Re: Re: Iowa in a Whirlwind 12 hours!

December 14, 2004

,

OH if at all possible take the best 'snow' vehicle! You won't be sorry this

time of year. However it was clear as a bell in Iowa, you just had to hold on

to yourself or you'd blow away. LOL

Indeed we'll be there Monday!! We are due to arrive at 8:30 so Cher can help

soak off the casts. I just couldn't imagine doing that in the RR's bathtub!

LOL And then we'll get our cast and once again head back home. My boys and my

mom are coming with me this time. Should be interesting. The boys are 7 and

11. Just the age to LOVE spending two days in a car. LOL

Hope to see you there. When's your appt?

Chris

Re: Iowa in a Whirlwind 12 hours!

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

Good grief!!! I wish we'd have known! We'd have come on over to meet you! He

said he was heading over to a new baby so I didn't think it was you. However,

Joyce did say at one point when she was leaving us that she was on her way to

see another of her " email friends " . Must have been you.

So next Monday we'll be in the cast room before you soaking. I'll tell Cher

(she said she's on again next monday because Marie is on vacation) to be sure to

let us cross paths.

Chris

Re: Iowa in a Whirlwind 12 hours!

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

,

Our bad weather was in Indiana and Ohio. Lake effect and a NWN wind makes for a

bad combo. We've got 14 inches in places here in Ohio. It's a beautifully

white day out. And more snow is falling but it's gentle now - no wind! Go to

www.weather.com to see what's coming where you will be driving.

Chris

Re: Iowa in a Whirlwind 12 hours!

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

I'll be looking for those dimples! is 10 mos and a peanut dressed in pink

99% of the time (does it show that I had three boys first? LOL) and in a

stroller. I'll be with my mom and my 7 and 11 year old. We'll have to at least

say hi!

Yep this cast is um... unusual. LOL Never had one like this before. He said

he'd make that decision this next week but one or two more and maybe tenotomies,

maybe not. So we are waiting to see how she responds to this casting. One of

her feet were much more relapsed than the other. So while we hope for just one

more, I think we'll need two. It's just one of those rules with . If it's

unusual, she's got it.

We'll definitely have to tell them we're looking for you!

Re: Iowa in a Whirlwind 12 hours!

Just so you know what to look for, is 14 months with a little

button nose and big brown eyes and dimples and in a stroller. I am

short and round with dark brown hair. My dad will be with me, short

too. heheh! You probably won't miss us! Can't wait to see you!

p.s. yup, Joyce was with me after you. I wasn't the new baby one, you

had just left when joyce came to see us. We'll catch up one of these

days! How many more castings did dr. p think needed? This

casting she's in now is kinda freaky looking. LOL I remember

in that one the first time...don't know if he'll go to that one

again or not. It's mostly his heel that is so tight and underneath

the ball of his feet.

> > 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

Indeed! It's like a weight has been lifted.

Chris

Re: Iowa in a Whirlwind 12 hours!

That is just great news Chris!!! You must be so relieved!

& Grace