Re: Home from Birmingham/Dr. Khoury

[Guest guest]

Hi Misty,

That is great news to hear about Haley. Max also has a pretty stiff

curve. He will get his 7th cast on thursday. Although Max will not

have his spine to be perfectly straight, I'm not giving up hope that

casting can continue to help him. His curve has not improved, but

also not drastically gotten worse. His curve is also located on the

lower back. We are grateful to be buying time until Max is older if

he does need growing rod surgery. But in my heart of hearts, I know

we are doing EVERYTHING we can to help him. I'm not giving up on

casting for Max or any child.

Please know you are doing the right thing for Haley and do not get

discouraged. Babies are miracles and their bodies grow in mysterious

ways. They surprise us every moment.

I am so happy to hear she has adjusted well to her new cast.

Aekta

>

> Hi everyone!

>

> We just got hone last night from Birmingham. We had a wonderful

> experience w/ Dr. Khoury and his nurse is great also. Haley has a

> thoracic curve of 38 degrees and RVAD of 18 degrees. This x-ray

was

> taken in the supine position and Dr. Khoury said the ones to

follow

> will be as well. Previously we were comparing supine to sitting x-

> rays. She was put into her first Mehta cast Friday morning and

did

> great. This cast is less confining for her b/c it does not

include

> an arm like her previous casts did. Also, there is the window in

the

> back and a larger opening on the front of the cast. I will post

pics

> soon. Dr. Khoury seemed very optimistic Thursday at our pre-op

appt

> that he could help Haley. He did say that she was a little older

> than he likes to begin tx with, but still well under the critical

age

> of 2. (she is almost 16 mos) He used his new casting table. He

said

> that the company that built these tables went out of business, so

> they had to build their own table. After he casted her he brought

the

> x-rays and he said all went well and he had gotten her down to a

15

> degree curve in her cast...so from 38 degrees to 15 degrees. Is

this

> a great improvement or somewhat average? He also said that her

spine

> was " STIFF " not the easiest to manipulate. He is hoping that this

> first cast will loosen it up a little and make it more flexible.

Is

> this a bad sign? Should I feel discouraged? I left Thursday on

cloud

> nine so sure that this would work. Friday I left w/several

questions

> just HOPING this will work. ANY opinions or comments are

appreciated.

> I am so tahnkful for all of you who give advice and share your

> stories. WE ARE SO HAPPY WE LEARNED ABOUT THIS TREATMENT. THANKS

to

> all!

> Oh yeah, about the media, they filmed the entire casting procedure

> and filmed Haley in her cast after she woke up. She said that the

> film will be used w/in the hospital and on the UAB website. They

> talked w/ Dr. Khoury and asked him questions about the Mehta

casting

> technique. The media specialist did not receive any feedback

about

> the story. She said she could not get in touch with anyone b/c all

of

> the media efforts are with the tragedy in Minnesota. She hopes to

> pitch it again at follow up castings.

>

> Donnie, Misty and Haley

>

[Guest guest]

Hi Misty,

That is great news to hear about Haley. Max also has a pretty stiff

curve. He will get his 7th cast on thursday. Although Max will not

have his spine to be perfectly straight, I'm not giving up hope that

casting can continue to help him. His curve has not improved, but

also not drastically gotten worse. His curve is also located on the

lower back. We are grateful to be buying time until Max is older if

he does need growing rod surgery. But in my heart of hearts, I know

we are doing EVERYTHING we can to help him. I'm not giving up on

casting for Max or any child.

Please know you are doing the right thing for Haley and do not get

discouraged. Babies are miracles and their bodies grow in mysterious

ways. They surprise us every moment.

I am so happy to hear she has adjusted well to her new cast.

Aekta

>

> Hi everyone!

>

> We just got hone last night from Birmingham. We had a wonderful

> experience w/ Dr. Khoury and his nurse is great also. Haley has a

> thoracic curve of 38 degrees and RVAD of 18 degrees. This x-ray

was

> taken in the supine position and Dr. Khoury said the ones to

follow

> will be as well. Previously we were comparing supine to sitting x-

> rays. She was put into her first Mehta cast Friday morning and

did

> great. This cast is less confining for her b/c it does not

include

> an arm like her previous casts did. Also, there is the window in

the

> back and a larger opening on the front of the cast. I will post

pics

> soon. Dr. Khoury seemed very optimistic Thursday at our pre-op

appt

> that he could help Haley. He did say that she was a little older

> than he likes to begin tx with, but still well under the critical

age

> of 2. (she is almost 16 mos) He used his new casting table. He

said

> that the company that built these tables went out of business, so

> they had to build their own table. After he casted her he brought

the

> x-rays and he said all went well and he had gotten her down to a

15

> degree curve in her cast...so from 38 degrees to 15 degrees. Is

this

> a great improvement or somewhat average? He also said that her

spine

> was " STIFF " not the easiest to manipulate. He is hoping that this

> first cast will loosen it up a little and make it more flexible.

Is

> this a bad sign? Should I feel discouraged? I left Thursday on

cloud

> nine so sure that this would work. Friday I left w/several

questions

> just HOPING this will work. ANY opinions or comments are

appreciated.

> I am so tahnkful for all of you who give advice and share your

> stories. WE ARE SO HAPPY WE LEARNED ABOUT THIS TREATMENT. THANKS

to

> all!

> Oh yeah, about the media, they filmed the entire casting procedure

> and filmed Haley in her cast after she woke up. She said that the

> film will be used w/in the hospital and on the UAB website. They

> talked w/ Dr. Khoury and asked him questions about the Mehta

casting

> technique. The media specialist did not receive any feedback

about

> the story. She said she could not get in touch with anyone b/c all

of

> the media efforts are with the tragedy in Minnesota. She hopes to

> pitch it again at follow up castings.

>

> Donnie, Misty and Haley

>

[Guest guest]

Misty,

Thanks for the detailed post. Everything you wrote sounds great. I'll try to

answer some of your questions.

Going from 38 degrees to 15 degrees is a lot of improvement. In the first cast

most kids see a lot of improvement. It is typical, but that first cast is the

one that gives you hope and reassurance. The rest of the casts most likely will

be smaller improvement around 5 degrees.

Regarding a stiff spine. Both having a stiff spine (rigid) and a flexable spine

are good in ways and not so good in ways. If the spine is stiff, it may be

harder to manipulate, but it will hold the correction better. A flexable spine

is easy to manipulate, but may " flop " back and not hold as well. In the long run

with Haley only being 16 months, I don't think it will hinder any correction.

Cole was VERY rigid. He went from 48 degrees to 0 degrees in all his casts. Like

Dr. K said, Cole became more and more flexable as new casts were applied.

All in all, the your experience, the numbers, the traning video they made, etc.

sound AWESOME.

Good luck in this journey. When does she get her next cast on?

Take care.

mistyhld wrote: Hi

everyone!

We just got hone last night from Birmingham. We had a wonderful

experience w/ Dr. Khoury and his nurse is great also. Haley has a

thoracic curve of 38 degrees and RVAD of 18 degrees. This x-ray was

taken in the supine position and Dr. Khoury said the ones to follow

will be as well. Previously we were comparing supine to sitting x-

rays. She was put into her first Mehta cast Friday morning and did

great. This cast is less confining for her b/c it does not include

an arm like her previous casts did. Also, there is the window in the

back and a larger opening on the front of the cast. I will post pics

soon. Dr. Khoury seemed very optimistic Thursday at our pre-op appt

that he could help Haley. He did say that she was a little older

than he likes to begin tx with, but still well under the critical age

of 2. (she is almost 16 mos) He used his new casting table. He said

that the company that built these tables went out of business, so

they had to build their own table. After he casted her he brought the

x-rays and he said all went well and he had gotten her down to a 15

degree curve in her cast...so from 38 degrees to 15 degrees. Is this

a great improvement or somewhat average? He also said that her spine

was " STIFF " not the easiest to manipulate. He is hoping that this

first cast will loosen it up a little and make it more flexible. Is

this a bad sign? Should I feel discouraged? I left Thursday on cloud

nine so sure that this would work. Friday I left w/several questions

just HOPING this will work. ANY opinions or comments are appreciated.

I am so tahnkful for all of you who give advice and share your

stories. WE ARE SO HAPPY WE LEARNED ABOUT THIS TREATMENT. THANKS to

all!

Oh yeah, about the media, they filmed the entire casting procedure

and filmed Haley in her cast after she woke up. She said that the

film will be used w/in the hospital and on the UAB website. They

talked w/ Dr. Khoury and asked him questions about the Mehta casting

technique. The media specialist did not receive any feedback about

the story. She said she could not get in touch with anyone b/c all of

the media efforts are with the tragedy in Minnesota. She hopes to

pitch it again at follow up castings.

Donnie, Misty and Haley

---------------------------------

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[Guest guest]

Misty,

pretty much said everything I was going to say. Ian is super flexible,

but we then now run the risk of having more setbacks than other kids with less

flexible spines. Ian was 15 months when we started casting (I could KICK myself

for not starting earlier), but we still achieved correction! It did take longer

than some of the other kiddos that were casted at the same time as Ian, but, of

course, it was so worth the extra time.

I think you got great correction! That is a big improvement. As said,

don't be discouraged when the correction slows down with subsequent

casting...that's just how it works. Ian stayed at 10 degrees for almost 6

months and then with the last cast the Dr. Khoury applied we unexpectedly

achieved more correction.

I know I keep saying it, but I just love Dr. Khoury!! He's done such great

things for my precious little guy and I really like his bedside manner. He's

very easy to talk to...quiet but approachable.

Noelle (12-2-01)

Ian (8-15-04)

Home from Birmingham/Dr. Khoury

Hi everyone!

We just got hone last night from Birmingham. We had a wonderful

experience w/ Dr. Khoury and his nurse is great also. Haley has a

thoracic curve of 38 degrees and RVAD of 18 degrees. This x-ray was

taken in the supine position and Dr. Khoury said the ones to follow

will be as well. Previously we were comparing supine to sitting x-

rays. She was put into her first Mehta cast Friday morning and did

great. This cast is less confining for her b/c it does not include

an arm like her previous casts did. Also, there is the window in the

back and a larger opening on the front of the cast. I will post pics

soon. Dr. Khoury seemed very optimistic Thursday at our pre-op appt

that he could help Haley. He did say that she was a little older

than he likes to begin tx with, but still well under the critical age

of 2. (she is almost 16 mos) He used his new casting table. He said

that the company that built these tables went out of business, so

they had to build their own table. After he casted her he brought the

x-rays and he said all went well and he had gotten her down to a 15

degree curve in her cast...so from 38 degrees to 15 degrees. Is this

a great improvement or somewhat average? He also said that her spine

was " STIFF " not the easiest to manipulate. He is hoping that this

first cast will loosen it up a little and make it more flexible. Is

this a bad sign? Should I feel discouraged? I left Thursday on cloud

nine so sure that this would work. Friday I left w/several questions

just HOPING this will work. ANY opinions or comments are appreciated.

I am so tahnkful for all of you who give advice and share your

stories. WE ARE SO HAPPY WE LEARNED ABOUT THIS TREATMENT. THANKS to

all!

Oh yeah, about the media, they filmed the entire casting procedure

and filmed Haley in her cast after she woke up. She said that the

film will be used w/in the hospital and on the UAB website. They

talked w/ Dr. Khoury and asked him questions about the Mehta casting

technique. The media specialist did not receive any feedback about

the story. She said she could not get in touch with anyone b/c all of

the media efforts are with the tragedy in Minnesota. She hopes to

pitch it again at follow up castings.

Donnie, Misty and Haley

[Guest guest]

Misty,

pretty much said everything I was going to say. Ian is super flexible,

but we then now run the risk of having more setbacks than other kids with less

flexible spines. Ian was 15 months when we started casting (I could KICK myself

for not starting earlier), but we still achieved correction! It did take longer

than some of the other kiddos that were casted at the same time as Ian, but, of

course, it was so worth the extra time.

I think you got great correction! That is a big improvement. As said,

don't be discouraged when the correction slows down with subsequent

casting...that's just how it works. Ian stayed at 10 degrees for almost 6

months and then with the last cast the Dr. Khoury applied we unexpectedly

achieved more correction.

I know I keep saying it, but I just love Dr. Khoury!! He's done such great

things for my precious little guy and I really like his bedside manner. He's

very easy to talk to...quiet but approachable.

Noelle (12-2-01)

Ian (8-15-04)

Home from Birmingham/Dr. Khoury

Hi everyone!

We just got hone last night from Birmingham. We had a wonderful

experience w/ Dr. Khoury and his nurse is great also. Haley has a

thoracic curve of 38 degrees and RVAD of 18 degrees. This x-ray was

taken in the supine position and Dr. Khoury said the ones to follow

will be as well. Previously we were comparing supine to sitting x-

rays. She was put into her first Mehta cast Friday morning and did

great. This cast is less confining for her b/c it does not include

an arm like her previous casts did. Also, there is the window in the

back and a larger opening on the front of the cast. I will post pics

soon. Dr. Khoury seemed very optimistic Thursday at our pre-op appt

that he could help Haley. He did say that she was a little older

than he likes to begin tx with, but still well under the critical age

of 2. (she is almost 16 mos) He used his new casting table. He said

that the company that built these tables went out of business, so

they had to build their own table. After he casted her he brought the

x-rays and he said all went well and he had gotten her down to a 15

degree curve in her cast...so from 38 degrees to 15 degrees. Is this

a great improvement or somewhat average? He also said that her spine

was " STIFF " not the easiest to manipulate. He is hoping that this

first cast will loosen it up a little and make it more flexible. Is

this a bad sign? Should I feel discouraged? I left Thursday on cloud

nine so sure that this would work. Friday I left w/several questions

just HOPING this will work. ANY opinions or comments are appreciated.

I am so tahnkful for all of you who give advice and share your

stories. WE ARE SO HAPPY WE LEARNED ABOUT THIS TREATMENT. THANKS to

all!

Oh yeah, about the media, they filmed the entire casting procedure

and filmed Haley in her cast after she woke up. She said that the

film will be used w/in the hospital and on the UAB website. They

talked w/ Dr. Khoury and asked him questions about the Mehta casting

technique. The media specialist did not receive any feedback about

the story. She said she could not get in touch with anyone b/c all of

the media efforts are with the tragedy in Minnesota. She hopes to

pitch it again at follow up castings.

Donnie, Misty and Haley

[Guest guest]

>Hi Misty, I am really knew to all this so I cant really answer any

questions. But I am so happy for you, because what I do know..it

sounds pretty promising! We take my daughter (3 mos) to Chicago for

casting on Tuesday. I hope her curve isn't too bad ...at least we

will have answers. Do you know if they put the baby to sleep during

casting? If not, I can not imagine how they do it. Goodluck and

stay positive it looks like your Haley is doing just fine! Thinking

of you. Reagan (Josies mom)

> Hi everyone!

>

> We just got hone last night from Birmingham. We had a wonderful

> experience w/ Dr. Khoury and his nurse is great also. Haley has a

> thoracic curve of 38 degrees and RVAD of 18 degrees. This x-ray

was

> taken in the supine position and Dr. Khoury said the ones to follow

> will be as well. Previously we were comparing supine to sitting x-

> rays. She was put into her first Mehta cast Friday morning and did

> great. This cast is less confining for her b/c it does not include

> an arm like her previous casts did. Also, there is the window in

the

> back and a larger opening on the front of the cast. I will post

pics

> soon. Dr. Khoury seemed very optimistic Thursday at our pre-op appt

> that he could help Haley. He did say that she was a little older

> than he likes to begin tx with, but still well under the critical

age

> of 2. (she is almost 16 mos) He used his new casting table. He said

> that the company that built these tables went out of business, so

> they had to build their own table. After he casted her he brought

the

> x-rays and he said all went well and he had gotten her down to a 15

> degree curve in her cast...so from 38 degrees to 15 degrees. Is

this

> a great improvement or somewhat average? He also said that her

spine

> was " STIFF " not the easiest to manipulate. He is hoping that this

> first cast will loosen it up a little and make it more flexible.

Is

> this a bad sign? Should I feel discouraged? I left Thursday on

cloud

> nine so sure that this would work. Friday I left w/several

questions

> just HOPING this will work. ANY opinions or comments are

appreciated.

> I am so tahnkful for all of you who give advice and share your

> stories. WE ARE SO HAPPY WE LEARNED ABOUT THIS TREATMENT. THANKS to

> all!

> Oh yeah, about the media, they filmed the entire casting procedure

> and filmed Haley in her cast after she woke up. She said that the

> film will be used w/in the hospital and on the UAB website. They

> talked w/ Dr. Khoury and asked him questions about the Mehta

casting

> technique. The media specialist did not receive any feedback about

> the story. She said she could not get in touch with anyone b/c all

of

> the media efforts are with the tragedy in Minnesota. She hopes to

> pitch it again at follow up castings.

>

> Donnie, Misty and Haley

>

[Guest guest]

>Hi Misty, I am really knew to all this so I cant really answer any

questions. But I am so happy for you, because what I do know..it

sounds pretty promising! We take my daughter (3 mos) to Chicago for

casting on Tuesday. I hope her curve isn't too bad ...at least we

will have answers. Do you know if they put the baby to sleep during

casting? If not, I can not imagine how they do it. Goodluck and

stay positive it looks like your Haley is doing just fine! Thinking

of you. Reagan (Josies mom)

> Hi everyone!

>

> We just got hone last night from Birmingham. We had a wonderful

> experience w/ Dr. Khoury and his nurse is great also. Haley has a

> thoracic curve of 38 degrees and RVAD of 18 degrees. This x-ray

was

> taken in the supine position and Dr. Khoury said the ones to follow

> will be as well. Previously we were comparing supine to sitting x-

> rays. She was put into her first Mehta cast Friday morning and did

> great. This cast is less confining for her b/c it does not include

> an arm like her previous casts did. Also, there is the window in

the

> back and a larger opening on the front of the cast. I will post

pics

> soon. Dr. Khoury seemed very optimistic Thursday at our pre-op appt

> that he could help Haley. He did say that she was a little older

> than he likes to begin tx with, but still well under the critical

age

> of 2. (she is almost 16 mos) He used his new casting table. He said

> that the company that built these tables went out of business, so

> they had to build their own table. After he casted her he brought

the

> x-rays and he said all went well and he had gotten her down to a 15

> degree curve in her cast...so from 38 degrees to 15 degrees. Is

this

> a great improvement or somewhat average? He also said that her

spine

> was " STIFF " not the easiest to manipulate. He is hoping that this

> first cast will loosen it up a little and make it more flexible.

Is

> this a bad sign? Should I feel discouraged? I left Thursday on

cloud

> nine so sure that this would work. Friday I left w/several

questions

> just HOPING this will work. ANY opinions or comments are

appreciated.

> I am so tahnkful for all of you who give advice and share your

> stories. WE ARE SO HAPPY WE LEARNED ABOUT THIS TREATMENT. THANKS to

> all!

> Oh yeah, about the media, they filmed the entire casting procedure

> and filmed Haley in her cast after she woke up. She said that the

> film will be used w/in the hospital and on the UAB website. They

> talked w/ Dr. Khoury and asked him questions about the Mehta

casting

> technique. The media specialist did not receive any feedback about

> the story. She said she could not get in touch with anyone b/c all

of

> the media efforts are with the tragedy in Minnesota. She hopes to

> pitch it again at follow up castings.

>

> Donnie, Misty and Haley

>

[Guest guest]

Hi Reagan,

Yes, they do the casting under general anesthesia (she'll be

sleeping). Just a heads up, she may be cranky, sad, and mad when

she wakes. Max sure is, but after a few hours he's usually back to

himself.

See you wednesday! Travel safely!

Aekta

> >Hi Misty, I am really knew to all this so I cant really answer

any

> questions. But I am so happy for you, because what I do know..it

> sounds pretty promising! We take my daughter (3 mos) to Chicago

for

> casting on Tuesday. I hope her curve isn't too bad ...at least we

> will have answers. Do you know if they put the baby to sleep

during

> casting? If not, I can not imagine how they do it. Goodluck and

> stay positive it looks like your Haley is doing just fine!

Thinking

> of you. Reagan (Josies mom)

> > Hi everyone!

> >

> > We just got hone last night from Birmingham. We had a wonderful

> > experience w/ Dr. Khoury and his nurse is great also. Haley has

a

> > thoracic curve of 38 degrees and RVAD of 18 degrees. This x-ray

> was

> > taken in the supine position and Dr. Khoury said the ones to

follow

> > will be as well. Previously we were comparing supine to sitting

x-

> > rays. She was put into her first Mehta cast Friday morning and

did

> > great. This cast is less confining for her b/c it does not

include

> > an arm like her previous casts did. Also, there is the window

in

> the

> > back and a larger opening on the front of the cast. I will post

> pics

> > soon. Dr. Khoury seemed very optimistic Thursday at our pre-op

appt

> > that he could help Haley. He did say that she was a little

older

> > than he likes to begin tx with, but still well under the

critical

> age

> > of 2. (she is almost 16 mos) He used his new casting table. He

said

> > that the company that built these tables went out of business,

so

> > they had to build their own table. After he casted her he

brought

> the

> > x-rays and he said all went well and he had gotten her down to a

15

> > degree curve in her cast...so from 38 degrees to 15 degrees. Is

> this

> > a great improvement or somewhat average? He also said that her

> spine

> > was " STIFF " not the easiest to manipulate. He is hoping that

this

> > first cast will loosen it up a little and make it more

flexible.

> Is

> > this a bad sign? Should I feel discouraged? I left Thursday on

> cloud

> > nine so sure that this would work. Friday I left w/several

> questions

> > just HOPING this will work. ANY opinions or comments are

> appreciated.

> > I am so tahnkful for all of you who give advice and share your

> > stories. WE ARE SO HAPPY WE LEARNED ABOUT THIS TREATMENT. THANKS

to

> > all!

> > Oh yeah, about the media, they filmed the entire casting

procedure

> > and filmed Haley in her cast after she woke up. She said that

the

> > film will be used w/in the hospital and on the UAB website. They

> > talked w/ Dr. Khoury and asked him questions about the Mehta

> casting

> > technique. The media specialist did not receive any feedback

about

> > the story. She said she could not get in touch with anyone b/c

all

> of

> > the media efforts are with the tragedy in Minnesota. She hopes

to

> > pitch it again at follow up castings.

> >

> > Donnie, Misty and Haley

> >

>