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Re: Rose S. update

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Joy,

Thank you so much for sharing Rose's story. Right now Becky is

only 2 1/2, but it gives me lots of hope on what to look forward to

when she is 5! :)

, mommy to Becky 11/12/01 bilateral clubfoot :)

-- In nosurgery4clubfoot , " loulee3412 "

wrote:

> Hi Joy,

>

> Thank you for sharing Rose's story. I am so pleased that the PT is

> helping with her strength. I will keep this in mind as Zoe

grows.

> She is righty only, so I have concerns/questions that can only be

> answered with time. I couldn't see the pictures, but will try

again

> later.

>

> Take care,

> Louisa

> 6-27-99

> Zoe 2-22-04 RCF FAB 18/7

>

>

> > A little background:

> >

> > Rose was born with a left clubfoot over 5 years ago. At 10 days

> old she

> > received her first, crappy below-the-knee cast from the

hospital's

> on call

> > ortho who hadn't seen a case of clubfoot in 8 years. After a

> hellish cast

> > removal the night before, he was excited to hear she hadn't

kicked

> the cast

> > off, so the next cast stayed on for two weeks. Woo hoo. At

around

> 2.5 months

> > she was referred to a pediatric ortho who was 3 hours away. He

> said the ortho

> > had been casting incorrectly, and the casts should have been

above

> the knee.

> > The ped ortho went on to apply a large fiberglass cast. We were

> then to

> > alternate visits with the ortho and ped ortho, and to tell the

> ortho to apply

> > an above-knee cast.

> >

> > Rose also had x-rays to determine that, yes, she would

absolutely

> need surgery.

> > I remember the ped ortho holding up the x-rays in the window

and

> explaining

> > and showing exactly why it would have to be done. He traced her

> foot showing

> > what would be done to correct it. ...We will cut this here,

pull

> this down,

> > cut this here, align this. Then she was to wear a large post-

> surgical casts

> > for 6-8 weeks and go onto wear an AFO for a year.

> >

> > Didn't happen. At six months of age and only three weeks before

> her scheduled

> > surgery I called Dr. Ponseti. Thanks to 's encouragement

> that it was NOT

> > too late. Rose received a cast from Dr. P, and it responded

> marvelously.

> > After the first cast, Dr. P said her foot looked fantastic, and

she

> could have

> > her tenotomy now. We started wearing the brace a week after she

> would have

> > gone through surgery.

> >

> > So, anyway, a little longer winded than I planned, but Rose wore

> the FAB till

> > she was 2.5. At that age, Dr. Ponseti was concerned that she

had

> loose

> > ligaments and at that time we discontinued using the FAB.

> >

> > Rose is 5 1/2 now and in kindergarten! Having fun. :) Anyway,

she

> has started

> > physical therapy this year. We saw Dr. Ponseti in June, and he

> wasn't very

> > happy with how her foot looked. He did not recommend PT, but he

> did suggest

> > roller-skating to stretch that inside tendon. Rose's toes were

> really turning

> > in because the large inside tendon is tightening. Fortunately,

her

> heel was

> > still down, and she had a fairly good range of motion, so we

didn't

> have any

> > talks of surgery. Dr. P felt she was too old to start bracing

> again.

> >

> > As for the physical therapy it isn't to help her foot so much as

it

> is to

> > strengthen her entire leg. Rose's doctor was concerned that her

> leg was

> > significantly weaker than her right leg. She couldn't hop very

> much on the

> > clubfoot leg. So we decided to go ahead with the PT, and I have

> noticed the

> > leg has gained strength. Hopscotch is one of the exersizes she

> does. :) She

> > is doing some tiptoes and using a rubberband to push against.

> Anyone have any

> > thoughts on the physical therapy? Parents of older children

with

> unilateral cf

> > have you dealt with a weaker leg due to the cf? Also, does

anyone

> with older

> > cf have leg length difference? Rose has a very small leg length

> difference,

> > and we are thinking of using an insert in her shoe.

> >

> > I think when we saw Dr. Ponseti, Rose must have been going

through

> a major

> > growth spurt. I have some pictures to share of her foot. The

> first two

> > pictures are from June prior to seeing Dr. P. The next five are

> pictures

> > before starting any PT, and they look straighter (we've been

> praying hard).

> > Here is the link:

> >

> >

>

http://pg.photos.yahoo.com/ph/joybelle15/album?.dir=mail&.src=ph&stor

e

> =&prodid=&.done=http%3a//pg.photos.yahoo.com/ph//my_photos

> >

> > I believe we'll be going to the symposium in November. For

awhile,

> I was

> > feeling really depressed about the appearance of Rose's foot. I

> have now

> > gained a more positive perspective, but at the time it was

tough!

> This got lot

> > longer than I expected, and I have things to get done. Better

get

> to them. :)

> >

> > So sorry I don't keep up here as much as I should.

> >

> > Joy

> > Rose 1-30-99

> > Iris 2-28-01

> > Spencer 3-12-03

> >

> >

> > =====

> > http://www.geocities.com/joybelle15/rosesclubfootpage.html

> >

> > __________________________________________________

> >

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--- loulee3412 loulee3412@...> wrote:

> Hi Joy,

>

> Thank you for sharing Rose's story. I am so pleased that the PT is

> helping with her strength. I will keep this in mind as Zoe grows.

> She is righty only, so I have concerns/questions that can only be

> answered with time. I couldn't see the pictures, but will try again

> later.

Thank you, Louisa, I'm so glad you enjoyed Rose's story. I think the PT is

helping, though she has been kind of a stinker about doing it lately. I don't

think we really noticed any difference it strength until she started hopping on

one foot regularly and counting. Rose would get into the twenties on her

non-clubfoot and only get to 5 or 6 on the clubfoot leg. She can get into the

twenties now with both feet, and there isn't as large of a gap.

I'm sorry the pictures couldn't be viewed. I will try to re-send a link or

something.

Joy

=====

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

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--- loulee3412 loulee3412@...> wrote:

> Hi Joy,

>

> Thank you for sharing Rose's story. I am so pleased that the PT is

> helping with her strength. I will keep this in mind as Zoe grows.

> She is righty only, so I have concerns/questions that can only be

> answered with time. I couldn't see the pictures, but will try again

> later.

Thank you, Louisa, I'm so glad you enjoyed Rose's story. I think the PT is

helping, though she has been kind of a stinker about doing it lately. I don't

think we really noticed any difference it strength until she started hopping on

one foot regularly and counting. Rose would get into the twenties on her

non-clubfoot and only get to 5 or 6 on the clubfoot leg. She can get into the

twenties now with both feet, and there isn't as large of a gap.

I'm sorry the pictures couldn't be viewed. I will try to re-send a link or

something.

Joy

=====

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

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--- loulee3412 loulee3412@...> wrote:

> Hi Joy,

>

> Thank you for sharing Rose's story. I am so pleased that the PT is

> helping with her strength. I will keep this in mind as Zoe grows.

> She is righty only, so I have concerns/questions that can only be

> answered with time. I couldn't see the pictures, but will try again

> later.

Thank you, Louisa, I'm so glad you enjoyed Rose's story. I think the PT is

helping, though she has been kind of a stinker about doing it lately. I don't

think we really noticed any difference it strength until she started hopping on

one foot regularly and counting. Rose would get into the twenties on her

non-clubfoot and only get to 5 or 6 on the clubfoot leg. She can get into the

twenties now with both feet, and there isn't as large of a gap.

I'm sorry the pictures couldn't be viewed. I will try to re-send a link or

something.

Joy

=====

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________

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