Re: Iowa in a Whirlwind 12 hours!

December 14, 2004

That's pretty impressive because 12 hours is what it takes us to get

about half-way TO Iowa!

We're leaving on Saturday for our Monday appointment. He's checking

up on Devlin after the second tenotomy (done on Halloween). Your

story about the snow solidified my desire to take the Jeep (it's a

Wrangler---kind of tight space for such a long trip). Now, if I

could just convince DH that's the best choice!

It sounds like you'll have some fun driving ahead of you. Does that

mean you'll be there on Monday too?

> Well, we went, we met, we saw, we recasted. It was wonderful

to meet Dr. P, Joyce and the nurses who have helped us so much over

the phone. And indeed my gut was right. has relapsed and has

a misplaced bone (don't know which but it's 'fixable' LOL) so Dr. P

did the first in a series of casts. We'll be heading back each

monday for awhile. He's not sure yet how many or whether we'll need

the tenotomy again but he did say that no she won't need surgery and

no, AFO's are not a good choice for her during the day while still

wearing the DBB at night. I was soooo relieved.

>

> He also said the following which I found interesting and thought

some of you might, too. Quick history: she has atypical feet -

thought by Dr. P to be either 5 or 6 to begin with although he didn't

see them then so based on medical record and our answers to his

questions. She's been in braces since she was out of

casts. He said that: it's quite common for kids with atypical cf to

relapse even in the shoes until 12 mos or so and need recorrection,

that her big toe sticking up is also quite common in cf, especially

those that are not the norm, and finally that it is rare that feet

need second tenotomies but it's more common with difficult feet.

>

> I'm glad we went. I'll be going again if I ever have a question

and now know I should have gone from the beginning. We were in

around 10 pm, slept, got her ready and we at the hospital by 8 as

requested, then out by 10:30 and back on the road home. The snow we

hit on the way home was just a wonderful welcome to the realities of

traveling in the winter in the midwest... oh joy.

>

> Now, on to Christmas cooking for the day!

> Chris

>

December 14, 2004

I'm so glad you went Chris! I know how hard it is to make that decision when

you are already seeing " one of the best doctors " out of Dr P's own mouth. lol

's foot will be good as new and then you will be on you way to the end of

the road again.

Angel

Iowa in a Whirlwind 12 hours!

Well, we went, we met, we saw, we recasted. It was wonderful to meet Dr. P,

Joyce and the nurses who have helped us so much over the phone. And indeed my

gut was right. has relapsed and has a misplaced bone (don't know which

but it's 'fixable' LOL) so Dr. P did the first in a series of casts. We'll be

heading back each monday for awhile. He's not sure yet how many or whether

we'll need the tenotomy again but he did say that no she won't need surgery and

no, AFO's are not a good choice for her during the day while still wearing the

DBB at night. I was soooo relieved.

He also said the following which I found interesting and thought some of you

might, too. Quick history: she has atypical feet - thought by Dr. P to be

either 5 or 6 to begin with although he didn't see them then so based on medical

record and our answers to his questions. She's been in braces since

she was out of casts. He said that: it's quite common for kids with atypical

cf to relapse even in the shoes until 12 mos or so and need recorrection, that

her big toe sticking up is also quite common in cf, especially those that are

not the norm, and finally that it is rare that feet need second tenotomies but

it's more common with difficult feet.

I'm glad we went. I'll be going again if I ever have a question and now know I

should have gone from the beginning. We were in around 10 pm, slept, got her

ready and we at the hospital by 8 as requested, then out by 10:30 and back on

the road home. The snow we hit on the way home was just a wonderful welcome to

the realities of traveling in the winter in the midwest... oh joy.

Now, on to Christmas cooking for the day!

Chris

December 14, 2004

I am so glad you made it, and before getting a surgery. Dr. Ponseti

had shared that with me yesterday as we were there right after he saw

you. He was so pleased you had come before getting the surgery!

What time is your appt on Monday? Ours is 9, we will be in the

casting room getting them soaked off. How old is again?

We had a hard trip home with the weather too. Once we hit the

michigan border it was blizzard condition all the way up past holland.

Then, completely clear! Amazing.

Have a wonderful week and hopefully we can meet on monday!

> Well, we went, we met, we saw, we recasted. It was wonderful to

meet Dr. P, Joyce and the nurses who have helped us so much over the

phone. And indeed my gut was right. has relapsed and has a

misplaced bone (don't know which but it's 'fixable' LOL) so Dr. P did

the first in a series of casts. We'll be heading back each monday

for awhile. He's not sure yet how many or whether we'll need the

tenotomy again but he did say that no she won't need surgery and no,

AFO's are not a good choice for her during the day while still wearing

the DBB at night. I was soooo relieved.

>

> He also said the following which I found interesting and thought

some of you might, too. Quick history: she has atypical feet -

thought by Dr. P to be either 5 or 6 to begin with although he didn't

see them then so based on medical record and our answers to his

questions. She's been in braces since she was out of casts.

He said that: it's quite common for kids with atypical cf to relapse

even in the shoes until 12 mos or so and need recorrection, that her

big toe sticking up is also quite common in cf, especially those that

are not the norm, and finally that it is rare that feet need second

tenotomies but it's more common with difficult feet.

>

> I'm glad we went. I'll be going again if I ever have a question and

now know I should have gone from the beginning. We were in around 10

pm, slept, got her ready and we at the hospital by 8 as requested,

then out by 10:30 and back on the road home. The snow we hit on the

way home was just a wonderful welcome to the realities of traveling in

the winter in the midwest... oh joy.

>

> Now, on to Christmas cooking for the day!

> Chris

>

December 14, 2004

Im so glad you all made it back o.k. we will be leaving tommarow

afternoon. our appointment i s friday at 9:00. but i hear you guys

talking about snow and a blizzard, where is all this bad weather?

we are driving from texas and are leaving w/ plenty of time but i am

kind of worried about the weather and roads. any info would help. we

should be there a couple of days since dr.p said she would need 1-2

sets of casts so we may get to meet some of you!

and

BL CF 12/16/03

> > Well, we went, we met, we saw, we recasted. It was

wonderful to

> meet Dr. P, Joyce and the nurses who have helped us so much over

the

> phone. And indeed my gut was right. has relapsed and has a

> misplaced bone (don't know which but it's 'fixable' LOL) so Dr. P

did

> the first in a series of casts. We'll be heading back each monday

> for awhile. He's not sure yet how many or whether we'll need the

> tenotomy again but he did say that no she won't need surgery and

no,

> AFO's are not a good choice for her during the day while still

wearing

> the DBB at night. I was soooo relieved.

> >

> > He also said the following which I found interesting and thought

> some of you might, too. Quick history: she has atypical feet -

> thought by Dr. P to be either 5 or 6 to begin with although he

didn't

> see them then so based on medical record and our answers to his

> questions. She's been in braces since she was out of

casts.

> He said that: it's quite common for kids with atypical cf to

relapse

> even in the shoes until 12 mos or so and need recorrection, that

her

> big toe sticking up is also quite common in cf, especially those

that

> are not the norm, and finally that it is rare that feet need second

> tenotomies but it's more common with difficult feet.

> >

> > I'm glad we went. I'll be going again if I ever have a question

and

> now know I should have gone from the beginning. We were in

around 10

> pm, slept, got her ready and we at the hospital by 8 as requested,

> then out by 10:30 and back on the road home. The snow we hit on

the

> way home was just a wonderful welcome to the realities of

traveling in

> the winter in the midwest... oh joy.

> >

> > Now, on to Christmas cooking for the day!

> > Chris

> >

December 14, 2004

Yes, I can't wait to see BOTH feet flat on the ground when she pulls up to a

stand. It will have been worth it and I'm sure I'll quietly think of these

events in our lives as I watch her run across the playground, step in to her

first high heels or head down the aisle with her Daddy on her wedding day. It

will have all be sooo worth it.

Chris

Iowa in a Whirlwind 12 hours!

Well, we went, we met, we saw, we recasted. It was wonderful to meet Dr.

P, Joyce and the nurses who have helped us so much over the phone. And indeed

my gut was right. has relapsed and has a misplaced bone (don't know which