Re: 's setback - CT Scan

April 29, 2006

Thank you for sharing the update, Joyce. I think of you often as an

inspiration. I have a friend who is considering adopting from China and I

secretly want her to choose an older girl with club feet. I know that

blesses you as much as you have blessed her! Please keep us updated with

's story. All the best to you,

Carol and

's setback - CT Scan

As most of you know , (4 years old now, whom we brought home

from China at almost 3 years of age with untreated bilateral

clubfeet) and I returned to Iowa in February due to problems with

's right foot after 5 months of casting (17 cast changes and

ATTT on both feet). Her left foot is perfect now and progressed the

way it should have when we got home after having her casts removed in

January. However, her right foot never got the full range of motion

and suddenly stopped on us within two weeks of coming home. I

immediately called Ponseti when it happened and he had us do an hour

of formal physical therapy everyday for a week to try and improve our

range. After a week of this there was no change. They were going to

have us return to Iowa and then she suddenly started taking her first

steps without her walker so they wanted us to wait another week and

see what would happen. We continued with the hour p/t everyday.

Still no improvement so we headed back to Iowa. They were thinking

they would probably do a few more castings and then a heel cord

lengthening to correct the problem. Ponseti said over the phone that

he wasn't too surprised as her right foot was the most difficult one

anyways.

When we returned to Iowa both Ponseti and Morcuende determined that

she would need a second surgery on that foot, but this time it would

be bone surgery, an osteotomy of the tibia. Ponseti said casting

would not help at this point. I was shocked and disheartened. They

needed us to wait about 4 months to do this surgery for her to regain

the strength in her legs after being casted for 5 months. (When she

got out of her casts she couldn't even stand or crawl.) They also

didn't want us to lose anything we gained with her left foot by doing

surgery too soon and putting her back in a wheelchair since her cast

will be no weight bearing with that type of surgery. The plan was to

return home, continue with physical therapy at home everyday and

check in with our physical therapist once a week. They did not want

us to lose any range of motion in her right foot; the goal was for us

to maintain that range of motion. If at anytime we lose any motion

in that foot we need to return immediately. I asked if they thought

we would gain any motion and they felt we would probably not, due to

the fact that they think she has very little cartilage in that right

foot to work with.

Dr. Ponseti did have Dr. Pirani from Canada see her in October when

we had some problems with her right foot not responding very well to

the casting back in Iowa then. (Some of you probably know that he is

a pediatric surgeon, originally from Africa who was exiled by then-

president Idi Amin in 1972. In 1998 when he returned to his homeland

of Africa for the first time, children with clubfeet touched his life

forever. He then started the Uganda Sustainable Clubfoot Care

Project to help the huge amount of untreated clubfoot children in

that country. He has returned to Africa for one month every year

since then to help these children and educate more doctors in the

Ponseti Method and tackling the challenges of distributing supplies

and accessibility of treatment to clubfeet children there.) Due to

this, he has great experience with treating older untreated clubfoot

children. After observing and manipulating her feet back in

October during a cast change Dr. Pirani said he had never treated a

child with a foot as stiff as her right foot. That was surprising to

all of us, as he's seen so many older untreated children. So as you

can see that foot has been quite the challenge all along.

The big problem after she got her casts off was that we were short 20

degrees on her right foot in dorsiflexion when that problem started.

(Ideally we need to gain 30 degrees overall for things to be really

good.) The good news is that we maintained this range in the first 3

weeks we were home from Iowa. The amazing news is that as of 5 weeks

ago, in just one week's time we had gained 10 degrees of dorsiflexion

in that foot. I couldn't believe it. I had her physical therapist

measure her 3 times during our hour session to make sure this

measurement was not a fluke. We have continued to maintain that gain

which has astounded all of us. Her ankle was immobile before,

however now we actually have gained some movement in the ankle

itself. Due to this, Dr. Ponseti is now thinking that maybe there is

a chance she has more cartilage in that foot than what they thought

after taking x-rays back in February. They felt then that the

cartilage in that foot was so thin that they didn't have anything to

work with. So Wednesday morning I will take her for a CT Scan of her

feet to determine how much cartilage is actually in the joint and

side of her right foot. If she has more cartilage than originally

thought then we may be able to correct the problem without having to

do an osteotomy of the tibia. I am just so thrilled that there is a

chance for an alternative to the first plan of action discussed back

in February. is such a good sport about doing her exercises

and all everyday. Her walking has improved dramatically. We have a

lift in her shoe as Ponseti instructed us to do which has helped to

correct the hyperextending of the knee when she started walking and

we've also been working in the last month on exercises to improve her

upper leg strength in addition to the other exercises which has

helped pull her feet in closer together as she walks. (Before she

was walking with them angled out at about 12 " apart below the knee.)

She is an amazing child!!! We are so blessed to have her! I just

pray we get good results.

Joyce

age 4 years, bcf ATTT 11-18-05

April 29, 2006

THank you for letting us know about 's progress. My family

is praying for her!

Best,

Yuuko and (DOB 8.4.05; P/M 16/7)

>

> Thank you for sharing the update, Joyce. I think of you often as

an inspiration. I have a friend who is considering adopting from

China and I secretly want her to choose an older girl with club

feet. I know that blesses you as much as you have blessed

her! Please keep us updated with 's story. All the best to

you,

>

> Carol and

> 's setback - CT Scan

>

> As most of you know , (4 years old now, whom we brought

home

> from China at almost 3 years of age with untreated bilateral

> clubfeet) and I returned to Iowa in February due to problems

with

> 's right foot after 5 months of casting (17 cast changes

and

> ATTT on both feet). Her left foot is perfect now and

progressed the

> way it should have when we got home after having her casts

removed in

> January. However, her right foot never got the full range of

motion

> and suddenly stopped on us within two weeks of coming home. I

> immediately called Ponseti when it happened and he had us do an

hour

> of formal physical therapy everyday for a week to try and

improve our

> range. After a week of this there was no change. They were

going to

> have us return to Iowa and then she suddenly started taking her

first

> steps without her walker so they wanted us to wait another week

and

> see what would happen. We continued with the hour p/t

everyday.

> Still no improvement so we headed back to Iowa. They were

thinking

> they would probably do a few more castings and then a heel cord

> lengthening to correct the problem. Ponseti said over the phone

that

> he wasn't too surprised as her right foot was the most difficult

one

> anyways.

> When we returned to Iowa both Ponseti and Morcuende determined

that

> she would need a second surgery on that foot, but this time it

would

> be bone surgery, an osteotomy of the tibia. Ponseti said

casting

> would not help at this point. I was shocked and disheartened.

They

> needed us to wait about 4 months to do this surgery for her to

regain

> the strength in her legs after being casted for 5 months. (When

she

> got out of her casts she couldn't even stand or crawl.) They

also

> didn't want us to lose anything we gained with her left foot by

doing

> surgery too soon and putting her back in a wheelchair since her

cast

> will be no weight bearing with that type of surgery. The plan

was to

> return home, continue with physical therapy at home everyday and

> check in with our physical therapist once a week. They did not

want

> us to lose any range of motion in her right foot; the goal was

for us

> to maintain that range of motion. If at anytime we lose any

motion

> in that foot we need to return immediately. I asked if they

thought

> we would gain any motion and they felt we would probably not,

due to

> the fact that they think she has very little cartilage in that

right

> foot to work with.

> Dr. Ponseti did have Dr. Pirani from Canada see her in October

when

> we had some problems with her right foot not responding very

well to

> the casting back in Iowa then. (Some of you probably know that

he is

> a pediatric surgeon, originally from Africa who was exiled by

then-

> president Idi Amin in 1972. In 1998 when he returned to his

homeland

> of Africa for the first time, children with clubfeet touched his

life

> forever. He then started the Uganda Sustainable Clubfoot Care

> Project to help the huge amount of untreated clubfoot children

in

> that country. He has returned to Africa for one month every

year

> since then to help these children and educate more doctors in

the

> Ponseti Method and tackling the challenges of distributing

supplies

> and accessibility of treatment to clubfeet children there.) Due

to

> this, he has great experience with treating older untreated

clubfoot

> children. After observing and manipulating her feet

back in

> October during a cast change Dr. Pirani said he had never

treated a

> child with a foot as stiff as her right foot. That was

surprising to

> all of us, as he's seen so many older untreated children. So as

you

> can see that foot has been quite the challenge all along.

> The big problem after she got her casts off was that we were

short 20

> degrees on her right foot in dorsiflexion when that problem

started.

> (Ideally we need to gain 30 degrees overall for things to be

really

> good.) The good news is that we maintained this range in the

first 3

> weeks we were home from Iowa. The amazing news is that as of 5

weeks

> ago, in just one week's time we had gained 10 degrees of

dorsiflexion

> in that foot. I couldn't believe it. I had her physical

therapist

> measure her 3 times during our hour session to make sure this

> measurement was not a fluke. We have continued to maintain that

gain

> which has astounded all of us. Her ankle was immobile before,

> however now we actually have gained some movement in the ankle

> itself. Due to this, Dr. Ponseti is now thinking that maybe

there is

> a chance she has more cartilage in that foot than what they

thought

> after taking x-rays back in February. They felt then that the

> cartilage in that foot was so thin that they didn't have

anything to

> work with. So Wednesday morning I will take her for a CT Scan

of her

> feet to determine how much cartilage is actually in the joint

and

> side of her right foot. If she has more cartilage than

originally

> thought then we may be able to correct the problem without

having to

> do an osteotomy of the tibia. I am just so thrilled that there

is a

> chance for an alternative to the first plan of action discussed

back

> in February. is such a good sport about doing her

exercises

> and all everyday. Her walking has improved dramatically. We

have a

> lift in her shoe as Ponseti instructed us to do which has helped

to

> correct the hyperextending of the knee when she started walking

and

> we've also been working in the last month on exercises to

improve her

> upper leg strength in addition to the other exercises which has

> helped pull her feet in closer together as she walks. (Before

she

> was walking with them angled out at about 12 " apart below the

knee.)

> She is an amazing child!!! We are so blessed to have her! I

just

> pray we get good results.

>

> Joyce

> age 4 years, bcf ATTT 11-18-05

>

April 29, 2006

Joyce,

Hey! We will keep you and in our prayers. We just loved her there in

Iowa when we were there! Dylan still talks about her! I still need to send you

the pics of her and Dylan together in the wagon! They are SO cute! Let us know

how her CT scan goes. When is she scheduled to have it?

Christee

Mother of...

*Josh~Learning/Speech Delays (9)

**Aspen~ Bilateral Metatarsus Adductus (6)

***Dylan~PTSD/Anxiety (4)

****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus (L)

*P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

Concidering Dobbs bar & braces

---------------------------------

Get amazing travel prices for air and hotel in one click on Yahoo! FareChase

April 29, 2006

Thank you Carol for your kind message. If your friend has any

questions about adopting from China feel free to give her my home e-

mail address cjjidaho@... and I would love to talk to her.

Going to China and bringing home was one of the most amazing

events of our life. It was so wonderful and I'd give anything to go

back again. One tip you might pass on to her if she doesn't get in

touch with me, is to make sure she travels with American Express

traveler's checks if she chooses to take travelers checks. We had

Visa traveler's checks and it was hard to get them cashed in

Guangzhou, which is the final destination city that every adopting

American travels to before coming home with their child. That's

where the American Embassy is located. I have some other tips too

but I won't bore you with all that. Take care and thanks again for

your sweet message.

Sincerely,

Joyce, proud Mommy of

>

> Thank you for sharing the update, Joyce. I think of you often as

an inspiration. I have a friend who is considering adopting from

China and I secretly want her to choose an older girl with club

feet. I know that blesses you as much as you have blessed

her! Please keep us updated with 's story. All the best to

you,

>

> Carol and

> 's setback - CT Scan

>

> As most of you know , (4 years old now, whom we brought

home

> from China at almost 3 years of age with untreated bilateral

> clubfeet) and I returned to Iowa in February due to problems with

> 's right foot after 5 months of casting (17 cast changes

and

> ATTT on both feet). Her left foot is perfect now and progressed

the

> way it should have when we got home after having her casts

removed in

> January. However, her right foot never got the full range of

motion

> and suddenly stopped on us within two weeks of coming home. I

> immediately called Ponseti when it happened and he had us do an

hour

> of formal physical therapy everyday for a week to try and improve

our

> range. After a week of this there was no change. They were

going to

> have us return to Iowa and then she suddenly started taking her

first

> steps without her walker so they wanted us to wait another week

and

> see what would happen. We continued with the hour p/t everyday.

> Still no improvement so we headed back to Iowa. They were

thinking

> they would probably do a few more castings and then a heel cord

> lengthening to correct the problem. Ponseti said over the phone

that

> he wasn't too surprised as her right foot was the most difficult

one

> anyways.

> When we returned to Iowa both Ponseti and Morcuende determined

that

> she would need a second surgery on that foot, but this time it

would

> be bone surgery, an osteotomy of the tibia. Ponseti said casting

> would not help at this point. I was shocked and disheartened.

They

> needed us to wait about 4 months to do this surgery for her to

regain

> the strength in her legs after being casted for 5 months. (When

she

> got out of her casts she couldn't even stand or crawl.) They

also

> didn't want us to lose anything we gained with her left foot by

doing

> surgery too soon and putting her back in a wheelchair since her

cast

> will be no weight bearing with that type of surgery. The plan

was to

> return home, continue with physical therapy at home everyday and

> check in with our physical therapist once a week. They did not

want

> us to lose any range of motion in her right foot; the goal was

for us

> to maintain that range of motion. If at anytime we lose any

motion

> in that foot we need to return immediately. I asked if they

thought

> we would gain any motion and they felt we would probably not, due

to

> the fact that they think she has very little cartilage in that

right

> foot to work with.

> Dr. Ponseti did have Dr. Pirani from Canada see her in October

when

> we had some problems with her right foot not responding very well

to

> the casting back in Iowa then. (Some of you probably know that

he is

> a pediatric surgeon, originally from Africa who was exiled by

then-

> president Idi Amin in 1972. In 1998 when he returned to his

homeland

> of Africa for the first time, children with clubfeet touched his

life

> forever. He then started the Uganda Sustainable Clubfoot Care

> Project to help the huge amount of untreated clubfoot children in

> that country. He has returned to Africa for one month every year

> since then to help these children and educate more doctors in the

> Ponseti Method and tackling the challenges of distributing

supplies

> and accessibility of treatment to clubfeet children there.) Due

to

> this, he has great experience with treating older untreated

clubfoot

> children. After observing and manipulating her feet back

in

> October during a cast change Dr. Pirani said he had never treated

a

> child with a foot as stiff as her right foot. That was

surprising to

> all of us, as he's seen so many older untreated children. So as

you

> can see that foot has been quite the challenge all along.

> The big problem after she got her casts off was that we were

short 20

> degrees on her right foot in dorsiflexion when that problem

started.

> (Ideally we need to gain 30 degrees overall for things to be

really

> good.) The good news is that we maintained this range in the

first 3

> weeks we were home from Iowa. The amazing news is that as of 5

weeks

> ago, in just one week's time we had gained 10 degrees of

dorsiflexion

> in that foot. I couldn't believe it. I had her physical

therapist

> measure her 3 times during our hour session to make sure this

> measurement was not a fluke. We have continued to maintain that

gain

> which has astounded all of us. Her ankle was immobile before,

> however now we actually have gained some movement in the ankle

> itself. Due to this, Dr. Ponseti is now thinking that maybe

there is

> a chance she has more cartilage in that foot than what they

thought

> after taking x-rays back in February. They felt then that the

> cartilage in that foot was so thin that they didn't have anything

to

> work with. So Wednesday morning I will take her for a CT Scan of

her

> feet to determine how much cartilage is actually in the joint and

> side of her right foot. If she has more cartilage than

originally

> thought then we may be able to correct the problem without having

to

> do an osteotomy of the tibia. I am just so thrilled that there

is a

> chance for an alternative to the first plan of action discussed

back

> in February. is such a good sport about doing her

exercises

> and all everyday. Her walking has improved dramatically. We

have a

> lift in her shoe as Ponseti instructed us to do which has helped

to

> correct the hyperextending of the knee when she started walking

and

> we've also been working in the last month on exercises to improve

her

> upper leg strength in addition to the other exercises which has

> helped pull her feet in closer together as she walks. (Before

she

> was walking with them angled out at about 12 " apart below the

knee.)

> She is an amazing child!!! We are so blessed to have her! I

just

> pray we get good results.

>

> Joyce

> age 4 years, bcf ATTT 11-18-05

>

April 29, 2006

Thank you Yuuko for your sweet message. How is , your

husband, and your mother doing? Is your mom in the states now or

back in Japan? You all are such a sweet family. I have to tell you,

reads the " choo-choo " book you all got her quite often.

After you first gave it to her she read it every night for her

bedtime story and would talk about baby . It is still a

favorite book of hers. Thank you again and I'm sorry I haven't been

better about communicating. It just seems like I've been busy and

haven't had the time to really sit down and catch up with my

correspondence from Iowa like I've wanted to. So please forgive me.

You all are very dear to and I. I have to tell you it really

seemed strange to me when you all left the RMH. I enjoyed seeing

you, , and your mother everyday and visiting. I have some

really good pictures of you and which I will make sure to

send out this coming week. (I've had them sitting in a pile with

other pics to send out for over a month now. It's embarrassing how

far behind I am as I know I'm no busier than anyone else.) Is your

home address the same as when we were there? When do you think your

mom will be visiting you again if she isn't there now? Thanks for

your prayers and maybe we'll get to reconnect at the RMH again on a

follow up visit. When is your next visit scheduled for?

Take care,

Joyce and

> >

> > Thank you for sharing the update, Joyce. I think of you often as

> an inspiration. I have a friend who is considering adopting from

> China and I secretly want her to choose an older girl with club

> feet. I know that blesses you as much as you have blessed

> her! Please keep us updated with 's story. All the best to

> you,

> >

> > Carol and

> > 's setback - CT Scan

> >

> > As most of you know , (4 years old now, whom we brought

> home

> > from China at almost 3 years of age with untreated bilateral

> > clubfeet) and I returned to Iowa in February due to problems

> with

> > 's right foot after 5 months of casting (17 cast

changes

> and

> > ATTT on both feet). Her left foot is perfect now and

> progressed the

> > way it should have when we got home after having her casts

> removed in

> > January. However, her right foot never got the full range of

> motion

> > and suddenly stopped on us within two weeks of coming home. I

> > immediately called Ponseti when it happened and he had us do an

> hour

> > of formal physical therapy everyday for a week to try and

> improve our

> > range. After a week of this there was no change. They were

> going to

> > have us return to Iowa and then she suddenly started taking her

> first

> > steps without her walker so they wanted us to wait another week

> and

> > see what would happen. We continued with the hour p/t

> everyday.

> > Still no improvement so we headed back to Iowa. They were

> thinking

> > they would probably do a few more castings and then a heel cord

> > lengthening to correct the problem. Ponseti said over the

phone

> that

> > he wasn't too surprised as her right foot was the most

difficult

> one

> > anyways.

> > When we returned to Iowa both Ponseti and Morcuende determined

> that

> > she would need a second surgery on that foot, but this time it

> would

> > be bone surgery, an osteotomy of the tibia. Ponseti said

> casting

> > would not help at this point. I was shocked and disheartened.

> They

> > needed us to wait about 4 months to do this surgery for her to

> regain

> > the strength in her legs after being casted for 5 months.

(When

> she

> > got out of her casts she couldn't even stand or crawl.) They

> also

> > didn't want us to lose anything we gained with her left foot by

> doing

> > surgery too soon and putting her back in a wheelchair since her

> cast

> > will be no weight bearing with that type of surgery. The plan

> was to

> > return home, continue with physical therapy at home everyday

and

> > check in with our physical therapist once a week. They did not

> want

> > us to lose any range of motion in her right foot; the goal was

> for us

> > to maintain that range of motion. If at anytime we lose any

> motion

> > in that foot we need to return immediately. I asked if they

> thought

> > we would gain any motion and they felt we would probably not,

> due to

> > the fact that they think she has very little cartilage in that

> right

> > foot to work with.

> > Dr. Ponseti did have Dr. Pirani from Canada see her in October

> when

> > we had some problems with her right foot not responding very

> well to

> > the casting back in Iowa then. (Some of you probably know that

> he is

> > a pediatric surgeon, originally from Africa who was exiled by

> then-

> > president Idi Amin in 1972. In 1998 when he returned to his

> homeland

> > of Africa for the first time, children with clubfeet touched

his

> life

> > forever. He then started the Uganda Sustainable Clubfoot Care

> > Project to help the huge amount of untreated clubfoot children

> in

> > that country. He has returned to Africa for one month every

> year

> > since then to help these children and educate more doctors in

> the

> > Ponseti Method and tackling the challenges of distributing

> supplies

> > and accessibility of treatment to clubfeet children there.)

Due

> to

> > this, he has great experience with treating older untreated

> clubfoot

> > children. After observing and manipulating her feet

> back in

> > October during a cast change Dr. Pirani said he had never

> treated a

> > child with a foot as stiff as her right foot. That was

> surprising to

> > all of us, as he's seen so many older untreated children. So

as

> you

> > can see that foot has been quite the challenge all along.

> > The big problem after she got her casts off was that we were

> short 20

> > degrees on her right foot in dorsiflexion when that problem

> started.

> > (Ideally we need to gain 30 degrees overall for things to be

> really

> > good.) The good news is that we maintained this range in the

> first 3

> > weeks we were home from Iowa. The amazing news is that as of 5

> weeks

> > ago, in just one week's time we had gained 10 degrees of

> dorsiflexion

> > in that foot. I couldn't believe it. I had her physical

> therapist

> > measure her 3 times during our hour session to make sure this

> > measurement was not a fluke. We have continued to maintain

that

> gain

> > which has astounded all of us. Her ankle was immobile before,

> > however now we actually have gained some movement in the ankle

> > itself. Due to this, Dr. Ponseti is now thinking that maybe

> there is

> > a chance she has more cartilage in that foot than what they

> thought

> > after taking x-rays back in February. They felt then that the

> > cartilage in that foot was so thin that they didn't have

> anything to

> > work with. So Wednesday morning I will take her for a CT Scan

> of her

> > feet to determine how much cartilage is actually in the joint

> and

> > side of her right foot. If she has more cartilage than

> originally

> > thought then we may be able to correct the problem without

> having to

> > do an osteotomy of the tibia. I am just so thrilled that there

> is a

> > chance for an alternative to the first plan of action discussed

> back

> > in February. is such a good sport about doing her

> exercises

> > and all everyday. Her walking has improved dramatically. We

> have a

> > lift in her shoe as Ponseti instructed us to do which has

helped

> to

> > correct the hyperextending of the knee when she started walking

> and

> > we've also been working in the last month on exercises to

> improve her

> > upper leg strength in addition to the other exercises which has

> > helped pull her feet in closer together as she walks. (Before

> she

> > was walking with them angled out at about 12 " apart below the

> knee.)

> > She is an amazing child!!! We are so blessed to have her! I

> just

> > pray we get good results.

> >

> > Joyce

> > age 4 years, bcf ATTT 11-18-05

> >

April 29, 2006

Hey Christee,

How's little Lilee doing? enjoyed playing with Dylan, too.

I would love to see the pics of the kids. Take care!

Joyce

>

> Joyce,

> Hey! We will keep you and in our prayers. We just loved

her there in Iowa when we were there! Dylan still talks about her! I

still need to send you the pics of her and Dylan together in the

wagon! They are SO cute! Let us know how her CT scan goes. When is

she scheduled to have it?

>

> Christee

> Mother of...

> *Josh~Learning/Speech Delays (9)

> **Aspen~ Bilateral Metatarsus Adductus (6)

> ***Dylan~PTSD/Anxiety (4)

> ****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus (L)

> *P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

> Concidering Dobbs bar & braces

>

> ---------------------------------

> Get amazing travel prices for air and hotel in one click on Yahoo!

FareChase

>

April 30, 2006

Joyce,

I am sorry to hear about this latest set back. You two are such an amazing

duo, that I know that you will get through this together, stronger than

ever. We miss her! Give a big hug from and me.

>

>Reply-To: nosurgery4clubfoot

>To: <nosurgery4clubfoot >

>Subject: Re: 's setback - CT Scan

>Date: Sat, 29 Apr 2006 20:47:57 -0500

>

>Thank you for sharing the update, Joyce. I think of you often as an

>inspiration. I have a friend who is considering adopting from China and I

>secretly want her to choose an older girl with club feet. I know that

> blesses you as much as you have blessed her! Please keep us

>updated with 's story. All the best to you,

>

>Carol and

> 's setback - CT Scan

>

> As most of you know , (4 years old now, whom we brought home

> from China at almost 3 years of age with untreated bilateral

> clubfeet) and I returned to Iowa in February due to problems with

> 's right foot after 5 months of casting (17 cast changes and

> ATTT on both feet). Her left foot is perfect now and progressed the

> way it should have when we got home after having her casts removed in

> January. However, her right foot never got the full range of motion

> and suddenly stopped on us within two weeks of coming home. I

> immediately called Ponseti when it happened and he had us do an hour

> of formal physical therapy everyday for a week to try and improve our

> range. After a week of this there was no change. They were going to

> have us return to Iowa and then she suddenly started taking her first

> steps without her walker so they wanted us to wait another week and

> see what would happen. We continued with the hour p/t everyday.

> Still no improvement so we headed back to Iowa. They were thinking

> they would probably do a few more castings and then a heel cord

> lengthening to correct the problem. Ponseti said over the phone that

> he wasn't too surprised as her right foot was the most difficult one

> anyways.

> When we returned to Iowa both Ponseti and Morcuende determined that

> she would need a second surgery on that foot, but this time it would

> be bone surgery, an osteotomy of the tibia. Ponseti said casting

> would not help at this point. I was shocked and disheartened. They

> needed us to wait about 4 months to do this surgery for her to regain

> the strength in her legs after being casted for 5 months. (When she

> got out of her casts she couldn't even stand or crawl.) They also

> didn't want us to lose anything we gained with her left foot by doing

> surgery too soon and putting her back in a wheelchair since her cast

> will be no weight bearing with that type of surgery. The plan was to

> return home, continue with physical therapy at home everyday and

> check in with our physical therapist once a week. They did not want

> us to lose any range of motion in her right foot; the goal was for us

> to maintain that range of motion. If at anytime we lose any motion

> in that foot we need to return immediately. I asked if they thought

> we would gain any motion and they felt we would probably not, due to

> the fact that they think she has very little cartilage in that right

> foot to work with.

> Dr. Ponseti did have Dr. Pirani from Canada see her in October when

> we had some problems with her right foot not responding very well to

> the casting back in Iowa then. (Some of you probably know that he is

> a pediatric surgeon, originally from Africa who was exiled by then-

> president Idi Amin in 1972. In 1998 when he returned to his homeland

> of Africa for the first time, children with clubfeet touched his life

> forever. He then started the Uganda Sustainable Clubfoot Care

> Project to help the huge amount of untreated clubfoot children in

> that country. He has returned to Africa for one month every year

> since then to help these children and educate more doctors in the

> Ponseti Method and tackling the challenges of distributing supplies

> and accessibility of treatment to clubfeet children there.) Due to

> this, he has great experience with treating older untreated clubfoot

> children. After observing and manipulating her feet back in

> October during a cast change Dr. Pirani said he had never treated a

> child with a foot as stiff as her right foot. That was surprising to

> all of us, as he's seen so many older untreated children. So as you

> can see that foot has been quite the challenge all along.

> The big problem after she got her casts off was that we were short 20

> degrees on her right foot in dorsiflexion when that problem started.

> (Ideally we need to gain 30 degrees overall for things to be really

> good.) The good news is that we maintained this range in the first 3

> weeks we were home from Iowa. The amazing news is that as of 5 weeks

> ago, in just one week's time we had gained 10 degrees of dorsiflexion

> in that foot. I couldn't believe it. I had her physical therapist

> measure her 3 times during our hour session to make sure this

> measurement was not a fluke. We have continued to maintain that gain

> which has astounded all of us. Her ankle was immobile before,

> however now we actually have gained some movement in the ankle

> itself. Due to this, Dr. Ponseti is now thinking that maybe there is

> a chance she has more cartilage in that foot than what they thought

> after taking x-rays back in February. They felt then that the

> cartilage in that foot was so thin that they didn't have anything to

> work with. So Wednesday morning I will take her for a CT Scan of her

> feet to determine how much cartilage is actually in the joint and

> side of her right foot. If she has more cartilage than originally

> thought then we may be able to correct the problem without having to

> do an osteotomy of the tibia. I am just so thrilled that there is a

> chance for an alternative to the first plan of action discussed back

> in February. is such a good sport about doing her exercises

> and all everyday. Her walking has improved dramatically. We have a

> lift in her shoe as Ponseti instructed us to do which has helped to

> correct the hyperextending of the knee when she started walking and

> we've also been working in the last month on exercises to improve her

> upper leg strength in addition to the other exercises which has

> helped pull her feet in closer together as she walks. (Before she

> was walking with them angled out at about 12 " apart below the knee.)

> She is an amazing child!!! We are so blessed to have her! I just

> pray we get good results.

>

> Joyce

> age 4 years, bcf ATTT 11-18-05

>

April 30, 2006

Hi Joyce,

What an amazing little girl you have Is she enjoying wearing her

sandals?! That was one of the cutest things I ever heard. If you all

remember, one of 's greatest wishes was that she could wear

sandals

Good to hear that there is hope that the osteotomy won't have to be

done. But even if it comes to that, you have so lessened the severity

of any surgery needed for your little girl and I know that you are

thrilled about that!

We are patients of Dr. Pirani and just love him, isn't he just an

amazing dr/man?!

Glad to hear that the PT is going so well and we are praying for

continued sucess/results for ! Post some pics of her to the

CFpics site if you have a min, we would LOVE to see her! And thanks

for the update!

Big hugs,

& Grace 21mos

urcf FAB 13hrs

>

> As most of you know , (4 years old now, whom we brought home

> from China at almost 3 years of age with untreated bilateral

> clubfeet) and I returned to Iowa in February due to problems with

> 's right foot after 5 months of casting (17 cast changes

and

> ATTT on both feet). Her left foot is perfect now and progressed

the

> way it should have when we got home after having her casts removed

in

> January. However, her right foot never got the full range of

motion

> and suddenly stopped on us within two weeks of coming home. I

> immediately called Ponseti when it happened and he had us do an

hour

> of formal physical therapy everyday for a week to try and improve

our

> range. After a week of this there was no change. They were going

to

> have us return to Iowa and then she suddenly started taking her

first

> steps without her walker so they wanted us to wait another week and

> see what would happen. We continued with the hour p/t everyday.

> Still no improvement so we headed back to Iowa. They were thinking

> they would probably do a few more castings and then a heel cord

> lengthening to correct the problem. Ponseti said over the phone

that

> he wasn't too surprised as her right foot was the most difficult

one

> anyways.

> When we returned to Iowa both Ponseti and Morcuende determined that

> she would need a second surgery on that foot, but this time it

would

> be bone surgery, an osteotomy of the tibia. Ponseti said casting

> would not help at this point. I was shocked and disheartened.

They

> needed us to wait about 4 months to do this surgery for her to

regain

> the strength in her legs after being casted for 5 months. (When

she

> got out of her casts she couldn't even stand or crawl.) They also

> didn't want us to lose anything we gained with her left foot by

doing

> surgery too soon and putting her back in a wheelchair since her

cast

> will be no weight bearing with that type of surgery. The plan was

to

> return home, continue with physical therapy at home everyday and

> check in with our physical therapist once a week. They did not

want

> us to lose any range of motion in her right foot; the goal was for

us

> to maintain that range of motion. If at anytime we lose any motion

> in that foot we need to return immediately. I asked if they

thought

> we would gain any motion and they felt we would probably not, due

to

> the fact that they think she has very little cartilage in that

right

> foot to work with.

> Dr. Ponseti did have Dr. Pirani from Canada see her in October when

> we had some problems with her right foot not responding very well

to

> the casting back in Iowa then. (Some of you probably know that he

is

> a pediatric surgeon, originally from Africa who was exiled by then-

> president Idi Amin in 1972. In 1998 when he returned to his

homeland

> of Africa for the first time, children with clubfeet touched his

life

> forever. He then started the Uganda Sustainable Clubfoot Care

> Project to help the huge amount of untreated clubfoot children in

> that country. He has returned to Africa for one month every year

> since then to help these children and educate more doctors in the

> Ponseti Method and tackling the challenges of distributing supplies

> and accessibility of treatment to clubfeet children there.) Due to

> this, he has great experience with treating older untreated

clubfoot

> children. After observing and manipulating her feet back

in

> October during a cast change Dr. Pirani said he had never treated a

> child with a foot as stiff as her right foot. That was surprising

to

> all of us, as he's seen so many older untreated children. So as

you

> can see that foot has been quite the challenge all along.

> The big problem after she got her casts off was that we were short

20

> degrees on her right foot in dorsiflexion when that problem

started.

> (Ideally we need to gain 30 degrees overall for things to be really

> good.) The good news is that we maintained this range in the first

3

> weeks we were home from Iowa. The amazing news is that as of 5

weeks

> ago, in just one week's time we had gained 10 degrees of

dorsiflexion

> in that foot. I couldn't believe it. I had her physical therapist

> measure her 3 times during our hour session to make sure this

> measurement was not a fluke. We have continued to maintain that

gain

> which has astounded all of us. Her ankle was immobile before,

> however now we actually have gained some movement in the ankle

> itself. Due to this, Dr. Ponseti is now thinking that maybe there

is

> a chance she has more cartilage in that foot than what they thought

> after taking x-rays back in February. They felt then that the

> cartilage in that foot was so thin that they didn't have anything

to

> work with. So Wednesday morning I will take her for a CT Scan of

her

> feet to determine how much cartilage is actually in the joint and

> side of her right foot. If she has more cartilage than originally

> thought then we may be able to correct the problem without having

to

> do an osteotomy of the tibia. I am just so thrilled that there is

a

> chance for an alternative to the first plan of action discussed

back

> in February. is such a good sport about doing her

exercises

> and all everyday. Her walking has improved dramatically. We have

a

> lift in her shoe as Ponseti instructed us to do which has helped to

> correct the hyperextending of the knee when she started walking and

> we've also been working in the last month on exercises to improve

her

> upper leg strength in addition to the other exercises which has

> helped pull her feet in closer together as she walks. (Before she

> was walking with them angled out at about 12 " apart below the

knee.)

> She is an amazing child!!! We are so blessed to have her! I just

> pray we get good results.

>

> Joyce

> age 4 years, bcf ATTT 11-18-05

>

April 30, 2006

Thanks for your sweet message. You are right, is a

little trooper. How is little doing? You'll have to give her

a big hug from us. What are you up to these days and how is your mom

doing? I miss you guys. Take care and maybe one of our visits to

Iowa will overlap as I have a feeling and I will be out there

for a little while when we do return. Take care and tell your mom we

said, " Hi! " I'll never forget that yummy dinner you fixed for us.

and I really enjoyed coming over and just visiting. It was

so funny to see 's reaction to a room with a couch and all.

It was like she thought she was in a house again. See you later.

Love,

Joyce &

>

> Joyce,

> I am sorry to hear about this latest set back. You two are such an

amazing

> duo, that I know that you will get through this together, stronger

than

> ever. We miss her! Give a big hug from and me.

>

> >

> >Reply-To: nosurgery4clubfoot

> >To: <nosurgery4clubfoot >

> >Subject: Re: 's setback - CT Scan

> >Date: Sat, 29 Apr 2006 20:47:57 -0500

> >

> >Thank you for sharing the update, Joyce. I think of you often as

an

> >inspiration. I have a friend who is considering adopting from

China and I

> >secretly want her to choose an older girl with club feet. I know

that

> > blesses you as much as you have blessed her! Please keep

us

> >updated with 's story. All the best to you,

> >

> >Carol and

> > 's setback - CT Scan

> >

> > As most of you know , (4 years old now, whom we brought

home

> > from China at almost 3 years of age with untreated bilateral

> > clubfeet) and I returned to Iowa in February due to problems

with

> > 's right foot after 5 months of casting (17 cast

changes and

> > ATTT on both feet). Her left foot is perfect now and

progressed the

> > way it should have when we got home after having her casts

removed in

> > January. However, her right foot never got the full range of

motion

> > and suddenly stopped on us within two weeks of coming home. I

> > immediately called Ponseti when it happened and he had us do an

hour

> > of formal physical therapy everyday for a week to try and

improve our

> > range. After a week of this there was no change. They were

going to

> > have us return to Iowa and then she suddenly started taking her

first

> > steps without her walker so they wanted us to wait another week

and

> > see what would happen. We continued with the hour p/t everyday.

> > Still no improvement so we headed back to Iowa. They were

thinking

> > they would probably do a few more castings and then a heel cord

> > lengthening to correct the problem. Ponseti said over the

phone that

> > he wasn't too surprised as her right foot was the most

difficult one

> > anyways.

> > When we returned to Iowa both Ponseti and Morcuende determined

that

> > she would need a second surgery on that foot, but this time it

would

> > be bone surgery, an osteotomy of the tibia. Ponseti said

casting

> > would not help at this point. I was shocked and disheartened.

They

> > needed us to wait about 4 months to do this surgery for her to

regain

> > the strength in her legs after being casted for 5 months.

(When she

> > got out of her casts she couldn't even stand or crawl.) They

also

> > didn't want us to lose anything we gained with her left foot by

doing

> > surgery too soon and putting her back in a wheelchair since her

cast

> > will be no weight bearing with that type of surgery. The plan

was to

> > return home, continue with physical therapy at home everyday and

> > check in with our physical therapist once a week. They did not

want

> > us to lose any range of motion in her right foot; the goal was

for us

> > to maintain that range of motion. If at anytime we lose any

motion

> > in that foot we need to return immediately. I asked if they

thought

> > we would gain any motion and they felt we would probably not,

due to

> > the fact that they think she has very little cartilage in that

right

> > foot to work with.

> > Dr. Ponseti did have Dr. Pirani from Canada see her in October

when

> > we had some problems with her right foot not responding very

well to

> > the casting back in Iowa then. (Some of you probably know that

he is

> > a pediatric surgeon, originally from Africa who was exiled by

then-

> > president Idi Amin in 1972. In 1998 when he returned to his

homeland

> > of Africa for the first time, children with clubfeet touched

his life

> > forever. He then started the Uganda Sustainable Clubfoot Care

> > Project to help the huge amount of untreated clubfoot children

in

> > that country. He has returned to Africa for one month every

year

> > since then to help these children and educate more doctors in

the

> > Ponseti Method and tackling the challenges of distributing

supplies

> > and accessibility of treatment to clubfeet children there.)

Due to

> > this, he has great experience with treating older untreated

clubfoot

> > children. After observing and manipulating her feet

back in

> > October during a cast change Dr. Pirani said he had never

treated a

> > child with a foot as stiff as her right foot. That was

surprising to

> > all of us, as he's seen so many older untreated children. So

as you

> > can see that foot has been quite the challenge all along.

> > The big problem after she got her casts off was that we were

short 20

> > degrees on her right foot in dorsiflexion when that problem

started.

> > (Ideally we need to gain 30 degrees overall for things to be

really

> > good.) The good news is that we maintained this range in the

first 3

> > weeks we were home from Iowa. The amazing news is that as of 5

weeks

> > ago, in just one week's time we had gained 10 degrees of

dorsiflexion

> > in that foot. I couldn't believe it. I had her physical

therapist

> > measure her 3 times during our hour session to make sure this

> > measurement was not a fluke. We have continued to maintain

that gain

> > which has astounded all of us. Her ankle was immobile before,

> > however now we actually have gained some movement in the ankle

> > itself. Due to this, Dr. Ponseti is now thinking that maybe

there is

> > a chance she has more cartilage in that foot than what they

thought

> > after taking x-rays back in February. They felt then that the

> > cartilage in that foot was so thin that they didn't have

anything to

> > work with. So Wednesday morning I will take her for a CT Scan

of her

> > feet to determine how much cartilage is actually in the joint

and

> > side of her right foot. If she has more cartilage than

originally

> > thought then we may be able to correct the problem without

having to

> > do an osteotomy of the tibia. I am just so thrilled that there

is a

> > chance for an alternative to the first plan of action discussed

back

> > in February. is such a good sport about doing her

exercises

> > and all everyday. Her walking has improved dramatically. We

have a

> > lift in her shoe as Ponseti instructed us to do which has

helped to

> > correct the hyperextending of the knee when she started walking

and

> > we've also been working in the last month on exercises to

improve her

> > upper leg strength in addition to the other exercises which has

> > helped pull her feet in closer together as she walks. (Before

she

> > was walking with them angled out at about 12 " apart below the

knee.)

> > She is an amazing child!!! We are so blessed to have her! I

just

> > pray we get good results.

> >

> > Joyce

> > age 4 years, bcf ATTT 11-18-05

> >

April 30, 2006

You are right , is an amazing little girl. Thanks

and sorry to brag, but sometimes I can't help it as I feel so blessed

to be her mommy. does love wearing her sandals and as a

matter of fact that's what I brought with me to the hospital in

January for her to wear after they took her casts off from the ATTT

surgery. I wish I would have had a video camera with me to capture

her pure joy as she went all over the clinic in her little wheelchair

with her sweet little sandals on. I have a great picture of Dr.

Morcuende helping her put them on after we cleaned up her legs and

put lotion on her. She was soooo proud!!! She confidently wore

those sandals in the middle of winter and even slept with those and

her light up tennis shoes for every nap and nighttime when we were at

the RMH. (We stayed an extra week doing physical therapy there and

they taught me what to do at home. Originally the plans were to fit

her for AFO's to wear at night time after those casts were removed

and then they were going to put her in short leg casts that week

until her AFO's were ready and then we'd return home. However, when

they took her casts off they decided she didn't need the AFO's

because her feet looked so good, so we stayed and did p/t everyday

since she didn't have to be recasted. It was so cute to see her sound

asleep with her little shoes. She just loved taking them off and

putting them back on repeatedly for everyone. The only other shoes

she wore prior to coming out to see Dr. Ponseti because her feet were

so severe were little booties. I had a lady make special booties for

her in several pretty colors and with pretty decorations on them so

she'd feel good in them and in China she just wore like baby socks.

She wants a pair of Dora shoes so bad, but she has to wear wide width

and we can't find them like that. If anyone sees a wide width Dora

shoe please let me know. We probably need an 8W size. With the

problem she's having with that foot we have to have a 3/8 " lift in

her right shoe, otherwise walking is very difficult for her and she

hyperextends her knee so wearing sandals is a little harder these

days. I don't know what I'm going to do for summer, as she loves the

water and she can't walk barefoot because of the hyperextending and

all, plus she will tell you it hurts to walk like that. I'm keeping

my eyes open for water shoes with a natural heel built in them

because I don't know how a lift will stay in with the shoes getting

wet and all.

That is great that you all are patients of Dr. Pirani's. Do you live

in Canada as I thought that's where he lives? Do you have a current

address and e-mail for him as I'd like to drop him a line. He is an

amazing man.

In regard to the pics, I would love to add some but I must be doing

something wrong because I've tried with the directions sent to me and

I couldn't get it to work about a month ago. It must be me. Can you

give me some pointers on how to do it? I really want to share my

pics with all of you.

Thanks again for your sweet message. I hope to meet you and Grace

one day. Give your daughter a hug from and I.

Love,

Joyce

> >

> > As most of you know , (4 years old now, whom we brought

home

> > from China at almost 3 years of age with untreated bilateral

> > clubfeet) and I returned to Iowa in February due to problems with

> > 's right foot after 5 months of casting (17 cast changes

> and

> > ATTT on both feet). Her left foot is perfect now and progressed

> the

> > way it should have when we got home after having her casts

removed

> in

> > January. However, her right foot never got the full range of

> motion

> > and suddenly stopped on us within two weeks of coming home. I

> > immediately called Ponseti when it happened and he had us do an

> hour

> > of formal physical therapy everyday for a week to try and improve

> our

> > range. After a week of this there was no change. They were

going

> to

> > have us return to Iowa and then she suddenly started taking her

> first

> > steps without her walker so they wanted us to wait another week

and

> > see what would happen. We continued with the hour p/t everyday.

> > Still no improvement so we headed back to Iowa. They were

thinking

> > they would probably do a few more castings and then a heel cord

> > lengthening to correct the problem. Ponseti said over the phone

> that

> > he wasn't too surprised as her right foot was the most difficult

> one

> > anyways.

> > When we returned to Iowa both Ponseti and Morcuende determined

that

> > she would need a second surgery on that foot, but this time it

> would

> > be bone surgery, an osteotomy of the tibia. Ponseti said casting

> > would not help at this point. I was shocked and disheartened.

> They

> > needed us to wait about 4 months to do this surgery for her to

> regain

> > the strength in her legs after being casted for 5 months. (When

> she

> > got out of her casts she couldn't even stand or crawl.) They

also

> > didn't want us to lose anything we gained with her left foot by

> doing

> > surgery too soon and putting her back in a wheelchair since her

> cast

> > will be no weight bearing with that type of surgery. The plan

was

> to

> > return home, continue with physical therapy at home everyday and

> > check in with our physical therapist once a week. They did not

> want

> > us to lose any range of motion in her right foot; the goal was

for

> us

> > to maintain that range of motion. If at anytime we lose any

motion

> > in that foot we need to return immediately. I asked if they

> thought

> > we would gain any motion and they felt we would probably not, due

> to

> > the fact that they think she has very little cartilage in that

> right

> > foot to work with.

> > Dr. Ponseti did have Dr. Pirani from Canada see her in October

when

> > we had some problems with her right foot not responding very well

> to

> > the casting back in Iowa then. (Some of you probably know that

he

> is

> > a pediatric surgeon, originally from Africa who was exiled by

then-

> > president Idi Amin in 1972. In 1998 when he returned to his

> homeland

> > of Africa for the first time, children with clubfeet touched his

> life

> > forever. He then started the Uganda Sustainable Clubfoot Care

> > Project to help the huge amount of untreated clubfoot children in

> > that country. He has returned to Africa for one month every year

> > since then to help these children and educate more doctors in the

> > Ponseti Method and tackling the challenges of distributing

supplies

> > and accessibility of treatment to clubfeet children there.) Due

to

> > this, he has great experience with treating older untreated

> clubfoot

> > children. After observing and manipulating her feet back

> in

> > October during a cast change Dr. Pirani said he had never treated

a

> > child with a foot as stiff as her right foot. That was

surprising

> to

> > all of us, as he's seen so many older untreated children. So as

> you

> > can see that foot has been quite the challenge all along.

> > The big problem after she got her casts off was that we were

short

> 20

> > degrees on her right foot in dorsiflexion when that problem

> started.

> > (Ideally we need to gain 30 degrees overall for things to be

really

> > good.) The good news is that we maintained this range in the

first

> 3

> > weeks we were home from Iowa. The amazing news is that as of 5

> weeks

> > ago, in just one week's time we had gained 10 degrees of

> dorsiflexion

> > in that foot. I couldn't believe it. I had her physical

therapist

> > measure her 3 times during our hour session to make sure this

> > measurement was not a fluke. We have continued to maintain that

> gain

> > which has astounded all of us. Her ankle was immobile before,

> > however now we actually have gained some movement in the ankle

> > itself. Due to this, Dr. Ponseti is now thinking that maybe

there

> is

> > a chance she has more cartilage in that foot than what they

thought

> > after taking x-rays back in February. They felt then that the

> > cartilage in that foot was so thin that they didn't have anything

> to

> > work with. So Wednesday morning I will take her for a CT Scan of

> her

> > feet to determine how much cartilage is actually in the joint and

> > side of her right foot. If she has more cartilage than

originally

> > thought then we may be able to correct the problem without having

> to

> > do an osteotomy of the tibia. I am just so thrilled that there

is

> a

> > chance for an alternative to the first plan of action discussed

> back

> > in February. is such a good sport about doing her

> exercises

> > and all everyday. Her walking has improved dramatically. We

have

> a

> > lift in her shoe as Ponseti instructed us to do which has helped

to

> > correct the hyperextending of the knee when she started walking

and

> > we've also been working in the last month on exercises to improve

> her

> > upper leg strength in addition to the other exercises which has

> > helped pull her feet in closer together as she walks. (Before

she

> > was walking with them angled out at about 12 " apart below the

> knee.)

> > She is an amazing child!!! We are so blessed to have her! I

just

> > pray we get good results.

> >

> > Joyce

> > age 4 years, bcf ATTT 11-18-05

> >

>

April 30, 2006

Joyce,

When is s CT scan?

Christee

Mother of...

*Josh~Learning/Speech Delays (9)

**Aspen~ Bilateral Metatarsus Adductus (6)

***Dylan~PTSD/Anxiety (4)

****Lilee~A-Typical UCF w/Plantaris ® & Metatarsus Adductus (L)

*P/M Brace 16-18/24.Struggling w/pressure sores (8 months)

Concidering Dobbs bar & braces

---------------------------------

Yahoo! Mail goes everywhere you do. Get it on your phone.

May 1, 2006

Joyce-

Thanks for the update. Seeing all the sandals in the windows of shoe

stores makes me think of every time. She and your family

will be in our thoughts and prayers!

Kathleen

mom to david bcf 20 mo old fab 12/7

and *daughter edd 9/4/06

>

> As most of you know , (4 years old now, whom we brought

home

> from China at almost 3 years of age with untreated bilateral

> clubfeet) and I returned to Iowa in February due to problems with

> 's right foot after 5 months of casting (17 cast changes

and

> ATTT on both feet). Her left foot is perfect now and progressed

the

> way it should have when we got home after having her casts removed

in

> January. However, her right foot never got the full range of

motion

> and suddenly stopped on us within two weeks of coming home. I

> immediately called Ponseti when it happened and he had us do an

hour

> of formal physical therapy everyday for a week to try and improve

our

> range. After a week of this there was no change. They were going

to

> have us return to Iowa and then she suddenly started taking her

first

> steps without her walker so they wanted us to wait another week

and

> see what would happen. We continued with the hour p/t everyday.

> Still no improvement so we headed back to Iowa. They were

thinking

> they would probably do a few more castings and then a heel cord

> lengthening to correct the problem. Ponseti said over the phone

that

> he wasn't too surprised as her right foot was the most difficult

one

> anyways.

> When we returned to Iowa both Ponseti and Morcuende determined

that

> she would need a second surgery on that foot, but this time it

would

> be bone surgery, an osteotomy of the tibia. Ponseti said casting

> would not help at this point. I was shocked and disheartened.

They

> needed us to wait about 4 months to do this surgery for her to

regain

> the strength in her legs after being casted for 5 months. (When

she

> got out of her casts she couldn't even stand or crawl.) They also

> didn't want us to lose anything we gained with her left foot by

doing

> surgery too soon and putting her back in a wheelchair since her

cast

> will be no weight bearing with that type of surgery. The plan was

to

> return home, continue with physical therapy at home everyday and

> check in with our physical therapist once a week. They did not

want

> us to lose any range of motion in her right foot; the goal was for

us

> to maintain that range of motion. If at anytime we lose any

motion

> in that foot we need to return immediately. I asked if they

thought

> we would gain any motion and they felt we would probably not, due

to

> the fact that they think she has very little cartilage in that

right

> foot to work with.

> Dr. Ponseti did have Dr. Pirani from Canada see her in October

when

> we had some problems with her right foot not responding very well

to

> the casting back in Iowa then. (Some of you probably know that he

is

> a pediatric surgeon, originally from Africa who was exiled by then-

> president Idi Amin in 1972. In 1998 when he returned to his

homeland

> of Africa for the first time, children with clubfeet touched his

life

> forever. He then started the Uganda Sustainable Clubfoot Care

> Project to help the huge amount of untreated clubfoot children in

> that country. He has returned to Africa for one month every year

> since then to help these children and educate more doctors in the

> Ponseti Method and tackling the challenges of distributing

supplies

> and accessibility of treatment to clubfeet children there.) Due

to

> this, he has great experience with treating older untreated

clubfoot

> children. After observing and manipulating her feet back

in

> October during a cast change Dr. Pirani said he had never treated

a

> child with a foot as stiff as her right foot. That was surprising

to

> all of us, as he's seen so many older untreated children. So as

you

> can see that foot has been quite the challenge all along.

> The big problem after she got her casts off was that we were short

20

> degrees on her right foot in dorsiflexion when that problem

started.

> (Ideally we need to gain 30 degrees overall for things to be

really

> good.) The good news is that we maintained this range in the

first 3

> weeks we were home from Iowa. The amazing news is that as of 5

weeks

> ago, in just one week's time we had gained 10 degrees of

dorsiflexion

> in that foot. I couldn't believe it. I had her physical

therapist

> measure her 3 times during our hour session to make sure this

> measurement was not a fluke. We have continued to maintain that

gain

> which has astounded all of us. Her ankle was immobile before,

> however now we actually have gained some movement in the ankle

> itself. Due to this, Dr. Ponseti is now thinking that maybe there

is

> a chance she has more cartilage in that foot than what they

thought

> after taking x-rays back in February. They felt then that the

> cartilage in that foot was so thin that they didn't have anything

to

> work with. So Wednesday morning I will take her for a CT Scan of

her

> feet to determine how much cartilage is actually in the joint and

> side of her right foot. If she has more cartilage than originally

> thought then we may be able to correct the problem without having

to

> do an osteotomy of the tibia. I am just so thrilled that there is

a

> chance for an alternative to the first plan of action discussed

back

> in February. is such a good sport about doing her

exercises

> and all everyday. Her walking has improved dramatically. We have

a

> lift in her shoe as Ponseti instructed us to do which has helped

to

> correct the hyperextending of the knee when she started walking

and

> we've also been working in the last month on exercises to improve

her

> upper leg strength in addition to the other exercises which has

> helped pull her feet in closer together as she walks. (Before she

> was walking with them angled out at about 12 " apart below the

knee.)

> She is an amazing child!!! We are so blessed to have her! I just

> pray we get good results.

>

> Joyce

> age 4 years, bcf ATTT 11-18-05

>

May 1, 2006

Joyce,

Thanks for taking the time to update us on 's clubfoot

journey. I pray that the CT scan will have encouraging results. Per

our last conversation- you get her out in the pool and swim, swim,

swim!

Please keep us posted as you're able (when you're not swimming hahaha)!

Hugs to you and your sweet, brave little girl!

& (3-16-00, left clubfoot)

May 1, 2006

You are so sweet Kathleen. Thanks for your kindness.

Joyce

> >

> > As most of you know , (4 years old now, whom we brought

> home

> > from China at almost 3 years of age with untreated bilateral

> > clubfeet) and I returned to Iowa in February due to problems with

> > 's right foot after 5 months of casting (17 cast changes

> and

> > ATTT on both feet). Her left foot is perfect now and progressed

> the

> > way it should have when we got home after having her casts

removed

> in

> > January. However, her right foot never got the full range of

> motion

> > and suddenly stopped on us within two weeks of coming home. I

> > immediately called Ponseti when it happened and he had us do an

> hour

> > of formal physical therapy everyday for a week to try and improve

> our

> > range. After a week of this there was no change. They were

going

> to

> > have us return to Iowa and then she suddenly started taking her

> first

> > steps without her walker so they wanted us to wait another week

> and

> > see what would happen. We continued with the hour p/t everyday.

> > Still no improvement so we headed back to Iowa. They were

> thinking

> > they would probably do a few more castings and then a heel cord

> > lengthening to correct the problem. Ponseti said over the phone

> that

> > he wasn't too surprised as her right foot was the most difficult

> one

> > anyways.

> > When we returned to Iowa both Ponseti and Morcuende determined

> that

> > she would need a second surgery on that foot, but this time it

> would

> > be bone surgery, an osteotomy of the tibia. Ponseti said casting

> > would not help at this point. I was shocked and disheartened.

> They

> > needed us to wait about 4 months to do this surgery for her to

> regain

> > the strength in her legs after being casted for 5 months. (When

> she

> > got out of her casts she couldn't even stand or crawl.) They

also

> > didn't want us to lose anything we gained with her left foot by

> doing

> > surgery too soon and putting her back in a wheelchair since her

> cast

> > will be no weight bearing with that type of surgery. The plan

was

> to

> > return home, continue with physical therapy at home everyday and

> > check in with our physical therapist once a week. They did not

> want

> > us to lose any range of motion in her right foot; the goal was

for

> us

> > to maintain that range of motion. If at anytime we lose any

> motion

> > in that foot we need to return immediately. I asked if they

> thought

> > we would gain any motion and they felt we would probably not, due

> to

> > the fact that they think she has very little cartilage in that

> right

> > foot to work with.

> > Dr. Ponseti did have Dr. Pirani from Canada see her in October

> when

> > we had some problems with her right foot not responding very well

> to

> > the casting back in Iowa then. (Some of you probably know that

he

> is

> > a pediatric surgeon, originally from Africa who was exiled by

then-

> > president Idi Amin in 1972. In 1998 when he returned to his

> homeland

> > of Africa for the first time, children with clubfeet touched his

> life

> > forever. He then started the Uganda Sustainable Clubfoot Care

> > Project to help the huge amount of untreated clubfoot children in

> > that country. He has returned to Africa for one month every year

> > since then to help these children and educate more doctors in the

> > Ponseti Method and tackling the challenges of distributing

> supplies

> > and accessibility of treatment to clubfeet children there.) Due

> to

> > this, he has great experience with treating older untreated

> clubfoot

> > children. After observing and manipulating her feet back

> in

> > October during a cast change Dr. Pirani said he had never treated

> a

> > child with a foot as stiff as her right foot. That was

surprising

> to

> > all of us, as he's seen so many older untreated children. So as

> you

> > can see that foot has been quite the challenge all along.

> > The big problem after she got her casts off was that we were

short

> 20

> > degrees on her right foot in dorsiflexion when that problem

> started.

> > (Ideally we need to gain 30 degrees overall for things to be

> really

> > good.) The good news is that we maintained this range in the

> first 3

> > weeks we were home from Iowa. The amazing news is that as of 5

> weeks

> > ago, in just one week's time we had gained 10 degrees of

> dorsiflexion

> > in that foot. I couldn't believe it. I had her physical

> therapist

> > measure her 3 times during our hour session to make sure this

> > measurement was not a fluke. We have continued to maintain that

> gain

> > which has astounded all of us. Her ankle was immobile before,

> > however now we actually have gained some movement in the ankle

> > itself. Due to this, Dr. Ponseti is now thinking that maybe

there

> is

> > a chance she has more cartilage in that foot than what they

> thought

> > after taking x-rays back in February. They felt then that the

> > cartilage in that foot was so thin that they didn't have anything

> to

> > work with. So Wednesday morning I will take her for a CT Scan of

> her

> > feet to determine how much cartilage is actually in the joint and

> > side of her right foot. If she has more cartilage than

originally

> > thought then we may be able to correct the problem without having

> to

> > do an osteotomy of the tibia. I am just so thrilled that there

is

> a

> > chance for an alternative to the first plan of action discussed

> back

> > in February. is such a good sport about doing her

> exercises

> > and all everyday. Her walking has improved dramatically. We

have

> a

> > lift in her shoe as Ponseti instructed us to do which has helped

> to

> > correct the hyperextending of the knee when she started walking

> and

> > we've also been working in the last month on exercises to improve

> her

> > upper leg strength in addition to the other exercises which has

> > helped pull her feet in closer together as she walks. (Before

she

> > was walking with them angled out at about 12 " apart below the

> knee.)

> > She is an amazing child!!! We are so blessed to have her! I

just

> > pray we get good results.

> >

> > Joyce

> > age 4 years, bcf ATTT 11-18-05

> >

>

May 2, 2006

Hi ,

You are so dear. Thanks for the sweet message and yes we're going to

swim our little hearts out. She's already asking when we can get the

pool out. I'm hoping to get my pics into an album for people this next

week so you all can see her progress. Hey, did ever end up with

another little squishy toy again? Did all of that stuff wash out? You

have such a darling little girl. Thanks for all you've done for us.

I feel so fortunate for this journey I've gotten to go on with

to correct her feet because I've met wonderful friends like you and so

many of the others I've been fortunate to connect with. Take care and

give a big hug for us.

Hugs,

Joyce and

>

> Joyce,

> Thanks for taking the time to update us on 's clubfoot

> journey. I pray that the CT scan will have encouraging results. Per

> our last conversation- you get her out in the pool and swim, swim,

> swim!

> Please keep us posted as you're able (when you're not swimming

hahaha)!

> Hugs to you and your sweet, brave little girl!

> & (3-16-00, left clubfoot)

>

May 2, 2006

Oh Joyce!

I am so excited to hear about the possibility that you may avoid the

osteotomy!! I know how very worried you were about that procedure. How

exciting to see so much improvement in PT when nobody thought you would gain

any! You know that prayers are answered and we certainly have been praying

for !

Livie has been questioning me a lot lately why she was the only one born

with a twisted foot in our family. I don't have any answers for her, but

point out to her that other little girls and boys were also born with

twisted feet. She doesn't really remember meeting any others at the

clubfoot symposium two years ago, but she does remember meeting . So

's name comes up here frequently!

Please keep us updated on what the CT Scan shows!

Jen & Livie