Re: Re: Brand New to Site: our story for !!

[Guest guest]

Hi

I just wanted to chime in on the issue of discomfort with the shoes and bar at

night... we had a similiar issue happen when our little girl was about 3 month

old... she did great throughout the casting and the full time wear of the DBB

(23/7)... then when we dropped down our hours to 12/7... she did fine for the

first 3 nights then she started screaming bloody murder and we didn't know what

to do... we would take it off when it got really bad also BUT... I look back now

and I think her foot was fully corrected at first but I think it started to

relapse and we didn't realize it.... so we actually took off the bar completely

and thought we just couldn't do this anymore and of course her foot relapsed so

imagine how frustrating that was after all of that work of casting and it was a

total waste of time... so we eventually found this group ( Thank you God for

that)....and we were 'talked' into starting over again and so we did when she

was 10 months old and her foot is totally

corrected and looks awesome... it was very hard to go through casting again and

the tenotomy and I was very nervous to start the shoe wear again but I was

pleasantly surprised that she did GREAT.... not a problem with it... everytime

she would cry I would think , oh boy ...here we go again.... but it has all been

such an easier time this time.... so one of the problems was that we dropped the

hours too quickly.. we didn't realize how important the wear of the shoes/bar

were in the begining....BUT what we also realized is that Avery has acid reflux

really bad... we had no idea until she was about 7 months old.... she would arch

her back when she was a baby and fuss (from time to time) but never really spit

up too much so we wouldn't of realized that was an issue... so we finally got

her on medication and she was a changed baby... then the casting over again

started all about the same time and it just was never an issue from that point

on...

So bottom line is that it could be another issue and you just don't realize

it.... not just you but all of us parents just sometimes just don't really

realize what these babies are going through... we all want to blame it on the

shoes/bar but like everyone else has said from what I have read is that it

shouldn't be a situation we have to 'deal' with...when the kids are miserable it

is usually a big warning sign of the foot not fully corrected (and our eyes

might not be able to see it) so like some of the other moms have said try to dig

deeper and see if there could be another issue... when the babies are young and

we don't get sleep and our doctors are no help... it just leaves us in the dark

with a crying baby and we as parents are our kids only advocates so get out and

get a second opinion... I am actually going to go see Dr Ponsetti myself as of

now even though we feel that Avery's feet are fully corrected... she is 1 1/2

and I just want to make sure before she gets any older I

want the Master to look at her feet and tell me if they are as perfect as I

think they are....they look awesome and you can't even tell which one was

clubbed as of now.... there is light at the end of the tunnel and just know that

all of us our going through the same kind of issues.... just know that you are

not alone in this... I am forever grateful for the support from this group so I

do hope this helps a little... best of luck to you and your little guy!!! we are

with you on this journey.... keep us posted on what you find out.....

I hope you can follow my story...it jumps around a little!!!

Hundley wrote:

, I just wanted to say that was a great response. We're certainly not

new to this and haven't had too many problems but I still found comfort in your

paragraphs!! DITTO.

and Claire wrote: ,

The doctor who said " they all hate it " is way off, in my view. if

everything has been done right, there shouldn't be continuing

problems. If there are, it often indicates something is wrong and

needs to be fixed.

The (unscientific) poll done here at the site on adjustment time to

the brace (in the Polls section) found that the great majority of us

had no problem with the brace beyond the first few days to a week. my

daughter is 5 and has never had difficulty. No screaming, no hating

it, no sleepless nights, no crying, no blisters, nothing. I attribute

this to her having her foot completely corrected and being put in a

brace set up right from the get-go, with no delay before going into

it, and virtually no time out of it once she got it to allow for even

the slightest relapse, especially at the very beginning.

Honestly, I am not trying to minimize your problems .. I KNOW they

are real. It's so hard when your baby is miserable and you can't help

her, and you're both losing sleep. My point is to let you know that

unusual difficulty; continuing, inconsolable crying; extreme trouble

adjusting to the brace, is NOT normal. So you shouldn't think you

have to endure it. It's usually a warning sign. If the feet have

relapsed even a little, for example, it can make the baby very

uncomfortable. it's definitely something to get to the bottom of.

As to your concerns about long term use.. I can see why you'd be

dreading it, if you were to have to deal with the problems you're

having right now, forever. It might be hard to imagine to you now,

but to me using the brace has become not much different than putting

on my daughter's pajamas. Or brushing her teeth or combing out

tangles from her hair. Or wrangling her into and out of a car seat.

All those things are tedious in their own way, but have to be done,

daily, for many years.

I'm sure when carseats first became required, some older parents

said, " Are you kidding? Use this every time we get in a car till age

3, age 4, and NOW they're saying even longer? Till first grade,

second grade? I can't imagine! No way! " Yet we now think nothing of

it and wouldn't do it any other way.

My way of viewing this .. my child WAS, after all, born with a

congenital condition that requires some special care. It's not much,

really, in the grand scheme of things, once initial correction is

completed.. other conditions or illnesses require a whole lot more.

With this, we end up having to use some bedtime shoes for a while.

Maybe it'll help to think about it that way.

Hope this helps. Hang in there! and let us know if we can help you

get to the bottom of it..

>

> Um, they don't " All hate it " and it's not just something you have

to suffer through for the next four years - that's why I think it's

something more.

>

> > ----- Original Message -----

> From: cricketsmom05

> To: nosurgery4clubfoot

>Even the family practitioner

> that has gone through this says that it is the bar and that they

all

> hate it. Is this just something that we have to live with, and

have

> to live like for the next 5 years? (ortho doc says she will

probably

> be in DBB at night until first grade.That seems like forever

since

> she is only 10 months!)No sleep for baby and mommy = many days of

> tears. Help!

>

>