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You are entitled to your pity party and I will have that drink for you! Pediatricians across the board need to become more knowledgeable and proactive in many areas, including scoliosis..... To think a simple x-ray is really all that it takes. It's hard to be upbeat and positive all the time and you deserve the rant and the break.... You can let it all hang out with us girl! - Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Thursday, August 19, 2010, 12:32 AM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or

something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it

could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every

trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Hi Heidi,

 

I totally understand what you're feeling right now.  Especially about the fried food with lots of cheese!!  LOL!  Rants are part of the process, friend!  Bex has certainly been through a lot of castings.  And it's not easy on anyone, no matter how normal a part of life it becomes!

 

We've had a long, hard road so far with Todd's scoli treatment, too.  It is so hard.  I know the tears so well.  It seems like, even still!!, every other visit we get opposite news.  Good news, then bad news, and back and forth.  I kinda know what to expect now, but that's no consolation.

 

Todd's one of the kids for whom casting was not a cure.  And I don't know that getting him in sooner would have changed that, to be honest.  But I do know that we'd do it all over again, if we had the choice, and that had we not, Todd would already have been facing growing rod surgeries--we've been told that by every doc we've seen.

 

Hang in there.  Bex will get the treatment he needs, no matter what, and God will take care of the rest.

 

Hugs.

, Mommy to Todd

 

 

On Wed, Aug 18, 2010 at 8:32 PM, NIck Guthe <nickguthe@...> wrote:

 

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:

I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.

I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.

If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.

Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.

But if it doesn't go that way,  we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex.

As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.

I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS!

If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

 Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment

Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update 

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC

>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Heidi I feel your pain! I just want to scream for a minute also. We are so grateful for casting but I am tired of it all! I hate scoliosis. I don't even remember how many casts Finn has had. He is 4 years and 3 months old and he has been casted since he was 21 months old. If his **** (fill in the blanks with anything you feel appropriate) doctor at the age of 11 months would have told me about casting then it could be different for Finn. Even with his genetic condition it could have been different. There is another child with his same genetic condition that is getting ready to go into a brace. It could have happened. It could have been Finn. But, instead we started casting at 90 degrees. And we are so thankful for what we have been able to achieve. But it is still not good. And we beg for one more cast ever time.

And I hate scoliosis.

, Finn's mom

From: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on

me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe

it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every

trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Heidi,AMEN!! Maybe number 8 is the I-am-so-over-this cast because Bryce is on #8 and I swear I could have written your email.Hang in there!Take care,

Jen

Pickerington, Ohio

Mommy to Bryce, 2 years old

Started with 48 degree curve (laying down)

Cast #8 - Rochester, NYFrom: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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Thank you, Steph! I know you understand! XOXO Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Kauffunger <slguerra710@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 5:52:28 PMSubject: Re: Bexon update/pity party

You are entitled to your pity party and I will have that drink for you! Pediatricians across the board need to become more knowledgeable and proactive in many areas, including scoliosis..... To think a simple x-ray is really all that it takes. It's hard to be upbeat and positive all the time and you deserve the rant and the break.... You can let it all hang out with us girl! - Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III--- On

Thu, 8/19/10, NIck Guthe <nickguthe@...> wrote:

From: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Thursday, August 19, 2010, 12:32 AM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or

something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it

could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every

trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Thank you, ! The back and forth- UGH! I feel like I should be prepared for it, but I never am. I don't care if it is one degree lost, it feels BIG!!! Us, too, Bex would have growing rods by now without this treatment, no doubt- by age 2, well before 3. We are doing the best thing and we will make the best choice each step of the way. Some curves are caught later, some more stubborn- it is such a NOT FAIR disease. I pray and I have faith in the big picture, the smaller one sometimes seems harder. Thank you, it helps a lot! Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: D <dew.writes@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 6:07:29 PMSubject: Re: Bexon update/pity party

Hi Heidi,

I totally understand what you're feeling right now. Especially about the fried food with lots of cheese!! LOL! Rants are part of the process, friend! Bex has certainly been through a lot of castings. And it's not easy on anyone, no matter how normal a part of life it becomes!

We've had a long, hard road so far with Todd's scoli treatment, too. It is so hard. I know the tears so well. It seems like, even still!!, every other visit we get opposite news. Good news, then bad news, and back and forth. I kinda know what to expect now, but that's no consolation.

Todd's one of the kids for whom casting was not a cure. And I don't know that getting him in sooner would have changed that, to be honest. But I do know that we'd do it all over again, if we had the choice, and that had we not, Todd would already have been facing growing rod surgeries--we've been told that by every doc we've seen.

Hang in there. Bex will get the treatment he needs, no matter what, and God will take care of the rest.

Hugs.

, Mommy to Todd

On Wed, Aug 18, 2010 at 8:32 PM, NIck Guthe <nickguthe@...> wrote:

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:

I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.

I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.

If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.

Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.

But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex.

As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.

I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS!

If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment

Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC

>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Oh, , I hear you, let's SCREAM!!!Finn does not deserve this and neither does Bex and neither do any of our kids who couldn't gotten better medical advice- the RIGHT medical treatment earlier!!! You have been doing this longer than we have and I would be so sick of it, too- it feels endless. I am starting a public website and I hope I can direct more kids and their parents to ISOP. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: McSheffrey <teresamcsheffrey@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 6:11:15 PMSubject: Re: Bexon update/pity party

Heidi I feel your pain! I just want to scream for a minute also. We are so grateful for casting but I am tired of it all! I hate scoliosis. I don't even remember how many casts Finn has had. He is 4 years and 3 months old and he has been casted since he was 21 months old. If his **** (fill in the blanks with anything you feel appropriate) doctor at the age of 11 months would have told me about casting then it could be different for Finn. Even with his genetic condition it could have been different. There is another child with his same genetic condition that is getting ready to go into a brace. It could have happened. It could have been Finn. But, instead we started

casting at 90 degrees. And we are so thankful for what we have been able to achieve. But it is still not good. And we beg for one more cast ever time.

And I hate scoliosis.

, Finn's mom

From: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on

me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe

it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every

trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Thank you, Jen! You get it!!! You hang in there, too, we WILL get through this! Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Jen Dupler <jen_dupler@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 6:28:10

PMSubject: Re: Bexon update/pity party

Heidi,AMEN!! Maybe number 8 is the I-am-so-over-this cast because Bryce is on #8 and I swear I could have written your email.Hang in there!Take care,

Jen

Pickerington, Ohio

Mommy to Bryce, 2 years old

Started with 48 degree curve (laying down)

Cast #8 - Rochester, NYFrom: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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Heidi,Are you really starting a website? That is such an awesome idea!Take care,

Jen

Pickerington, Ohio

Mommy to Bryce, 2 years old

Started with 48 degree curve (laying down)

Cast #8 - Rochester, NYFrom: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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I am starting a website, I am a writer- have been a professional writer for years- mostly comedy/romantic comedy screenplays and some TV- but my CAST email posts do not reflect that : ) It is gonna be a Mommy Blog in the confessional/humor category, but I will also put up longer updates on Bexon's journey and photos of our crazy life. I wrote a whole novel about Infantile Scoliosis last year- sort of Sparks/Jodi Picoult style- and I will put up info on that and probably some sample pages, in the hopes of getting it published and donating a portion of every dollar I make from the book (if any) to ISOP.I also wrote a longer essay about the beginning of Bex's story that I think I will put up on the website in full- there is a short version of it on Breezymama.com, but this one is a

lot more detailed. My hope is that Google searches, etc., will lead more parents to find the story and I will have ISOP's info and web address up there to direct people to CAST.I hope it's all part of the bigger picture of spreading the word, but it will also be a place for comments or discussion about Mom and woman stuff- "Just trying to become a grown-up before my kid does!" I'll post it once it's up. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Jen Dupler

<jen_dupler@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 6:55:36 PMSubject: Re: Bexon update/pity party

Heidi,Are you really starting a website? That is such an awesome idea!Take care,

Jen

Pickerington, Ohio

Mommy to Bryce, 2 years old

Started with 48 degree curve (laying down)

Cast #8 - Rochester, NYFrom: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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Just a bit of a different perspective here, and I don't meant this disrespectfully at all--I know that no matter where a person is in this casting trip it is hard---but, in my opinion, what REALLY sucks is when you don't even have the option of 8-10-12 casts...

      Wed, Aug 18, 2010 at 7:32 PM, NIck Guthe <nickguthe@...> wrote:

 

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:

I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.

I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.

Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.

But if it doesn't go that way,  we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.

I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS!

If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

 

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>

infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PM

Subject: Re: Bex update

 

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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Heidi,

I think that is great about your website/blog! It will not only give a ton of info to parents on the web, but it will be an outlet for you as you go through all this.

I find writing on my blog is therapy for me. It may not always be about 's condition, but if it is I am free to let it all out.

Pity Party-I am sorry you are feeling this way AGAIN! I know all too well, unfortunately, how you feel. And I do believe all of us deserve on those bad days to just go ahead and have that pity party. Party it up with pity, shake it off and move on!

It is what it is and you can handle this. I know it doesn't make it any easier sometimes, but your family will grow through it. And come out stronger.

OK I am ready for that drink and sugar laden confection now :) ((HUGS))TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 9:27:06 PMSubject: Re: Bexon update/pity party

I am starting a website, I am a writer- have been a professional writer for years- mostly comedy/romantic comedy screenplays and some TV- but my CAST email posts do not reflect that : ) It is gonna be a Mommy Blog in the confessional/humor category, but I will also put up longer updates on Bexon's journey and photos of our crazy life. I wrote a whole novel about Infantile Scoliosis last year- sort of Sparks/Jodi Picoult style- and I will put up info on that and probably some sample pages, in the hopes of getting it published and donating a portion of every dollar I make from the book (if any) to ISOP.I also wrote a longer essay about the beginning of Bex's story that I think I will put up on the website in full- there is a short version of it on Breezymama.com, but this one is a lot more detailed. My hope

is that Google searches, etc., will lead more parents to find the story and I will have ISOP's info and web address up there to direct people to CAST.I hope it's all part of the bigger picture of spreading the word, but it will also be a place for comments or discussion about Mom and woman stuff- "Just trying to become a grown-up before my kid does!" I'll post it once it's up.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: Jen Dupler <jen_dupler@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 6:55:36 PMSubject: Re: Bexon update/pity party

Heidi,

Are you really starting a website? That is such an awesome idea!Take care,JenPickerington, OhioMommy to Bryce, 2 years oldStarted with 48 degree curve (laying down)Cast #8 - Rochester, NY

From: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or

something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it

could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You

CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Thank you, Tasha! When I was with and her Noah I was thinking about you and ! Our gorgeous, spirited, skinny boys! I will shake it off and move on. It is part of the process, and we are more than allowed that on this journey. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 7:57:47 PMSubject: Re: Bexon update/pity party

Heidi,

I think that is great about your website/blog! It will not only give a ton of info to parents on the web, but it will be an outlet for you as you go through all this.

I find writing on my blog is therapy for me. It may not always be about 's condition, but if it is I am free to let it all out.

Pity Party-I am sorry you are feeling this way AGAIN! I know all too well, unfortunately, how you feel. And I do believe all of us deserve on those bad days to just go ahead and have that pity party. Party it up with pity, shake it off and move on!

It is what it is and you can handle this. I know it doesn't make it any easier sometimes, but your family will grow through it. And come out stronger.

OK I am ready for that drink and sugar laden confection now :) ((HUGS))TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 9:27:06 PMSubject: Re: Bexon update/pity party

I am starting a website, I am a writer- have been a professional writer for years- mostly comedy/romantic comedy screenplays and some TV- but my CAST email posts do not reflect that : ) It is gonna be a Mommy Blog in the confessional/humor category, but I will also put up longer updates on Bexon's journey and photos of our crazy life. I wrote a whole novel about Infantile Scoliosis last year- sort of Sparks/Jodi Picoult style- and I will put up info on that and probably some sample pages, in the hopes of getting it published and donating a portion of every dollar I make from the book (if any) to ISOP.I also wrote a longer essay about the beginning of Bex's story that I think I will put up on the website in full- there is a short version of it on Breezymama.com, but this one is a lot more

detailed. My hope

is that Google searches, etc., will lead more parents to find the story and I will have ISOP's info and web address up there to direct people to CAST.I hope it's all part of the bigger picture of spreading the word, but it will also be a place for comments or discussion about Mom and woman stuff- "Just trying to become a grown-up before my kid does!" I'll post it once it's up.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: Jen Dupler <jen_dupler@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 6:55:36 PMSubject: Re: Bexon update/pity party

Heidi,

Are you really starting a website? That is such an awesome idea!Take care,JenPickerington, OhioMommy to Bryce, 2 years oldStarted with 48 degree curve (laying down)Cast #8 - Rochester, NY

From: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or

something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it

could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You

CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Agreed! And that is why created ISOP and this group. Because her own child was not offered this option, and she had to search the world to bring it here to the U.S. It is ridiculous and wrong that children are still missing the opportunity of this life changing and even saving treatment. Could not agree more. Hope I can be a part of the change. Can you imagine watching your child die because they cannot breathe as their lungs are crushed by this disease? It is surely happening all over the world. Third world countries are not immune to PIS. We are the lucky ones, if we are getting this help. But it is not a different perspective, in my view. We are allowed to respectfully vent our feelings and emotions here, thank God! Heidi, Bexon's Mommy, (3 years old, in 8th

cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: 216sa tds.net <216sa@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 7:54:35 PMSubject: Re: Bexon update/pity party

Just a bit of a different perspective here, and I don't meant this disrespectfully at all--I know that no matter where a person is in this casting trip it is hard---but, in my opinion, what REALLY sucks is when you don't even have the option of 8-10-12 casts...

Wed, Aug 18, 2010 at 7:32 PM, NIck Guthe <nickguthe@...> wrote:

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:

I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.

I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.

Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.

But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.

I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS!

If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>

infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PM

Subject: Re: Bex update

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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Well, we do have to remember there are children in developed countries, even our own, who don't have the option of casting as a cure, not because of timing, or of access, but because it doesn't work for them.  That is truly sucky.  Truly--to know the treatment is available, to try it (multiple times, even), and to have it fail utterly?  To face the choice of watching your child suffer from thoracic insufficiency or to suffer from surgeries, surgical complications?  Risks?  To know that this non-surgical option is not an option?  That's even more sucky than not knowing it's an option.  In my opinion.  Respectfully, and sorrowfully, and with great love,

, Mommy to Todd

 

On Wed, Aug 18, 2010 at 11:33 PM, NIck Guthe <nickguthe@...> wrote:

 

Agreed! And that is why created ISOP and this group. Because her own child was not offered this option, and she had to search the world to bring it here to the U.S. It is ridiculous and wrong that children are still missing the opportunity of this life changing and even saving treatment. Could not agree more. Hope I can be a part of the change.

Can you imagine watching your child die because they cannot breathe as their lungs are crushed by this disease? It is surely happening all over the world. Third world countries are not immune to PIS. We are the lucky ones, if we are getting this help. But it is not a different perspective, in my view. We are allowed to respectfully vent our feelings and emotions here, thank God!

 Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: 216sa tds.net <216sa@...>infantile scoliosis treatment

Sent: Wed, August 18, 2010 7:54:35 PMSubject: Re: Bexon update/pity party 

Just a bit of a different perspective here, and I don't meant this disrespectfully at all--I know that no matter where a person is in this casting trip it is hard---but, in my opinion, what REALLY sucks is when you don't even have the option of 8-10-12 casts...

      Wed, Aug 18, 2010 at 7:32 PM, NIck Guthe <nickguthe@...> wrote:

 

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:

I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.

I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.

If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.

Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.

But if it doesn't go that way,  we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex.

As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.

I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS!

If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

 Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment

Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update 

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC

>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Yes, ! Thank you! You said what I was not able to put into words! And Heidi, I may just have to go on down to Cafe Du Monde, and have a Beignet for the both of us!  Defiantly a good sugary confection!

Hope you are feeling better soon, keep hanging in there!   On Wed, Aug 18, 2010 at 9:54 PM, 216sa tds.net <216sa@...> wrote:

Just a bit of a different perspective here, and I don't meant this disrespectfully at all--I know that no matter where a person is in this casting trip it is hard---but, in my opinion, what REALLY sucks is when you don't even have the option of 8-10-12 casts...

      Wed, Aug 18, 2010 at 7:32 PM, NIck Guthe <nickguthe@...> wrote:

 

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:

I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.

I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.

Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.

But if it doesn't go that way,  we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.

I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS!

If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

 

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>

infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PM

Subject: Re: Bex update

 

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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This road is such a hard and long one no matter where you are in the journey and/or course of treatment. We are all parents to kids who have to go through so much! Heidi, you are always so supportive and helpful to everyone and especially new members who are shell shocked...you deserve a pity party every now and then just like all of us do. As a parent who has been on the casting journey and now the growing rod journey....it is all hard, doesn't matter which side of the fence it is. It is all sucky! But thank goodness for this group, for Dr. Mehta and all the courageous doctors who are treating our children...so we have options. Heidi we have all been where you at....I find myself there often, but then I look at my sweet boy and thank God for all of it. Thoughts are with you all and I had chocolate and wine tonight, all I am missing is something deep fried! Mom to tyler and lily and Matson: 4.5 yrs old, 5 casts, 2 braces, Dual Growin Rods implanted March 24, 2010. 1st lengthening scheduled for October 13, 2010. FournierSent from my iPhoneOn Aug 18, 2010, at 9:09 PM, "216sa tds.net" <216sa@...> wrote:

Yes, ! Thank you! You said what I was not able to put into words! And Heidi, I may just have to go on down to Cafe Du Monde, and have a Beignet for the both of us! Defiantly a good sugary confection!

Hope you are feeling better soon, keep hanging in there! On Wed, Aug 18, 2010 at 9:54 PM, 216sa tds.net <216sa@...> wrote:

Just a bit of a different perspective here, and I don't meant this disrespectfully at all--I know that no matter where a person is in this casting trip it is hard---but, in my opinion, what REALLY sucks is when you don't even have the option of 8-10-12 casts...

Wed, Aug 18, 2010 at 7:32 PM, NIck Guthe <nickguthe@...> wrote:

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:

I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.

I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.

Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.

But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.

I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS!

If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>

infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PM

Subject: Re: Bex update

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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Heidi,

Thank you for sharing you story and wanting to do more. I was lost before I

found ISOP, this group and my Chicago Sisters. We are just starting this process

and have our first appointment in 2 weeks.

I blog as well and find it a huge release. I blog about adoption, my daughter,

Ethiopia sometimes and I just added a section about Kiya's scoliosis. It is my

sounding board.

As I was eating my Dairy Queen blizzard last night I was toasting you and how

supportive you are and sending good vibes that all the pieces fall into place.

hang in there!

Kiya, 20 months, 36* curve, adopted from Ethiopia

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Heidi I feel like I am going through that same pitty party everyday. People ask me how is doing and I can't even tell them that he is improving. I can just only focus on the fact that most people get the same correction in the first few casts that it has taken us now five to achieve. i just keep thinking that if this keeps going, best case, the way it is now we will still be up to twelve or so cast before we are done. I feel like this is all my fault too. When we first found out about 's scoli, he was six months, I did find the ISOP website. But like most people, I thought my doctor knew what was best for and i decided not to "waste my time joining CAST." That was the biggest mistake I have ever made. We waited almost a full year under the authority of our doctor, and I was still in a cloud of

ignorance when I finally did join CAST. Then it was like all the light flicked on at once. Everything came together so quickly I can't help but imagine what would have been if I would have joined in the first place. I HATE scoliosis too. At this point I have developed a love/hate relationship with casting too. I love what it is doing for , but I hate what it is doing to our family. We are thousands of dollars in debt and with each cast it is getting worse. I just have to focus on the positives but it is next to impossible. You can rejoice, like , you have helped several families in their journey. First you helped us, you gave us a lot of useful information, and I mean YOU specifically. You were the first family we met through cast, in person, and then we passed what we learned from you onto the Pollands, and I am sure that it is only a matter of time before they meet a young family and pass their knowledge to them. You are

making a huge triangle of difference. Thank you. Well I have to run I smell something stinky and I don't need a mess.Beth RettingerMother of In Fifth Cast From SLCFrom: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Date: Wednesday, August 18, 2010, 8:32 PM

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the

dip. Please have an adult beverage or sugar laden confection on me. Or something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We

know it.Here is what GOOD could happen and I do believe it could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for

Bex. As much as casting can suck- a lot of the time it's just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,

After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?

mom to Audrey, 3rd cast, SLC

>

> Bex is safely in a bright green Incredible Skinny Hulk cast!

> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.

> The very good news is he now has almost NO rotation- he began casting with severe rotation.

> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.

>

> Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

>

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Heidi, I just wanted to say that you are entitled to as many pity parties as you want to throw and I promise to attend each and every one of them! Dr.P has said that Nora WILL require rods or a veptr at 7 or 8 years of age unless a miracle occurs. That means that she will have 9 to 12 more casts on top of the 8 she has had already! I am just thankful she gets to brace for summer or I would be crazy by the time she's had 20 or so casts. Only God knows why these children have to endure what they're going through, everything happens for a purpose I suppose, even if we don't understand why. I just wanted you to know that I was thinking about you and Bex and that I hope you rsvp to my next pity party which will probably be in October. Sending ♥LOVE♥ and ((HUGS)) your way!!!

Tonya Perkins

Asheboro,NC

mother of ,11 &

Nora,4 scoliosis, acid reflux

bracing for summer

9th cast Oct.13th

Greenville Shriners,SC

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 8:32:44 PMSubject: Bexon update/pity party

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or

something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it

could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one

of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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You have every right to be angry, frustrated and worn out by this whole process. I have pity parties all the time, but I noticed that people have stopped coming to them...LOL.

Keep your chin up and know you are not alone. Scoliosis SUCKS and I think everyone on this group would agree

Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 7:32:44 PMSubject: Bexon update/pity party

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or

something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it

could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one

of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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That is what we need on tshirts...SCOLIOSIS SUCKS!

From: Joan Vallee <hayro1611@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 10:58:49 AMSubject: Re: Bexon update/pity party

You have every right to be angry, frustrated and worn out by this whole process. I have pity parties all the time, but I noticed that people have stopped coming to them...LOL.

Keep your chin up and know you are not alone. Scoliosis SUCKS and I think everyone on this group would agree

Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 7:32:44 PMSubject: Bexon update/pity party

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or

something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it

could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one

of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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That is what we need on tshirts...SCOLIOSIS SUCKS!

From: Joan Vallee <hayro1611@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 10:58:49 AMSubject: Re: Bexon update/pity party

You have every right to be angry, frustrated and worn out by this whole process. I have pity parties all the time, but I noticed that people have stopped coming to them...LOL.

Keep your chin up and know you are not alone. Scoliosis SUCKS and I think everyone on this group would agree

Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 7:32:44 PMSubject: Bexon update/pity party

Sorry for the rant I am about to express, but that is why we have this amazing group. There is only one reason we are not done with casts by now, and that is the ignorance of the medical community and our first ortho who kept us watching and waiting for 4 months while Bexon severely, dangerously curved. We can't go backwards, it is what it is, you can't hold on to anger....BUT:I HATE SCOLIOSIS!!! If you are reading this and you are new, please do not let your doctor keep you waiting while your child's spine gets dangerously worse. It will make the treatment far more difficult in the long run.I am angry that Bexon will have such a long road. I am sick and tired of casts and cast trips. Welcome to my pity party, I apologize in advance that the hostess is such a wreck. Enjoy the dip. Please have an adult beverage or sugar laden confection on me. Or

something fried containing a lot of cheese.If my doctor- Bex's doctor read this- I know he won't but it bears saying- I think he is one of the best doctors and greatest men who ever walked the face of planet Earth, and he is doing EVERYTHING right. I worship his practice and his grace. 5 years ago we would not have had this treatment available to us. We are one of the luckiest families to be treated at SLC. But just 2-3 months sooner in casts and we could have been done by now! I am grateful my son is alive. His light and joy is the reason I breathe in and out all day. But the unknown future is wearing and draining. My 3 year old has had anesthesia 11 times. That is wrong and it didn't need to happen.Shriners and ISOP- with Dr. Mehta's pioneering practice- saved my child, I know it and I can barely believe how close we came to missing this treatment. We are lucky. We know it.Here is what GOOD could happen and I do believe it

could: Bex could get down to 18, 15, even 10 degrees in cast in the next 3 casts, then improve even more potentially in a brace, since the casts are curing his rotation. By age 4 he will likely be in a light brace and by age 5 he could be even better, even straighter than when we finish casts. So I am still optimistic.But if it doesn't go that way, we will cast 2-3 more times, then brace, then go back into casts if he regresses, then if we have to we will do more bracing and casting and even halo traction before I would dream of growing rods or VEPTR. That is just my opinion for Bex, boys grow longer than girls and I won't do anything to shorten his growing time if I can avoid it. I will do growing rod surgery if necessary, of course, as a last resort. I do not think repeated surgeries every six months would be easier at all, I think it would be much harder- for us and for Bex. As much as casting can suck- a lot of the time it's

just normal life. The casts are temporary. Setbacks and getting stuck- that is hard. BUT we got improvement in rotation, and that happy thought WILL sink into my feeble brain once I stop crying.I know I am feeling negative from lack of sleep, travel and essentially 4 casts with very little change in the main COBB angle- I know I shouldn't focus on numbers, but if you are in this scoliosis fight with your child, numbers DO matter! This is a very, very hard thing to go through. One cast is hard, 8-10-12 SUCKS! If you are new, ACT FAST! Don't end up like us!!!I am tired right now, but I I will rise and fight and dream and hope. It's not over 'til the fat lady who ate all of Salt Lake City sings.

Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)

From: audreymdawson <audreymdawson@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 1:12:52 PMSubject: Re: Bex update

Heidi,After so many casts, holding at 20 degrees must be disappointing and frustrating! What did Dr. D'A say about it?mom to Audrey, 3rd cast, SLC>> Bex is safely in a bright green Incredible Skinny Hulk cast!> He is still holding in cast at about 20 degrees.I am sad we didn't get a leap there. Out of cast he is probably 30-35 degrees, and this Mother does not feel safe at that number.> The very good news is he now has almost NO rotation- he began casting with severe rotation.> Thank you so much for your posts and prayers, we will press on for 2-3 more casts at least, praying for lower numbers by then. It's emotional each and every trip, but we met The Hannahs- Noah is one

of our biggest inspirations- he looks just awesome in his brace! And we got to meet Olivia and her family- a treat. You CAST parents are the cream of the crop.> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)>

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Heidi,

I've met you and I don't think you exactly qualify as the " fat lady who ate all

of Salt Lake City " :). You managed to turn your anger and disappointment into

an entertaining read - must be the writer in you! I can feel your frustration,

as can all the parents who are in for a long road of casting and potential

surgery. The truth is NOT ONE of us knows the outcome for our child, and that

is scary. As worried as I get about eventual surgery for Audrey and believe me

I have become a world-champion at that, I am grateful that we live in a time

where there are procedures that can help our children's spines grow straighter.

I can't even think what infantile scoliosis did to babies 50 years ago. You

have been doing the tiring trips for a long time and even though the results are

not as great as some, they're also better than others. You made great emphasis

to new people on not waiting. I agree!!!!!! After finding out that Audrey will

probably need surgery we went to see the doctor that you're so angry with (since

he's a surgery expert)to find out the best possible options for Audrey. He

looked at Audrey's in-cast x-rays and declared that her spine is being held much

better in the cast than it would be in a brace and that we should cast her as

long as we can! Can you believe it? I think your family made a believer out of

this doctor. I hope this gives you a small measure of comfort...

mom to Audrey, 3rd cast, SLC

> >

> > Bex is safely in a bright green Incredible Skinny Hulk cast!

> > He is still holding in cast at about 20 degrees.I am sad we didn't get a

leap

> >there. Out of cast he is probably 30-35 degrees, and this Mother does not

feel

> >safe at that number.

> > The very good news is he now has almost NO rotation- he began casting with

> >severe rotation.

> > Thank you so much for your posts and prayers, we will press on for 2-3 more

> >casts at least, praying for lower numbers by then. It's emotional each and

every

> >trip, but we met The Hannahs- Noah is one of our biggest inspirations- he

looks

> >just awesome in his brace! And we got to meet Olivia and her family- a treat.

> >You CAST parents are the cream of the crop.

> >

> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City

Shriners,

> >currently down from 62 degrees to 20 in cast)

> >

>

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Beth,

I read your post to Heidi and you mentioned being in debt. I don't know if it

has anything to do with traveling expenses, but if so, you might talk to your

local Shriners temple about helping. Many will pay for gas or lodging or 2

plane tickets. Just a thought...

mom to Audrey, 3rd cast, SLC

>

> >

>

> > Bex is safely in a bright green Incredible Skinny Hulk cast!

>

> > He is still holding in cast at about 20 degrees.I am sad we didn't get a

leap there. Out of cast he is probably 30-35 degrees, and this Mother does not

feel safe at that number.

>

> > The very good news is he now has almost NO rotation- he began casting with

severe rotation.

>

> > Thank you so much for your posts and prayers, we will press on for 2-3 more

casts at least, praying for lower numbers by then. It's emotional each and every

trip, but we met The Hannahs- Noah is one of our biggest inspirations- he looks

just awesome in his brace! And we got to meet Olivia and her family- a treat.

You CAST parents are the cream of the crop.

>

> >

>

> > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City

Shriners, currently down from 62 degrees to 20 in cast)

>

> >

>

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