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Well, I wrote a long letter to Dr. Sussman finally and asked why she

couldn't have a $380 brace that may help her curvy toes problem. But they

could give babies $2000 AFO's across the board because they're not willing

to try any of the MULTIPLE different resources I sent them months ago. In

a nutshell... it was much longer than that!

And got another somewhat cryptic response but this time, a little more

encouraging.

He said he'd look into getting Darbi some Ponseti/'s! If they're

available commercially it shouldn't be a problem. OK! Insurance covered

them, but after deductible and out of network provider discounts... I

still was left with the $320. Yeah, I could save for it. And I actually

was planning on just buying them but I thought one last plea might be worth

the effort. He might just be trying to get rid of me, but it's not going

to be so easy. I think once he sees one of these it'll be easier to get

him to phase back into using a FAB with his patients. I'm not giving up so

easy! Can't pacify me with a brace lol... it's just the beginning!

So I think it'll happen. Someway it will. I will pay if I have to and am

sending her impressions tomorrow. Her toes are getting worse and I am

going to have to splint and/or tape them to get them to be straight. Still

waiting for a response on exactly what I can do to solve this problem...

having only asked in emails twice now as well as in person without any

answer.

But yay for Darbi, and yay for getting this brace at least SEEN here in

Portland. I know they're going to love it. They have to!

Kori

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Kori,

Well that is good news. Yay for Darbi so maybe she won't have curly

toes! I just wish you could get the Dobbs articulating bar on the

shoes. They really need to get on that!

> Well, I wrote a long letter to Dr. Sussman finally and asked why she

> couldn't have a $380 brace that may help her curvy toes problem.

But they

> could give babies $2000 AFO's across the board because they're not

willing

> to try any of the MULTIPLE different resources I sent them months

ago. In

> a nutshell... it was much longer than that!

>

> And got another somewhat cryptic response but this time, a little more

> encouraging.

>

> He said he'd look into getting Darbi some Ponseti/'s! If

they're

> available commercially it shouldn't be a problem. OK! Insurance

covered

> them, but after deductible and out of network provider discounts... I

> still was left with the $320. Yeah, I could save for it. And I

actually

> was planning on just buying them but I thought one last plea might

be worth

> the effort. He might just be trying to get rid of me, but it's not

going

> to be so easy. I think once he sees one of these it'll be easier to

get

> him to phase back into using a FAB with his patients. I'm not

giving up so

> easy! Can't pacify me with a brace lol... it's just the beginning!

>

> So I think it'll happen. Someway it will. I will pay if I have to

and am

> sending her impressions tomorrow. Her toes are getting worse

and I am

> going to have to splint and/or tape them to get them to be straight.

Still

> waiting for a response on exactly what I can do to solve this

problem...

> having only asked in emails twice now as well as in person without any

> answer.

>

> But yay for Darbi, and yay for getting this brace at least SEEN here in

> Portland. I know they're going to love it. They have to!

>

> Kori

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My friend's little boy had curly toes. When our doctor was doing the

casting, she used the casts to correct them. I believe that she just

pushed the cast down on the toe while it was in the correct position and

the cast hardened there and corrected it. This worked for her baby.

Just in case you wanted to know.

angie, bryce and andrew

Porter

Crystal Elementary

Resource Room

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so this actually is happening also on the non clubfoot foot? something different

from the " normal " curve of the toes on a CF baby? why do the toes curve anyawys?

mommy to Grace 12-03-03 BCF Dobb's Brace 16/7

frogabog frogabog@...> wrote:

Darbi's second toe is curving like a C toward the outside of her

foot. They was straight when she was born, and up till about maybe a year

ago when they started curving. Her toe on her non CF is the worst, when

it's in the shoes and relaxed it actually sits up above the adjacent

toes. I can't get the toes of her shoes loose enough to stop this, and I

leave quite a bit of slack at the toes now too. As soon as she's in them,

it gets pushed up and squashed and it's getting worse.

From what I can tell the P/M shoes leave the toes completely exposed, and

my hope is to use that to relieve the pressure as well as possibly

splinting them. I don't know what exactly to *do*, but I don't want

another year and a half of squashed toes going on here so that's why I want

the P/M's.

kori

love, lisa

before i made you in the womb, i knew you... love God.

__________________________________________________

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Hers never have. She has beautiful straight feet and toes... well, except

for those two. And yeah, it's happening on both feet but the non CF is

definitely worse. The CF toe doesn't rise up and sit on top of the other

toes either. Go figure...

I've heard of these curved toes, but most of the ones I've seen pics of are

pointing up. Hers is curving toward the outsides. I know it's the shoes,

and not a condition of the CF. I had sent pics to the CFPic list last

fall, I should take another set and compare them.

I know it sounds petty, but if the shoes are causing it I want to try to

remedy it before her bones get too hard. What's the point of giving her a

nice straight foot if her toes pointing east and west are going to make her

refuse to wear sandals? A girl has the right to have pretty feet if

possible methinks... I know some women who won't wear sandals because of

funky toes. One in particular messed hers up in toe shoes when she was a

dancer. Took some convincing to get her to pretty them up with polish and

toe rings and actually leave the house. Hadn't worn sandals in 10 or more

years. So hey, call me petty, but I don't want Darbi to have curvy toes if

she doesn't have to.

I doubt all, or even many children will experience this in the Markell's

but it happened with Darbi and likely has more to do with genetic foot

shaping than clubfoot. She's fitting just fine at the ankle so I doubt a

wide (if they make it) would work either. I could splint her toe in the

Markell's but I think it'd be uncomfortable. The P/M leaves the toes much

more exposed. Heck, it is a darn fine excuse to bring a pair of P/M's into

Portland Shriners so they see that there are solutions to tolerance

issues... and the solutions are all FAB's that are absolutely *available*.

I wonder, if she were a boy would I worry so much? The fact that it's

getting worse than it was even 6mo's ago bothers me though and much more

than they're curving right now I probably would still be pushing this.

Kori

At 02:06 PM 5/3/2005, you wrote:

>so this actually is happening also on the non clubfoot foot? something

>different from the " normal " curve of the toes on a CF baby? why do the

>toes curve anyawys?

>

> mommy to Grace 12-03-03 BCF Dobb's Brace 16/7

>

>frogabog frogabog@...> wrote:

>Darbi's second toe is curving like a C toward the outside of her

>foot. They was straight when she was born, and up till about maybe a year

>ago when they started curving. Her toe on her non CF is the worst, when

>it's in the shoes and relaxed it actually sits up above the adjacent

>toes. I can't get the toes of her shoes loose enough to stop this, and I

>leave quite a bit of slack at the toes now too. As soon as she's in them,

>it gets pushed up and squashed and it's getting worse.

>

> From what I can tell the P/M shoes leave the toes completely exposed, and

>my hope is to use that to relieve the pressure as well as possibly

>splinting them. I don't know what exactly to *do*, but I don't want

>another year and a half of squashed toes going on here so that's why I want

>the P/M's.

>

>kori

>

>

>love, lisa

>before i made you in the womb, i knew you... love God.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>__________________________________________________

>

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