Re: I must confess to being a bad mother - or not LOL

January 14, 2005

Hi Angel,

Don't beat yourself up for trusting Dr. Mosca, you thought you were

doing the right thing at the time. Now you have to do what you think

is the right thing at this time. I don't think anyone has ever

regretted going to Dr. Ponsetti for treatment even if it was hard to

make the trip. Good luck!

Meredith

Mom to Chelsea

1/29/03 atypical BCF

>

> Okay, this really is a bad thing and not a joke at all, but our

> biggest sin in this has been waiting too long to get something

done

> and not trusting our gut instinct the first time around. Both

very

> bad things in this case, I admit, but sometimes you just get tired

of

> having to fight to get anything acomplished.

>

> So, here it is. Kai's foot is relapsing again This time it

is

> really my fault because I have not put his shoes on him since

before

> Christmas. That is because his shoes hurt him. At first I

thought

> it was because the bar was getting too small - which it was - but

> sent us a new bar and it did not help. When he sent us a new

> bar he was supposed to send the materials to make a mold of Kai's

> foot to have a new shoe made, but he forgot. However, I am not

sure

> that would have made any difference. Kai hasnt outgrown the

shoe.

> The problem is the so called " dynamic adduction " of his forefoot

that

> Dr Mosca was sure would self-correct without casting. I wanted

him

> to cast for it back in August, but I did not push the issue.

>

> It reminds me of back at the beginning of our saga when Dr Mosca

> thought the foot was corrected and Dr Ponseti said " trust him, he

is

> a good doctor " . Well, this time Dr Ponseti originally felt that

> another cast or two might be needed based on photos but later

advised

> that if Dr Mosca really thought it was dynamic adduction then it

> would be ok.

>

> Well, it wasnt ok. It never changed and eventually - after 3

months

> or so - the sandals began to hurt Kai's foot where the big toe

meets

> the metatarsal. I would take his shoes off and see a red mark

> there. I thought it was from the hole in the yellow stuff, so I

> adjusted things a bit. But it was there every day. Then the

crying

> started. Kai would fall asleep fine and then wake up inconolable

in

> the middle of the night and cry until I took his shoes off. Only

> then would he sleep again. We kept this up for a while thinking

> different things would help but they never did. Mind you, Kai

still

> cant talk, so he could not just tell us " owie " So, finally I gave

up

> and figured I would get to make a new shoe. That is easier

said

> than done, tho. I havent been able to get a mold done of Kai's

foot

> for the new shoe, and in the mean time his foot has started to

turn

> under again He still has good dorsiflexion, but I know what I

am

> seeing and he is walking on the outside of his foot and the little

> toe is rolling under the outside of his foot just like last time.

>

> I have made arrangements for a local orthotist to make a mold of

> Kai's foot and send it to , but I don't know if just going

back

> into the shoes will work. I think he is going to have a cast or

two

> to at least correct the adduction before he can go back into the

> shoes

>

> We have an appointment with Dr Mosca in Feb 9. I dont know what

to

> say. It is very hard to say to a doctor " You were wrong - again -

> now fix it - again. " Don't get me wrong, I still feel Dr Mosca is

a

> great doc, but I swear we have the worst luck with Kai's foot

fooling

> him into believing something that just isnt true! We have talked

> about taking Kai back to Iowa. It isnt that Dr Mosca cant fix

what

> is wrong - it really should be an easy fix considering how easy

Kai's

> foot is to manipulate - it's just that, well, I dont know what it

> is. I never had to argue with Dr Ponseti. I told him the problem

> and he went out and learned about it and learned how to fix it.

He

> never questioned our knowledge on the subject. He understood that

a

> parent sees everyday what a doctor cannot. He has always taken

our

> concerns of relapse seriously and examined the photos with our

> descriptions of what else was going on in mind.

>

> What would you guys do? It isnt easy getting to Iowa from here,

and

> not undertaken lightly when I know the problem CAN be taken care

of

> closer to home. SIGH.

>

> Angel

January 14, 2005

Don't forget to tell her about Angel Flight. I've used it a few times,

Audra used it last trip up, and it is the answer to prayers for so many.

Don't know where Angel is but it is certainly worth a call. They are

featuring a story on in the spring.

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Re: I must confess to being a bad mother - or

>not LOL

>Date: Fri, 14 Jan 2005 18:43:04 -0000

>

>Hi Angel,

>

>Don't beat yourself up for trusting Dr. Mosca, you thought you were

>doing the right thing at the time. Now you have to do what you think

>is the right thing at this time. I don't think anyone has ever

>regretted going to Dr. Ponsetti for treatment even if it was hard to

>make the trip. Good luck!

>

>Meredith

>Mom to Chelsea

>1/29/03 atypical BCF

>

> >

> > Okay, this really is a bad thing and not a joke at all, but our

> > biggest sin in this has been waiting too long to get something

>done

> > and not trusting our gut instinct the first time around. Both

>very

> > bad things in this case, I admit, but sometimes you just get tired

>of

> > having to fight to get anything acomplished.

> >

> > So, here it is. Kai's foot is relapsing again This time it

>is

> > really my fault because I have not put his shoes on him since

>before

> > Christmas. That is because his shoes hurt him. At first I

>thought

> > it was because the bar was getting too small - which it was - but

> > sent us a new bar and it did not help. When he sent us a new

> > bar he was supposed to send the materials to make a mold of Kai's

> > foot to have a new shoe made, but he forgot. However, I am not

>sure

> > that would have made any difference. Kai hasnt outgrown the

>shoe.

> > The problem is the so called " dynamic adduction " of his forefoot

>that

> > Dr Mosca was sure would self-correct without casting. I wanted

>him

> > to cast for it back in August, but I did not push the issue.

> >

> > It reminds me of back at the beginning of our saga when Dr Mosca

> > thought the foot was corrected and Dr Ponseti said " trust him, he

>is

> > a good doctor " . Well, this time Dr Ponseti originally felt that

> > another cast or two might be needed based on photos but later

>advised

> > that if Dr Mosca really thought it was dynamic adduction then it

> > would be ok.

> >

> > Well, it wasnt ok. It never changed and eventually - after 3

>months

> > or so - the sandals began to hurt Kai's foot where the big toe

>meets

> > the metatarsal. I would take his shoes off and see a red mark

> > there. I thought it was from the hole in the yellow stuff, so I

> > adjusted things a bit. But it was there every day. Then the

>crying

> > started. Kai would fall asleep fine and then wake up inconolable

>in

> > the middle of the night and cry until I took his shoes off. Only

> > then would he sleep again. We kept this up for a while thinking

> > different things would help but they never did. Mind you, Kai

>still

> > cant talk, so he could not just tell us " owie " So, finally I gave

>up

> > and figured I would get to make a new shoe. That is easier

>said

> > than done, tho. I havent been able to get a mold done of Kai's

>foot

> > for the new shoe, and in the mean time his foot has started to

>turn

> > under again He still has good dorsiflexion, but I know what I

>am

> > seeing and he is walking on the outside of his foot and the little

> > toe is rolling under the outside of his foot just like last time.

> >

> > I have made arrangements for a local orthotist to make a mold of

> > Kai's foot and send it to , but I don't know if just going

>back

> > into the shoes will work. I think he is going to have a cast or

>two

> > to at least correct the adduction before he can go back into the

> > shoes

> >

> > We have an appointment with Dr Mosca in Feb 9. I dont know what

>to

> > say. It is very hard to say to a doctor " You were wrong - again -

> > now fix it - again. " Don't get me wrong, I still feel Dr Mosca is

>a

> > great doc, but I swear we have the worst luck with Kai's foot

>fooling

> > him into believing something that just isnt true! We have talked

> > about taking Kai back to Iowa. It isnt that Dr Mosca cant fix

>what

> > is wrong - it really should be an easy fix considering how easy

>Kai's

> > foot is to manipulate - it's just that, well, I dont know what it

> > is. I never had to argue with Dr Ponseti. I told him the problem

> > and he went out and learned about it and learned how to fix it.

>He

> > never questioned our knowledge on the subject. He understood that

>a

> > parent sees everyday what a doctor cannot. He has always taken

>our

> > concerns of relapse seriously and examined the photos with our

> > descriptions of what else was going on in mind.

> >

> > What would you guys do? It isnt easy getting to Iowa from here,

>and

> > not undertaken lightly when I know the problem CAN be taken care

>of

> > closer to home. SIGH.

> >

> > Angel

>

January 14, 2005

Kim,

Thanks. Unfortunately, the last time I tried to get help from Angel Flights

they said it was over 1000 miles and would not talk about the possibility of

using 2 pilots/flights to get us there. I ended up paying for plane tickets out

of pocket from Seattle to Cedar Rapids - to the tone of close to $600 round trip

:-P Maybe it was just the person I was talking to or the West division or

something, but I could not get help from ANYONE for anything to do with the trip

except the RMH.

Angel

Re: I must confess to being a bad mother - or

>not LOL

>Date: Fri, 14 Jan 2005 18:43:04 -0000

>

>Hi Angel,

>

>Don't beat yourself up for trusting Dr. Mosca, you thought you were

>doing the right thing at the time. Now you have to do what you think

>is the right thing at this time. I don't think anyone has ever

>regretted going to Dr. Ponsetti for treatment even if it was hard to

>make the trip. Good luck!

>

>Meredith

>Mom to Chelsea

>1/29/03 atypical BCF

>

> >

> > Okay, this really is a bad thing and not a joke at all, but our

> > biggest sin in this has been waiting too long to get something

>done

> > and not trusting our gut instinct the first time around. Both

>very

> > bad things in this case, I admit, but sometimes you just get tired

>of

> > having to fight to get anything acomplished.

> >

> > So, here it is. Kai's foot is relapsing again This time it

>is

> > really my fault because I have not put his shoes on him since

>before

> > Christmas. That is because his shoes hurt him. At first I

>thought

> > it was because the bar was getting too small - which it was - but

> > sent us a new bar and it did not help. When he sent us a new

> > bar he was supposed to send the materials to make a mold of Kai's

> > foot to have a new shoe made, but he forgot. However, I am not

>sure

> > that would have made any difference. Kai hasnt outgrown the

>shoe.

> > The problem is the so called " dynamic adduction " of his forefoot

>that

> > Dr Mosca was sure would self-correct without casting. I wanted

>him

> > to cast for it back in August, but I did not push the issue.

> >

> > It reminds me of back at the beginning of our saga when Dr Mosca

> > thought the foot was corrected and Dr Ponseti said " trust him, he

>is

> > a good doctor " . Well, this time Dr Ponseti originally felt that

> > another cast or two might be needed based on photos but later

>advised

> > that if Dr Mosca really thought it was dynamic adduction then it

> > would be ok.

> >

> > Well, it wasnt ok. It never changed and eventually - after 3

>months

> > or so - the sandals began to hurt Kai's foot where the big toe

>meets

> > the metatarsal. I would take his shoes off and see a red mark

> > there. I thought it was from the hole in the yellow stuff, so I

> > adjusted things a bit. But it was there every day. Then the

>crying

> > started. Kai would fall asleep fine and then wake up inconolable

>in

> > the middle of the night and cry until I took his shoes off. Only

> > then would he sleep again. We kept this up for a while thinking

> > different things would help but they never did. Mind you, Kai

>still

> > cant talk, so he could not just tell us " owie " So, finally I gave

>up

> > and figured I would get to make a new shoe. That is easier

>said

> > than done, tho. I havent been able to get a mold done of Kai's

>foot

> > for the new shoe, and in the mean time his foot has started to

>turn

> > under again He still has good dorsiflexion, but I know what I

>am

> > seeing and he is walking on the outside of his foot and the little

> > toe is rolling under the outside of his foot just like last time.

> >

> > I have made arrangements for a local orthotist to make a mold of

> > Kai's foot and send it to , but I don't know if just going

>back

> > into the shoes will work. I think he is going to have a cast or

>two

> > to at least correct the adduction before he can go back into the

> > shoes

> >

> > We have an appointment with Dr Mosca in Feb 9. I dont know what

>to

> > say. It is very hard to say to a doctor " You were wrong - again -

> > now fix it - again. " Don't get me wrong, I still feel Dr Mosca is

>a

> > great doc, but I swear we have the worst luck with Kai's foot

>fooling

> > him into believing something that just isnt true! We have talked

> > about taking Kai back to Iowa. It isnt that Dr Mosca cant fix

>what

> > is wrong - it really should be an easy fix considering how easy

>Kai's

> > foot is to manipulate - it's just that, well, I dont know what it

> > is. I never had to argue with Dr Ponseti. I told him the problem

> > and he went out and learned about it and learned how to fix it.

>He

> > never questioned our knowledge on the subject. He understood that

>a

> > parent sees everyday what a doctor cannot. He has always taken

>our

> > concerns of relapse seriously and examined the photos with our

> > descriptions of what else was going on in mind.

> >

> > What would you guys do? It isnt easy getting to Iowa from here,

>and

> > not undertaken lightly when I know the problem CAN be taken care

>of

> > closer to home. SIGH.

> >

> > Angel

>

January 14, 2005

Meredith,

Thanks. I know you know how I am feeling ... kind of a been there, done that

for both of us, isnt it?

How is Chelsea doing? I promise I will get the differentfoot website updated

soon and get her story up! I think it is important for parents to be able to

see a success story rather than my sad tale LOL

Angel

Re: I must confess to being a bad mother - or not

LOL

Hi Angel,

Don't beat yourself up for trusting Dr. Mosca, you thought you were

doing the right thing at the time. Now you have to do what you think

is the right thing at this time. I don't think anyone has ever

regretted going to Dr. Ponsetti for treatment even if it was hard to

make the trip. Good luck!

Meredith

Mom to Chelsea

1/29/03 atypical BCF

>

> Okay, this really is a bad thing and not a joke at all, but our

> biggest sin in this has been waiting too long to get something

done

> and not trusting our gut instinct the first time around. Both

very

> bad things in this case, I admit, but sometimes you just get tired

of

> having to fight to get anything acomplished.

>

> So, here it is. Kai's foot is relapsing again This time it

is

> really my fault because I have not put his shoes on him since

before

> Christmas. That is because his shoes hurt him. At first I

thought

> it was because the bar was getting too small - which it was - but

> sent us a new bar and it did not help. When he sent us a new

> bar he was supposed to send the materials to make a mold of Kai's

> foot to have a new shoe made, but he forgot. However, I am not

sure

> that would have made any difference. Kai hasnt outgrown the

shoe.

> The problem is the so called " dynamic adduction " of his forefoot

that

> Dr Mosca was sure would self-correct without casting. I wanted

him

> to cast for it back in August, but I did not push the issue.

>

> It reminds me of back at the beginning of our saga when Dr Mosca

> thought the foot was corrected and Dr Ponseti said " trust him, he

is

> a good doctor " . Well, this time Dr Ponseti originally felt that

> another cast or two might be needed based on photos but later

advised

> that if Dr Mosca really thought it was dynamic adduction then it

> would be ok.

>

> Well, it wasnt ok. It never changed and eventually - after 3

months

> or so - the sandals began to hurt Kai's foot where the big toe

meets

> the metatarsal. I would take his shoes off and see a red mark

> there. I thought it was from the hole in the yellow stuff, so I

> adjusted things a bit. But it was there every day. Then the

crying

> started. Kai would fall asleep fine and then wake up inconolable

in

> the middle of the night and cry until I took his shoes off. Only

> then would he sleep again. We kept this up for a while thinking

> different things would help but they never did. Mind you, Kai

still

> cant talk, so he could not just tell us " owie " So, finally I gave

up

> and figured I would get to make a new shoe. That is easier

said

> than done, tho. I havent been able to get a mold done of Kai's

foot

> for the new shoe, and in the mean time his foot has started to

turn

> under again He still has good dorsiflexion, but I know what I

am

> seeing and he is walking on the outside of his foot and the little

> toe is rolling under the outside of his foot just like last time.

>

> I have made arrangements for a local orthotist to make a mold of

> Kai's foot and send it to , but I don't know if just going

back

> into the shoes will work. I think he is going to have a cast or

two

> to at least correct the adduction before he can go back into the

> shoes

>

> We have an appointment with Dr Mosca in Feb 9. I dont know what

to

> say. It is very hard to say to a doctor " You were wrong - again -

> now fix it - again. " Don't get me wrong, I still feel Dr Mosca is

a

> great doc, but I swear we have the worst luck with Kai's foot

fooling

> him into believing something that just isnt true! We have talked

> about taking Kai back to Iowa. It isnt that Dr Mosca cant fix

what

> is wrong - it really should be an easy fix considering how easy

Kai's

> foot is to manipulate - it's just that, well, I dont know what it

> is. I never had to argue with Dr Ponseti. I told him the problem

> and he went out and learned about it and learned how to fix it.

He

> never questioned our knowledge on the subject. He understood that

a

> parent sees everyday what a doctor cannot. He has always taken

our

> concerns of relapse seriously and examined the photos with our

> descriptions of what else was going on in mind.

>

> What would you guys do? It isnt easy getting to Iowa from here,

and

> not undertaken lightly when I know the problem CAN be taken care

of

> closer to home. SIGH.

>

> Angel

January 14, 2005

ee,

Thanks. I really do feel bad because I did not really want to have Kai cast in

August, so I was very ready to believe that it was not necessary I really

dont know what we are going to do ... but I guess we will figure it out soon.

Angel

Re: I must confess to being a bad mother - or not

LOL

Oh that's just awful, you poor thing. Under the circumstances, you've lost

some faith on Mosca, lost some correction in Kai.......maybe Iowa would be best

even tho it's hard to get there. You know, nip all this in the bud.

s.

January 14, 2005

Angel,

We are having the same problem with Angel Flights. We are in Los

Angeles and to CedarRapids is 1300+ miles so they won't do it. I

asked if we could go from Las Vegas to Kansas City (make up the

other distance driving, I have family in vegas to leave my car with

and then rent a car in Kansas City) and that is only 900+ miles

and they said no that they can't do it because it has to be from my

home to the city in which the medical treatment is needed. It

stinks. And you are right about tickets into Cedar Rapids....

OUCH! We are thinking about flying into Chicago and then renting

a car and driving down, it ends up still being cheaper then flying

into Cedar Rapids and then I have a car while I am there.

LOL all that talk and I just wanted to sympathize with you from one

West Coastie to another.... darn the midwest is an expensive place

to fly to!!! LOL

Hope that you are able to get there and get everything taken care of

with Kai!!! Maybe we will see you there!

Good Luck!!!

and Becky 3yrs, bilateral clubfoot

> > >

> > > Okay, this really is a bad thing and not a joke at all, but our

> > > biggest sin in this has been waiting too long to get something

> >done

> > > and not trusting our gut instinct the first time around. Both

> >very

> > > bad things in this case, I admit, but sometimes you just get

tired

> >of

> > > having to fight to get anything acomplished.

> > >

> > > So, here it is. Kai's foot is relapsing again This time

it

> >is

> > > really my fault because I have not put his shoes on him since

> >before

> > > Christmas. That is because his shoes hurt him. At first I

> >thought

> > > it was because the bar was getting too small - which it was -

but

> > > sent us a new bar and it did not help. When he sent us a

new

> > > bar he was supposed to send the materials to make a mold of

Kai's

> > > foot to have a new shoe made, but he forgot. However, I am not

> >sure

> > > that would have made any difference. Kai hasnt outgrown the

> >shoe.

> > > The problem is the so called " dynamic adduction " of his

forefoot

> >that

> > > Dr Mosca was sure would self-correct without casting. I wanted

> >him

> > > to cast for it back in August, but I did not push the issue.

> > >

> > > It reminds me of back at the beginning of our saga when Dr

Mosca

> > > thought the foot was corrected and Dr Ponseti said " trust him,

he

> >is

> > > a good doctor " . Well, this time Dr Ponseti originally felt

that

> > > another cast or two might be needed based on photos but later

> >advised

> > > that if Dr Mosca really thought it was dynamic adduction then

it

> > > would be ok.

> > >

> > > Well, it wasnt ok. It never changed and eventually - after 3

> >months

> > > or so - the sandals began to hurt Kai's foot where the big toe

> >meets

> > > the metatarsal. I would take his shoes off and see a red mark

> > > there. I thought it was from the hole in the yellow stuff, so

I

> > > adjusted things a bit. But it was there every day. Then the

> >crying

> > > started. Kai would fall asleep fine and then wake up

inconolable

> >in

> > > the middle of the night and cry until I took his shoes off.

Only

> > > then would he sleep again. We kept this up for a while

thinking

> > > different things would help but they never did. Mind you, Kai

> >still

> > > cant talk, so he could not just tell us " owie " So, finally I

gave

> >up

> > > and figured I would get to make a new shoe. That is

easier

> >said

> > > than done, tho. I havent been able to get a mold done of Kai's

> >foot

> > > for the new shoe, and in the mean time his foot has started to

> >turn

> > > under again He still has good dorsiflexion, but I know

what I

> >am

> > > seeing and he is walking on the outside of his foot and the

little

> > > toe is rolling under the outside of his foot just like last

time.

> > >

> > > I have made arrangements for a local orthotist to make a mold

of

> > > Kai's foot and send it to , but I don't know if just going

> >back

> > > into the shoes will work. I think he is going to have a cast

or

> >two

> > > to at least correct the adduction before he can go back into

the

> > > shoes

> > >

> > > We have an appointment with Dr Mosca in Feb 9. I dont know

what

> >to

> > > say. It is very hard to say to a doctor " You were wrong -

again -

> > > now fix it - again. " Don't get me wrong, I still feel Dr

Mosca is

> >a

> > > great doc, but I swear we have the worst luck with Kai's foot

> >fooling

> > > him into believing something that just isnt true! We have

talked

> > > about taking Kai back to Iowa. It isnt that Dr Mosca cant fix

> >what

> > > is wrong - it really should be an easy fix considering how easy

> >Kai's

> > > foot is to manipulate - it's just that, well, I dont know what

it

> > > is. I never had to argue with Dr Ponseti. I told him the

problem

> > > and he went out and learned about it and learned how to fix it.

> >He

> > > never questioned our knowledge on the subject. He understood

that

> >a

> > > parent sees everyday what a doctor cannot. He has always taken

> >our

> > > concerns of relapse seriously and examined the photos with our

> > > descriptions of what else was going on in mind.

> > >

> > > What would you guys do? It isnt easy getting to Iowa from

here,

> >and

> > > not undertaken lightly when I know the problem CAN be taken

care

> >of

> > > closer to home. SIGH.

> > >

> > > Angel

> >

>

January 14, 2005

Naomi,

I remember mentioning that, so if we do decide to head back to Iowa, I

am going to take that into consideration. For now we are going to see what Dr

Mosca has to say since the appointment is just a few weeks away.

I tried with the airlines last time. Because I did not have a return date they

would not consider helping. They will only schedule round trip on the medical

assistance program :-P

As for priceline ... well that $600 WAS from priceline (or something similar ...

I price shopped them all). Regular tickets were running $800 + ONE WAY! and

that was a little over a year ago. Yikes!

As for Kai enjoying being free of the bar, well, not really. He is one of those

kids the really liked his shoes (in fact, he likes ALL shoes, even his sister's

dress up high heels!) and we actually had a hard time getting him to settle down

to sleep without them. Because of his speech delay (at least I am told that is

the reason) he has some autistic-like idiosyncracies, one of which is an

unusually strong desire for things to be " just so " . So that took a while to get

over.

The only problem he ever had sleeping in the brace was getting tangled in his

blanket, and that only happened once a week or less. Discounting the sleep

problems he had when the brace began to hurt him, it never troubled him at all,

even when he was not fully corrected. The only reason it bothers him now is

because it puts pressure on a bone joint - kind of like wearing closed toe heels

that are a size too small.

And in the cognitive/developmental area, sadly he has actually regressed in the

same period of time (completely unrelated, I am sure). That is probably part of

why I let this go for too long ... I was too busy trying to focus on his speech

and related development that we had neglected when we were working so hard at

getting his foot fixed In the last couple months we have been thru genetic

testing, more allergy testing, language testing ... ahhh. Sometimes it is hard

to stay properly focused on everything all at once :-)

Angel

Re: Re: I must confess to being a bad mother - or

not LOL

When I win the lottery, I am going to set aside a big wad of the cash so I can

pay for kids' clubfoot treatment, pay travel expenses all of that.

Until then...

Boothe recently mentioned using Angel Flights from one of the Carolinas

to Iowa and that they used 2 pilots. It may be worth it to try them again? I

realize you're not dealing with the same chapter, but still, you could bring up

that you know it can be done. Also, I've been told that some airlines will give

you reduced rates if you are traveling to seek medical treatment for your child.

Have you ever tried priceline.com?

Can you tell that Kai is particularly enjoying not being in the FAB at all? Is

he sleeping better? Making leaps in cognitive development? I'm just curious.

All our best,

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

January 15, 2005

Wow maybe I should trust my gut. I think my son's foot might have

relapsed or Rockerbottom (I compared the way his foot looks to the

pictures posted), but I have avoided going to the DR because it just

seems to be so much trouble to get an appointment then get there and

while there have my daughter watched so I can focus on what I want to

say to the DR and what he's telling me. I felt we could stick it out

until his appointment which is next week, but I noticed a problem

before Christmas. Also I'm afraid the DR will ask me when I noticed

it and I'll tell him and he'll put me on the spot and I don't have

very good excuses and it's partially my fault since I haven't been

committed enough to keep the shoes on the full 23 hours. I keep them

on for most of the day, but sometimes when he gets his foot out I

just don't feel like putting the shoes back on. Another problem is he

would get his foot out while someone else is watching him and they

would keep the shoes off til I get home. He also breaks out while

he's sleeping so until he wakes me up he could have it off without me

knowing it. I also am afraid he will say something is wrong and they

will have to do the tendon release or more and I don't want to go

through that. I'm a wimp when it comes to things like procedures and

things like that especially when it's my kids that the things are

being done on. I am glad that there's this site, I read the posts as

often as I can and there are so many that have the same questions as

I do that I can find the answers without posting, so I don't post

very often. Anyway sorry if too long and confusing I just felt like

the gut thing is just what I need to trust.

Holly, athan LCF

>

> Okay, this really is a bad thing and not a joke at all, but our

> biggest sin in this has been waiting too long to get something done

> and not trusting our gut instinct the first time around. Both very

> bad things in this case, I admit, but sometimes you just get tired

of

> having to fight to get anything acomplished.

>

> So, here it is. Kai's foot is relapsing again This time it is

> really my fault because I have not put his shoes on him since

before

> Christmas. That is because his shoes hurt him. At first I thought

> it was because the bar was getting too small - which it was - but

> sent us a new bar and it did not help. When he sent us a new

> bar he was supposed to send the materials to make a mold of Kai's

> foot to have a new shoe made, but he forgot. However, I am not

sure

> that would have made any difference. Kai hasnt outgrown the shoe.

> The problem is the so called " dynamic adduction " of his forefoot

that

> Dr Mosca was sure would self-correct without casting. I wanted him

> to cast for it back in August, but I did not push the issue.

>

> It reminds me of back at the beginning of our saga when Dr Mosca

> thought the foot was corrected and Dr Ponseti said " trust him, he

is

> a good doctor " . Well, this time Dr Ponseti originally felt that

> another cast or two might be needed based on photos but later

advised

> that if Dr Mosca really thought it was dynamic adduction then it

> would be ok.

>

> Well, it wasnt ok. It never changed and eventually - after 3

months

> or so - the sandals began to hurt Kai's foot where the big toe

meets

> the metatarsal. I would take his shoes off and see a red mark

> there. I thought it was from the hole in the yellow stuff, so I

> adjusted things a bit. But it was there every day. Then the

crying

> started. Kai would fall asleep fine and then wake up inconolable

in

> the middle of the night and cry until I took his shoes off. Only

> then would he sleep again. We kept this up for a while thinking

> different things would help but they never did. Mind you, Kai

still

> cant talk, so he could not just tell us " owie " So, finally I gave

up

> and figured I would get to make a new shoe. That is easier

said

> than done, tho. I havent been able to get a mold done of Kai's

foot

> for the new shoe, and in the mean time his foot has started to turn

> under again He still has good dorsiflexion, but I know what I

am

> seeing and he is walking on the outside of his foot and the little

> toe is rolling under the outside of his foot just like last time.

>

> I have made arrangements for a local orthotist to make a mold of

> Kai's foot and send it to , but I don't know if just going back

> into the shoes will work. I think he is going to have a cast or

two

> to at least correct the adduction before he can go back into the

> shoes

>

> We have an appointment with Dr Mosca in Feb 9. I dont know what to

> say. It is very hard to say to a doctor " You were wrong - again -

> now fix it - again. " Don't get me wrong, I still feel Dr Mosca is

a

> great doc, but I swear we have the worst luck with Kai's foot

fooling

> him into believing something that just isnt true! We have talked

> about taking Kai back to Iowa. It isnt that Dr Mosca cant fix what

> is wrong - it really should be an easy fix considering how easy

Kai's

> foot is to manipulate - it's just that, well, I dont know what it

> is. I never had to argue with Dr Ponseti. I told him the problem

> and he went out and learned about it and learned how to fix it. He

> never questioned our knowledge on the subject. He understood that

a

> parent sees everyday what a doctor cannot. He has always taken our

> concerns of relapse seriously and examined the photos with our

> descriptions of what else was going on in mind.

>

> What would you guys do? It isnt easy getting to Iowa from here,

and

> not undertaken lightly when I know the problem CAN be taken care of

> closer to home. SIGH.

>

> Angel

January 17, 2005

Angel,

First of all, YOU ARE NOT A BAD MOTHER!!! We listen to and trust

these doctors, who are only doing their best (most of them, anyway)

and sometimes they don't really know what's going to happen.

No matter how good any doctor is, I am of the belief that there is NO

ONE with the expertise of Dr. Ponseti. His experience cannot be

matched by anyone---who else has spent decades on this one speciality?

Even though we ALMOST got stranded in Iowa City for Christmas (ended

up finally getting on the road on xmas eve and made it home just in

time for dinner on Christmas Day), and it has been

expensive/inconvenient to go there, I never regret it for a second. I

must admit, we've had many advatages that made it possible. For

instance, my husband got FMLA leave and I wasn't working until the

major length visits were over with. We were also able to borrow my

father's car for most of the visits and we both are experienced

" marathon road-trippers " with not other children to worry about.

While it's a 1,000 mile drive, I'm glad all these circumstances added

up to make the trips possible because I am positive that Devlin would

be headed for major surgery at this point if we had stayed with duPont

or even CHOP.

Anyway, maybe it isn't as easy for you to go but I must say I've never

heard anyone mention regrets for going to Iowa.

Something that you may be able to take advantage of is frequent flier

miles from private donors. I know a bunch of people are looking to

use up (or maybe donate?) their USAirways miles because they're

concerned the airline won't be around by the time they want to use

their miles. Frequent flier miles can be used to issue tickets in

anyone's name, but they just can't be sold. I just have no idea of

how to find such people. Maybe the airlines (the frequent flier

programs, not the airline itslef) keep a list of people who have

offered, or maybe a travel agency that does the bookings for frequent

business travellers would allow you to post a request on their website

or something, I really don't know. A lot of business travelers end up

with tons of miles and no time or inclination (there are black out

dates, etc.) to use them. I'm sorry I don't know how to find these

people, but it just seems like they're out there. If I think of

anything I'll let you know.

Good luck and stop beating yourself up. A minor setback is just

that---try to focus on all the good that has happened with Kai's

treatment.

Mommy to Devlin, 1/7/04

Bilateral Atypical CF

>

> Okay, this really is a bad thing and not a joke at all, but our

> biggest sin in this has been waiting too long to get something done

> and not trusting our gut instinct the first time around. Both very

> bad things in this case, I admit, but sometimes you just get tired of

> having to fight to get anything acomplished.

>

> So, here it is. Kai's foot is relapsing again This time it is

> really my fault because I have not put his shoes on him since before

> Christmas. That is because his shoes hurt him. At first I thought

> it was because the bar was getting too small - which it was - but

> sent us a new bar and it did not help. When he sent us a new

> bar he was supposed to send the materials to make a mold of Kai's

> foot to have a new shoe made, but he forgot. However, I am not sure

> that would have made any difference. Kai hasnt outgrown the shoe.

> The problem is the so called " dynamic adduction " of his forefoot that

> Dr Mosca was sure would self-correct without casting. I wanted him

> to cast for it back in August, but I did not push the issue.

>

> It reminds me of back at the beginning of our saga when Dr Mosca

> thought the foot was corrected and Dr Ponseti said " trust him, he is

> a good doctor " . Well, this time Dr Ponseti originally felt that

> another cast or two might be needed based on photos but later advised

> that if Dr Mosca really thought it was dynamic adduction then it

> would be ok.

>

> Well, it wasnt ok. It never changed and eventually - after 3 months

> or so - the sandals began to hurt Kai's foot where the big toe meets

> the metatarsal. I would take his shoes off and see a red mark

> there. I thought it was from the hole in the yellow stuff, so I

> adjusted things a bit. But it was there every day. Then the crying

> started. Kai would fall asleep fine and then wake up inconolable in

> the middle of the night and cry until I took his shoes off. Only

> then would he sleep again. We kept this up for a while thinking

> different things would help but they never did. Mind you, Kai still

> cant talk, so he could not just tell us " owie " So, finally I gave up

> and figured I would get to make a new shoe. That is easier said

> than done, tho. I havent been able to get a mold done of Kai's foot

> for the new shoe, and in the mean time his foot has started to turn

> under again He still has good dorsiflexion, but I know what I am

> seeing and he is walking on the outside of his foot and the little

> toe is rolling under the outside of his foot just like last time.

>

> I have made arrangements for a local orthotist to make a mold of

> Kai's foot and send it to , but I don't know if just going back

> into the shoes will work. I think he is going to have a cast or two

> to at least correct the adduction before he can go back into the

> shoes

>

> We have an appointment with Dr Mosca in Feb 9. I dont know what to

> say. It is very hard to say to a doctor " You were wrong - again -

> now fix it - again. " Don't get me wrong, I still feel Dr Mosca is a

> great doc, but I swear we have the worst luck with Kai's foot fooling

> him into believing something that just isnt true! We have talked

> about taking Kai back to Iowa. It isnt that Dr Mosca cant fix what

> is wrong - it really should be an easy fix considering how easy Kai's

> foot is to manipulate - it's just that, well, I dont know what it

> is. I never had to argue with Dr Ponseti. I told him the problem

> and he went out and learned about it and learned how to fix it. He

> never questioned our knowledge on the subject. He understood that a

> parent sees everyday what a doctor cannot. He has always taken our

> concerns of relapse seriously and examined the photos with our

> descriptions of what else was going on in mind.

>

> What would you guys do? It isnt easy getting to Iowa from here, and

> not undertaken lightly when I know the problem CAN be taken care of

> closer to home. SIGH.

>

> Angel

January 17, 2005

I found one link where you state your case (request) for donated

frequent flier miles: http://www.miledonor.com/requests/donate.php

> be headed for major surgery at this point if we had stayed with duPont

> or even CHOP.

>

> Anyway, maybe it isn't as easy for you to go but I must say I've never

> heard anyone mention regrets for going to Iowa.

>

> Something that you may be able to take advantage of is frequent flier

> miles from private donors. I know a bunch of people are looking to

> use up (or maybe donate?) their USAirways miles because they're

> concerned the airline won't be around by the time they want to use

> their miles. Frequent flier miles can be used to issue tickets in

> anyone's name, but they just can't be sold. I just have no idea of

> how to find such people. Maybe the airlines (the frequent flier

> programs, not the airline itslef) keep a list of people who have

> offered, or maybe a travel agency that does the bookings for frequent

> business travellers would allow you to post a request on their website

> or something, I really don't know. A lot of business travelers end up

> with tons of miles and no time or inclination (there are black out

> dates, etc.) to use them. I'm sorry I don't know how to find these

> people, but it just seems like they're out there. If I think of

> anything I'll let you know.

>

> Good luck and stop beating yourself up. A minor setback is just

> that---try to focus on all the good that has happened with Kai's

> treatment.

>

> Mommy to Devlin, 1/7/04

> Bilateral Atypical CF

>

> >

> > Okay, this really is a bad thing and not a joke at all, but our

> > biggest sin in this has been waiting too long to get something done

> > and not trusting our gut instinct the first time around. Both very

> > bad things in this case, I admit, but sometimes you just get tired of

> > having to fight to get anything acomplished.

> >

> > So, here it is. Kai's foot is relapsing again This time it is

> > really my fault because I have not put his shoes on him since before

> > Christmas. That is because his shoes hurt him. At first I thought

> > it was because the bar was getting too small - which it was - but

> > sent us a new bar and it did not help. When he sent us a new

> > bar he was supposed to send the materials to make a mold of Kai's

> > foot to have a new shoe made, but he forgot. However, I am not sure

> > that would have made any difference. Kai hasnt outgrown the shoe.

> > The problem is the so called " dynamic adduction " of his forefoot that

> > Dr Mosca was sure would self-correct without casting. I wanted him

> > to cast for it back in August, but I did not push the issue.

> >

> > It reminds me of back at the beginning of our saga when Dr Mosca

> > thought the foot was corrected and Dr Ponseti said " trust him, he is

> > a good doctor " . Well, this time Dr Ponseti originally felt that

> > another cast or two might be needed based on photos but later advised

> > that if Dr Mosca really thought it was dynamic adduction then it

> > would be ok.

> >

> > Well, it wasnt ok. It never changed and eventually - after 3 months

> > or so - the sandals began to hurt Kai's foot where the big toe meets

> > the metatarsal. I would take his shoes off and see a red mark

> > there. I thought it was from the hole in the yellow stuff, so I

> > adjusted things a bit. But it was there every day. Then the crying

> > started. Kai would fall asleep fine and then wake up inconolable in

> > the middle of the night and cry until I took his shoes off. Only

> > then would he sleep again. We kept this up for a while thinking

> > different things would help but they never did. Mind you, Kai still

> > cant talk, so he could not just tell us " owie " So, finally I gave up

> > and figured I would get to make a new shoe. That is easier said

> > than done, tho. I havent been able to get a mold done of Kai's foot

> > for the new shoe, and in the mean time his foot has started to turn

> > under again He still has good dorsiflexion, but I know what I am

> > seeing and he is walking on the outside of his foot and the little

> > toe is rolling under the outside of his foot just like last time.

> >

> > I have made arrangements for a local orthotist to make a mold of

> > Kai's foot and send it to , but I don't know if just going back

> > into the shoes will work. I think he is going to have a cast or two

> > to at least correct the adduction before he can go back into the

> > shoes

> >

> > We have an appointment with Dr Mosca in Feb 9. I dont know what to

> > say. It is very hard to say to a doctor " You were wrong - again -

> > now fix it - again. " Don't get me wrong, I still feel Dr Mosca is a

> > great doc, but I swear we have the worst luck with Kai's foot fooling

> > him into believing something that just isnt true! We have talked

> > about taking Kai back to Iowa. It isnt that Dr Mosca cant fix what

> > is wrong - it really should be an easy fix considering how easy Kai's

> > foot is to manipulate - it's just that, well, I dont know what it

> > is. I never had to argue with Dr Ponseti. I told him the problem

> > and he went out and learned about it and learned how to fix it. He

> > never questioned our knowledge on the subject. He understood that a

> > parent sees everyday what a doctor cannot. He has always taken our

> > concerns of relapse seriously and examined the photos with our

> > descriptions of what else was going on in mind.

> >

> > What would you guys do? It isnt easy getting to Iowa from here, and

> > not undertaken lightly when I know the problem CAN be taken care of

> > closer to home. SIGH.

> >

> > Angel

January 17, 2005

Angel,

at this stage in the game I'd head for Iowa too. Ease your mind, get it done

and done right while you still can.