Re: One Year Birthday...boring update!

February 16, 2006

Your story is so inspiring to read and I wish that all of us could have the

experience! I think they should start automatically screening for clubfoot so

that all parents could be prepared well in advance such as you were. My

biggest regret in my son's early treatment is that we didn't have the chance to

look into anything ahead of time. Thanks for sharing this.

Given wrote: Our daughter Rachael turned one

today and I thought some on here

would appreciate an uneventful and boring update with no problems

whatsoever.

Rachael was born last Feb 15th with severe (but typical) bilateral

clubfoot. We knew from the 20 week sonogram and were prepared going

in. Like many of you, a simple web search revealed the wonders of

the Ponseti method and this newsgroup. We quickly read up on the

procedure and started calling trained doctors in the NYC area (we

are in NJ.)

We were not startled at birth and her feet came out exactly as the

many pictures looked. We felt then (and now) that she was otherwise

perfectly healthy and feet are pretty far down on the list of all

the things that CAN go wrong with childbirth. We brought her to see

Dr. Scher in NYC a few days after birth and the journey began.

She had the most severe Pirani score in both feet (6?) but we were

told that this should be corrected in the typical number of

castings. The first cast went on much easier than I ever expected

and watching the manipulations was just about the most fascinating

thing I've ever seen done with the bare hand and a tender child.

Rachael didn't mind a bit and off we went in the casts. She had

never known anything else but the casts since she'd only been around

a few days and didn't even seem to notice. The carseat still worked,

the PJs still fit...and hey...no one told us diapering was easier

with a handle!

She went through five weeks and five casts and really never seemed

to notice they were ever on. They never broke, ripped, tore or

flaked. Her skin stayed baby pink the whole time. Her favorite part

was getting them sawed off and the casting techs explained that many

children seemed to like the soothing vibrations. Dr. Scher said the

feet looked good after the five casts and we were on to the

tenonotomy. This sounds much worse than it really is. A few minutes

of crying and what is left is really a pin-sized dot on the back of

both heels. She went into the final three week cast and there didn't

seem to be any tenotomy discomfort. No swelling...not even any

bleeding in the cast.

At the " tenotomy " visit we did the foot impressions for the

sandals. We read up and decided to go with these instead of the

Markell shoes. At this point the insurance seemed to be a crapshoot

with some getting reimbursed and others not, but we felt that even

if we had to pay for them all that they looked to be a lot more

comfortable, lighter and easier to adhere to the bracing guidelines.

We sent off the impression kit and our check to the magical clubfoot

state of Iowa and 2 1/2 weeks later the stylish Birkenstock-meets-

babysnowboard device arrived.

She went out of the final cast and into s with no problems

of transition at all. Maybe it is because of her disposition or

maybe because they are even lighter than the casts, but she didn't

even seem to notice having them on. Her heel went all the way back

and down from day one and putting them on was much easier than I

ever expected. The key seems to be keeping the middle strap very

tight and they don't slip at all...ever..not once. The only thing we

ever had to adjust was poking extra holes in a future pair. She is

on her third pair and went from 23 hours usage...to 16...to 14...to

12 today. I really can't point to anything really eventfully

negative in the whole experience. She never seemed to fuss in them,

she never got any blisters or open sores. The occasional reddish

pressure mark caused by bunched sandal tongue (and a sleepy parent

putting them on) seemed to always go away in a day or so and I'll

take that for correcting feet that were pretty much sideways and

backwards :-) It is really amazing how fast they learn to get

around in the bar. She was cruising around on furniture at 7-8

months and actually seemed to have MUCH better standing balance than

her 6 year old (non CF) sister had at that age. I don't know if bar

training gave her this stability, but it seems to be the case.

After a few phone calls (but nothing too bad when you're talking

insurance!) we got the s and the bar approved for complete

reimbursement. provided the most successful codes and

they worked like a charm. This is another thing in this process that

we all can't ever overlook. We can easily get communications back

from the pioneer of the method AND the manufacturers of the braces

just about the same day! That is pretty amazing in a red-tape

medical profession normally layered with middle-people and

bureaucracy. All three pairs of shoes and two bars have been

completely reimbursed to the penny.

The last doctor visit showed the same boring progress and complete

success. Dr. Scher said her feet were totally corrected and no one

looking at them would even know she had clubfoot. Our pediatrician

is also pretty amazed at the outcome. Everyone who ever saw her feet

the first week is pretty much in agreement that this process is a

minor miracle. Of course I know that it doesn't work for everyone

and we could always have a relapse, but up to this point it has been

miraculous. Tonight I was looking back at delivery room pics from

last Feb 15th and remembering the happiness, but also the

uncertainty. Last year I could never have imagined writing

this " one year update " with such a lack of drama and nightmares to

tell. It is pretty boring, but boring seems to be good in this

case! :-)

and Suezette

New Jersey, USA

" Happy Birthda Rachael! "

born bilateral CF on 2/15/05

February 16, 2006

That is absolutely wonderful. I hope next year's birthday is just as boring

for Rachael.

Where in New Jersey are you? We live in Bergen County.

_____

From: nosurgery4clubfoot

[mailto:nosurgery4clubfoot ] On Behalf Of Given

Sent: Thursday, February 16, 2006 12:56 AM

To: nosurgery4clubfoot

Subject: One Year Birthday...boring update!

Our daughter Rachael turned one today and I thought some on here