booklet idea - gathering the info

[Guest guest]

Joanne (and everybody),

It's a great idea to make an on-line, printable booklet for new

parents of clubfoot babies. When our son Dinos was born four years

ago, we were VERY fortunate that our pediatrician knew Dr. Feldman

had started with the Ponseti Method. But I did ask the hospital for

written info and there was NOTHING. Luckily, we found this website

and the info and support we got here were just so wonderful, but many

parents don't have internet access, or maybe they don't have the time

to look or even know that we're out here to find! If the booklet was

on this site and that was communicated to hospitals, pediatricians,

and Ponseti Method docs, maybe they would even go ahead and print out

the booklet for the parents. Also, with it on-line it could be

updated so easily. As for creating the booklet, I think there are

useful files already here, not to mention the huge amount of info and

ideas that can be pulled from the postings. For example, about two

years ago I put here a file full of every idea I'd ever heard and

tried for keeping Dino's feet in the shoes. Is it possible to post

something permanently on the home page of the site, giving us

instructions on how to input our info into some organized files

here? If people would input their info somebody would be able to

edit those files into sections for the booklet. And, once the booklet

was finished, it could exist on the site as " read only " (so it can't

be changed) while the original files could remain open for new

material. The booklet could include a section on understanding

clubfoot and the Ponseti Method, and other sections like " keeping the

shoes on, " " clothing, car seats, etc. that work with the casts and

DBB, " " pointers on how to get your health insurer to cover the

treatment, " " helpful hints for living with a baby in casts/DBB " (this

is where we talk about padding the DBB bar, getting stuck in the crib

bars, etc.)...I'm sure there are many more ideas. Finally, if

members here are willing, we could include some contact info so that

parents of newborn clubfoot babies could contact one of us who may

live nearby. So, that's my " two cents. " Let me know when it's time

to input!

> Tamsin,

> Thanks for your enthusiasm and feedback. What a great idea to have

the

> booklet accessible on-line for anyone to print and distribute! This

is like

> the Global Help booklet. I have printed several copies and

distributed them

> to local docs.

>

> I was just re-reading the section for parents, though and there are

several

> things in it I strongly disagree with. It is also culturally

biased. But it

> is better than nothing and it's a good start. It is definitely

written from

> the point of view that the doctor is doing the method properly. It

is going

> to be difficult to give out enough information so the parent is

properly

> informed but yet not in a way that will undermine the widespread

use of the

> method by all doctors...

>

> I'll definitely include you on the " committee " and could use your

editing

> and layout skills...

>

> Best, Joanne W. mom to Zoe 3-25-01, right clubfoot

> www.geocities.com/joannewalton2003/clubfootstory.html

>

>

> Message: 16

> Date: Mon, 06 Sep 2004 10:48:24 -0000

> From: " newmother30 "

> Subject: Re: Booklet

>

> I think this is a great idea.

>

> My partner and I were discussing last week that it would have

> been great if something like this was available, we were looking at

a

> booklet

> the hospital

> gave my mother before she went in for open heart surgery 4 weeks

ago and it

> has

> been

> such a support for her.

>

> Booklets could besent to maternity wards and given to new parents

> when their child is born so that they could have some answers right

away.

>

> Having a professionally printed booklet would be great but if the

booklet

> is

> also in the

> files section, in a form which could be easily printed out at home

and

> stapled

> together, we

> could use it to give to other parents we may see at the

hospitals/doctor's

> offices...

>

> I am happy to help - I can edit or do page layout or graphics, just

let me

> know.

>

> Tamsin

> Sydney

>

> _________________________________________________________________

> On the road to retirement? Check out MSN Life Events for advice on

how to

> get there! http://lifeevents.msn.com/category.aspx?cid=Retirement