Re: Re:many thanks!--booklet

[Guest guest]

Joanne--

I think this is a good idea. I seem to recall someone posting the beginnings of

something like this about a year ago. I'm pretty sure it's in the files or

links.

I recently read, on a french website, that in France they distribute a little

booklet to parents of children born with clubfoot. It's called something like

" Oliver's Nice Feet " and tells about what to expect as far as treatment goes,

tips about buying clothing, how other people will react, long-term prognosis,

that kind of thing. It sounds like it's sort of cutesy. I'm trying to get a

copy sent to me.

Let me know what I can do. I have some experience with grant writing that might

come in handy.

Naomi

The Family

Naomi Hannah Jonah(06/20/03, bilateral clubfoot, FAB 16/7)

joannewalton2003 jowalton68@...> wrote:

On my way back from the symposium yesterday, I started thinking that

perhaps it would be useful to put together a booklet specifically for

parents about all the little things they may have to deal with and

share the experience that we have amassed here on the internet. The

booklets would be distributed to parents through doctors offices. It

could be translated into different languages. I'm willing to

coordinate the project but I would need to use the info. that's

already been developed. I don't want to reinvent the wheel when there

are already several great documents out there...

As one doctor pointed out, the vast majority of parents do not have

access to the internet. I had thought of this idea previously but

dismissed it because I thought it was not necessary because of the

information that could be gathered on the internet.

Dr. Herzenberg had great things to say about his " internet patients "

compared to those who come in off the street, especially if the

internet patients had unsuccessful treatment elsewhere.

However, other doctors reported that their internet parents were

causing difficulties for them, especially in countries where the

medical establishment is not open to the Ponseti method. To have

parents telling doctors they're doing it wrong is just not helpful

for the doctor who is trying to convince other doctors to adopt the

method. There definitely seems to be a lot of cultural differences in

regards to the way the method is accepted and carried out depending

on the norms for that culture.

One doctor showed an example of the Letter Doctor Ponseti sends to a

doctor who is not complying with his method, and our second doctor

who was attending the symposium, let out a big laugh. Since I'm non-

confrontational by nature, I had said nothing to my doctor when she

modified the method, but did let Dr. Ponseti know what modifications

my doctor was making. I do think that parents can confront their

doctors if they're comfortable doing that, but the doctor may not be

responsive until they get the Letter from Dr. POnseti...

It's like when you're brother or sister told you to stop doing

something, you ignored their advice until your parent intervened....

Just some thoughts... off to a picnic...

Best, Joanne W. mom to big Zoe (3-25-01, right clubfoot)

> hi!

>

> i just wanted to thank everyone for all their suggestions and

> reassuring words regarding naomi and her difficulties sleeping with

> the longer bar! ... i appreciate it more than i can tell you and i

> hope that someday i can help someone who's just starting out in this

> journey.

>

> did you know that for seven months i couldn't find a support system

to

> talk to? i've been reading different things from this site with

tears

> in my eyes thinking 'why couldn't i have found this place

sooner!?!' -

> we went through the problems of finding sleepers and modifying

> outfits, figuring out how to take the casts off, not being able to

fit

> her in the carseat, nursing difficulties, naomi constantly slipping

> out of her boots, etc. all on our own since we didn't know who to

ask

> (our doctor and orthotics dept tried to help, but since they never

had

> to deal with these everyday problems, they were stumped a lot of the

> time!)

>

> thank you again!

>

> maureen