Re: OK - where are those posts about bar length? - musings... I'm irritable tonight...

[Guest guest]

Kori, I can't help with the bar length postings but I did just want

to say YOU GO GIRL!!! I think that many of us can sympathize with

you. After a while, I stopped caring what they thought of me at the

doctor's office. When it comes to my kid's care, I'm going to make

sure that protocol is followed...regardless of what their 'normal'

routine is concerning clubfoot treatment. Just know that you're

leading the way for better treatment for others!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7

> Sorry all, I know I had this information before the great *crash

bang boom

> dead laptop deal*, and it's on yahoo's site. But I don't do

yahoo's site

> unless I absolutely have to. I have very little ram in this puter,

and I'm

> not going to search forever for those posts. I know someone has

them

> handy... please and thank you! What I want are the articles that

have Dr.

> Ponseti saying both bolt to bolt, and heel to heel. I have the

Global

> Health linked somewhere so that's one place, but I remember seeing

quotes

> from seminars or articles where it said both as well. Anyone??

That has

> led all of us to assume that there's an open *range* that babies

are

> comfortable with. That information, coupled with the fact that

many babies

> do just fine in a fixed length bar for a period of months,

obviously

> phasing through the *range* as they grow... means that there's no

one way

> to measure the bar. You do what baby is most comfortable with

within that

> *range*. This does not seem to me to be something difficult to

> accept. But apparently my altercation with the lady orthotist last

week

> ran through the shop, and my guys indicated to me that they were

> essentially on the side of that woman and her OPINION that the bar

length

> was just FINE for Darbi. Which it wasn't. She hasn't had a

wakeful night

> since they changed it, and not once has said " ow " about her shoes

since

> then either. So apparently more education needs to be forced upon

some

> people before they GET IT that mom knows best. I have to send this

guy

> those quotes. I've got the new one's address and he's the one who

thought

> it was *amazing* that Darbi hadn't had sleep issues since she got

the

> longer bar. You know it is... simply AMAZING! Who knew???

ARGH!!!!

>

> I will say however, that *my guy*, Rob is pretty great. He humors

me in a

> weird way, yet I know that he believes that I have inside scoop on

all this

> and he's nice about it. Even if he does think I'm a whack job. I

think

> all of them there could be great too, so I am going forward with

continuing

> to be a PIT-ROYAL-A and not looking back. Of course, when you're

there

> arguing with medical people and your kids are running around being

crazy

> it's not always easy to be smart and elegant and educated. I hate

> that... they get you every time... docs... now orthotists...

Rob is

> cool though, he even brought up Dr. Pirani from BC and the Uganda

project

> and we talked about their success rates. I would love to find

some info

> on that for him, just to show him I listened and it's a great thing

they're

> doing there. I so love the idea that they tell cast techs how to

correct

> the feet and how to cast and they do exactly that. Then they tell

the

> parents to use the FAB (Steenbeck Brace - which is for those who

don't

> know, a FAB that can be made by any cobbler with materials easily

found in

> third world countries.), and those parent follow the instructions

and are

> wonderfully compliant. And isn't their success rate nearly

> 100%? Hummmm..... What's up with that anyway? ugh...

>

> Good news is, her impressions are going to be on their way. And

hopefully

> will be able to make Kai's shoes from her feet size. Or Angel

will

> check her email and go to a florist shop lol.

>

> I gave them a copy of the PDF draft of the tips brochure Naomi and

I have

> been working on. I hope they take a good long look at it this

time, it's

> not a post anymore and easier to read for the average orthotist

> (hehehe...). It's looking good and while not yet finished for

publication,

> it's on it's way to the masses! Thanks Naomi for all your hard

work!

>

> OK - I'm just a little pissy tonight after today, I hate arguing

with

> medical professionals. Contrary to popular belief lol! I guess

that's why

> I'm here though, because while life would be easy with perfect

> caregivers... if no one else here is going to champion this

wonderful

> cause... it may as well be me so I have something to do :~} Oh,

and I

> forgot to call Darby today, sorry all. I'll try tomorrow. While

I'm at

> the Zoo in the freaking RAIN with my son's preschool class. And

it's

> totally typical Portland rain too, not a lot... just nearly

> constant... should be a fun morning...

>

> Thanks for listening to my rant, if you got this far.

>

> Kori

[Guest guest]

Kori,

I think Daiga and pretty much covered what's been sent to the group as

far as " official " word on how to set up the FAB. I did email Dr Ponseti asking

if he had any insight, but never heard back and I haven't pressed the topic. I

do like Jay Markell's response, though I don't see why the fixed-length bars

can't come with a note attached that says " Take the shoulder measurement and add

2 inches to get the right bar length " .

None of these things, of course, say that what is most important in all of this

is the child's comfort and that parents know their children. And that, darn it,

the orthotists and the doctors are not the ones whose children are whimpering

and outright bawling at night because their FAB is uncomfortable. Grrrrrr. The

only place that gives an indication about a child's comfort is in the Global

Help booklet where it says not to make it too short.

All these orthotist issues are getting to be a hot topic with me just about now.

Our guy, when he saw Jonah's home-made bar, just about keeled over on the spot

and still wanted to insist that we take a shorter bar. Why do you think we went

to the trouble of making a longer bar? Then was pretty miffed when the doctor

told him to " just give them whatever they want " . AND wouldn't bend the bar for

me since I was so clearly capable of doing that myself. Now, I sort of wish I

had insisted that he bend the bar, but I really was speechless. Besides, they

do the single curving bend that makes it hard for the kids to stand on. I tried

to show him copies of the research I've done, but he told me he already had

that.

Does anyone know about specific training for orthotists? I know they have

professional meetings and journals.

It's been raining buckets over here too, but I haven't had to water my garden at

all so far this year.

Naomi

The Family

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

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