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So true, and heartbreaking. And that is coming from someone who may still be facing those surgeries with my child. Even one bad cast sore could put us there. It is scary to live with all of these unknowns, but I have to remain optimistic for my son. I guess at least there is the surgical option, better than not having it at all. None of it is ideal. Again, we know we are lucky. 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 8:47:37 PMSubject: Re: Bexon update/pity party

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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Thank you, you too : ) 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 9:09:33 PMSubject: Re:

Bexon update/pity party

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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Thank you, Steph, you have already gone through so much with your sweet boy! I love to see his happy pictures. Chocolate and wine sound good to me! I would never trade my sweet boy for one with a perfect spine. I wouldn't give him back for life itself! Nick and I were just talking about how it's hard to express to other parents who haven't gone through something like this that it is the chronic nature that is so hard- it is so much worse than any of our own problems, when it's your baby.Of course, while I process things, Bex is happy as a clam. I'll post some pictures. 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: Fournier <mattnsteph4nier@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Wed, August 18, 2010 11:55:18 PMSubject: Re: Bexon update/pity party

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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I'd definately buy one!!!

Tonya Perkins

Asheboro,NC

mother of ,11 &

Nora,4 scoliosis, acid reflux

bracing for summer

9th cast Oct.13th

Greenville Shriners,SC

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 1:54:46 PMSubject: Re: Bexon update/pity party

I wish we could do that!!! ha ha!!> That is what we need on tshirts...SCOLIOSIS SUCKS!>>>  >>>> ________________________________> From: Joan Vallee <hayro1611@...>> infantile scoliosis treatment > Sent: Thu, August 19, 2010 10:58:49 AM> Subject: 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>> Â Joan> mom to Hayden 3> 39 degrees down from 62> After 4 casts, now in a brace 23 hours/day> Treated at ish Rite Hospital> Dallas, TX>>>>> ________________________________> From: NIck Guthe <nickguthe@...>> infantile scoliosis treatment > Sent: Wed, August 18, 2010 7:32:44 PM> Subject: Bexon update/pity party>> Â >> 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>> Â > 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'd definately buy one!!!

Tonya Perkins

Asheboro,NC

mother of ,11 &

Nora,4 scoliosis, acid reflux

bracing for summer

9th cast Oct.13th

Greenville Shriners,SC

From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 1:54:46 PMSubject: Re: Bexon update/pity party

I wish we could do that!!! ha ha!!> That is what we need on tshirts...SCOLIOSIS SUCKS!>>>  >>>> ________________________________> From: Joan Vallee <hayro1611@...>> infantile scoliosis treatment > Sent: Thu, August 19, 2010 10:58:49 AM> Subject: 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>> Â Joan> mom to Hayden 3> 39 degrees down from 62> After 4 casts, now in a brace 23 hours/day> Treated at ish Rite Hospital> Dallas, TX>>>>> ________________________________> From: NIck Guthe <nickguthe@...>> infantile scoliosis treatment > Sent: Wed, August 18, 2010 7:32:44 PM> Subject: Bexon update/pity party>> Â >> 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>> Â > 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 wish we could do that!!! ha ha!!

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

>

>

>  

>

>

>

> ________________________________

> From: Joan Vallee <hayro1611@...>

> infantile scoliosis treatment

> Sent: Thu, August 19, 2010 10:58:49 AM

> Subject: 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

>

>  Joan

> mom to Hayden 3

> 39 degrees down from 62

> After 4 casts, now in a brace 23 hours/day

> Treated at ish Rite Hospital

> Dallas, TX

>

>

>

>

> ________________________________

> From: NIck Guthe <nickguthe@...>

> infantile scoliosis treatment

> Sent: Wed, August 18, 2010 7:32:44 PM

> Subject: 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 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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Oh Beth, it is not your fault, we all trusted our doctors! I really appreciate you saying that we helped, it means a lot to me and to us. You have already helped others, too, and that is what we have to give from this whole crazy, deeply unfair circumstance! I remind myself that there are children with much more difficult conditions, of course, and sometimes I love the cast- don't mind it at all- other times...you know. Blech.I'm so sorry about the debt, it adds to the stress. We have money worries, too, so I relate- only because my father died 4 months after Bex was born, never meeting him, we had a little money as a cushion in the first year of this. But we may have 15 years to go- or more, so that stress is still there. I can also see us in 12 casts- UGH!!! I too feel the love/hate

relationship- I would travel to NY or even Europe if we had to to keep Bex in casts, but I am pretty sick of it at the moment. My cells ache and want to weep at the though of the next trip. I'm sure that will pass soon, it always does- it is just wearing. I feel your pain and am sending you a big HUG!!! 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: Leeper <bethanney05@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 6:29:28 AMSubject: Re: Bexon update/pity party

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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Oh Beth, it is not your fault, we all trusted our doctors! I really appreciate you saying that we helped, it means a lot to me and to us. You have already helped others, too, and that is what we have to give from this whole crazy, deeply unfair circumstance! I remind myself that there are children with much more difficult conditions, of course, and sometimes I love the cast- don't mind it at all- other times...you know. Blech.I'm so sorry about the debt, it adds to the stress. We have money worries, too, so I relate- only because my father died 4 months after Bex was born, never meeting him, we had a little money as a cushion in the first year of this. But we may have 15 years to go- or more, so that stress is still there. I can also see us in 12 casts- UGH!!! I too feel the love/hate

relationship- I would travel to NY or even Europe if we had to to keep Bex in casts, but I am pretty sick of it at the moment. My cells ache and want to weep at the though of the next trip. I'm sure that will pass soon, it always does- it is just wearing. I feel your pain and am sending you a big HUG!!! 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: Leeper <bethanney05@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 6:29:28 AMSubject: Re: Bexon update/pity party

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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Tonya,I promise I will be there for your pity party, with bells on! 20 casts- that is beyond a marathon. I will pray for your miracle for Nora the whole way. I too hope that this is happening for a reason, and that we will all make it out of the other side stronger and happier and more blessed than before!!! 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: tonya williams <jamienoramom@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 7:48:17 AMSubject: Re: Bexon update/pity party

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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Tonya,I promise I will be there for your pity party, with bells on! 20 casts- that is beyond a marathon. I will pray for your miracle for Nora the whole way. I too hope that this is happening for a reason, and that we will all make it out of the other side stronger and happier and more blessed than before!!! 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: tonya williams <jamienoramom@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 7:48:17 AMSubject: Re: Bexon update/pity party

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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Thank you, Joan, I will ALWAYS come to your pity party and I'll wear a hat! Keep your chin up too, HUGS!!! 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: Joan Vallee <hayro1611@...>infantile scoliosis treatment Sent: Thu, August

19, 2010 7:58:49 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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Thank you, Joan, I will ALWAYS come to your pity party and I'll wear a hat! Keep your chin up too, HUGS!!! 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: Joan Vallee <hayro1611@...>infantile scoliosis treatment Sent: Thu, August

19, 2010 7:58:49 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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The Pie is great, isn't it? Someone on this group recommended it.

> > >

> > > 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 know we have all felt similar frustrations at one time or another. It's hard to watch you little one endure all of this. Like you, I know that there are other kids that have had to go through so much more than mine have, but it's still hard some days to not feel sorry for them (and yourself). I was feeling the same way last night. I was telling my husband that I won't be able to take it if they recommend that Ian go back into full time bracing. Of course I will, but it's tiresome. I do hope new parents reading your post take your advice and not wait. It's heartbreaking when you see kids who could have benefitted from casting that end up having to have multiple surgeries and

lifelong complications. Noelle (12-2-01)Ian (8-15-04) 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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Heidi,I know we have all felt similar frustrations at one time or another. It's hard to watch you little one endure all of this. Like you, I know that there are other kids that have had to go through so much more than mine have, but it's still hard some days to not feel sorry for them (and yourself). I was feeling the same way last night. I was telling my husband that I won't be able to take it if they recommend that Ian go back into full time bracing. Of course I will, but it's tiresome. I do hope new parents reading your post take your advice and not wait. It's heartbreaking when you see kids who could have benefitted from casting that end up having to have multiple surgeries and

lifelong complications. Noelle (12-2-01)Ian (8-15-04) 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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,I know, I actually beat myself up a bit because I get "post cast blues" like this, when others are going through so much more. But it is all relative- it is your family, your child going through it, and it's painful sometimes. I think the same thing, I won't be able to take it- God forbid, back and forth in casts, even potentially when Bex is much older and it would be far harder than at this age. I bounce back, as you do, but...When Bex cried "Mommy!" and reached out for me as Mike our great PA carried his little body through the doors to the surgical room this time- and I had to say "It's okay, Bex" and turn and walk away...I know it's best for him, but it just...sucks. 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: poohlvr <poohlvr1020@...>infantile scoliosis treatment Sent: Thu, August 19, 2010 1:10:07 PMSubject: Re: Bexon update/pity party

Heidi,I know we have all felt similar frustrations at one time or another. It's hard to watch you little one endure all of this. Like you, I know that there are other kids that have had to go through so much more than mine have, but it's still hard some days to not feel sorry for them (and yourself). I was feeling the same way last night. I was telling my husband that I won't be able to take it if they recommend that Ian go back into full time bracing. Of course I will, but it's tiresome. I do hope new parents reading your post take your advice and not wait. It's heartbreaking when you see kids who could have benefitted from casting that end up having to have multiple surgeries and

lifelong complications. Noelle (12-2-01)Ian (8-15-04) 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 go right ahead and rant Heidi!! I is frustrating and damn madening!!! Try to hang in there.

From: NIck Guthe <nickguthe@...>Subject: Bexon update/pity partyinfantile scoliosis treatment Received: Wednesday, August 18, 2010, 5:32 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 love this idea Heidi and you can bet if that book is published, I will be buying it! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wed, August 18, 2010 10:27:06 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,

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 will come to your pity party or anyone else's that wants me to attend! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)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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