. > > Well, another mom, with a girl about 3 or 4 came over and said, " I hate to be nosy, but I heard you talking about the VEPTR, could I ask you some questions? They are talking about that surgery for my daughter and I have no idea what to expect etc. " Of course, right then they called 's name. So while we were waiting in the exam room, I ran out and gave that mom my email address and told her to contact me. Her daughter was so cute and just a bundle of energy - much like . , Dr. Crawford's nurse, saw me and asked " Are you passing out your name again? " > > So hopefully, I can help them a bit. And there we are. > > > Gail > Crafting Blog: http://itsmineitsallmine.blogspot.com/ > ************************************************ > Mom to , 11/28/98 - ADHD/ODD/SID > and , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05, VEPTR Expansions: 11/05 & 04/20/06 > > Put a little 'TLC' into your scrapbook! > Independent TLC Scrapbooking Instructor > http:\\www.topline-creations.com\gail > > --------------------------------- > Want to start your own business? Learn how on Small Business. > > Quote Link to comment Share on other sites More sharing options...
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