Re: Yesterday's appointment

February 9, 2011

Hi Suzy,

I dont have time to read all posts this a.m., but am so glad I read this one! I

cant wait to hear details. May be we can talk later?

Way to advocate for your son, hon! Go Shane!

(hugs)

HRH

>

> Good morning all,

>

> Well, after a very long day, yesterday, I have good news and bad. The

> good news is that Shane will continue to be treated at Shriner's in Philly

with

> Dr. C (BIG THANKS TO HEATHER FOR THAT). The bad news is that Dr. C

> confirmed what Dr. V at Stanley at New York Presbyterian told me.

Shane

> will inevitably need to have surgery to implant growing rods. I am so

> upset by this. His 10/6/10 scoliosis x-ray was measured by 3 different

orthos

> at 3 different facilities. They measured his middle curve (he has 3 (a

> top, a middle and a lower)) a 52Âº, 53Âº and 55Âº respectively. When he was

> casted by Dr. V on 1/11/11, they never took an x-ray after. They gave me

what

> looked like a sonogram and told me that, " it looked like the curve is now

> in the mid 20's " . Yesterday, Dr. C ordered an x-ray for Shane in the cast

> and the middle curve he now measured at 38Âº. So, there is some change but

> we won't know if it's going to hold. Dr. C did tell me that Dr. V did a

> great job with the cast and that it looks great. He said that because of

> Shane's age (3 years old) that he will leave this cast on until April. He

> said that at this age, they change it every 3 months. So, I thought we only

> had to wait 4 more weeks to find out if the curve will hold out of cast, but

> now it's 8 weeks. I feel like I'm starting the countdown all over again.

> I will be continuing with Shriners in Philly and with Dr. C. Those people

> are AMAZING and very compassionate. Dr. C's plan is to cast Shane every 3

> months (with a 2 day break) until 1st grade. Then put him in a brace

> until his early tween-teen years (if it works). If the casting starts to

show

> no more improvement, then they'll stop the casting. If he makes it into a

> brace and it shows regression, then they'll go back to casting. But,

> regardless, Dr. C feels that at some point he will need the growing rods

> implanted. This is the one time I hope that the doctors are wrong. All I

have is

> HOPE and I have to hope that the casting will work until he's old enough

> to get his spine fused without any implants.

>

> Thank you, everyone, for your help and advice as I continue to get Shane

> the proper treatment. I know I'm in the right place (both here and

> Shriner's). I don't know where Shane and I would be (treatment wise,

mentally,

> emotionally, etc.) if not for this group and . You guys are the best.

> And just because Shane is on the right course, I'm not going anywhere. I

> AM HERE TO STAY. And I will continue to raise money for ISOP. We need to

> get the awareness out there to help other children get the proper treatment.

>

> Have a great day, everyone.

>

> SUZY ÂºOÂº

> suzy3333

>

> In a message dated 2/8/2011 9:03:00 A.M. Eastern Standard Time,

> suzy3333@... writes:

>

> I am taking Shane to Shriner's in Philly today. I am hoping that they take

> Shane on as a patient and not hold it against us that he has already been

> casted elsewhere. I am also hoping that they tell me that the cast Shane was

> put into on 1/11/11 is appropriate and that we didn't do it for nothing.

> After speaking with (she is an angel that without her, I would be

> clueless), I fear that he's in the wrong cast (his starts at a little under

> the armpits). I fear that because of the curve on top that maybe he should

> be in an over the shoulder cast. He has 3 curves. I don't know how you guys

> post the x-rays on here. If I could figure it out, I would post it to show

> you.

>

> Anyway, wish me and Shane luck. And if you know of any questions I should

> ask Dr. C, please, please, please, let me know. I'll be checking my email

> throughout the day.

>

> Have a great day, everyone. I will update tonight when I get home (and the

> babies go to bed). , I will call you tonight as well.

>

> Suzanne

>

February 9, 2011

Suzy,Wow. Did you write our story? Because I feel like you did.I'll post an update on shortly, but, I know how you feel. was just put into a Risser cast two weeks ago. She only has one curve, but she is at 57* out of the cast, and is at 35* in the cast. Her doctor wants to do the same thing - cast for three months, with a two day break.

Hang in there. This is really tough, but you're not alone.Father to , 3 years old, first Risser cast, 57* before/35* in cast

On Wed, Feb 9, 2011 at 6:00 AM, <suzy3333@...> wrote:

Good morning all,

Well, after a very long day, yesterday, I have good news and bad. The good news is that Shane will continue to be treated at Shriner's in Philly with Dr. C (BIG THANKS TO HEATHER FOR THAT). The bad news is that Dr. C confirmed what Dr. V at Stanley at New York Presbyterian told me. Shane will inevitably need to have surgery to implant growing rods. I am so upset by this. His 10/6/10 scoliosis x-ray was measured by 3 different orthos at 3 different facilities. They measured his middle curve (he has 3 (a top, a middle and a lower)) a 52º, 53º and 55º respectively. When he was casted by Dr. V on 1/11/11, they never took an x-ray after. They gave me what looked like a sonogram and told me that, " it looked like the curve is now in the mid 20's " . Yesterday, Dr. C ordered an x-ray for Shane in the cast and the middle curve he now measured at 38º. So, there is some change but we won't know if it's going to hold. Dr. C did tell me that Dr. V did a great job with the cast and that it looks great. He said that because of Shane's age (3 years old) that he will leave this cast on until April. He said that at this age, they change it every 3 months. So, I thought we only had to wait 4 more weeks to find out if the curve will hold out of cast, but now it's 8 weeks. I feel like I'm starting the countdown all over again. I will be continuing with Shriners in Philly and with Dr. C. Those people are AMAZING and very compassionate. Dr. C's plan is to cast Shane every 3 months (with a 2 day break) until 1st grade. Then put him in a brace until his early tween-teen years (if it works). If the casting starts to show no more improvement, then they'll stop the casting. If he makes it into a brace and it shows regression, then they'll go back to casting. But, regardless, Dr. C feels that at some point he will need the growing rods implanted. This is the one time I hope that the doctors are wrong. All I have is HOPE and I have to hope that the casting will work until he's old enough to get his spine fused without any implants.

Thank you, everyone, for your help and advice as I continue to get Shane the proper treatment. I know I'm in the right place (both here and Shriner's). I don't know where Shane and I would be (treatment wise, mentally, emotionally, etc.) if not for this group and . You guys are the best. And just because Shane is on the right course, I'm not going anywhere. I AM HERE TO STAY. And I will continue to raise money for ISOP. We need to get the awareness out there to help other children get the proper treatment.

Have a great day, everyone.

SUZY ºOºsuzy3333

In a message dated 2/8/2011 9:03:00 A.M. Eastern Standard Time, suzy3333@... writes:

I am taking Shane to Shriner's in Philly today. I am hoping that they take Shane on as a patient and not hold it against us that he has already been casted elsewhere. I am also hoping that they tell me that the cast Shane was put into on 1/11/11 is appropriate and that we didn't do it for nothing. After speaking with (she is an angel that without her, I would be clueless), I fear that he's in the wrong cast (his starts at a little under the armpits). I fear that because of the curve on top that maybe he should be in an over the shoulder cast. He has 3 curves. I don't know how you guys post the x-rays on here. If I could figure it out, I would post it to show you.Anyway, wish me and Shane luck. And if you know of any questions I should ask Dr. C, please, please, please, let me know. I'll be checking my email throughout the day. Have a great day, everyone. I will update tonight when I get home (and the babies go to bed). , I will call you tonight as well.Suzanne

February 9, 2011

Don't lose hope for Shane! Miracles do happen...and why not for him?? So glad

you were in contact w/ and she helped to direct you to a place you feel

comfortable. She's truly an angel.

Best of luck to you,

suzy3333@... wrote:

>Good morning all,

>

>Well, after a very long day, yesterday, I have good news and bad. The

>good news is that Shane will continue to be treated at Shriner's in Philly with

> Dr. C (BIG THANKS TO HEATHER FOR THAT). The bad news is that Dr. C

>confirmed what Dr. V at Stanley at New York Presbyterian told me.

Shane

>will inevitably need to have surgery to implant growing rods. I am so

>upset by this. His 10/6/10 scoliosis x-ray was measured by 3 different orthos

>at 3 different facilities. They measured his middle curve (he has 3 (a

>top, a middle and a lower)) a 52Âº, 53Âº and 55Âº respectively. When he was

>casted by Dr. V on 1/11/11, they never took an x-ray after. They gave me what

>looked like a sonogram and told me that, " it looked like the curve is now

>in the mid 20's " . Yesterday, Dr. C ordered an x-ray for Shane in the cast

>and the middle curve he now measured at 38Âº. So, there is some change but

>we won't know if it's going to hold. Dr. C did tell me that Dr. V did a

>great job with the cast and that it looks great. He said that because of

>Shane's age (3 years old) that he will leave this cast on until April. He

>said that at this age, they change it every 3 months. So, I thought we only

>had to wait 4 more weeks to find out if the curve will hold out of cast, but

>now it's 8 weeks. I feel like I'm starting the countdown all over again.

>I will be continuing with Shriners in Philly and with Dr. C. Those people

>are AMAZING and very compassionate. Dr. C's plan is to cast Shane every 3

>months (with a 2 day break) until 1st grade. Then put him in a brace

>until his early tween-teen years (if it works). If the casting starts to show

>no more improvement, then they'll stop the casting. If he makes it into a

>brace and it shows regression, then they'll go back to casting. But,

>regardless, Dr. C feels that at some point he will need the growing rods

>implanted. This is the one time I hope that the doctors are wrong. All I

have is

>HOPE and I have to hope that the casting will work until he's old enough

>to get his spine fused without any implants.

>

>Thank you, everyone, for your help and advice as I continue to get Shane

>the proper treatment. I know I'm in the right place (both here and

>Shriner's). I don't know where Shane and I would be (treatment wise,

mentally,

>emotionally, etc.) if not for this group and . You guys are the best.

>And just because Shane is on the right course, I'm not going anywhere. I

>AM HERE TO STAY. And I will continue to raise money for ISOP. We need to

>get the awareness out there to help other children get the proper treatment.

>

>Have a great day, everyone.

>

>SUZY ÂºOÂº

>suzy3333

>

>In a message dated 2/8/2011 9:03:00 A.M. Eastern Standard Time,

>suzy3333@... writes:

>

>I am taking Shane to Shriner's in Philly today. I am hoping that they take

>Shane on as a patient and not hold it against us that he has already been

>casted elsewhere. I am also hoping that they tell me that the cast Shane was

> put into on 1/11/11 is appropriate and that we didn't do it for nothing.

>After speaking with (she is an angel that without her, I would be

>clueless), I fear that he's in the wrong cast (his starts at a little under

>the armpits). I fear that because of the curve on top that maybe he should

>be in an over the shoulder cast. He has 3 curves. I don't know how you guys

>post the x-rays on here. If I could figure it out, I would post it to show

>you.

>

>Anyway, wish me and Shane luck. And if you know of any questions I should

>ask Dr. C, please, please, please, let me know. I'll be checking my email

>throughout the day.

>

>Have a great day, everyone. I will update tonight when I get home (and the

>babies go to bed). , I will call you t

February 10, 2011

Best of luck to Shane! I hope it all works out.TSent from my iPhoneOn Feb 9, 2011, at 8:00 AM, suzy3333@... wrote:

Good morning all,

Well, after a very long day, yesterday, I have good news and bad. The good news is that Shane will continue to be treated at Shriner's in Philly with Dr. C (BIG THANKS TO HEATHER FOR THAT). The bad news is that Dr. C confirmed what Dr. V at Stanley at New York Presbyterian told me. Shane will inevitably need to have surgery to implant growing rods. I am so upset by this. His 10/6/10 scoliosis x-ray was measured by 3 different orthos at 3 different facilities. They measured his middle curve (he has 3 (a top, a middle and a lower)) a 52º, 53º and 55º respectively. When he was casted by Dr. V on 1/11/11, they never took an x-ray after. They gave me what looked like a sonogram and told me that, "it looked like the curve is now in the mid 20's". Yesterday, Dr. C ordered an x-ray for Shane in the cast and the middle curve he now measured at 38º. So, there is some change but we won't know if it's going to hold. Dr. C did tell me that Dr. V did a great job with the cast and that it looks great. He said that because of Shane's age (3 years old) that he will leave this cast on until April. He said that at this age, they change it every 3 months. So, I thought we only had to wait 4 more weeks to find out if the curve will hold out of cast, but now it's 8 weeks. I feel like I'm starting the countdown all over again. I will be continuing with Shriners in Philly and with Dr. C. Those people are AMAZING and very compassionate. Dr. C's plan is to cast Shane every 3 months (with a 2 day break) until 1st grade. Then put him in a brace until his early tween-teen years (if it works). If the casting starts to show no more improvement, then they'll stop the casting. If he makes it into a brace and it shows regression, then they'll go back to casting. But, regardless, Dr. C feels that at some point he will need the growing rods implanted. This is the one time I hope that the doctors are wrong. All I have is HOPE and I have to hope that the casting will work until he's old enough to get his spine fused without any implants.

Thank you, everyone, for your help and advice as I continue to get Shane the proper treatment. I know I'm in the right place (both here and Shriner's). I don't know where Shane and I would be (treatment wise, mentally, emotionally, etc.) if not for this group and . You guys are the best. And just because Shane is on the right course, I'm not going anywhere. I AM HERE TO STAY. And I will continue to raise money for ISOP. We need to get the awareness out there to help other children get the proper treatment.

Have a great day, everyone.

SUZY ºOºsuzy3333

In a message dated 2/8/2011 9:03:00 A.M. Eastern Standard Time, suzy3333@... writes:

I am taking Shane to Shriner's in Philly today. I am hoping that they take Shane on as a patient and not hold it against us that he has already been casted elsewhere. I am also hoping that they tell me that the cast Shane was put into on 1/11/11 is appropriate and that we didn't do it for nothing. After speaking with (she is an angel that without her, I would be clueless), I fear that he's in the wrong cast (his starts at a little under the armpits). I fear that because of the curve on top that maybe he should be in an over the shoulder cast. He has 3 curves. I don't know how you guys post the x-rays on here. If I could figure it out, I would post it to show you.Anyway, wish me and Shane luck. And if you know of any questions I should ask Dr. C, please, please, please, let me know. I'll be checking my email throughout the day. Have a great day, everyone. I will update tonight when I get home (and the babies go to bed). , I will call you tonight as well.Suzanne

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February 10, 2011

You are doing the best thing possible, as you know, and hang on to that hope! Older children have showed great improvement. Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: "suzy3333@..." <suzy3333@...>infantile scoliosis treatment Sent: Wed, February 9, 2011 6:00:23 AMSubject: Yesterday's appointment

Good morning all,

Well, after a very long day, yesterday, I have good news and bad. The good news is that Shane will continue to be treated at Shriner's in Philly with Dr. C (BIG THANKS TO HEATHER FOR THAT). The bad news is that Dr. C confirmed what Dr. V at Stanley at New York Presbyterian told me. Shane will inevitably need to have surgery to implant growing rods. I am so upset by this. His 10/6/10 scoliosis x-ray was measured by 3 different orthos at 3 different facilities. They measured his middle curve (he has 3 (a top, a middle and a lower)) a 52Âº, 53Âº and 55Âº respectively. When he was casted by Dr. V on 1/11/11, they never took an x-ray after. They gave me what looked like a sonogram and told me that, "it looked like the curve is now in the mid 20's". Yesterday, Dr. C ordered an x-ray for Shane in the cast and the middle curve he now measured at 38Âº. So, there is some change but we won't know if it's going to hold. Dr. C did tell me that Dr. V did a great job with the cast and that it looks great. He said that because of Shane's age (3 years old) that he will leave this cast on until April. He said that at this age, they change it every 3 months. So, I thought we only had to wait 4 more weeks to find out if the curve will hold out of cast, but now it's 8 weeks. I feel like I'm starting the countdown all over again. I will be continuing with Shriners in Philly and with Dr. C. Those people are AMAZING and very compassionate. Dr. C's plan is to cast Shane every 3 months (with a 2 day break) until 1st grade. Then put him in a brace until his early tween-teen years (if it works). If the casting starts to show no more improvement, then they'll stop the casting. If he makes it into a brace and it shows regression, then they'll go back to casting. But, regardless, Dr. C feels that at some point he will need the growing rods implanted. This is the one time I hope that the doctors are wrong. All I have is HOPE and I have to hope that the casting will work until he's old enough to get his spine fused without any implants.

Thank you, everyone, for your help and advice as I continue to get Shane the proper treatment. I know I'm in the right place (both here and Shriner's). I don't know where Shane and I would be (treatment wise, mentally, emotionally, etc.) if not for this group and . You guys are the best. And just because Shane is on the right course, I'm not going anywhere. I AM HERE TO STAY. And I will continue to raise money for ISOP. We need to get the awareness out there to help other children get the proper treatment.

Have a great day, everyone.

SUZY ÂºOÂºsuzy3333

In a message dated 2/8/2011 9:03:00 A.M. Eastern Standard Time, suzy3333@... writes:

I am taking Shane to Shriner's in Philly today. I am hoping that they take Shane on as a patient and not hold it against us that he has already been casted elsewhere. I am also hoping that they tell me that the cast Shane was put into on 1/11/11 is appropriate and that we didn't do it for nothing. After speaking with (she is an angel that without her, I would be clueless), I fear that he's in the wrong cast (his starts at a little under the armpits). I fear that because of the curve on top that maybe he should be in an over the shoulder cast. He has 3 curves. I don't know how you guys post the x-rays on here. If I could figure it out, I would post it to show you.Anyway, wish me and Shane luck. And if you know of any questions I should ask Dr. C, please, please, please, let me know. I'll be checking my email throughout the day. Have a great day, everyone. I will update tonight when I get home (and the babies go to bed). , I will call you tonight as well.Suzanne

February 12, 2011

Hi Suzy,

I am so glad that Shane is in the care of the very compassionate and skilled

team at Shriners, Philadelphia. We have entrusted 's care to them since

2003 and wouldn't dream of having anyone else care for him.

In my opinion, there is always hope. I have learned that when doctors give you

their predictions, it is based on the facts in front of them at THAT particular

appointment. I have seen cases where improvement does occur and those

predictions might change somewhat.

I am certainly not trying to give you false hope or second guess Dr. C - I'm

just saying 'never say never'. In addition, there are new surgical techniques

being developed every day, so even if Shane would be facing surgery in the

future, they might come up with something better than traditional growing rods.

Best of luck to you.