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Re: Adelaide's horrible set back

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Amy,

How old is Addy and who is doing the casting?

Shellie

Amy Norenberg wrote:

We had Addy's cast removed last week due to constant problems with it.

It was her 10th cast and it had been on for 10 weeks. When it was removed she

had several open wounds and I can see why she had been so uncomfortable in it.

Her back(to me) looked terrible- very twisted with a prominent hump.

Yesterday.. She had an appointment with her geneticist up in Boston. He too

thought that her back looked worse and had the Ortho Dr's come in. She had

x-rays and she is back up to 74 degrees. This is what we were at when we began

casting two years ago!!! At her last casting in November, she was down to 48

degrees. How could this possibly happen while in a cast? Could a casting go

terribly wrong and make things much worse? Of course the Boston Dr's think that

we should stop casting and have surgery asap. I am so confused!!! Any advise

would be much appreciated -as I have no idea what to do now.

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Amy,

My heart goes out to you and Addie. Max is getting cast #9 off in

1.5 weeks and surgery on 3/4 at the age of 2 1/2 years. His curve

is lumbar,more difficult to correct with casting. In all nine casts

we lost the correction within 4 weeks. This was determined at the 4

week post-op in cast x-ray. Atleast we were able to know when we

lost ground. After the first few casts, we realized surgery was in

our immediate future as Max's curve did not respond to any casts

(even the one Miss Mehta did last year).

How old is Addie and was she down to 48 degrees in cast or out of

cast? Where is her curve located on her back?

Hang in there!

Aekta

>

> We had Addy's cast removed last week due to constant problems

with it. It was her 10th cast and it had been on for 10 weeks. When

it was removed she had several open wounds and I can see why she had

been so uncomfortable in it. Her back(to me) looked terrible- very

twisted with a prominent hump.

> Yesterday.. She had an appointment with her geneticist up in

Boston. He too thought that her back looked worse and had the Ortho

Dr's come in. She had x-rays and she is back up to 74 degrees. This

is what we were at when we began casting two years ago!!! At her

last casting in November, she was down to 48 degrees. How could this

possibly happen while in a cast? Could a casting go terribly wrong

and make things much worse? Of course the Boston Dr's think that we

should stop casting and have surgery asap. I am so confused!!! Any

advise would be much appreciated -as I have no idea what to do now.

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

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Addy will be four in May. Dr Sander's in Erie has been doing the casting up

until now.

Amy

Shellie Grant wrote:

Amy,

How old is Addy and who is doing the casting?

Shellie

Amy Norenberg wrote:

We had Addy's cast removed last week due to constant problems with it. It was

her 10th cast and it had been on for 10 weeks. When it was removed she had

several open wounds and I can see why she had been so uncomfortable in it. Her

back(to me) looked terrible- very twisted with a prominent hump.

Yesterday.. She had an appointment with her geneticist up in Boston. He too

thought that her back looked worse and had the Ortho Dr's come in. She had

x-rays and she is back up to 74 degrees. This is what we were at when we began

casting two years ago!!! At her last casting in November, she was down to 48

degrees. How could this possibly happen while in a cast? Could a casting go

terribly wrong and make things much worse? Of course the Boston Dr's think that

we should stop casting and have surgery asap. I am so confused!!! Any advise

would be much appreciated -as I have no idea what to do now.

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Did Dr. S do this last cast? Given that she is four, I don't think casting

would probably do much for her anymore. Can you call Dr. and talk with

him?

I am very sorry to hear this Amy.

Noelle (12-2-01)

Ian (8-15-04)

Adelaide's horrible set back

We had Addy's cast removed last week due to constant problems with it. It was

her 10th cast and it had been on for 10 weeks. When it was removed she had

several open wounds and I can see why she had been so uncomfortable in it. Her

back(to me) looked terrible- very twisted with a prominent hump.

Yesterday.. She had an appointment with her geneticist up in Boston. He too

thought that her back looked worse and had the Ortho Dr's come in. She had

x-rays and she is back up to 74 degrees. This is what we were at when we began

casting two years ago!!! At her last casting in November, she was down to 48

degrees. How could this possibly happen while in a cast? Could a casting go

terribly wrong and make things much worse? Of course the Boston Dr's think that

we should stop casting and have surgery asap. I am so confused!!! Any advise

would be much appreciated -as I have no idea what to do now.

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

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Aekta,

Adelaide will be 4 in May. She was diagnosed at 9 months with a 36 degree

curve. her Boston Dr's braced her for the next 11 months and she progressed from

36 to 74. She began casting at 22 months.

Addy was down to 48 degrees out of cast. She had been holding in the 50's for

several castings. She has a left thoracic curve with significant rotation.

I will be praying for you and Max. I wish you all the best with his surgery.

Is he getting the growing rods? where is he treated?

Take Care,

Amy & Addy

babymaxpd wrote:

Amy,

My heart goes out to you and Addie. Max is getting cast #9 off in

1.5 weeks and surgery on 3/4 at the age of 2 1/2 years. His curve

is lumbar,more difficult to correct with casting. In all nine casts

we lost the correction within 4 weeks. This was determined at the 4

week post-op in cast x-ray. Atleast we were able to know when we

lost ground. After the first few casts, we realized surgery was in

our immediate future as Max's curve did not respond to any casts

(even the one Miss Mehta did last year).

How old is Addie and was she down to 48 degrees in cast or out of

cast? Where is her curve located on her back?

Hang in there!

Aekta

>

> We had Addy's cast removed last week due to constant problems

with it. It was her 10th cast and it had been on for 10 weeks. When

it was removed she had several open wounds and I can see why she had

been so uncomfortable in it. Her back(to me) looked terrible- very

twisted with a prominent hump.

> Yesterday.. She had an appointment with her geneticist up in

Boston. He too thought that her back looked worse and had the Ortho

Dr's come in. She had x-rays and she is back up to 74 degrees. This

is what we were at when we began casting two years ago!!! At her

last casting in November, she was down to 48 degrees. How could this

possibly happen while in a cast? Could a casting go terribly wrong

and make things much worse? Of course the Boston Dr's think that we

should stop casting and have surgery asap. I am so confused!!! Any

advise would be much appreciated -as I have no idea what to do now.

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

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Oh Amy I am so sorry. When do you go to see Dr.

ovich? Did Dr. give you in cast numbers

in November? Will you keep your apt at Shriners? My

fear for with Dr. ovich is he is MAYBE a bit

more tentative with the traction, but he really really

knows the spine. He may be able to give you some

direction. (he doesn't do surgeries so it would be

givng you direction) Talk to Dr. . I am

waiting the release form from Shriners so I haven't

called Dr. yet. Let me know what he says.

I am praying so hard for all of you.

Stay strong!

jill

--- Amy Norenberg wrote:

> Aekta,

> Adelaide will be 4 in May. She was diagnosed at 9

> months with a 36 degree curve. her Boston Dr's

> braced her for the next 11 months and she progressed

> from 36 to 74. She began casting at 22 months.

> Addy was down to 48 degrees out of cast. She had

> been holding in the 50's for several castings. She

> has a left thoracic curve with significant rotation.

> I will be praying for you and Max. I wish you all

> the best with his surgery. Is he getting the growing

> rods? where is he treated?

> Take Care,

> Amy & Addy

>

> babymaxpd wrote:

> Amy,

>

> My heart goes out to you and Addie. Max is getting

> cast #9 off in

> 1.5 weeks and surgery on 3/4 at the age of 2 1/2

> years. His curve

> is lumbar,more difficult to correct with casting. In

> all nine casts

> we lost the correction within 4 weeks. This was

> determined at the 4

> week post-op in cast x-ray. Atleast we were able to

> know when we

> lost ground. After the first few casts, we realized

> surgery was in

> our immediate future as Max's curve did not respond

> to any casts

> (even the one Miss Mehta did last year).

>

> How old is Addie and was she down to 48 degrees in

> cast or out of

> cast? Where is her curve located on her back?

>

> Hang in there!

>

> Aekta

>

>

> >

> > We had Addy's cast removed last week due to

> constant problems

> with it. It was her 10th cast and it had been on for

> 10 weeks. When

> it was removed she had several open wounds and I can

> see why she had

> been so uncomfortable in it. Her back(to me) looked

> terrible- very

> twisted with a prominent hump.

> > Yesterday.. She had an appointment with her

> geneticist up in

> Boston. He too thought that her back looked worse

> and had the Ortho

> Dr's come in. She had x-rays and she is back up to

> 74 degrees. This

> is what we were at when we began casting two years

> ago!!! At her

> last casting in November, she was down to 48

> degrees. How could this

> possibly happen while in a cast? Could a casting go

> terribly wrong

> and make things much worse? Of course the Boston

> Dr's think that we

> should stop casting and have surgery asap. I am so

> confused!!! Any

> advise would be much appreciated -as I have no idea

> what to do now.

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make Yahoo your homepage.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

>

>

>

> ---------------------------------

> Looking for last minute shopping deals? Find them

> fast with Yahoo! Search.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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Dear Amy - I don't have any advice for you as is only in his

first cast, but we will probably be in your shoes one day...wondering

when/how/if to make that decision from casting to surgery. I would

talk to and get as much information from parents and various

doctors as possible, and then make the decision when you're ready.

I'll say a special prayer for you and Addy.

Best,

> > >

> > > We had Addy's cast removed last week due to

> > constant problems

> > with it. It was her 10th cast and it had been on for

> > 10 weeks. When

> > it was removed she had several open wounds and I can

> > see why she had

> > been so uncomfortable in it. Her back(to me) looked

> > terrible- very

> > twisted with a prominent hump.

> > > Yesterday.. She had an appointment with her

> > geneticist up in

> > Boston. He too thought that her back looked worse

> > and had the Ortho

> > Dr's come in. She had x-rays and she is back up to

> > 74 degrees. This

> > is what we were at when we began casting two years

> > ago!!! At her

> > last casting in November, she was down to 48

> > degrees. How could this

> > possibly happen while in a cast? Could a casting go

> > terribly wrong

> > and make things much worse? Of course the Boston

> > Dr's think that we

> > should stop casting and have surgery asap. I am so

> > confused!!! Any

> > advise would be much appreciated -as I have no idea

> > what to do now.

> > >

> > >

> > >

> > > ---------------------------------

> > > Never miss a thing. Make Yahoo your homepage.

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Looking for last minute shopping deals? Find them

> > fast with Yahoo! Search.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

________________________________________________________________________________\

____

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

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Amy,

That's interesting that she had such improvement. Max was in abrace

for 3 months starting at 27 degrees and it went to 54 within 3

months despite the brace being woren 20 hours/day.

I'd consult Dr. and get his feedback.

Dr. also casted Max this past summer twice (when Dr. Sturm

was on medical leave) and neither of those casts held either.

Max will be getting the hybrid VEPTR at Shriner's Chicago. Dr. Sturm

has been nothing but honest with us from day 1. He always told us to

not rule out surgery. We just didn't expect it this soon. I guess as

a parent you never expect it.

Please keep us posted on what develops and what you find out about

Addy's recent development.

You are in our thoughts and prayers.

Aekta

> >

> > We had Addy's cast removed last week due to constant problems

> with it. It was her 10th cast and it had been on for 10 weeks.

When

> it was removed she had several open wounds and I can see why she

had

> been so uncomfortable in it. Her back(to me) looked terrible- very

> twisted with a prominent hump.

> > Yesterday.. She had an appointment with her geneticist up in

> Boston. He too thought that her back looked worse and had the

Ortho

> Dr's come in. She had x-rays and she is back up to 74 degrees.

This

> is what we were at when we began casting two years ago!!! At her

> last casting in November, she was down to 48 degrees. How could

this

> possibly happen while in a cast? Could a casting go terribly wrong

> and make things much worse? Of course the Boston Dr's think that

we

> should stop casting and have surgery asap. I am so confused!!! Any

> advise would be much appreciated -as I have no idea what to do now.

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make Yahoo your homepage.

> >

> >

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Aekta,

Thanks for thinking of us with all that you have going on. I am waiting to

hear back from jane in Erie, as to how to get in touch with Dr. . He

has always told us that casting will not " fix " Addy. Even Dr. Mehta said that

surgery was inevitable. We were hoping and planning on casting for several more

years(to buy more time).

My biggest concern is what happened in this last cast. She had been getting

some improvement each time or at least holding with all of her other casts. I

just still can't believe that she regressed so much, so quickly.

I will keep you updated.Please do the same with Max. We are thinking and

praying everyday for you both.

Take Care,

Amy & Addy

babymaxpd wrote:

Amy,

That's interesting that she had such improvement. Max was in abrace

for 3 months starting at 27 degrees and it went to 54 within 3

months despite the brace being woren 20 hours/day.

I'd consult Dr. and get his feedback.

Dr. also casted Max this past summer twice (when Dr. Sturm

was on medical leave) and neither of those casts held either.

Max will be getting the hybrid VEPTR at Shriner's Chicago. Dr. Sturm

has been nothing but honest with us from day 1. He always told us to

not rule out surgery. We just didn't expect it this soon. I guess as

a parent you never expect it.

Please keep us posted on what develops and what you find out about

Addy's recent development.

You are in our thoughts and prayers.

Aekta

> >

> > We had Addy's cast removed last week due to constant problems

> with it. It was her 10th cast and it had been on for 10 weeks.

When

> it was removed she had several open wounds and I can see why she

had

> been so uncomfortable in it. Her back(to me) looked terrible- very

> twisted with a prominent hump.

> > Yesterday.. She had an appointment with her geneticist up in

> Boston. He too thought that her back looked worse and had the

Ortho

> Dr's come in. She had x-rays and she is back up to 74 degrees.

This

> is what we were at when we began casting two years ago!!! At her

> last casting in November, she was down to 48 degrees. How could

this

> possibly happen while in a cast? Could a casting go terribly wrong

> and make things much worse? Of course the Boston Dr's think that

we

> should stop casting and have surgery asap. I am so confused!!! Any

> advise would be much appreciated -as I have no idea what to do now.

> >

> >

> >

> > ---------------------------------

> > Never miss a thing. Make Yahoo your homepage.

> >

> >

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and Jill,

Thanks for your prayers we truly appreciate them.

We are now due to be back in Erie, February 25 and 26. They have changed this

appt a few times due to scheduling problems. It's probably a good thing because

Addy now has a cold( we were suppose to be there next week). The Dr's in Boston

are really pushing for the growing rods. As of right now, I still do not know

what to do. Thanks again for your thoughts and prayers. please keep us updated

too!

Amy & Addy

McDowell wrote:

Dear Amy - I don't have any advice for you as is only in his

first cast, but we will probably be in your shoes one day...wondering

when/how/if to make that decision from casting to surgery. I would

talk to and get as much information from parents and various

doctors as possible, and then make the decision when you're ready.

I'll say a special prayer for you and Addy.

Best,

> > >

> > > We had Addy's cast removed last week due to

> > constant problems

> > with it. It was her 10th cast and it had been on for

> > 10 weeks. When

> > it was removed she had several open wounds and I can

> > see why she had

> > been so uncomfortable in it. Her back(to me) looked

> > terrible- very

> > twisted with a prominent hump.

> > > Yesterday.. She had an appointment with her

> > geneticist up in

> > Boston. He too thought that her back looked worse

> > and had the Ortho

> > Dr's come in. She had x-rays and she is back up to

> > 74 degrees. This

> > is what we were at when we began casting two years

> > ago!!! At her

> > last casting in November, she was down to 48

> > degrees. How could this

> > possibly happen while in a cast? Could a casting go

> > terribly wrong

> > and make things much worse? Of course the Boston

> > Dr's think that we

> > should stop casting and have surgery asap. I am so

> > confused!!! Any

> > advise would be much appreciated -as I have no idea

> > what to do now.

> > >

> > >

> > >

> > > ---------------------------------

> > > Never miss a thing. Make Yahoo your homepage.

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Looking for last minute shopping deals? Find them

> > fast with Yahoo! Search.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

__________________________________________________________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

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

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growing rods or VEPTRs. If you HAVE to choose surgery, VEPTR is better.

Shellie

Amy Norenberg wrote:

and Jill,

Thanks for your prayers we truly appreciate them.

We are now due to be back in Erie, February 25 and 26. They have changed this

appt a few times due to scheduling problems. It's probably a good thing because

Addy now has a cold( we were suppose to be there next week). The Dr's in Boston

are really pushing for the growing rods. As of right now, I still do not know

what to do. Thanks again for your thoughts and prayers. please keep us updated

too!

Amy & Addy

McDowell wrote:

Dear Amy - I don't have any advice for you as is only in his

first cast, but we will probably be in your shoes one day...wondering

when/how/if to make that decision from casting to surgery. I would

talk to and get as much information from parents and various

doctors as possible, and then make the decision when you're ready.

I'll say a special prayer for you and Addy.

Best,

> > >

> > > We had Addy's cast removed last week due to

> > constant problems

> > with it. It was her 10th cast and it had been on for

> > 10 weeks. When

> > it was removed she had several open wounds and I can

> > see why she had

> > been so uncomfortable in it. Her back(to me) looked

> > terrible- very

> > twisted with a prominent hump.

> > > Yesterday.. She had an appointment with her

> > geneticist up in

> > Boston. He too thought that her back looked worse

> > and had the Ortho

> > Dr's come in. She had x-rays and she is back up to

> > 74 degrees. This

> > is what we were at when we began casting two years

> > ago!!! At her

> > last casting in November, she was down to 48

> > degrees. How could this

> > possibly happen while in a cast? Could a casting go

> > terribly wrong

> > and make things much worse? Of course the Boston

> > Dr's think that we

> > should stop casting and have surgery asap. I am so

> > confused!!! Any

> > advise would be much appreciated -as I have no idea

> > what to do now.

> > >

> > >

> > >

> > > ---------------------------------

> > > Never miss a thing. Make Yahoo your homepage.

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Looking for last minute shopping deals? Find them

> > fast with Yahoo! Search.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

__________________________________________________________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

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Hi Amy,

I must have missed a few posts as I just returned to work full-time

after having baby #2 six weeks ago.

But, we are in the same boat you are in in making the decision

between VEPTR or growing rod. We have to give the doctor our finally

choice very soon as Max's surgery is less than a month away.

Every child and situation is different. Who is Addy's doctor and

where is he/she located?

We are leaning strongly toward the VEPTR. Max's doctor also

recommended the growing rod over the VEPTR. I'd love to chat with

you, feel free to e-mail me privately.

Carmell who is also on this site is a very valuable resource on the

VEPTR versus the growing rod. Perhaps you can talk with her if you

haven't already.

Hang in there, I know this is hard, we go thru this agonizing

decision everyday.

Aekta

> > > >

> > > > We had Addy's cast removed last week due to

> > > constant problems

> > > with it. It was her 10th cast and it had been on for

> > > 10 weeks. When

> > > it was removed she had several open wounds and I can

> > > see why she had

> > > been so uncomfortable in it. Her back(to me) looked

> > > terrible- very

> > > twisted with a prominent hump.

> > > > Yesterday.. She had an appointment with her

> > > geneticist up in

> > > Boston. He too thought that her back looked worse

> > > and had the Ortho

> > > Dr's come in. She had x-rays and she is back up to

> > > 74 degrees. This

> > > is what we were at when we began casting two years

> > > ago!!! At her

> > > last casting in November, she was down to 48

> > > degrees. How could this

> > > possibly happen while in a cast? Could a casting go

> > > terribly wrong

> > > and make things much worse? Of course the Boston

> > > Dr's think that we

> > > should stop casting and have surgery asap. I am so

> > > confused!!! Any

> > > advise would be much appreciated -as I have no idea

> > > what to do now.

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Never miss a thing. Make Yahoo your homepage.

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Looking for last minute shopping deals? Find them

> > > fast with Yahoo! Search.

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

> >

> >

> >

> __________________________________________________________

> > Never miss a thing. Make Yahoo your home page.

> > http://www.yahoo.com/r/hs

> >

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

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Amy And Aekta,

Let me just say that I UNDERSTAND!!!!! I have been where you are at right now.

Growing rod or VEPTR.

We did the VEPTR and here is why we chose.... The veptr implants are attached

from rib to pelvis....The growing rods would have been along the spine. I Just

thought that exposing my sons spine during implant surgery and every six months

(expansions) was something that I wanted to avoid. The VEPTR was less invasive

and more advanced. I know it isn't the solution for everyone and the growing

rods have their place and time (as Carmell would say) but the choice, in our

case, was a good one. I have never heard of anyone regretting their choice for

the VEPTR.?

Good luck to you both with making this difficult decision.??

Connie

Re: Adelaide's horrible set back

Hi Amy,

I must have missed a few posts as I just returned to work full-time

after having baby #2 six weeks ago.

But, we are in the same boat you are in in making the decision

between VEPTR or growing rod. We have to give the doctor our finally

choice very soon as Max's surgery is less than a month away.

Every child and situation is different. Who is Addy's doctor and

where is he/she located?

We are leaning strongly toward the VEPTR. Max's doctor also

recommended the growing rod over the VEPTR. I'd love to chat with

you, feel free to e-mail me privately.

Carmell who is also on this site is a very valuable resource on the

VEPTR versus the growing rod. Perhaps you can talk with her if you

haven't already.

Hang in there, I know this is hard, we go thru this agonizing

decision everyday.

Aekta

> > > >

> > > > We had Addy's cast removed last week due to

> > > constant problems

> > > with it. It was her 10th cast and it had been on for

> > > 10 weeks. When

> > > it was removed she had several open wounds and I can

> > > see why she had

> > > been so uncomfortable in it. Her back(to me) looked

> > > terrible- very

> > > twisted with a prominent hump.

> > > > Yesterday.. She had an appointment with her

> > > geneticist up in

> > > Boston. He too thought that her back looked worse

> > > and had the Ortho

> > > Dr's come in. She had x-rays and she is back up to

> > > 74 degrees. This

> > > is what we were at when we began casting two years

> > > ago!!! At her

> > > last casting in November, she was down to 48

> > > degrees. How could this

> > > possibly happen while in a cast? Could a casting go

> > > terribly wrong

> > > and make things much worse? Of course the Boston

> > > Dr's think that we

> > > should stop casting and have surgery asap. I am so

> > > confused!!! Any

> > > advise would be much appreciated -as I have no idea

> > > what to do now.

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Never miss a thing. Make Yahoo your homepage.

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Looking for last minute shopping deals? Find them

> > > fast with Yahoo! Search.

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

> >

> >

> >

> __________________________________________________________

> > Never miss a thing. Make Yahoo your home page.

> > http://www.yahoo.com/r/hs

> >

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>

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