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Welcome Sheila.

I hope you find what you are looking for here. I can tell you from my experience that this was the perfect place for me to be. I am glad I found it as it gave me a new lease on life

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HI SHEILA IM CURT FROM ST. MARYS HAD SURGERY 21 MON THS AGO WOULD BE GLAD TO

DISCUSS MY EXPERIENCE MY NUMBER IS GOOD LUCK WITH YOUR

DECISION.

New to Group

> Hi everyone, Sheila here. I am new to the group and looking into the

> various options that are avaiable for WLS. I was on the web site

> learning about duodenal switch and thought i would join the group and

> learn about it from the patinets perspective.

> Thanks, Sheila Winnie

> NW Ohio

>

>

>

>

>

>

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Welcome Sheila!! Where are you in NW Ohio? I live in Dublin, and we have

alot of wonderful girls here in Ohio. Dr. Maguire (Kettering hospital) even

has a list of past, and future patients, DS_Maguireegroups if you

wanna meet some more Ohioans, check it out too. Feel free to ask questions,

this is a very supportive place, and everyone tries to help any way they

can.

Again welcome Sheila!

Fondly,

Loriann

New to Group

Hi everyone, Sheila here. I am new to the group and looking into the

various options that are avaiable for WLS. I was on the web site

learning about duodenal switch and thought i would join the group and

learn about it from the patinets perspective.

Thanks, Sheila Winnie

NW Ohio

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In a message dated 1/25/2001 10:16:57 PM Eastern Standard Time,

duodenalswitchegroups writes:

<< Welcome Sheila!! Where are you in NW Ohio? I live in Dublin, and we have

alot of wonderful girls here in Ohio. >>

Sheila, I'm from Waldo, Ohio and belong to the Maguire group too. Welcome.

Jackie Ward

jward533@...

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Hi Sheila here, thanks for the welcome. I know that i am going to have

wieght loss surgery , just not sure which one yet. I am looking into this

surgery or the mini gastric bypass. Not sure which one yet. Was hoping to

find one that is done lap cause i scar real bad on the inside when i am cut.

I have never had abdominal surgery yet but had to have a historectomy after

2 previous surgerys and they said that i was full of scar tissue like i had

been cut on 5 or 6 times . Thankfully they where all bikini cut and the

scars where low but they had to take out part of my bladder because of the

adhesions. Sheila

>From: Cutie22@...

>Reply-To: duodenalswitchegroups

>To: duodenalswitchegroups

>Subject: Re: New to Group

>Date: Thu, 25 Jan 2001 18:56:14 EST

>

>Welcome Sheila.

>

>I hope you find what you are looking for here. I can tell you from my

>experience that this was the perfect place for me to be. I am glad I found

>it

>as it gave me a new lease on life

>

>

_________________________________________________________________

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Hi Sheila here, thanks for the welcome. I know that i am going to have

wieght loss surgery , just not sure which one yet. I am looking into this

surgery or the mini gastric bypass. Not sure which one yet. Was hoping to

find one that is done lap cause i scar real bad on the inside when i am cut.

I have never had abdominal surgery yet but had to have a historectomy after

2 previous surgerys and they said that i was full of scar tissue like i had

been cut on 5 or 6 times . Thankfully they where all bikini cut and the

scars where low but they had to take out part of my bladder because of the

adhesions. Sheila

>From: Cutie22@...

>Reply-To: duodenalswitchegroups

>To: duodenalswitchegroups

>Subject: Re: New to Group

>Date: Thu, 25 Jan 2001 18:56:14 EST

>

>Welcome Sheila.

>

>I hope you find what you are looking for here. I can tell you from my

>experience that this was the perfect place for me to be. I am glad I found

>it

>as it gave me a new lease on life

>

>

_________________________________________________________________

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Hi Sheila here, I am from paulding ohio. What is the Maquire group. I am

on here plus the mini gastric bypass group.

>From: jward533@...

>Reply-To: duodenalswitchegroups

>To: duodenalswitchegroups

>Subject: Re: New to Group

>Date: Fri, 26 Jan 2001 00:03:26 EST

>

>In a message dated 1/25/2001 10:16:57 PM Eastern Standard Time,

>duodenalswitchegroups writes:

>

><< Welcome Sheila!! Where are you in NW Ohio? I live in Dublin, and we

>have

> alot of wonderful girls here in Ohio. >>

>Sheila, I'm from Waldo, Ohio and belong to the Maguire group too. Welcome.

>

>Jackie Ward

>jward533@...

>

>

>

_________________________________________________________________

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  • 4 months later...
Guest guest

Hi Kathy

Welcome to the list.

I hope that your daughter continues to do very well.

I am so sorry to hear that you are having health related difficulties as

well. Being in a wheelchair and trying to keep up with even a healthy child

would be very difficult.

I will keep you in our thoughts.

Take care

Jen

Mommy of 7, including ph 2 with CF, Mallory 3 with CF, RAD, GERD, OSA,

port-a-cath, currently on home ivs but still having a wonderful summer;

5 with CF, port-a-cath; 6, Miranda 9, Mollie 8 with Type 1

diabetes (juvenile diabetes) ; Madison 5 yo ; also aunt to 4 yo with CF

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Guest guest

kathy,

Hello and welcome to the group. Lots of support here and tons of

info. I am glad to see that you found the list, and look forward to

hearing more from you.

-mom of 4, one with CF, and #5 due in July with poss. CF

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Guest guest

How hard this is for you. I am soooo sorry this has all happened. How did

the

doctor's negligence cause your inability to walk again....? Is there any

legal

recourse for you to at least have him/her bear the expense of additional

help.

How long will your mom be able to continue .Bless her heart .It is

wonderful

she is there for you & your precious wee one. I do hope your 's

dad

does help some.

YES, You are right about the list group. There are several /many single

parents

with children with CF. Some have CF themselves ....some have more than 2

children with CF as well,- sooo you will have many that will be a comfort

to you

as you will be to them..

You said it....been there done that kind of help.!! it is very hard for

those who are

not in your shoes to understand completely BUT -those on these lists have &

do. That's real support. WE WELCOME you with open arms & hearts.

What CF center do you go to? Where do you live?-Maybe someone on list lives

near you. I will look forward to seeing you post again.

I am a grandmom of a 16++ year old gal who has CF and am a patients

advocate.

I also do a newsletter the INFORMER..Not a fancy one as so many are , but

it is full

of " STUFF " .kinda like a folksy note (16 pages tho):):):):)There is no

charge ,but-----I

do need your snail mail address.

LOVE & HUGS,

GrandmomBEV

New to group

My name is Kathy and I am a single mother of two. My oldest son is 22

years old and as healthy as a horse. My youngest daughter is 4 years

old and has CF. She was diagnosed at birth. I am divorced so they

have different fathers. I didn't know anything about CF until

was born. I have learned a lot since. Everyday has been a

learning experience. I know it's hard when both parents are there

through the bad times, but be very thankful that your not alone. I

have never been in a discussion or support group. I have always

needed one though.Every parent going through this needs a support

group,and who better than other parents going through the same thing.

is doing fine right now. She has only been in the hospital

twice since she was born. Once for 2 weeks next for 30 days. I was

told from day one that she would only do as well as I kept her. I

believe in her wearing her mask at approiate times. She understands

that this protects other CF kids not just her. This past year has

been extermely hard for us because I have been wheelchair bound due

to Doctor negelience. Looks like it's going to be permanent. So its

been a laerning experience for us all. Thank goodness for my mother

because she takes care of me and helps me with . So now you

can see why I need a support group.Thanks for listening to me ramble

on,I hope I didn't bore you to tears. If there is anything you'd like

to know from me just let me know. P.S. sorry about the spelling I

was in a hurry.

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

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Guest guest

Hi , Thanks for welcoming me to the group. I am in Alabama. We are quite

a bit apart there. I feel like you, I might not need the knowledge now but

who knows in the future. My daughter if fine at the present time.

Most of the time you would never know anything was wrong with her if you

didn't just know it. Which I am very thankful for. I look forward to hearing

from you again. Kathy

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Guest guest

Kathy,

Welcome to this list. I also have a daughter who will be 4 in August and

she has cf and I have a son who is 7 in 15sleeps! and he does not have cf.

I'm sorry to hear of your illness/injury and it must be alot to deal with

ontop of cf. Your lucky your mum is there to help. What would we do

without our lovely mum's? Where do you come from? I'm in Australia. All

the people here post such informative stuff. Some thing's you may not be

needing yet as some of the kid's have worse symptoms than other's but I

still find it interesting and pray that we never need the suggestions, but

if we do then we are informed. Welcome again.

New to group

> My name is Kathy and I am a single mother of two. My oldest son is 22

> years old and as healthy as a horse. My youngest daughter is 4 years

> old and has CF. She was diagnosed at birth. I am divorced so they

> have different fathers. I didn't know anything about CF until

> was born. I have learned a lot since. Everyday has been a

> learning experience. I know it's hard when both parents are there

> through the bad times, but be very thankful that your not alone. I

> have never been in a discussion or support group. I have always

> needed one though.Every parent going through this needs a support

> group,and who better than other parents going through the same thing.

> is doing fine right now. She has only been in the hospital

> twice since she was born. Once for 2 weeks next for 30 days. I was

> told from day one that she would only do as well as I kept her. I

> believe in her wearing her mask at approiate times. She understands

> that this protects other CF kids not just her. This past year has

> been extermely hard for us because I have been wheelchair bound due

> to Doctor negelience. Looks like it's going to be permanent. So its

> been a laerning experience for us all. Thank goodness for my mother

> because she takes care of me and helps me with . So now you

> can see why I need a support group.Thanks for listening to me ramble

> on,I hope I didn't bore you to tears. If there is anything you'd like

> to know from me just let me know. P.S. sorry about the spelling I

> was in a hurry.

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

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Guest guest

Hello and welcome. I just joined the group too - very supportive people here.

I will keep you and your daughter in my prayers. Best to both of you. I

have a 15 mo. old with CF - just diagnosed a couple of months ago. I look

forward to talking with you more. Carey (Mom to Liam - 15 mo. w/CF)

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Guest guest

Kathy, ...what a hard thing to deal with. Your story has touched my

heart, and it's a shame for me that we do not live closer so that I

could get to know you in person. I am from MN.

You sound like a very strong woman, and is lucky to have you.

Hang in there, and talk any time.

-mom of 4, one with CF, and baby due in July with poss. CF

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Hi , Thanks so much for your kind words. I try very hard to be strong. I

have to be for she needs me as much as I need her. I feel as though

I'm the lucky one to have her. She is such a special child but then again I

could be a little prejudiced. It has helped so much being able to chat with

all of you in the group. It feels like one big happy family. I'm an only

child so that means alot to me. I hpray that your new baby will be healthy.

But if not we will deal with it when the time comes. I'm going to close for

now and check on , she's on the porch playing. Kathy

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Guest guest

Hi There I am so sorry for you and 10-15 yrs that is

horrible I am thinking what if you start to make a

lot of noise via tv radio etc. this sounds just like

one of those television shows I've seen on dateline

primetime etc maybe it would make make the hospital or

doctors worry and speed up the process???

--- Blairkatlou@... wrote:

> Bev thanks so much for your kind words. My primary

> care doctor would

> not send me to another doctor or hospital to see

> what my real problem

> was until I had lost use of both feet and lost bowel

> and bladder

> control when he finally did I had to have

> emerengency surgery because

> the bone had collasped around my spine. I had to

> have three surgerys

> within two weeks. I spent from Sept. 19 to Nov. 20th

> in the hospital

> and rehab. I still have no control of my right foot

> ,Semi feeling in

> the left foot,( I can only wiggle three toes on that

> foot) ,but not

> enough to control it. Still do not have any bowel or

> bladder control.

> I have to wear braces on both feet up to my knees to

> have any control

> of my feet. I " ve talked to alot of lawyers and they

> say I have a good

> case but it will take years to get anything done

> they said it could

> take up to 10 to 15 years because the doctor could

> drag it out that

> long. Even though the nerosurgeon that did my

> surgerys said that if I

> could have gotten to him sooner that I wouldn't be

> having this

> problem.I blame alot of this on my insurance company

> also. But enough

> about me. We live in Alabama and goes to

> Childerns Hospital

> of Alabama in Birmingham Alabama. She has been going

> there since

> birth. Her CF team is wonderful. Her doctor is

> Doctor Lyrene.

> I wouldn't want to trade her CF team or Dr. Lyrene

> for anything, they

> have been with her since birth and I believe they

> are why she is

> doing so well today. As for 's father He's a

> big

> disapointment. We haven't seen him in 4 years. He

> saw her once in the

> hospital when she was 2 days old and said he

> couldn't handle the fact

> that she was sick so he took the cowards way out. He

> left and hasn't

> been back since. But then again he's not welcome

> back. Thanks for

> letting me bend your ear. Sincerely, Kathy---

>

>

>

>

>

>

> In cfparents@y..., " bev " <bevd@h...>

> wrote:

> >

> >

> > How hard this is for you. I am soooo sorry this

> has all happened.

> How did

> > the

> > doctor's negligence cause your inability to walk

> again....? Is

> there any

> > legal

> > recourse for you to at least have him/her bear

> the expense of

> additional

> > help.

> > How long will your mom be able to continue .Bless

> her heart .It is

> > wonderful

> > she is there for you & your precious wee one. I

> do hope your

> 's

> > dad

> > does help some.

> > YES, You are right about the list group. There

> are several /many

> single

> > parents

> > with children with CF. Some have CF themselves

> ....some have more

> than 2

> > children with CF as well,- sooo you will have

> many that will be a

> comfort

> > to you

> > as you will be to them..

> > You said it....been there done that kind of

> help.!! it is very

> hard for

> > those who are

> > not in your shoes to understand completely BUT

> -those on these

> lists have &

> > do. That's real support. WE WELCOME you with

> open arms & hearts.

> > What CF center do you go to? Where do you

> live?-Maybe someone on

> list lives

> > near you. I will look forward to seeing you post

> again.

> > I am a grandmom of a 16++ year old gal who has

> CF and am a

> patients

> > advocate.

> > I also do a newsletter the INFORMER..Not a fancy

> one as so many

> are , but

> > it is full

> > of " STUFF " .kinda like a folksy note (16 pages

> tho):):):):)There

> is no

> > charge ,but-----I

> > do need your snail mail address.

> >

> > LOVE & HUGS,

> > GrandmomBEV

> >

> >

> >

> > New to group

> >

> >

> > My name is Kathy and I am a single mother of two.

> My oldest son is

> 22

> > years old and as healthy as a horse. My youngest

> daughter is 4 years

> > old and has CF. She was diagnosed at birth. I am

> divorced so they

> > have different fathers. I didn't know anything

> about CF until

> > was born. I have learned a lot since.

> Everyday has been a

> > learning experience. I know it's hard when both

> parents are there

> > through the bad times, but be very thankful that

> your not alone. I

> > have never been in a discussion or support group.

> I have always

> > needed one though.Every parent going through this

> needs a support

> > group,and who better than other parents going

> through the same

> thing.

> > is doing fine right now. She has only

> been in the hospital

> > twice since she was born. Once for 2 weeks next

> for 30 days. I was

> > told from day one that she would only do as well

> as I kept her. I

> > believe in her wearing her mask at approiate

> times. She understands

> > that this protects other CF kids not just her.

> This past year has

> > been extermely hard for us because I have been

> wheelchair bound due

> > to Doctor negelience. Looks like it's going to be

> permanent. So its

> > been a laerning experience for us all. Thank

> goodness for my mother

> > because she takes care of me and helps me with

> . So now you

> > can see why I need a support group.Thanks for

> listening to me ramble

> > on,I hope I didn't bore you to tears. If there is

> anything you'd

> like

> > to know from me just let me know. P.S. sorry

> about the spelling

> I

> > was in a hurry.

> >

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

> > -------------------------------------------

> >

> >

> > The opinions and information exchanged on this

> list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY

> MEDICATIONS OR

> TREATMENTS.

>

=== message truncated ===

=====

, Mommy Of The Great!

__________________________________________________

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  • 2 years later...
Guest guest

Hi Candy,

I too am glad to find someone who is familiar with Dr. Jarka. I have not been

to her other office yet and hope that I can get in sooner than later. I was

also glad to hear that you are in Wichita. I grew up in Sterling, KS, two hours

from you.

Penny

Candy wrote:

Hi Penny...

First, I understand how hard it is to deal with a toddler in the

DBB. Lately, Cole at 15 months has been waking up crying at night.

Lastnight this happened and we took the DBB off and instant relief.

I think my husband tied the laces too tight, I usually do it. I

don't have much advice for you, just good luck at your next

appointment.

Speaking of....we take Cole to Dr. Jarka too!!! I was so excited

when I read that. We started treatment in Oklahoma where we lived up

until last Labor Day, but when we moved we had to find a Ponseti

trained doctor. Dr. Jarka is the only one in Kansas so we travel

there from Wichita every 6 months. We have to pay the $58 office

visit out of pocket because she no longer takes First Guard. She

used to at Children's Mercy but stopped working from that clinic.

But, the drive there and her expertise is well worth it for perfect

little feet. Next time you see Dr. Jarka, explain your concerns with

the DBB. She's a very understanding lady and we just love her!

Great to know there is someone on the list now that I can share ortho

stories with. :)

Candy and Cole bi cf, 3/30/2002

> I just joined this group as suggested by someone on another group.

> I have a 19 month old boy that has a left club foot. He was casted

> every week for several months and then he was put in a boot and

> bar. He wore the boot and bar 23 hours a day for a few months.

Now

> he is supposed to wear the boot and bar at night, needless to say I

> have been a bad mom and have not made him wear it. It is hard to

> make him as he sleeps restlessly and wakes in the night. It is

time

> for a check up and I have dreeded going because in our last visit

> the DR told me that he might need to have surgury to move the

tendon

> over so that his foot will not turn in. We have been fortunate and

> not had to have surgury. It was suggested to me that he may need

to

> be cast again, I was unaware that this was an option.

> I am in the Kansas City MO area and our current DR is Jarka.

> If anyone has suggestions for me I am here to listen.

> I put in the shoe last night and he slept good, but this

> morning he had red spots on his foot, so I know that that needs

> adjusting, but our insurance does not cover the shoes.

>

> Penny

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  • 2 months later...

Hi Carole-

I would be concerned more about the walking on the outside of his feet than

the inward toeing. Why does your doc feel that it is " okay " for your son to

be walking on the outside of his feet? Can you take pictures and post them

for us?

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: new to group

>Date: Wed, 17 Sep 2003 01:56:46 -0000

>

>

>

> Hello, I'm new to the group:)

>

>

> I am the mother of a 14mo old son who was born with both feet that

>were club. I went into the pansetti method of correction when he was

>1week old. We are still in the braces at night. I have seen a great

>improvement with his feet. But, he still walks on the outside part

>of his foot and the front of his feet turn inward. Am I being a

>little to picky? Is this normal? His doctor says he is very pleased

>with his feet. We only go for ck ups every six months. Our next

>visit is Dec 10. Thank you:)

>

>Carole, In Hawaii

>Mom of Kristpher:)

>

_________________________________________________________________

Compare Cable, DSL or Satellite plans: As low as $29.95.

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,

Here is a link to a message about relapses in the Ponseti method.

Even if your original doctor was not using the Ponseti method, the

principals involved in relapsing should still be the same.

http://groups.yahoo.com/group/nosurgery4clubfoot/message/13223

If you are now in North Carolina and would like to do some follow-up

with a Ponseti method doctor, here is one that I would recommend.

Frick, M.D.

5939 Cabell View Ct.

Charlotte, NC 28232-3286

Tel:

Here is a reprint of a prior message about the Ponseti method

parents group poll on when their children first began to walk.

Regarding when you should expect your child to be walking.

, our son with bilateral clubfoot, is the youngest of 6

children. My wife had kept a detailed baby firsts calendar of all 6

children and we used it to compare 's baby firsts to our prior

5 children. was first to roll over both directions, but we

disqualified him because it was FAB/DBB assisted. In all other

areas, he was never the earliest or latest of our other children in

sitting up, crawling, going up steps, standing, walking etc.

All children begin walking a different times. There had been a

discussion and poll taken at the Ponseti method parents support

web site on when our children first walked and the poll results

seemed within the range ages that would be expected. The poll

results (with 50 responses) were as follows: These were the poll

results as of the closing of the poll which was sometime after July

2002.

Before 12 months 9 18.00%

12 months 8 16.00%

13 months 12 24.00%

14 months 8 16.00%

15 months 2 4.00%

16 months 2 4.00%

17 months 3 6.00%

18 months 2 4.00%

19 months 1 2.00%

20 months or more 3 6.00%

http://groups.yahoo.com/group/nosurgery4clubfoot/surveys?id=778805

A developmental web site at Emory University in Atlanta gives their

lists of typical developmental time frames at

http://www.emory.edu/PEDS/NEONATOLOGY/DCP/mileston.htm

They say that 13 to 18 months is a broad guideline of when children

should " walk alone with heels flat on the floor " .

If you are using the Ponseti method there is also a Ponseti method

parents support group at

http://groups.yahoo.com/group/nosurgery4clubfoot/

and (3-17-99)

> I am new to the group and forgot to tell you background on my

son. He is 14 mos. He was casted from 6 wks-12 weeks. At 12 weeks

he had a surgery (tendon release) (10/31/02). Casted for 4 more

weeks. He was in dbb after that. He has regressed though. They

want to restart the entire casting process again....has anyone had a

baby over a year casted? How about casting for the second

time...anyone know about that?

>

> Thanks and nice to meet you! We live in Raleigh, NC. We used to

(until a month ago) live in Ventura, CA.

>

> There is some poll that talks about when your club foot baby

walked- does anyone have a link to that?

>

> Thanks!

>

>

>

>

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,

First of all, welcome to the group. My son is 5 months old and in

the DBB. We also live in Raleigh. I will be happy to pass along my

phone number in an email and we can chat. Just give me an email

(jenndimeo@...) if you are interested and we can discuss local

doctors.....

Jenn

Virginia 27 mths, Drew 5 mths bi c/f

> I am new to the group and forgot to tell you background on my

son. He is 14 mos. He was casted from 6 wks-12 weeks. At 12 weeks

he had a surgery (tendon release) (10/31/02). Casted for 4 more

weeks. He was in dbb after that. He has regressed though. They

want to restart the entire casting process again....has anyone had a

baby over a year casted? How about casting for the second

time...anyone know about that?

>

> Thanks and nice to meet you! We live in Raleigh, NC. We used to

(until a month ago) live in Ventura, CA.

>

> There is some poll that talks about when your club foot baby

walked- does anyone have a link to that?

>

> Thanks!

>

>

>

>

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Great- Nice to meet you! Congrats on your son- 5 months is such a fun age. It

looks like you have an older daughter too? We have four children 8,6,3 and 1.

Girl, Boy, Girl, Boy. We live in North Raleigh- we have been here since the

middle of August. Who is your son's doctor?

Re: new to group

,

First of all, welcome to the group. My son is 5 months old and in

the DBB. We also live in Raleigh. I will be happy to pass along my

phone number in an email and we can chat. Just give me an email

(jenndimeo@...) if you are interested and we can discuss local

doctors.....

Jenn

Virginia 27 mths, Drew 5 mths bi c/f

> I am new to the group and forgot to tell you background on my

son. He is 14 mos. He was casted from 6 wks-12 weeks. At 12 weeks

he had a surgery (tendon release) (10/31/02). Casted for 4 more

weeks. He was in dbb after that. He has regressed though. They

want to restart the entire casting process again....has anyone had a

baby over a year casted? How about casting for the second

time...anyone know about that?

>

> Thanks and nice to meet you! We live in Raleigh, NC. We used to

(until a month ago) live in Ventura, CA.

>

> There is some poll that talks about when your club foot baby

walked- does anyone have a link to that?

>

> Thanks!

>

>

>

>

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  • 2 months later...

congradulations on reaching the milestone f the DBB. My son has bilateral

clubfoot and started casts at 10 days but didn't go into the DBB until 5 1/2

months because there were other problems with his foot. Anyway I don't want to

be

discouraging but the 1st week in the DBB was the worst of everything. My son

cried the whole week. It was pretty tough. From what other moms have posted, it

seems they had the same thing. But after that week, things were back to

normal. He's so happy now, I guess he doesn't know the difference. He even

turned

over from back to tummy after 3 weeks. We were so proud. All the moms say it

doesn't slow theit development so don't worry.

Good Luck

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  • 3 weeks later...

Welcome, Jenni, Tim & Devin!

It's hard to predict how Devin will react when his last cast comes

off. His legs will most likely be sore and his skin might be

sensitive to the touch. I think most parents use baby Tylenol or

Motrin (or alternate) to help with the sore muscles. Your doctor

should be able to help you with suggestions and dosage. Everyone is

always anxious to get their baby in the bathtub...but Devin might not

like the sensation of the water on his legs right away- so you'll

just have to see how he does! :)

Hopefully he'll adjust to the brace without too much trouble. Some

babies have no problems, some take a day, some take a week or

longer...just depends on the baby! :) We're here to give you

suggestions or just support if you need us! (Hopefully you won't!)

I never used any " special " lotion for 's leg, but Eucerin and

Avedo baby are my favorites for extra dry skin. Clothes- you can use

any outfits that don't have the feet built into them. The most

convenient are the outfits without closed ankle cuffs that have snaps

all the way around the crotch and down the legs. You can use regular

pants or sweat-pant style too, you'll just have to take the bar off

if you change his outfit with those. If you find some buntings that

are wide at the bottom, you can use those for night-time jammies too.

You can find some tips/hints on my clubfoot site at

http://ponseticlubfoot.freeservers.com/

I hope this helps!

> Hi my name is Jenni and my husbands name is Tim. On October 1,

2003

> we welcomed our new baby boy in to the world. Devin was born with

> severe bilateral clubfeet. We have been members in another group

and

> recently someone suggested this group to us.

> Devin sees Dr. Noonan here in Madison Wisconsin.

> Devin has been in casts since he was 7days old. Going through

weekly

> cast changes. On December 2, 2003 he had his tendon release done

> under general. His final casts will come off on Christmas Eve. We

> are so excited, what more could you want for Christmas. However we

> both were wondering what to expect. How sensitive will his legs be

> now that he won't have casts on them? Is there a lotion out there

> that works better for the dry skin? Will we need special clothes

for

> him to wear while in the DBB? What will his mood be like after the

> cast come off? Will he need Tylenol after?

>

> Anything you might find helpful for us would be greatly

appreciated!!

> Thanks

>

> Jenni, Tim, and Devin

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What a great Christmas gift, getting to hold a tiny baby without the

extra plaster weight. I can remembeer it clearly. Our son Hank is

now 11 months and doing great, he is in the bar just at night at this

point and we are loving life. His casts came off in April, yes our

first night was fussy with all the freedom. Our Doc told us to give

him a break and just do the shoes for a few days then slowly introduce

the bar. This worked well for us, as getting used to the bar took

some time.

His skin was very dry to begin with (an atopic dermatitis boy) so we

still use Aquaphor (made by Eucerin) on his legs still. If I forget

for a couple days his legs still get a bit alligator looking, but it

all depends on the child. Our dermatologist swears by the stuff and

so do I. It is rather greasy so make sure the clothing that goes on

is at hand to spare your furniture & own clothing, but it works.

We also had one foot that was a bit smaller than the other so it kept

slipping in the shoe causing soars and blisters. I soooo hope you do

not have to deal with this, but if you do drop me an email. We also

have conqured toenail fungus if you need any tips. We have made it to

this point, with trial & error, and help from many.

Just wait before you know it your son will be rolling over, sitting up

and then doing the army crawl all in his DBB. Our son is now cruising

the furniture and walls in addition to climbing the stairs. Best of

luck & congratulations to you all.

Molly & Hank

> > Hi my name is Jenni and my husbands name is Tim. On October 1,

> 2003

> > we welcomed our new baby boy in to the world. Devin was born with

> > severe bilateral clubfeet. We have been members in another group

> and

> > recently someone suggested this group to us.

> > Devin sees Dr. Noonan here in Madison Wisconsin.

> > Devin has been in casts since he was 7days old. Going through

> weekly

> > cast changes. On December 2, 2003 he had his tendon release done

> > under general. His final casts will come off on Christmas Eve. We

> > are so excited, what more could you want for Christmas. However we

> > both were wondering what to expect. How sensitive will his legs be

> > now that he won't have casts on them? Is there a lotion out there

> > that works better for the dry skin? Will we need special clothes

> for

> > him to wear while in the DBB? What will his mood be like after the

> > cast come off? Will he need Tylenol after?

> >

> > Anything you might find helpful for us would be greatly

> appreciated!!

> > Thanks

> >

> > Jenni, Tim, and Devin

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