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Re: Shriners Erie Visit

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hey jenny,

Happy to hear things went well. I also think evan will be fine until march. If

it progresses a little more, he is young enough that he will/should get full

correction during his casting process. Cole was at about the same degrees before

his first cast, and now in his second cast he is at 15 degrees. I think a few

other cast kids will be there the same week as you. maybe you can meet them.

/Ian and /Jake. Cole and I will miss you by a week, Cole gets

his 3rd cast the next week. I read another post where you said you went through

Cleveland. Let me know if you need a place to rest/stay/eat whenever you go

through here. We live in Cleveland. Although, I know once you get to Cleveland,

you are almost there. Happy to here things are finally in the pipe line. I know

it's a good feeling!

(mom to Cole 11 months) and his twin Jack and Lily 3 years!

basketsnboyds <basketsnboyds@...> wrote: Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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I am glad that you felt good about your visit with Dr. . I am sorry to

hear that he is progressing, but you are getting impecible care for him at

Shriners. Ian also has very significant rotation and they are working to

correct that. He seems to be doing so well and I bet Evan will do just as well.

I am sorry they couldn't squeeze you in, but as soon as he gets his cast, I am

sure you will see great results. At least now you have some time to enjoy him

cast free and it also gives him some time to achieve a few more milestones

before the casting date.

Noelle (12-2-01)

Ian (8-15-04)

Shriners Erie Visit

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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,

We actually had our appt changed to the 20th and 21st so that he could see the

urologist while we are there. Are you going to be there at the same time?

Noelle (12-2-01)

Ian (8-15-04)

Re: Shriners Erie Visit

hey jenny,

Happy to hear things went well. I also think evan will be fine until march. If

it progresses a little more, he is young enough that he will/should get full

correction during his casting process. Cole was at about the same degrees before

his first cast, and now in his second cast he is at 15 degrees. I think a few

other cast kids will be there the same week as you. maybe you can meet them.

/Ian and /Jake. Cole and I will miss you by a week, Cole gets

his 3rd cast the next week. I read another post where you said you went through

Cleveland. Let me know if you need a place to rest/stay/eat whenever you go

through here. We live in Cleveland. Although, I know once you get to Cleveland,

you are almost there. Happy to here things are finally in the pipe line. I know

it's a good feeling!

(mom to Cole 11 months) and his twin Jack and Lily 3 years!

basketsnboyds <basketsnboyds@...> wrote: Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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Thanks so much for the kind words! I don't know if we'll come thru Cleveland

again (we stayed at his cousins in Columbus this trip for a night before), but I

appreciate the offer! We didn't like all that snow on Sunday-it was crazy and so

was the interstate!

I do hope to meet up with some of the other moms as well!

Evan 8/7/05

Baird <michelle_r_baird@...> wrote:

hey jenny,

Happy to hear things went well. I also think evan will be fine until march. If

it progresses a little more, he is young enough that he will/should get full

correction during his casting process. Cole was at about the same degrees before

his first cast, and now in his second cast he is at 15 degrees. I think a few

other cast kids will be there the same week as you. maybe you can meet them.

/Ian and /Jake. Cole and I will miss you by a week, Cole gets

his 3rd cast the next week. I read another post where you said you went through

Cleveland. Let me know if you need a place to rest/stay/eat whenever you go

through here. We live in Cleveland. Although, I know once you get to Cleveland,

you are almost there. Happy to here things are finally in the pipe line. I know

it's a good feeling!

(mom to Cole 11 months) and his twin Jack and Lily 3 years!

basketsnboyds <basketsnboyds@...> wrote: Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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-

Those were my words exactly!

Thanks!

What's Ian's rotation down to now? It was in the 40's right?

Evan 8/7/05

Claflin <noellesmommy@...> wrote:

I am glad that you felt good about your visit with Dr. . I am sorry to

hear that he is progressing, but you are getting impecible care for him at

Shriners. Ian also has very significant rotation and they are working to

correct that. He seems to be doing so well and I bet Evan will do just as well.

I am sorry they couldn't squeeze you in, but as soon as he gets his cast, I am

sure you will see great results. At least now you have some time to enjoy him

cast free and it also gives him some time to achieve a few more milestones

before the casting date.

Noelle (12-2-01)

Ian (8-15-04)

Shriners Erie Visit

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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I think our appt. is march 22/23, so we might miss you?

Claflin <noellesmommy@...> wrote: ,

We actually had our appt changed to the 20th and 21st so that he could see the

urologist while we are there. Are you going to be there at the same time?

Noelle (12-2-01)

Ian (8-15-04)

Re: Shriners Erie Visit

hey jenny,

Happy to hear things went well. I also think evan will be fine until march.

If it progresses a little more, he is young enough that he will/should get full

correction during his casting process. Cole was at about the same degrees before

his first cast, and now in his second cast he is at 15 degrees. I think a few

other cast kids will be there the same week as you. maybe you can meet them.

/Ian and /Jake. Cole and I will miss you by a week, Cole gets

his 3rd cast the next week. I read another post where you said you went through

Cleveland. Let me know if you need a place to rest/stay/eat whenever you go

through here. We live in Cleveland. Although, I know once you get to Cleveland,

you are almost there. Happy to here things are finally in the pipe line. I know

it's a good feeling!

(mom to Cole 11 months) and his twin Jack and Lily 3 years!

basketsnboyds <basketsnboyds@...> wrote: Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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Oh, man! I am bummed that we will miss you/Ian and /Cole. I'm glad

you're getting in to see the urologist though. Weird that Jake looks like (as

far as this board goes) he's the only one for March 15-16. I guess that is

good?? First in, first out???

mom to and Jake

Claflin <noellesmommy@...> wrote:

,

We actually had our appt changed to the 20th and 21st so that he could see the

urologist while we are there. Are you going to be there at the same time?

Noelle (12-2-01)

Ian (8-15-04)

Re: Shriners Erie Visit

hey jenny,

Happy to hear things went well. I also think evan will be fine until march. If

it progresses a little more, he is young enough that he will/should get full

correction during his casting process. Cole was at about the same degrees before

his first cast, and now in his second cast he is at 15 degrees. I think a few

other cast kids will be there the same week as you. maybe you can meet them.

/Ian and /Jake. Cole and I will miss you by a week, Cole gets

his 3rd cast the next week. I read another post where you said you went through

Cleveland. Let me know if you need a place to rest/stay/eat whenever you go

through here. We live in Cleveland. Although, I know once you get to Cleveland,

you are almost there. Happy to here things are finally in the pipe line. I know

it's a good feeling!

(mom to Cole 11 months) and his twin Jack and Lily 3 years!

basketsnboyds wrote: Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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,

Glad Evan is getting in soon for his first cast. As you know the sooner, the

better. I'm sorry it looks like you may miss everyone for this trip.

/Ian and /Cole were with us for our last cast in January, but it

looks like we'll be alone for the next one. You may be discharged before we

arrive with Jake?? Maybe not.

Good luck,

mom to and Jake

basketsnboyds <basketsnboyds@...> wrote:

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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It was 45 degrees...the most Miss Mehta had seen in a curve of his degree. I do

not know what it is now. Dr. Khoury just told me that it had improved. I will

try to get his x-rays the next time I am there and I will ask what his rotation

is at now.

Noelle (12-2-01)

Ian (8-15-04)

Shriners Erie Visit

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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Bummer :(.

Noelle (12-2-01)

Ian (8-15-04)

Re: Shriners Erie Visit

hey jenny,

Happy to hear things went well. I also think evan will be fine until march.

If it progresses a little more, he is young enough that he will/should get full

correction during his casting process. Cole was at about the same degrees before

his first cast, and now in his second cast he is at 15 degrees. I think a few

other cast kids will be there the same week as you. maybe you can meet them.

/Ian and /Jake. Cole and I will miss you by a week, Cole gets

his 3rd cast the next week. I read another post where you said you went through

Cleveland. Let me know if you need a place to rest/stay/eat whenever you go

through here. We live in Cleveland. Although, I know once you get to Cleveland,

you are almost there. Happy to here things are finally in the pipe line. I know

it's a good feeling!

(mom to Cole 11 months) and his twin Jack and Lily 3 years!

basketsnboyds <basketsnboyds@...> wrote: Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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I bet we will miss you. We'll leave on teh 15th-prob in the AM-will you be there

then?

Do you stay in the parent housing? Do most of you stay in the parent housing

the night before and the night of the casting? We stayed at a hotel this last

time and didn't quite know what to do this next time???

Evan 8/7/05

Viveiros <jviv314@...> wrote:

,

Glad Evan is getting in soon for his first cast. As you know the sooner, the

better. I'm sorry it looks like you may miss everyone for this trip.

/Ian and /Cole were with us for our last cast in January, but it

looks like we'll be alone for the next one. You may be discharged before we

arrive with Jake?? Maybe not.

Good luck,

mom to and Jake

basketsnboyds <basketsnboyds@...> wrote:

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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Wow-

One Dr. calculated Evan's RVAD in the upper 50's and then with the same x-rays

and the new ones. Dr. calculated 36!- Big difference, huh?

Evan

omcast.net> wrote:

It was 45 degrees...the most Miss Mehta had seen in a curve of his degree. I

do not know what it is now. Dr. Khoury just told me that it had improved. I

will try to get his x-rays the next time I am there and I will ask what his

rotation is at now.

Noelle (12-2-01)

Ian (8-15-04)

Shriners Erie Visit

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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I've done both. It's getting to be too expensive staying at a hotel every 8

weeks, so that is why we do the housing. It was nice because he had to be there

at 6:30 am and all I had to do was walk down the hall in the morning.

Noelle (12-2-01)

Ian (8-15-04)

Re: Shriners Erie Visit

I bet we will miss you. We'll leave on teh 15th-prob in the AM-will you be

there then?

Do you stay in the parent housing? Do most of you stay in the parent housing

the night before and the night of the casting? We stayed at a hotel this last

time and didn't quite know what to do this next time???

Evan 8/7/05

Viveiros <jviv314@...> wrote:

,

Glad Evan is getting in soon for his first cast. As you know the sooner,

the better. I'm sorry it looks like you may miss everyone for this trip.

/Ian and /Cole were with us for our last cast in January, but it

looks like we'll be alone for the next one. You may be discharged before we

arrive with Jake?? Maybe not.

Good luck,

mom to and Jake

basketsnboyds <basketsnboyds@...> wrote:

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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That is a big difference. There can be a difference of a few degrees, but

someone was off on their calculations for it to be that significant. I am sure

got it right though.

BTW, from what I understand, RVAD and rotation are not the same. With rotation,

they just kind of eye-ball it to give an estimate of how much they are rotated.

I know Deshea sent me a link that showed how they read the x-ray to determine

the rotation, but I will have to find that...I have so many links in my

favorites right now!

Noelle (12-2-01)

Ian (8-15-04)

Shriners Erie Visit

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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Thanks- the Dr's have explained to me how they do it, but I can't really

remember how they say they did it either. Dr. , showed us the X-ray with

his calc.on it, but you know how that is...!!!

Claflin <noellesmommy@...> wrote:

That is a big difference. There can be a difference of a few degrees, but

someone was off on their calculations for it to be that significant. I am sure

got it right though.

BTW, from what I understand, RVAD and rotation are not the same. With rotation,

they just kind of eye-ball it to give an estimate of how much they are rotated.

I know Deshea sent me a link that showed how they read the x-ray to determine

the rotation, but I will have to find that...I have so many links in my

favorites right now!

Noelle (12-2-01)

Ian (8-15-04)

Shriners Erie Visit

Hey everyone!

We finally got home last night from our visit to Erie. We were

hoping it might be possible for them to go ahead with Evan's cast

while we were there, but they're going to wait until March 14th. Dr.

was wonderful as many of you know. He checked Evan out very

thoroughly and took a few x-rays. His curve has progressed from 33

to 46 in just 4 weeks, which scares me, but Dr. thinks it's

ok to wait until Mar. and I just have to trust his judgement! He

calculated his RVAD at 36. He does still think casting is the best

option and says he's not sure how long he even will be in the cast-

he told me each child responds diff to treatment. He did tell us

that his curve is flexible to a certain point but his rib rotation

is very rigid and that would be the hardest problem to fix and that

would take the longest.

He answered a bunch of questions and then a pt. care coord. took us

on a tour and Dr. Sander's nurse gave us a bunch of papers to look

at and fill out (and have his ENT fill out regarding his

laryngealmylacia).

They were so incredibly nice to us and I feel good about the visit.

Evan did wonderful traveling and slept a lot of the trip (8hrs!)

Evan 8/7/5

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hi jennifer,

i'm butting in (as usual ;-) can you remind me why ian is seeing the

urologist???

thanks,

deshea

Hey everyone!

> We finally got home last night from our visit to Erie. We were

> hoping it might be possible for them to go ahead with Evan's cast

> while we were there, but they're going to wait until March 14th. Dr.

> was wonderful as many of you know. He checked Evan out very

> thoroughly and took a few x-rays. His curve has progressed from 33

> to 46 in just 4 weeks, which scares me, but Dr. thinks it's

> ok to wait until Mar. and I just have to trust his judgement! He

> calculated his RVAD at 36. He does still think casting is the best

> option and says he's not sure how long he even will be in the cast-

> he told me each child responds diff to treatment. He did tell us

> that his curve is flexible to a certain point but his rib rotation

> is very rigid and that would be the hardest problem to fix and that

> would take the longest.

> He answered a bunch of questions and then a pt. care coord. took us

> on a tour and Dr. Sander's nurse gave us a bunch of papers to look

> at and fill out (and have his ENT fill out regarding his

> laryngealmylacia).

> They were so incredibly nice to us and I feel good about the visit.

> Evan did wonderful traveling and slept a lot of the trip (8hrs!)

>

>

>

> Evan 8/7/5

>

>

>

>

>

>

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okay, i'm butting in again, but perhaps this time i was asked??? [:D]

here's a good website explaining scoliosis and specifically the cobb

angle and the rotation and other juicy tidbits:

http://www.rad.washington.edu/mskbook/scoliosis.html

<http://www.rad.washington.edu/mskbook/scoliosis.html>

as far as rvad (rib vertebral angle difference), that is best explained

by the mehta article determining progressive infantile scoliosis. rvad

<20o usually won't progress and >20o more likely to progress. it is in

the files section of the group titled: JBJS.PDF Mehta RVAD article

if you have any difficulty finding these articles, please let me know.

i also have another general article that you may find useful. it is a

pdf file, and i would be happy to e-mail it to anyone (without viruses,

i promise) if you want to take a look.

just a little aside regarding these numbers -- usually an ortho gives

you the cobb angle # first. this really is only in one plane.

scoliosis is a 3 dimensional problem. since most of us have small (<3

yrs old) kids and the moms (and dads) have been chatting on the

internet, the ortho will then give you the rvad. a typical ortho will

just do the wait and see approach if the cobb is relatively low and the

rvad is <20o. usually you will not hear anything about the rotation --

this is what causes the scapula (shoulder blade) to go in on one side

and usually the other side sticks out more. plus the ribs start to

" look funny " and stick out in places. this is when the vertebrae

themselves start to turn on themselves (best shown pictorially in the

above link). until dr. sanders (and not at lucas' first appt even), i

had not even heard of rotation. according to past discussions, these

casts are really suppose to address rotation which according to one of

mehta's articles is the first thing to start to resolve when you get

correction in these casts.

okay, enough lecturing!

deshea

mom to lucas (4 yrs old) and ruby (19 mos)

p.s. i guess lucas and i will be alone next week in erie [:(]

> I am glad that you felt good about your visit with Dr. .

I am sorry to hear that he is progressing, but you are getting impecible

care for him at Shriners. Ian also has very significant rotation and

they are working to correct that. He seems to be doing so well and I

bet Evan will do just as well. I am sorry they couldn't squeeze you in,

but as soon as he gets his cast, I am sure you will see great results.

At least now you have some time to enjoy him cast free and it also gives

him some time to achieve a few more milestones before the casting date.

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> Shriners Erie Visit

>

>

> Hey everyone!

> We finally got home last night from our visit to Erie. We were

> hoping it might be possible for them to go ahead with Evan's

cast

> while we were there, but they're going to wait until March 14th.

Dr.

> was wonderful as many of you know. He checked Evan out

very

> thoroughly and took a few x-rays. His curve has progressed from

33

> to 46 in just 4 weeks, which scares me, but Dr. thinks

it's

> ok to wait until Mar. and I just have to trust his judgement! He

> calculated his RVAD at 36. He does still think casting is the

best

> option and says he's not sure how long he even will be in the

cast-

> he told me each child responds diff to treatment. He did tell us

> that his curve is flexible to a certain point but his rib

rotation

> is very rigid and that would be the hardest problem to fix and

that

> would take the longest.

> He answered a bunch of questions and then a pt. care coord. took

us

> on a tour and Dr. Sander's nurse gave us a bunch of papers to

look

> at and fill out (and have his ENT fill out regarding his

> laryngealmylacia).

> They were so incredibly nice to us and I feel good about the

visit.

> Evan did wonderful traveling and slept a lot of the trip (8hrs!)

>

>

>

> Evan 8/7/5

>

>

>

>

>

>

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oh, that's right. i had a memory lapse. sorry for making you repost it!

i have a friend of a friend here in mass who has a boy who had

something very similar to what ian may or may not have. i don't know

if they actually went through with the surgery, but it was something

that the doctors thought would be a good idea. i don't remember the

details, but i will look into it if you need me to. BUT hopefully you

won't.

wow, re-reading this message -- very cryptic sounding. =)

deshea

Hey everyone!

> > We finally got home last night from our visit to Erie. We were

> > hoping it might be possible for them to go ahead with Evan's cast

> > while we were there, but they're going to wait until March

14th. Dr.

> > was wonderful as many of you know. He checked Evan out

very

> > thoroughly and took a few x-rays. His curve has progressed

from 33

> > to 46 in just 4 weeks, which scares me, but Dr. thinks

it's

> > ok to wait until Mar. and I just have to trust his judgement! He

> > calculated his RVAD at 36. He does still think casting is the

best

> > option and says he's not sure how long he even will be in the

cast-

> > he told me each child responds diff to treatment. He did tell us

> > that his curve is flexible to a certain point but his rib

rotation

> > is very rigid and that would be the hardest problem to fix and

that

> > would take the longest.

> > He answered a bunch of questions and then a pt. care coord.

took us

> > on a tour and Dr. Sander's nurse gave us a bunch of papers to

look

> > at and fill out (and have his ENT fill out regarding his

> > laryngealmylacia).

> > They were so incredibly nice to us and I feel good about the

visit.

> > Evan did wonderful traveling and slept a lot of the trip (8hrs!)

> >

> >

> >

> > Evan 8/7/5

> >

> >

> >

> >

> >

> >

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