Guest guest Posted January 28, 2007 Report Share Posted January 28, 2007 Thanks everyone for your responses! I called Shriner's yesterday afternoon to check on the status of our application and we are approved! WOOHOO! Scheduling is supposed to call on Monday. I will go ahead and do the MRI with our doc here and then head to Shriner's. I also posted some pictures of Matson and his big bro Tyler and our little Lily in the photos section. Thanks to everyone! STephanie > " I gave birth to our 3rd child, a little girl we named Lily, on Wednesday " > > > > I think she had it all ready. > > > > Betty > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2007 Report Share Posted January 28, 2007 Hi, I don't get to post too often, but just wanted to mention - you sure do look greatin your hospital picture. I always looked terrible after the babies were born... congrats! > > " I gave birth to our 3rd child, a little girl we named Lily, on > Wednesday " > > > > > > > > I think she had it all ready. > > > > > > > > Betty > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2010 Report Share Posted November 10, 2010 What a hard place to be in. I would really want an x-ray at 6 months but I think I woul go with what the ortho thinks. i would get firm numbers to see if there had been 5 degrees of change. I am in a similar place. Cole was horrible for his last xray and the tanding one was 8 degrees worse but the laying down one 2 better. The dr wants to see us in 6 months a because he thinks it was a bad xray but it is killing me to wait that long given the last x-ray but i going to try really had. Good luck Jenn mommy to cole > > So, my son Dylan has been out of a cast for going on 2 1/2 years now. He has > had follow-up x-rays done at the Shriners Hospital in Tampa and the Shriners > Hospital in Chicago. When he first got out of his cast in Chicago, the doctor > there said he was " perfectly straight " which I took to mean 0 degrees at the > time, but I'm not really for sure he literally meant zero degrees (I have a > feeling based on some comment he made that he didn't really measure it, but just > eyeballed it). He had follow-up visits while he was in a brace and for 6 months > after the brace in Tampa and those consistently showed 3-4 degrees. We flew up > to Chicago for one more visit a year after he was out of his brace (6 months out > of brace, 1 year since the cast) and again, the doctor there just said > " straight " and told us just to get a follow up x-ray once a year. So, we were a > little slow and it has been about 15 months since then and we just had his > pediatrician order an x-ray for him at our local imaging center . This x-ray > shows 5 degrees. Rationally, I am thinking this is probably nothing to be too > alarmed about, since he most likely was never truly at 0 degrees and had the 3-4 > degrees that Tampa was seeing. I realize that measurements can vary slightly > due to his posture or possibly even who is doing the measurement, etc. (and I > don't know that these people had him stand as perfectly straight and still > as Shriners did). However, I still hate to hear a number that is higher than > what we have heard since he has been out of a cast. The pediatrician mentioned > maybe we should do another x-ray in 6 months. I hate all the radiation > exposure, so I'm trying to decide whether to keep with the once a year schedule > (assuming we don't visibly notice anything) or whether to go ahead and do > another follow-up in 6 months. What do you guys think? > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2010 Report Share Posted November 11, 2010 Great to hear that Lil D is doing so well! I would take photos of his back once every 2 weeks to compare. If I noticed in a series of photos that it looked like it was regressing, I would do the xray in 6 months. Nice hearing from you! HRH > So, my son Dylan has been out of a cast for going on 2 1/2 years now. > He has > had follow-up x-rays done at the Shriners Hospital in Tampa and the > Shriners > Hospital in Chicago. When he first got out of his cast in Chicago, the > doctor > there said he was " perfectly straight " which I took to mean 0 degrees at > the > time, but I'm not really for sure he literally meant zero degrees (I have > a > feeling based on some comment he made that he didn't really measure it, > but just > eyeballed it). He had follow-up visits while he was in a brace and for 6 > months > after the brace in Tampa and those consistently showed 3-4 degrees. We > flew up > to Chicago for one more visit a year after he was out of his brace (6 > months out > of brace, 1 year since the cast) and again, the doctor there just said > " straight " and told us just to get a follow up x-ray once a year. So, we > were a > little slow and it has been about 15 months since then and we just had his > pediatrician order an x-ray for him at our local imaging center . This > x-ray > shows 5 degrees. Rationally, I am thinking this is probably nothing to be > too > alarmed about, since he most likely was never truly at 0 degrees and had > the 3-4 > degrees that Tampa was seeing. I realize that measurements can vary > slightly > due to his posture or possibly even who is doing the measurement, > etc. (and I > don't know that these people had him stand as perfectly straight and still > as Shriners did). However, I still hate to hear a number that is higher > than > what we have heard since he has been out of a cast. The pediatrician > mentioned > maybe we should do another x-ray in 6 months. I hate all the radiation > exposure, so I'm trying to decide whether to keep with the once a year > schedule > (assuming we don't visibly notice anything) or whether to go ahead and do > another follow-up in 6 months. What do you guys think? > > Thanks, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2010 Report Share Posted November 11, 2010 Thanks for your opinion . That is a good suggestion. A pediatrician friend of mine thought it wouldn't hurt to just go ahead and do another x-ray in 6 months and then go back to once a year if that one is fine. She didn't seem to be too worried about the radiation from the x-rays, but I was still a little on the fence on what to do. I like your idea though...I might consider that. By the way, as an aside, my friend from college whose son also had infantile scoliosis is in his third cast now and he has responded really well to the treatment. He sounds like he is going to be very similar to Dylan since he was diagnosed and treated at such a young age. He might even be able to be done with casting in December. You can bet that this Thanksgiving my friend and I will be very grateful for you and ISOP. I know I don't frequent the forum as much as I used to because I am just so busy with work and kids activities. But I do check in occassionally and offer what info I can. I also continue to spread the word about ISOP every chance I get and we will certainly continue to contribute what we can in terms of donations. Thanks, From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Thu, November 11, 2010 1:18:45 PMSubject: Re: What Would You Do? Great to hear that Lil D is doing so well! I would take photos of hisback once every 2 weeks to compare. If I noticed in a series of photosthat it looked like it was regressing, I would do the xray in 6 months.Nice hearing from you!HRH> So, my son Dylan has been out of a cast for going on 2 1/2 years now. > He has> had follow-up x-rays done at the Shriners Hospital in Tampa and the> Shriners> Hospital in Chicago. When he first got out of his cast in Chicago, the> doctor> there said he was "perfectly straight" which I took to mean 0 degrees at> the> time, but I'm not really for sure he literally meant zero degrees (I have> a> feeling based on some comment he made that he didn't really measure it,> but just> eyeballed it). He had follow-up visits while he was in a brace and for 6> months> after the brace in Tampa and those consistently showed 3-4 degrees. We> flew up> to Chicago for one more visit a year after he was out of his brace (6> months out> of brace, 1 year since the cast) and again, the doctor there just said> "straight" and told us just to get a follow up x-ray once a year. So, we> were a> little slow and it has been about 15 months since then and we just had his> pediatrician order an x-ray for him at our local imaging center . This> x-ray> shows 5 degrees. Rationally, I am thinking this is probably nothing to be> too> alarmed about, since he most likely was never truly at 0 degrees and had> the 3-4> degrees that Tampa was seeing. I realize that measurements can vary> slightly> due to his posture or possibly even who is doing the measurement,> etc. (and I> don't know that these people had him stand as perfectly straight and still> as Shriners did). However, I still hate to hear a number that is higher> than> what we have heard since he has been out of a cast. The pediatrician> mentioned> maybe we should do another x-ray in 6 months. I hate all the radiation> exposure, so I'm trying to decide whether to keep with the once a year> schedule> (assuming we don't visibly notice anything) or whether to go ahead and do> another follow-up in 6 months. What do you guys think?>> Thanks,> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 , This is such wonderful news about your best friends son w/ PIS!! I wondered about that often and appreciate the update. AMAZING! Thank you for supporting ISOP and helping us spread the word. Not only with Dylans Story and donations, but for spreading the word whenever you see an opportunity. Honestly, just telling Dylans story to people you know/or dont know will go so far. Someone will remember his ET experience and will eventually share it with someone in need. As you know firsthand, with your best friend! What a great story. Please keep in touch! HRH > Thanks for your opinion . That is a good suggestion. A > pediatrician > friend of mine thought it wouldn't hurt to just go ahead and do another > x-ray in > 6 months and then go back to once a year if that one is fine. She didn't > seem > to be too worried about the radiation from the x-rays, but I was still a > little > on the fence on what to do. I like your idea though...I might consider > that. > > By the way, as an aside, my friend from college whose son also had > infantile > scoliosis is in his third cast now and he has responded really well to > the > treatment. He sounds like he is going to be very similar to Dylan since > he was > diagnosed and treated at such a young age. He might even be able to be > done > with casting in December. > > > You can bet that this Thanksgiving my friend and I will be very grateful > for you > and ISOP. I know I don't frequent the forum as much as I used to > because I am > just so busy with work and kids activities. But I do check in > occassionally and > offer what info I can.  I also continue to spread the word about ISOP > every > chance I get and we will certainly continue to contribute what we can in > terms > of donations. > > Thanks, >  > > > > ________________________________ > From: " heather@... " <heather@...> > infantile scoliosis treatment > Sent: Thu, November 11, 2010 1:18:45 PM > Subject: Re: What Would You Do? > >  > Great to hear that Lil D is doing so well! I would take photos of his > back once every 2 weeks to compare. If I noticed in a series of photos > that it looked like it was regressing, I would do the xray in 6 months. > Nice hearing from you! > HRH > >> So, my son Dylan has been out of a cast for going on 2 1/2 years >> now. >> He has >> had follow-up x-rays done at the Shriners Hospital in Tampa and the >> Shriners >> Hospital in Chicago. When he first got out of his cast in Chicago, the >> doctor >> there said he was " perfectly straight " which I took to mean 0 degrees at >> the >> time, but I'm not really for sure he literally meant zero degrees (I >> have >> a >> feeling based on some comment he made that he didn't really measure it, >> but just >> eyeballed it). He had follow-up visits while he was in a brace and >> for 6 >> months >> after the brace in Tampa and those consistently showed 3-4 degrees. >> We >> flew up >> to Chicago for one more visit a year after he was out of his brace (6 >> months out >> of brace, 1 year since the cast) and again, the doctor there just said >> " straight " and told us just to get a follow up x-ray once a year. So, >> we >> were a >> little slow and it has been about 15 months since then and we just had >> his >> pediatrician order an x-ray for him at our local imaging center . >> This >> x-ray >> shows 5 degrees. Rationally, I am thinking this is probably nothing to >> be >> too >> alarmed about, since he most likely was never truly at 0 degrees and had >> the 3-4 >> degrees that Tampa was seeing. I realize that measurements can vary >> slightly >> due to his posture or possibly even who is doing the measurement, >> etc. (and I >> don't know that these people had him stand as perfectly straight and >> still >> as Shriners did).  However, I still hate to hear a number that is >> higher >> than >> what we have heard since he has been out of a cast. The pediatrician >> mentioned >> maybe we should do another x-ray in 6 months. I hate all the radiation >> exposure, so I'm trying to decide whether to keep with the once a year >> schedule >> (assuming we don't visibly notice anything) or whether to go ahead and >> do >> another follow-up in 6 months. What do you guys think? >> >> Thanks, >> >> >> >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2011 Report Share Posted March 20, 2011 Tasha I would do exactly what you are doing. I think you and your doctor are using the right amount of caution. It is exactly where I hope Kieran will someday be but I know is unrealistic to think due to how severe his scoliosis continues to be. It sounds like a slow, conservative weaning process, even if it is taking years, and it really will show you if anything serious have changed, for instance, if the curve suddenly doesn't fit the brace warning bells will go off for sure to get it checked. Congrats on things going so well! It's such a short time and soon is passed. And it sounds like no one there has a problem with it. Boy do I dream of nighttime bracing or 14 -16 hours. The future will unfold how it unfolds in the end, but I think you and are doing a fantastic job of managing his curve! Also his needs will be very different than the needs of any other kid, most likely. Anyways, keep up the great care of your boy, and congratulations on all the successes! Shauna Leamy mother of Kieran, Kelsey and > > OK so now I am second guessing myself. > I ask any of you.........what would you do in my shoes? > has been in a brace since September 2007. His curve has gone from 15 to 8 > to 11 to 14 to 11 and up and down and up and down. Currently 11 degrees just a > few weeks ago. So from what I see it has basically stayed the same. The brace > has held his curve.  > Would you let your child go completely without the brace or night time only?? > He has never had a consistent pattern. It goes up and down. > There is no science to this so at what point do you just let the brace go and > see what happens? Do I risk all the years and hard work we went through to just > see what will happen? > Thoughts? >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Tasha Fontenot <ryanswalk@...> > infantile scoliosis treatment > Sent: Sun, March 20, 2011 1:31:50 PM > Subject: Re: Checking In & " School Age Brace " & Tasha > >  > Hi , > Good to hear from you! Are you still on bedrest? > Hope everything turns out great for Noah on his checkup. Keep me posted. > > Regarding : that 11 degrees was out of brace.  's doctor really does not > have a desired mark/number. And is very conservative. > Sure I'll admit it was a little frustrating, but I am fine with it for now. He > has been in a brace for so long it seems kinda scary at this point to just walk > away from it.  We were given three choices.....continue what we were doing(14-16 > hours a day), night time only or no brace.  > We decided on night time.  With freedom. We allow him to go brace free at least > two nights a week. He seems to be fine with it. > > Depending on his next check-up and xray we will push for no brace. For now we > are good. > Thanks for asking! >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Borlik <christina_borlik@...> > infantile scoliosis <infantile scoliosis treatment > > Sent: Sun, March 20, 2011 11:29:41 AM > Subject: Checking In & " School Age Brace " & Tasha > >  > ~ > > > > > > . > Hello everyone, > I've been absent for awhile.  I've been on pregnancy bedrest for the past 2 > months and therefore haven't been able to sit at the computer much.  I've fallen > behind on many posts, but I did want to respond to a couple recent ones. > > First, an update on my kiddos...Noah is still brace-free (it's been almost 1 > year!)  He'll have an x-ray taken locally in May and we'll ship it to SLC for > his doc to review.  As you may remember he did progress a bit when we had his 6 > month follow-up x-ray taken in the fall.  So depending on the measurement this > spring...we may be back in SLC this summer for a brace. > > Mariella had her 2 year check-up recently and her back is still straight.  No > x-ray was taken.  We'll continue to monitor her.  But so far so good  > > Baby #3 is due 5/5 and we'll be sure to have their spine checked as well  : ) > > a - My son is in Kindergarden and may be entering 1st grade in a brace > (fingers crossed though that this isn't the case.)  I was so glad to read your > post and hear that your daughter is doing well in school with a brace.  And I > too am interested as to whether or not there is a group/place for us parents of > school age (non-teens) that are dealing with braces.  Let me know if you find > any and/or we can stay in touch via this group too for support. > > Tasha - I was surprised to read that is still being braced at 11*.  Is that > his in-brace measurement?  As you know, I'm pretty nervous that Noah too will > have to be braced " long-term. "  Of course we'll do whatever it takes to > prevent/postpone surgery, but how frustrating that our little boys are SO CLOSE > to that desired under 10* mark. > > Hope everyone is well. > ~ > > Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently > treatment-free at 13* > And Mariella - 2 years old, Resolved Infantile Scoliosis > > > school age brace > Posted by: " ericazvt "  mczim4@...   ericazvt > Sat Mar 19, 2011 10:33 am (PDT) > > > I don't have much experience to offer yet, but I can say that about one month in > to brace wearing, my first grader is doing fine with the social aspect of it. I > imagine it will get much harder in coming years when being different will be > tougher and tougher. At the same time, I agree that having a difference can > instill toughness and confidence. Nadia even announced today that she'd > forgetten already about getting a sticker for each day (worn proudly right on > the brace) - that all she cared about any more was wearing the brace (proudly). > She feels like it's a challenge she has met -- " hard but good " is the phrase we > tend to use for challenges. I hope I'm not jinxing myself as I do whenever I > write about parenting... > Our goal is to avoid surgery before she's at full height. No one ever presented > the goal of coming to zero. I guess that's because we were never introduced to > casting as an option when she was younger. (I did read about it but didn't > pursue it - pretty naively - because of her sensory and attachment and eating > and growth issues.) > > Two questions - are there any other school age children on this list? > > And - Anyone have a source for nice thin flat-seamed tshirts to wear under the > brace. I found the SOFT brand and ordered a few that have been good, but they > don't have enough of the " Right " colors. > > Thanks to those who responded when I emailed before. > > a in Vermont > mom of Nadia 28-36 in her first brace, chiari, detethering, etc etc > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2011 Report Share Posted March 20, 2011 Tasha I would do exactly what you are doing. I think you and your doctor are using the right amount of caution. It is exactly where I hope Kieran will someday be but I know is unrealistic to think due to how severe his scoliosis continues to be. It sounds like a slow, conservative weaning process, even if it is taking years, and it really will show you if anything serious have changed, for instance, if the curve suddenly doesn't fit the brace warning bells will go off for sure to get it checked. Congrats on things going so well! It's such a short time and soon is passed. And it sounds like no one there has a problem with it. Boy do I dream of nighttime bracing or 14 -16 hours. The future will unfold how it unfolds in the end, but I think you and are doing a fantastic job of managing his curve! Also his needs will be very different than the needs of any other kid, most likely. Anyways, keep up the great care of your boy, and congratulations on all the successes! Shauna Leamy mother of Kieran, Kelsey and > > OK so now I am second guessing myself. > I ask any of you.........what would you do in my shoes? > has been in a brace since September 2007. His curve has gone from 15 to 8 > to 11 to 14 to 11 and up and down and up and down. Currently 11 degrees just a > few weeks ago. So from what I see it has basically stayed the same. The brace > has held his curve.  > Would you let your child go completely without the brace or night time only?? > He has never had a consistent pattern. It goes up and down. > There is no science to this so at what point do you just let the brace go and > see what happens? Do I risk all the years and hard work we went through to just > see what will happen? > Thoughts? >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Tasha Fontenot <ryanswalk@...> > infantile scoliosis treatment > Sent: Sun, March 20, 2011 1:31:50 PM > Subject: Re: Checking In & " School Age Brace " & Tasha > >  > Hi , > Good to hear from you! Are you still on bedrest? > Hope everything turns out great for Noah on his checkup. Keep me posted. > > Regarding : that 11 degrees was out of brace.  's doctor really does not > have a desired mark/number. And is very conservative. > Sure I'll admit it was a little frustrating, but I am fine with it for now. He > has been in a brace for so long it seems kinda scary at this point to just walk > away from it.  We were given three choices.....continue what we were doing(14-16 > hours a day), night time only or no brace.  > We decided on night time.  With freedom. We allow him to go brace free at least > two nights a week. He seems to be fine with it. > > Depending on his next check-up and xray we will push for no brace. For now we > are good. > Thanks for asking! >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Borlik <christina_borlik@...> > infantile scoliosis <infantile scoliosis treatment > > Sent: Sun, March 20, 2011 11:29:41 AM > Subject: Checking In & " School Age Brace " & Tasha > >  > ~ > > > > > > . > Hello everyone, > I've been absent for awhile.  I've been on pregnancy bedrest for the past 2 > months and therefore haven't been able to sit at the computer much.  I've fallen > behind on many posts, but I did want to respond to a couple recent ones. > > First, an update on my kiddos...Noah is still brace-free (it's been almost 1 > year!)  He'll have an x-ray taken locally in May and we'll ship it to SLC for > his doc to review.  As you may remember he did progress a bit when we had his 6 > month follow-up x-ray taken in the fall.  So depending on the measurement this > spring...we may be back in SLC this summer for a brace. > > Mariella had her 2 year check-up recently and her back is still straight.  No > x-ray was taken.  We'll continue to monitor her.  But so far so good  > > Baby #3 is due 5/5 and we'll be sure to have their spine checked as well  : ) > > a - My son is in Kindergarden and may be entering 1st grade in a brace > (fingers crossed though that this isn't the case.)  I was so glad to read your > post and hear that your daughter is doing well in school with a brace.  And I > too am interested as to whether or not there is a group/place for us parents of > school age (non-teens) that are dealing with braces.  Let me know if you find > any and/or we can stay in touch via this group too for support. > > Tasha - I was surprised to read that is still being braced at 11*.  Is that > his in-brace measurement?  As you know, I'm pretty nervous that Noah too will > have to be braced " long-term. "  Of course we'll do whatever it takes to > prevent/postpone surgery, but how frustrating that our little boys are SO CLOSE > to that desired under 10* mark. > > Hope everyone is well. > ~ > > Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently > treatment-free at 13* > And Mariella - 2 years old, Resolved Infantile Scoliosis > > > school age brace > Posted by: " ericazvt "  mczim4@...   ericazvt > Sat Mar 19, 2011 10:33 am (PDT) > > > I don't have much experience to offer yet, but I can say that about one month in > to brace wearing, my first grader is doing fine with the social aspect of it. I > imagine it will get much harder in coming years when being different will be > tougher and tougher. At the same time, I agree that having a difference can > instill toughness and confidence. Nadia even announced today that she'd > forgetten already about getting a sticker for each day (worn proudly right on > the brace) - that all she cared about any more was wearing the brace (proudly). > She feels like it's a challenge she has met -- " hard but good " is the phrase we > tend to use for challenges. I hope I'm not jinxing myself as I do whenever I > write about parenting... > Our goal is to avoid surgery before she's at full height. No one ever presented > the goal of coming to zero. I guess that's because we were never introduced to > casting as an option when she was younger. (I did read about it but didn't > pursue it - pretty naively - because of her sensory and attachment and eating > and growth issues.) > > Two questions - are there any other school age children on this list? > > And - Anyone have a source for nice thin flat-seamed tshirts to wear under the > brace. I found the SOFT brand and ordered a few that have been good, but they > don't have enough of the " Right " colors. > > Thanks to those who responded when I emailed before. > > a in Vermont > mom of Nadia 28-36 in her first brace, chiari, detethering, etc etc > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2011 Report Share Posted March 20, 2011 Tasha I would do exactly what you are doing. I think you and your doctor are using the right amount of caution. It is exactly where I hope Kieran will someday be but I know is unrealistic to think due to how severe his scoliosis continues to be. It sounds like a slow, conservative weaning process, even if it is taking years, and it really will show you if anything serious have changed, for instance, if the curve suddenly doesn't fit the brace warning bells will go off for sure to get it checked. Congrats on things going so well! It's such a short time and soon is passed. And it sounds like no one there has a problem with it. Boy do I dream of nighttime bracing or 14 -16 hours. The future will unfold how it unfolds in the end, but I think you and are doing a fantastic job of managing his curve! Also his needs will be very different than the needs of any other kid, most likely. Anyways, keep up the great care of your boy, and congratulations on all the successes! Shauna Leamy mother of Kieran, Kelsey and > > OK so now I am second guessing myself. > I ask any of you.........what would you do in my shoes? > has been in a brace since September 2007. His curve has gone from 15 to 8 > to 11 to 14 to 11 and up and down and up and down. Currently 11 degrees just a > few weeks ago. So from what I see it has basically stayed the same. The brace > has held his curve.  > Would you let your child go completely without the brace or night time only?? > He has never had a consistent pattern. It goes up and down. > There is no science to this so at what point do you just let the brace go and > see what happens? Do I risk all the years and hard work we went through to just > see what will happen? > Thoughts? >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Tasha Fontenot <ryanswalk@...> > infantile scoliosis treatment > Sent: Sun, March 20, 2011 1:31:50 PM > Subject: Re: Checking In & " School Age Brace " & Tasha > >  > Hi , > Good to hear from you! Are you still on bedrest? > Hope everything turns out great for Noah on his checkup. Keep me posted. > > Regarding : that 11 degrees was out of brace.  's doctor really does not > have a desired mark/number. And is very conservative. > Sure I'll admit it was a little frustrating, but I am fine with it for now. He > has been in a brace for so long it seems kinda scary at this point to just walk > away from it.  We were given three choices.....continue what we were doing(14-16 > hours a day), night time only or no brace.  > We decided on night time.  With freedom. We allow him to go brace free at least > two nights a week. He seems to be fine with it. > > Depending on his next check-up and xray we will push for no brace. For now we > are good. > Thanks for asking! >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Borlik <christina_borlik@...> > infantile scoliosis <infantile scoliosis treatment > > Sent: Sun, March 20, 2011 11:29:41 AM > Subject: Checking In & " School Age Brace " & Tasha > >  > ~ > > > > > > . > Hello everyone, > I've been absent for awhile.  I've been on pregnancy bedrest for the past 2 > months and therefore haven't been able to sit at the computer much.  I've fallen > behind on many posts, but I did want to respond to a couple recent ones. > > First, an update on my kiddos...Noah is still brace-free (it's been almost 1 > year!)  He'll have an x-ray taken locally in May and we'll ship it to SLC for > his doc to review.  As you may remember he did progress a bit when we had his 6 > month follow-up x-ray taken in the fall.  So depending on the measurement this > spring...we may be back in SLC this summer for a brace. > > Mariella had her 2 year check-up recently and her back is still straight.  No > x-ray was taken.  We'll continue to monitor her.  But so far so good  > > Baby #3 is due 5/5 and we'll be sure to have their spine checked as well  : ) > > a - My son is in Kindergarden and may be entering 1st grade in a brace > (fingers crossed though that this isn't the case.)  I was so glad to read your > post and hear that your daughter is doing well in school with a brace.  And I > too am interested as to whether or not there is a group/place for us parents of > school age (non-teens) that are dealing with braces.  Let me know if you find > any and/or we can stay in touch via this group too for support. > > Tasha - I was surprised to read that is still being braced at 11*.  Is that > his in-brace measurement?  As you know, I'm pretty nervous that Noah too will > have to be braced " long-term. "  Of course we'll do whatever it takes to > prevent/postpone surgery, but how frustrating that our little boys are SO CLOSE > to that desired under 10* mark. > > Hope everyone is well. > ~ > > Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently > treatment-free at 13* > And Mariella - 2 years old, Resolved Infantile Scoliosis > > > school age brace > Posted by: " ericazvt "  mczim4@...   ericazvt > Sat Mar 19, 2011 10:33 am (PDT) > > > I don't have much experience to offer yet, but I can say that about one month in > to brace wearing, my first grader is doing fine with the social aspect of it. I > imagine it will get much harder in coming years when being different will be > tougher and tougher. At the same time, I agree that having a difference can > instill toughness and confidence. Nadia even announced today that she'd > forgetten already about getting a sticker for each day (worn proudly right on > the brace) - that all she cared about any more was wearing the brace (proudly). > She feels like it's a challenge she has met -- " hard but good " is the phrase we > tend to use for challenges. I hope I'm not jinxing myself as I do whenever I > write about parenting... > Our goal is to avoid surgery before she's at full height. No one ever presented > the goal of coming to zero. I guess that's because we were never introduced to > casting as an option when she was younger. (I did read about it but didn't > pursue it - pretty naively - because of her sensory and attachment and eating > and growth issues.) > > Two questions - are there any other school age children on this list? > > And - Anyone have a source for nice thin flat-seamed tshirts to wear under the > brace. I found the SOFT brand and ordered a few that have been good, but they > don't have enough of the " Right " colors. > > Thanks to those who responded when I emailed before. > > a in Vermont > mom of Nadia 28-36 in her first brace, chiari, detethering, etc etc > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2011 Report Share Posted March 20, 2011 Hi Tasha, Don't second guess yourself too much! I think you made a wise choice. I think it will be very hard for Noah if he has to go back into a brace after being brace-free for an entire year. I would rather do the weaning that you are doing. 11* is great and you don't want to lose any ground! We originally thought we too would wean and go from full-time brace wear to night-time only, but our doc changed that plan. He felt it was time to see if Noah could support his spine himself after being braced for so long. Plus he measured so well (at only 8*) when we stopped. He measured at 13* 6 months later. Not bad, but not so great either. We'll see in May if the right choice was made or if we end up going back into a brace. In which case - it would have been better to wean. Like you said, there just isn't an exact science to this condition (boy, do I wish there was!) Yes, at some point 's doc will probably want to " let the brace go and see what happens " but I wouldn't push it if there's no reason to. It sounds like tolerates the brace pretty well (as well as any 5 yr old does!) so I wouldn't rock the boat just yet. You're doing a great job momma! ~ Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently treatment-free at 13* And Mariella - 2 years old, Resolved Infantile Scoliosi > > OK so now I am second guessing myself. > I ask any of you.........what would you do in my shoes? > has been in a brace since September 2007. His curve has gone from 15 to 8 > to 11 to 14 to 11 and up and down and up and down. Currently 11 degrees just a > few weeks ago. So from what I see it has basically stayed the same. The brace > has held his curve.  > Would you let your child go completely without the brace or night time only?? > He has never had a consistent pattern. It goes up and down. > There is no science to this so at what point do you just let the brace go and > see what happens? Do I risk all the years and hard work we went through to just > see what will happen? > Thoughts? >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Tasha Fontenot <ryanswalk@...> > infantile scoliosis treatment > Sent: Sun, March 20, 2011 1:31:50 PM > Subject: Re: Checking In & " School Age Brace " & Tasha > >  > Hi , > Good to hear from you! Are you still on bedrest? > Hope everything turns out great for Noah on his checkup. Keep me posted. > > Regarding : that 11 degrees was out of brace.  's doctor really does not > have a desired mark/number. And is very conservative. > Sure I'll admit it was a little frustrating, but I am fine with it for now. He > has been in a brace for so long it seems kinda scary at this point to just walk > away from it.  We were given three choices.....continue what we were doing(14-16 > hours a day), night time only or no brace.  > We decided on night time.  With freedom. We allow him to go brace free at least > two nights a week. He seems to be fine with it. > > Depending on his next check-up and xray we will push for no brace. For now we > are good. > Thanks for asking! >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Borlik <christina_borlik@...> > infantile scoliosis <infantile scoliosis treatment > > Sent: Sun, March 20, 2011 11:29:41 AM > Subject: Checking In & " School Age Brace " & Tasha > >  > ~ > > > > > > . > Hello everyone, > I've been absent for awhile.  I've been on pregnancy bedrest for the past 2 > months and therefore haven't been able to sit at the computer much.  I've fallen > behind on many posts, but I did want to respond to a couple recent ones. > > First, an update on my kiddos...Noah is still brace-free (it's been almost 1 > year!)  He'll have an x-ray taken locally in May and we'll ship it to SLC for > his doc to review.  As you may remember he did progress a bit when we had his 6 > month follow-up x-ray taken in the fall.  So depending on the measurement this > spring...we may be back in SLC this summer for a brace. > > Mariella had her 2 year check-up recently and her back is still straight.  No > x-ray was taken.  We'll continue to monitor her.  But so far so good  > > Baby #3 is due 5/5 and we'll be sure to have their spine checked as well  : ) > > a - My son is in Kindergarden and may be entering 1st grade in a brace > (fingers crossed though that this isn't the case.)  I was so glad to read your > post and hear that your daughter is doing well in school with a brace.  And I > too am interested as to whether or not there is a group/place for us parents of > school age (non-teens) that are dealing with braces.  Let me know if you find > any and/or we can stay in touch via this group too for support. > > Tasha - I was surprised to read that is still being braced at 11*.  Is that > his in-brace measurement?  As you know, I'm pretty nervous that Noah too will > have to be braced " long-term. "  Of course we'll do whatever it takes to > prevent/postpone surgery, but how frustrating that our little boys are SO CLOSE > to that desired under 10* mark. > > Hope everyone is well. > ~ > > Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently > treatment-free at 13* > And Mariella - 2 years old, Resolved Infantile Scoliosis > > > school age brace > Posted by: " ericazvt "  mczim4@...   ericazvt > Sat Mar 19, 2011 10:33 am (PDT) > > > I don't have much experience to offer yet, but I can say that about one month in > to brace wearing, my first grader is doing fine with the social aspect of it. I > imagine it will get much harder in coming years when being different will be > tougher and tougher. At the same time, I agree that having a difference can > instill toughness and confidence. Nadia even announced today that she'd > forgetten already about getting a sticker for each day (worn proudly right on > the brace) - that all she cared about any more was wearing the brace (proudly). > She feels like it's a challenge she has met -- " hard but good " is the phrase we > tend to use for challenges. I hope I'm not jinxing myself as I do whenever I > write about parenting... > Our goal is to avoid surgery before she's at full height. No one ever presented > the goal of coming to zero. I guess that's because we were never introduced to > casting as an option when she was younger. (I did read about it but didn't > pursue it - pretty naively - because of her sensory and attachment and eating > and growth issues.) > > Two questions - are there any other school age children on this list? > > And - Anyone have a source for nice thin flat-seamed tshirts to wear under the > brace. I found the SOFT brand and ordered a few that have been good, but they > don't have enough of the " Right " colors. > > Thanks to those who responded when I emailed before. > > a in Vermont > mom of Nadia 28-36 in her first brace, chiari, detethering, etc etc > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2011 Report Share Posted March 20, 2011 Shauna, and , THANK YOU SO MUCH!!!!! I am already feeling better about it from reading your emails. My husband is on board with everything we do, but sometimes I need to talk more about it. And having you all helps SO much. How I wish I could hug you all! Have a great Sunday evening ladies Love you all! TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007. EARLY Treatment does work if done properly. You can read 's story at.... http://www.infantilescoliosis.org/stories.html Or follow our family one day at a time......http://thefontenotslife.blogspot.com/ From: <christina_borlik@...>infantile scoliosis treatment Sent: Sun, March 20, 2011 2:57:48 PMSubject: Re: What would you do? Hi Tasha,Don't second guess yourself too much! I think you made a wise choice. I think it will be very hard for Noah if he has to go back into a brace after being brace-free for an entire year. I would rather do the weaning that you are doing. 11* is great and you don't want to lose any ground! We originally thought we too would wean and go from full-time brace wear to night-time only, but our doc changed that plan. He felt it was time to see if Noah could support his spine himself after being braced for so long. Plus he measured so well (at only 8*) when we stopped. He measured at 13* 6 months later. Not bad, but not so great either. We'll see in May if the right choice was made or if we end up going back into a brace. In which case - it would have been better to wean.Like you said, there just isn't an exact science to this condition (boy, do I wish there was!) Yes, at some point 's doc will probably want to "let the brace go and see what happens" but I wouldn't push it if there's no reason to. It sounds like tolerates the brace pretty well (as well as any 5 yr old does!) so I wouldn't rock the boat just yet. You're doing a great job momma!~Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently treatment-free at 13*And Mariella - 2 years old, Resolved Infantile Scoliosi>> OK so now I am second guessing myself. > I ask any of you.........what would you do in my shoes? > has been in a brace since September 2007. His curve has gone from 15 to 8 > to 11 to 14 to 11 and up and down and up and down. Currently 11 degrees just a > few weeks ago. So from what I see it has basically stayed the same. The brace > has held his curve.  > Would you let your child go completely without the brace or night time only?? > He has never had a consistent pattern. It goes up and down.> There is no science to this so at what point do you just let the brace go and > see what happens? Do I risk all the years and hard work we went through to just > see what will happen?> Thoughts?>  > Tasha> Mommy of 5 year old twin boys- and > Fort Worth, Texas> is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html> Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/> > > > >  > > > > > ________________________________> From: Tasha Fontenot <ryanswalk@...>> infantile scoliosis treatment > Sent: Sun, March 20, 2011 1:31:50 PM> Subject: Re: Checking In & "School Age Brace" & Tasha> >  > Hi ,> Good to hear from you! Are you still on bedrest? > Hope everything turns out great for Noah on his checkup. Keep me posted.> > Regarding : that 11 degrees was out of brace.  's doctor really does not > have a desired mark/number. And is very conservative.> Sure I'll admit it was a little frustrating, but I am fine with it for now. He > has been in a brace for so long it seems kinda scary at this point to just walk > away from it.  We were given three choices.....continue what we were doing(14-16 > hours a day), night time only or no brace.  > We decided on night time.  With freedom. We allow him to go brace free at least > two nights a week. He seems to be fine with it. > > Depending on his next check-up and xray we will push for no brace. For now we > are good.> Thanks for asking!>  > Tasha> Mommy of 5 year old twin boys- and > Fort Worth, Texas> is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html> Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/> > > > >  > > > > > ________________________________> From: Borlik <christina_borlik@...>> infantile scoliosis <infantile scoliosis treatment >> Sent: Sun, March 20, 2011 11:29:41 AM> Subject: Checking In & "School Age Brace" & Tasha> >  > ~> > > > > > .> Hello everyone,> I've been absent for awhile.  I've been on pregnancy bedrest for the past 2 > months and therefore haven't been able to sit at the computer much.  I've fallen > behind on many posts, but I did want to respond to a couple recent ones.> > First, an update on my kiddos...Noah is still brace-free (it's been almost 1 > year!)  He'll have an x-ray taken locally in May and we'll ship it to SLC for > his doc to review.  As you may remember he did progress a bit when we had his 6 > month follow-up x-ray taken in the fall.  So depending on the measurement this > spring...we may be back in SLC this summer for a brace.> > Mariella had her 2 year check-up recently and her back is still straight.  No > x-ray was taken.  We'll continue to monitor her.  But so far so good  > > Baby #3 is due 5/5 and we'll be sure to have their spine checked as well  : )> > a - My son is in Kindergarden and may be entering 1st grade in a brace > (fingers crossed though that this isn't the case.)  I was so glad to read your > post and hear that your daughter is doing well in school with a brace.  And I > too am interested as to whether or not there is a group/place for us parents of > school age (non-teens) that are dealing with braces.  Let me know if you find > any and/or we can stay in touch via this group too for support.> > Tasha - I was surprised to read that is still being braced at 11*.  Is that > his in-brace measurement?  As you know, I'm pretty nervous that Noah too will > have to be braced "long-term."  Of course we'll do whatever it takes to > prevent/postpone surgery, but how frustrating that our little boys are SO CLOSE > to that desired under 10* mark.> > Hope everyone is well.> ~> > Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently > treatment-free at 13*> And Mariella - 2 years old, Resolved Infantile Scoliosis> > > school age brace> Posted by: "ericazvt" mczim4@...   ericazvt> Sat Mar 19, 2011 10:33 am (PDT)> > > I don't have much experience to offer yet, but I can say that about one month in > to brace wearing, my first grader is doing fine with the social aspect of it. I > imagine it will get much harder in coming years when being different will be > tougher and tougher. At the same time, I agree that having a difference can > instill toughness and confidence. Nadia even announced today that she'd > forgetten already about getting a sticker for each day (worn proudly right on > the brace) - that all she cared about any more was wearing the brace (proudly). > She feels like it's a challenge she has met -- "hard but good" is the phrase we > tend to use for challenges. I hope I'm not jinxing myself as I do whenever I > write about parenting... > Our goal is to avoid surgery before she's at full height. No one ever presented > the goal of coming to zero. I guess that's because we were never introduced to > casting as an option when she was younger. (I did read about it but didn't > pursue it - pretty naively - because of her sensory and attachment and eating > and growth issues.)> > Two questions - are there any other school age children on this list?> > And - Anyone have a source for nice thin flat-seamed tshirts to wear under the > brace. I found the SOFT brand and ordered a few that have been good, but they > don't have enough of the "Right" colors. > > Thanks to those who responded when I emailed before.> > a in Vermont> mom of Nadia 28-36 in her first brace, chiari, detethering, etc etc> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2011 Report Share Posted March 21, 2011 Wow Tasha.... That's a toughie! What are the doc's thoughts? If you are trying to wean off for good, could you start with every other night until the next check-up? Keep me posted as we will be in your shoes soon! - Noelle's mommy, 4 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and went into cast 9Back in brace at 8 degrees supine, 13 standing! reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: Tasha Fontenot <ryanswalk@...>Subject: What would you do?infantile scoliosis treatment Date: Sunday, March 20, 2011, 7:07 PM OK so now I am second guessing myself. I ask any of you.........what would you do in my shoes? has been in a brace since September 2007. His curve has gone from 15 to 8 to 11 to 14 to 11 and up and down and up and down. Currently 11 degrees just a few weeks ago. So from what I see it has basically stayed the same. The brace has held his curve. Would you let your child go completely without the brace or night time only?? He has never had a consistent pattern. It goes up and down. There is no science to this so at what point do you just let the brace go and see what happens? Do I risk all the years and hard work we went through to just see what will happen? Thoughts? TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007. EARLY Treatment does work if done properly. You can read 's story at.... http://www.infantilescoliosis.org/stories.html Or follow our family one day at a time......http://thefontenotslife.blogspot.com/ From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Sun, March 20, 2011 1:31:50 PMSubject: Re: Checking In & "School Age Brace" & Tasha Hi , Good to hear from you! Are you still on bedrest? Hope everything turns out great for Noah on his checkup. Keep me posted. Regarding : that 11 degrees was out of brace. 's doctor really does not have a desired mark/number. And is very conservative. Sure I'll admit it was a little frustrating, but I am fine with it for now. He has been in a brace for so long it seems kinda scary at this point to just walk away from it. We were given three choices.....continue what we were doing(14-16 hours a day), night time only or no brace. We decided on night time. With freedom. We allow him to go brace free at least two nights a week. He seems to be fine with it. Depending on his next check-up and xray we will push for no brace. For now we are good. Thanks for asking! TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007. EARLY Treatment does work if done properly. You can read 's story at.... http://www.infantilescoliosis.org/stories.html Or follow our family one day at a time......http://thefontenotslife.blogspot.com/ From: Borlik <christina_borlik@...>infantile scoliosis <infantile scoliosis treatment >Sent: Sun, March 20, 2011 11:29:41 AMSubject: Checking In & "School Age Brace" & Tasha .. Hello everyone, I've been absent for awhile. I've been on pregnancy bedrest for the past 2 months and therefore haven't been able to sit at the computer much. I've fallen behind on many posts, but I did want to respond to a couple recent ones. First, an update on my kiddos...Noah is still brace-free (it's been almost 1 year!) He'll have an x-ray taken locally in May and we'll ship it to SLC for his doc to review. As you may remember he did progress a bit when we had his 6 month follow-up x-ray taken in the fall. So depending on the measurement this spring...we may be back in SLC this summer for a brace. Mariella had her 2 year check-up recently and her back is still straight. No x-ray was taken. We'll continue to monitor her. But so far so good Baby #3 is due 5/5 and we'll be sure to have their spine checked as well : ) a - My son is in Kindergarden and may be entering 1st grade in a brace (fingers crossed though that this isn't the case.) I was so glad to read your post and hear that your daughter is doing well in school with a brace. And I too am interested as to whether or not there is a group/place for us parents of school age (non-teens) that are dealing with braces. Let me know if you find any and/or we can stay in touch via this group too for support. Tasha - I was surprised to read that is still being braced at 11*. Is that his in-brace measurement? As you know, I'm pretty nervous that Noah too will have to be braced "long-term." Of course we'll do whatever it takes to prevent/postpone surgery, but how frustrating that our little boys are SO CLOSE to that desired under 10* mark. Hope everyone is well. ~ Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently treatment-free at 13* And Mariella - 2 years old, Resolved Infantile Scoliosis school age brace Posted by: "ericazvt" mczim4@... ericazvt Sat Mar 19, 2011 10:33 am (PDT) I don't have much experience to offer yet, but I can say that about one month in to brace wearing, my first grader is doing fine with the social aspect of it. I imagine it will get much harder in coming years when being different will be tougher and tougher. At the same time, I agree that having a difference can instill toughness and confidence. Nadia even announced today that she'd forgetten already about getting a sticker for each day (worn proudly right on the brace) - that all she cared about any more was wearing the brace (proudly). She feels like it's a challenge she has met -- "hard but good" is the phrase we tend to use for challenges. I hope I'm not jinxing myself as I do whenever I write about parenting... Our goal is to avoid surgery before she's at full height. No one ever presented the goal of coming to zero. I guess that's because we were never introduced to casting as an option when she was younger. (I did read about it but didn't pursue it - pretty naively - because of her sensory and attachment and eating and growth issues.)Two questions - are there any other school age children on this list?And - Anyone have a source for nice thin flat-seamed tshirts to wear under the brace. I found the SOFT brand and ordered a few that have been good, but they don't have enough of the "Right" colors. Thanks to those who responded when I emailed before.a in Vermontmom of Nadia 28-36 in her first brace, chiari, detethering, etc etc~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 I agree with Shauna. Night time only sounds like a dream right now- I think you are doing the best thing, just IMHO. Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Shauna <scolimail@...>infantile scoliosis treatment Sent: Sun, March 20, 2011 12:37:49 PMSubject: Re: What would you do? Tasha I would do exactly what you are doing. I think you and your doctor are using the right amount of caution. It is exactly where I hope Kieran will someday be but I know is unrealistic to think due to how severe his scoliosis continues to be. It sounds like a slow, conservative weaning process, even if it is taking years, and it really will show you if anything serious have changed, for instance, if the curve suddenly doesn't fit the brace warning bells will go off for sure to get it checked. Congrats on things going so well! It's such a short time and soon is passed. And it sounds like no one there has a problem with it. Boy do I dream of nighttime bracing or 14 -16 hours. The future will unfold how it unfolds in the end, but I think you and are doing a fantastic job of managing his curve! Also his needs will be very different than the needs of any other kid, most likely. Anyways, keep up the great care of your boy, and congratulations on all the successes! Shauna Leamy mother of Kieran, Kelsey and > > OK so now I am second guessing myself. > I ask any of you.........what would you do in my shoes? > has been in a brace since September 2007. His curve has gone from 15 to 8 > to 11 to 14 to 11 and up and down and up and down. Currently 11 degrees just a > few weeks ago. So from what I see it has basically stayed the same. The brace > has held his curve.  > Would you let your child go completely without the brace or night time only?? > He has never had a consistent pattern. It goes up and down. > There is no science to this so at what point do you just let the brace go and > see what happens? Do I risk all the years and hard work we went through to just > see what will happen? > Thoughts? >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Tasha Fontenot <ryanswalk@...> > infantile scoliosis treatment > Sent: Sun, March 20, 2011 1:31:50 PM > Subject: Re: Checking In & "School Age Brace" & Tasha > >  > Hi , > Good to hear from you! Are you still on bedrest? > Hope everything turns out great for Noah on his checkup. Keep me posted. > > Regarding : that 11 degrees was out of brace.  's doctor really does not > have a desired mark/number. And is very conservative. > Sure I'll admit it was a little frustrating, but I am fine with it for now. He > has been in a brace for so long it seems kinda scary at this point to just walk > away from it.  We were given three choices.....continue what we were doing(14-16 > hours a day), night time only or no brace.  > We decided on night time.  With freedom. We allow him to go brace free at least > two nights a week. He seems to be fine with it. > > Depending on his next check-up and xray we will push for no brace. For now we > are good. > Thanks for asking! >  > Tasha > Mommy of 5 year old twin boys- and > Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas. After being > treated in a series of 6 casts for 14 months he is now in a brace and has been > since September 2007. > > EARLY Treatment does work if done properly. > You can read 's story at.... http://www.infantilescoliosis.org/stories.html > Or follow our family one day at a > time......http://thefontenotslife.blogspot.com/ > > > > >  > > > > > ________________________________ > From: Borlik <christina_borlik@...> > infantile scoliosis <infantile scoliosis treatment > > Sent: Sun, March 20, 2011 11:29:41 AM > Subject: Checking In & "School Age Brace" & Tasha > >  > ~ > > > > > > . > Hello everyone, > I've been absent for awhile.  I've been on pregnancy bedrest for the past 2 > months and therefore haven't been able to sit at the computer much.  I've fallen > behind on many posts, but I did want to respond to a couple recent ones. > > First, an update on my kiddos...Noah is still brace-free (it's been almost 1 > year!)  He'll have an x-ray taken locally in May and we'll ship it to SLC for > his doc to review.  As you may remember he did progress a bit when we had his 6 > month follow-up x-ray taken in the fall.  So depending on the measurement this > spring...we may be back in SLC this summer for a brace. > > Mariella had her 2 year check-up recently and her back is still straight.  No > x-ray was taken.  We'll continue to monitor her.  But so far so good  > > Baby #3 is due 5/5 and we'll be sure to have their spine checked as well  : ) > > a - My son is in Kindergarden and may be entering 1st grade in a brace > (fingers crossed though that this isn't the case.)  I was so glad to read your > post and hear that your daughter is doing well in school with a brace.  And I > too am interested as to whether or not there is a group/place for us parents of > school age (non-teens) that are dealing with braces.  Let me know if you find > any and/or we can stay in touch via this group too for support. > > Tasha - I was surprised to read that is still being braced at 11*.  Is that > his in-brace measurement?  As you know, I'm pretty nervous that Noah too will > have to be braced "long-term."  Of course we'll do whatever it takes to > prevent/postpone surgery, but how frustrating that our little boys are SO CLOSE > to that desired under 10* mark. > > Hope everyone is well. > ~ > > Noah 5 1/2 years old - 9 months of casting, 2 1/2 years of bracing, Currently > treatment-free at 13* > And Mariella - 2 years old, Resolved Infantile Scoliosis > > > school age brace > Posted by: "ericazvt" mczim4@...   ericazvt > Sat Mar 19, 2011 10:33 am (PDT) > > > I don't have much experience to offer yet, but I can say that about one month in > to brace wearing, my first grader is doing fine with the social aspect of it. I > imagine it will get much harder in coming years when being different will be > tougher and tougher. At the same time, I agree that having a difference can > instill toughness and confidence. Nadia even announced today that she'd > forgetten already about getting a sticker for each day (worn proudly right on > the brace) - that all she cared about any more was wearing the brace (proudly). > She feels like it's a challenge she has met -- "hard but good" is the phrase we > tend to use for challenges. I hope I'm not jinxing myself as I do whenever I > write about parenting... > Our goal is to avoid surgery before she's at full height. No one ever presented > the goal of coming to zero. I guess that's because we were never introduced to > casting as an option when she was younger. (I did read about it but didn't > pursue it - pretty naively - because of her sensory and attachment and eating > and growth issues.) > > Two questions - are there any other school age children on this list? > > And - Anyone have a source for nice thin flat-seamed tshirts to wear under the > brace. I found the SOFT brand and ordered a few that have been good, but they > don't have enough of the "Right" colors. > > Thanks to those who responded when I emailed before. > > a in Vermont > mom of Nadia 28-36 in her first brace, chiari, detethering, etc etc > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Last night when Jan and I had supper together because Mom was working, she said that she wanted to cook popovers in the morning for Mom. I didn't think much about the logistics except to tell her that she probably needed to get up at 7 to catch her Mom before she went to work today. So about 7:30 there were some noises in the kitchen and I slowly got up leaving my wife to get a few more winks. By the time I got to the kitchen it was closer to 8 and she was putting a smooth batter into the popover pan. The oven was already at 450 and she was on-course. Well, as I did replay in my head, we were out of milk. I also knew that the soy milk her Mom uses for coffee was low. It turns out that she discovered this a little late and used all the soy milk augmented with water. She later admitted that she couldn't find a bag of regular flour and had used self-rising flour. That made sense because the regular flour is in a cannister and the other bags were whole wheat or soy. Anyway, by the time I got the whole story the popovers were in the oven and cooking .. first at 450 and then at 350 timed by Jan using the stove timer. NO, they weren't POPOVERS! What she served were very nice even textured rolls .. and they were delicious. It surprised me that she could deal with show-stopper problems and still come up with a winner! Rick .. dad to 38 year old Jan .. btw she has the popover recipe memorized and doesn't use a cookbook for it. Her popovers are a family treat! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 Good for Jan..she continues to inspire! What would you do? Â Last night when Jan and I had supper together because Mom was working, she said that she wanted to cook popovers in the morning for Mom. I didn't think much about the logistics except to tell her that she probably needed to get up at 7 to catch her Mom before she went to work today. So about 7:30 there were some noises in the kitchen and I slowly got up leaving my wife to get a few more winks. By the time I got to the kitchen it was closer to 8 and she was putting a smooth batter into the popover pan. The oven was already at 450 and she was on-course. Well, as I did replay in my head, we were out of milk. I also knew that the soy milk her Mom uses for coffee was low. It turns out that she discovered this a little late and used all the soy milk augmented with water. She later admitted that she couldn't find a bag of regular flour and had used self-rising flour. That made sense because the regular flour is in a cannister and the other bags were whole wheat or soy. Anyway, by the time I got the whole story the popovers were in the oven and cooking .. first at 450 and then at 350 timed by Jan using the stove timer. NO, they weren't POPOVERS! What she served were very nice even textured rolls .. and they were delicious. It surprised me that she could deal with show-stopper problems and still come up with a winner! Rick .. dad to 38 year old Jan .. btw she has the popover recipe memorized and doesn't use a cookbook for it. Her popovers are a family treat! Quote Link to comment Share on other sites More sharing options...
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