Re: reintro: 3.5 year old daughter with untreated bilateral clubfeet

[Guest guest]

Hi ,

No, we didn't change to a suite because I thought we'd only be here

another 2 weeks or so. Now I really wish we would have and your

suite is taken. Plus I don't know if they would have granted that

wish since it's only her and I right now. I'm glad is doing

soooo well and we'll keep him in our prayers. Take care!

Love,

Joyce

> > > Oh Joyce you literally bring tears to my eyes. If Dr. Ponseti

> > isn't a " God Thing " I just don't know what is! We all look so

> > forward to hearing more from you about your lovely daughter and

her

> > treatment/progress, etc.....I just feel so happy right now for

> > you!!!!!! I come to Iowa for check ups on Oct. 12th, I'd love to

> > see you if possible. I have two boys, both with bilateral cf.

> > > shawnee

> > >

> > >

> > > reintro: 3.5 year old daughter

with

> > untreated bilateral clubfeet

> > >

> > >

> > > Hi everyone,

> > >

> > > I only posted once and it was back in early August right before

> we

> > > came out to Iowa. Thanks for those of you that gave me your

> input

> > to

> > > my question. We brought our little , , home from

> China

> > on

> > > Thanksgiving Day last year and she is now 3 1/2 years old. She

> > was

> > > born with bilateral clubfeet and she was walking, running,

> > jumping,

> > > and climbing on her feet since we got her. She does a great

job

> > > keeping up with her brother who started kindergarten this

year.

> > > Before we went to get her we knew she had received no treatment

> > for

> > > her clubfeet so I began researching doctors before we ever

> brought

> > > her home. My quest was to find a doctor who had experience

> > treating

> > > children who had actually walked on their clubfeet for some

years

> > > before treatment. As you all know, that is a challenge in

> America

> > > because we treat our children right after they are born. My

> > search

> > > led us to a doctor in Utah that had experience with older

> > children.

> > > He had successfully corrected a 9 year old boy who had walked

on

> > his

> > > clubfeet all those years through surgery. We are from Idaho,

so

> > we

> > > drove to Utah for our first appointment in January. At this

> point

> > > our daughter was scared to of any medical person. They

> told

> > us

> > > her case was very severe and she would need 3 months of casting

> > with

> > > cast changes during that time. I asked if they did the Ponseti

> > > casting method and they said yes. We went back in May for a

foot

> > > pressure study in the GATE lab which was very interesting and

> they

> > > told us they would call us with surgery dates for us in two

weeks

> > > (they had decided to divide her surgery into 2 sessions the

> second

> > > one 6 weeks after the first because her case was so involved).

> > Six

> > > weeks went by and we still didn't have a date so I called and

> they

> > > said they wouldn't sit down to schedule any more surgeries

until

> > > August and her doctor was booked out anyways till late

> > fall/winter.

> > > I was so frustrated with this delay as I felt that was too long

> > for

> > > her to wait medically plus I was going through the special

> booties

> > I

> > > had made for her like crazy since she couldn't wear shoes and I

> > knew

> > > it would be even harder in the cold weather. At this point I

> told

> > my

> > > husband maybe this is God's way of telling us we really aren't

in

> > the

> > > right place. He said where else are we going to go as we had

> > already

> > > done the research a year and a half ago before we brought her

> > home?

> > > I said I didn't know but I needed to do this for my own piece

of

> > mind

> > > even though we would probably find out we were still in the

right

> > > place.

> > >

> > > So I began my search for doctors using the Ponseti casting

method

> > and

> > > I e-mailed about 20 doctors that had that qualification telling

> > them

> > > briefly about 's situation and asking if they had

> > experience

> > > with older children with untreated clubfeet. I didn't tell

them

> > > anything about the other medical advice as I wanted their own

> > opinion

> > > without the influence of any other doctor's opinion. Only 3 e-

> > mailed

> > > me back that they had this experience, so I kindly thanked the

> > others

> > > for their time and continued to talk to the other 3 docs. They

> > were

> > > in Missouri, New York, and Arizona. They were all so nice and

> > said

> > > they thought she would respond well with the casting method

> > although

> > > she would probably need some surgery. I was so impressed,

> > especially

> > > with the docs in New York and Missouri. I knew we were going

to

> > > definately switch doctors however I didn't know which one.

> > >

> > > The nurse coordinator in Utah called back and I told him we had

> > done

> > > some more research and we were wondering if our doctor would

> > consider

> > > casting her before surgery to gain more flexibility and

hopefully

> > > minimize the amount of surgery needed. When he got back with

me

> > he

> > > said the doctor told him he didn't feel we'd gain anything from

> > the

> > > casting, but he'd do it if we really wanted to. He then told

me

> > how

> > > they would do it and I immediately questioned him on some

things

> > that

> > > didn't sound quite right for it to truly be the ponseti

method.

> > He

> > > then told me, well you won't find him listed as one of the

> trained

> > > Ponseti doctors, but he has attended some of his clinics. I

was

> > > really mad, as I felt they had lied to me in the beginning over

a

> > > year ago when I asked if he was Ponseti trained. I knew then

> we'd

> > > never go back. However, I didn't cancel anything with them as

I

> > > really didn't have anything else lined up yet.

> > >

> > > At this point I felt we would probably go to Missouri to see

Dr.

> > > Dobbs, but I still had a few more questions. It was a Friday

and

> > I

> > > thought to myself this is crazy here I'm making sure each

doctor

> I

> > > talk to is trained in the Ponseti method why not try to find

the

> > man

> > > himself who developed this method, as I thought it was named

> after

> > > him. I knew nothing about him and so I found his phone number

> and

> > > called him. I thought this is a shot i n the dark, but what

does

> > it

> > > matter at this point. Joyce answered the phone and after just

> > > talking to her a few minutes she said he's right here in his

> > office

> > > I'm sure he'll take your call if he's not busy. Sure enough we

> > > talked for about an hour and I was floored. I couldn't believe

> it

> > as

> > > I truly didn't expect for anyone to answer the call. I asked

him

> > if

> > > he'd do a consultation for us on her case and he said sure. I

> > then

> > > asked if he wanted me to e-mail him some pictures and he said

no

> > that

> > > he would learn more by holding her foot in her hand. At that

> > point I

> > > knew he was the doctor for us. I then asked him if he'd take

her

> > > case on and he said yes. I asked him when he could start

working

> > > with her and I was amazed when he said as soon as you can get

> > here.

> > > He told me he was so sorry we got such bad advice and he felt

she

> > > needed to be treated right away. After talking to Dr. Ponseti,

> > her

> > > nurse coordinator from Utah called to tell us that her doctor

> > wanted

> > > another appointment with us but it wasn't for it was

for

> > my

> > > husband and I. I thought that was strange and asked why and

her

> > > nurse said the doctor wanted to talk to us about the severity

of

> > her

> > > case as he felt even after all the surgeries she would go

through

> > he

> > > felt she would still very likely be an amputation case.

> > >

> > > The rest is history. Four days later on August 16th my son,

> > ,

> > > and I hopped on a plane and came to Iowa City where we stayed

at

> > the

> > > RMH for 3 cast changes before we went back to get my son

started

> > in

> > > kindergarten. I only got to be home with him for 2 days of

> > > kindergarten and then and I drove back here (1531

miles)

> > with

> > > my dad who flew back the next day after we arrived. We decided

> > with

> > > rental car fees it would be more economical to drive. So

> needless

> > to

> > > say that took off a few days of my home time, but we all do

what

> > we

> > > need to do to make it work. We've been out here a total of 6

> > weeks

> > > now and it looks like we won't be able to return home till

> > probably

> > > the middle to later part of October. She'll have surgery at

the

> > end

> > > with both feet having the tenotomy, the right foot having a

> tendon

> > > transfer and also a plantar fascia release. There is a

> > possibility

> > > that she also has some extra bone growth that has developed

from

> > all

> > > the walking she did on her feet before, but I believe they'll

> > handle

> > > that in another surgery later on. They will do x-rays after 2

> > more

> > > cast changes and know more.

> > >

> > > Dr. Ponseti truly is a miracle worker for us. We can never

thank

> > him

> > > enough for all he is doing for her. He makes feel sooo

> > > special everytime she comes in and she loves going to get her

new

> > > casts on. I have some incredible pictures of him with her and

> you

> > > can just see the genuine love for children in his eyes. It is

> > > amazing to see her excitement with the transformation of her

feet

> > > with each cast change. Her goal in life as a toddler is to

wear

> > > sandals. She explains her casts to everyone by telling them

that

> > the

> > > man is making her feet straight for sandals. He has said she

is

> > the

> > > oldest untreated child he has ever treated. We are on her 9th

> > cast

> > > now and have many more to go. You all are incredible, I only

> wish

> > I

> > > had found this group when we first learned about our daughter.

> > Take

> > > care and I plan to stay current with this group now and up on

all

> > > that's happening. I hadn't logged till now since I first got

> > > accepted to the group before we came out.

> > >

> > > Sincerely,

> > > Joyce &

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >