Re: Alaya's update

[Guest guest]

Oh wow, I hope it's not a regression. As I gradually approach the end of our

FAB time I live in fear of that myself.

s.

Alaya's update

Well, we too saw Dr. Ponseti today. Alaya is 4, she has been out of

the brace since January. Dr. P. is concerned that Alaya's right

heal may be turning back and she doesn't have as much flexibility in

her right foot as he would like. He wants to see her back in 6

months. If there is any change for the worse he will put her back

in a cast and the brace again. I'd almost rather just put her in

the shoes now, but he said that we don't really know if she is

regressing and he wants to wait. Her current shoes are too small so

we need new ones if she is regressing, but he didn't want to get her

new ones unless she needs them. Thankfully we had taken her brace

and old shoes with the intention of donating them to the Uganda

project or other families. , the nurse said she didn't think

they take shoes back and we should ask Dr. P. but before we asked he

said we need to keep them.

We were hoping to see Tabitha and Karter and other cf families, but

didn't get to see anyone. It looks like we will be making at least

one more trip to Iowa, but it sounds more like two. Maybe we will

make the symposium next year. He said the chance for regression is

reduced as she gets older. After the age of 6 it's almost unheard

of and that at six the foot will be about 1/2 the size that her

adult foot is going to be, but she has a lot of time between now and

age six for regression to recur.

Joanne and Alaya 8-22-01

[Guest guest]

Hearing stories like this makes my heart skip a few beats - I hope

it's not regression. I don't know your history, as I don't hop on

here as often as I would like. I'm curious - did you seek treatment

with Dr. Ponseti from the beginning?

Zach, turned three in July and still wears the DBB at night. This

next summer we'll be traveling to Iowa to see where we stand, and

" hopefully " (although I'm nervous) hear that he can be out of the DBB.

I tell you, at the beginning it was so hard to get accustomed to.

Then, after 3 years of it, it's just a part of who he and we are. I'm

absolutely frightened to discontinue the use of the DBB and especially

so after reading your situation...

Hugs to you - and I hope it's absolutely nothing.

Holly

Zachary 7/27/02

Unilateral Right C/F

Treated by Dr. Ponseti

DBB Nights Only

>

> Oh wow, I hope it's not a regression. As I gradually approach the

end of our FAB time I live in fear of that myself.

> s.

>

> Alaya's update

>

>

> Well, we too saw Dr. Ponseti today. Alaya is 4, she has been out of

> the brace since January. Dr. P. is concerned that Alaya's right

> heal may be turning back and she doesn't have as much flexibility in

> her right foot as he would like. He wants to see her back in 6

> months. If there is any change for the worse he will put her back

> in a cast and the brace again. I'd almost rather just put her in

> the shoes now, but he said that we don't really know if she is

> regressing and he wants to wait. Her current shoes are too small so

> we need new ones if she is regressing, but he didn't want to get her

> new ones unless she needs them. Thankfully we had taken her brace

> and old shoes with the intention of donating them to the Uganda

> project or other families. , the nurse said she didn't think

> they take shoes back and we should ask Dr. P. but before we asked he

> said we need to keep them.

>

> We were hoping to see Tabitha and Karter and other cf families, but

> didn't get to see anyone. It looks like we will be making at least

> one more trip to Iowa, but it sounds more like two. Maybe we will

> make the symposium next year. He said the chance for regression is

> reduced as she gets older. After the age of 6 it's almost unheard

> of and that at six the foot will be about 1/2 the size that her

> adult foot is going to be, but she has a lot of time between now and

> age six for regression to recur.

> Joanne and Alaya 8-22-01

>

>

>

>

>

>