Re: People who went to Iowa...How do you get the ball rolling?

January 19, 2006

Hi

We did the same kind of thing. I found his website, sent him an email with

pics of 's feet (after 8 weeks of unsuccessful casting) and phoned him

the next day. Within 10 days we were flying 10,000 miles (from South

Africa) with 10-week old to see Dr Ponseti. We financed it ourselves

as we don't have US medical scheme and our local one wouldn't pay. We also

stayed at RMH for 2.5 weeks by which time 's feet were fully corrected.

Everyone at the hospital and RMH was so good to us. The trip was worth every

cent and didn't have the major PMR surgery he'd been scheduled for at

home. Dr Ponseti and his team are the best.

and

24 Jan 2003, bilateral cf, treated by Dr Ponseti in April 2003

Moss

Steps Charity

<http://www.steps.org.za> www.steps.org.za

Cell:

_____

From: nosurgery4clubfoot

[mailto:nosurgery4clubfoot ] On Behalf Of childrenloveall

Sent: 19 January 2006 09:51 AM

To: nosurgery4clubfoot

Subject: Re: People who went to Iowa...How do you get

the ball rolling?

Hi ,

After checking with Ponseti trained doctors and talking to several of

them I just decided on a whim that I should talk to the man himself

so I simply looked up Dr. Ponseti on the internet, found his phone

number, and called him. I honestly didn't think it would go

anywhere, but I knew I had to try. I ended up talking to him right

then and there for about an hour and 4 days later I flew out there

with my daughter, , and son, . It was amazing and the

best decision we ever made. We had to take out a loan to make it all

work, but we needed to do this at whatever cost to give her the

healthiest feet we could. is fully corrected now at age 4

and this is totally a miracle to us, as the doctors in Utah told us

she would have most likely been an amputation case.

Call Dr. Ponseti directly at 1- after 2:30 on Mondays,

Wednesdays and Fridays. His secretaries name is Joyce Roller and she

is available all day on Mondays and Fridays at 1-. Joyce

is so awesome and will line everything up for you. The RMH is a

great place to stay and there's lots to do in town. Angel Flight and

Miracle Flights can help with transportation at times. Good luck to

you and you can't go wrong going out there.

Sincerely,

Joyce

>

> Thank you to " jennyandkelly " for such prompt responses and great

> information. It's really got me thinking that we probably should

go

> to Iowa. I want the best for my son. If someone's gonna tell me

he

> definitely needs surgery, I want the best Ponseti people telling

me.

> I'm thinking it also would be worth every penny to fly there and

have

> them tell me he's doing fine (wouldn't that be a miracle!) too.

>

> Those of you who went to Iowa, how did you begin to research

getting

> there, insurance questions, cost of treatment, etc. Did you just

call

> up and say, " Hi, I want to bring my son/daughter in to see you. " ?

Did

> you call the Department of Orthopedic Surgery, or did you

call/email

> Dr. Ponseti himself?

>

> I've spoken with my husband and we're seriously considering at

trip.

> Oh boy!...any help would be so appreciated.

>

> and (3/30/04 - " stubborn " RCF)

>

January 19, 2006

an AMPUTATION case???? OMG! I just cannot imagine hearing a doctor say that to

you and how you must have felt hearing it!

s.

Re: People who went to Iowa...How do you get the

ball rolling?

Hi ,

After checking with Ponseti trained doctors and talking to several of

them I just decided on a whim that I should talk to the man himself

so I simply looked up Dr. Ponseti on the internet, found his phone

number, and called him. I honestly didn't think it would go

anywhere, but I knew I had to try. I ended up talking to him right

then and there for about an hour and 4 days later I flew out there

with my daughter, , and son, . It was amazing and the

best decision we ever made. We had to take out a loan to make it all

work, but we needed to do this at whatever cost to give her the

healthiest feet we could. is fully corrected now at age 4

and this is totally a miracle to us, as the doctors in Utah told us

she would have most likely been an amputation case.

Call Dr. Ponseti directly at 1- after 2:30 on Mondays,

Wednesdays and Fridays. His secretaries name is Joyce Roller and she

is available all day on Mondays and Fridays at 1-. Joyce

is so awesome and will line everything up for you. The RMH is a

great place to stay and there's lots to do in town. Angel Flight and

Miracle Flights can help with transportation at times. Good luck to

you and you can't go wrong going out there.

Sincerely,

Joyce

>

> Thank you to " jennyandkelly " for such prompt responses and great

> information. It's really got me thinking that we probably should

go

> to Iowa. I want the best for my son. If someone's gonna tell me

he

> definitely needs surgery, I want the best Ponseti people telling

me.

> I'm thinking it also would be worth every penny to fly there and

have

> them tell me he's doing fine (wouldn't that be a miracle!) too.

>

> Those of you who went to Iowa, how did you begin to research

getting

> there, insurance questions, cost of treatment, etc. Did you just

call

> up and say, " Hi, I want to bring my son/daughter in to see you. " ?

Did

> you call the Department of Orthopedic Surgery, or did you

call/email

> Dr. Ponseti himself?

>

> I've spoken with my husband and we're seriously considering at

trip.

> Oh boy!...any help would be so appreciated.

>

> and (3/30/04 - " stubborn " RCF)

>

January 19, 2006

Jen and ,

If you are able to come to Iowa, you absolutely won't regret it...I

called Dr. Ponseti after he viewed pics of via email - he

requested that I call him. I thought that I would get a machine or a

secretary, but instead, he picked up the phone on the third ring (Do

doctors actually do that anymore?)Dr. Ponseti was just so kind and

lovely on the phone. He asked us to not go through with the surgery

that 's fourth ortho wanted to do, and that if possible, " This

baby should come here. " After putting our 11 month old through the

ringer with different orthos, we knew that the only thing to do was to

come to the source. We figured that it would probably take months to

get in to see him, but this was a Wednesday, and Joyce asked whether

we wanted our appointment the following Wednesday or Friday...

We contacted our insurance co, and got a different answer each time we

called. Honestly, the best source of info was when I posted a thread

on this site about my specific insurance company. I got plenty of

responses with people that had come before us using that insurance co.

We ended up switching from our HMO to a PPO within the same company,

but that's not necessary in every case. I think that posted info

on her site that the cost of treatment here (w/o insurance) is $4000-

$7000.

I called the Mc House the same day that I made the

appointment, and we packed up the car within days, and drove the

almost 1300 miles here from Florida! Dr. Ponseti told us to expect to

be here at least three weeks, leaving on the 24th. Then during our

second appointment, he said that her new s needed to be sent

to the office to be ready before we leave on the 30th (Not the best

news, but we figured that if we had come this far, and he needed an

extra week to make sure she was okay, so be it...There could be worse

things!)Yesterday, when he took her casts off, her feet were

absolutely perfect! I didn't say anything, because I was afraid to

jinx it. Dr. P said, " Oh, the feet are too good. We do the tenetomy

today. " The tenetomy means you go home (not everyone needs it, but

most do) with your son/daughter in a healing cast for three weeks that

you remove at home. They will send us the s in the mail, and

we come back for a follow up in three months. If someone had told us

even a few months ago that we could go somewhere (even Timbuctu) for

two weeks, and not be at that crossroads that we were standing at for

so long, we wouldn't have believed it. Please come to Iowa City if you

can. What an amazing and emotional experience this all has been!

Keep everyone posted,

( 2/1/06 Ponseti corrected!-woo hoo!!!)

>

> Thank you! Thank you! You have no idea what this information means

> to us. We're so grateful.

> Jen and (rcf 3/30/04)

>

January 19, 2006

I remember going there with Everett and expecting to say much longer than we

did, too! lol. Dr. Ponseti asked us, " Do you WANT to stay longer? " HAHAHA

grinning ear to ear as he spoke. Heck no! I just couldn't beleive it was over

so fast (3 weeks).

And with five years ago, he called me at home, " You need to get him here

as soon as possible " he told me. With in a week I was on an Angel Flight. I

couldn't manage to go to the grocery store with out a week notice (joke) but

there I was ona major expidition with in a week, things just fell in to place

beautifully when it was right.