Re:Rod and -Avery Lynn-a christian response

[Guest guest]

Hi!

It's been a while since I posted. But this was brought to my attention and I

just wanted to

offer my words of encouragement. I have a son , who is 19 months. He is

currently

in the FAB mitchell style for 16 hours a day. was put in casts one day

after birth.

The were changed weekly for six months and then we were told his feet were not

getting

better and the doc wanted to do a partial release surgery. Since he had had

previous

success with this surgery, we trusted him. Unfortunately my son's feet were

extremely

severe and the surgery made them worse. They became even tighter due to the

scar

tissue that formed. We went to Dr. Ponseti himself who sent us home saying he

had no

idea if he could help us. We needed to go to physical therapy with him 4 days a

week to

stretch his feet, and I mean stretch to the point of these ear piercing screams

you seem to

be familiar with for 45 minutes straight 5 times a day. We then went back to

Ponseti a

month later. He casted every five days, ear piercing screams during

entire castings,

for 8 1/2 weeks, it still did not do the correction Dr. Ponseti wanted to see,

so we had

another surgery, but this time from the Non-surgical Doctor himself. At one

year old

was out of his casts. 11 months he spent in casts the first time.

We were told to wear the shoes for 23 hours. We left them on all the time,

despite the

screaming and screaming. They were on correctly, but his feet still were not

corrected. As

Dr. P said, they were as good as they were going to get after having two

surgeries. We

continued with Physical therapy at this point 4 days a week. It took months and

months

before he would even put his feet flat. He relapsed and we went back to Iowa in

December. He spent another 2 months in casts changed weekly. We lost the

progress we

had made and basically had to start all over with standing and pulling up and

trying to

walk.

Currently, We have gone down to 16 hours now in the shoes. He is still in

Physical therapy

and still not walking yet. If we had not done the first surgery, he would have

been

corrected by Dr. Ponseti, in 12 weeks total, instead of a year and a half later

and still not

fully corrected. It is by the grace of God that he is even standing. We have

been warned

that 5-6 years down the road if he can walk on his feet between that time, he

may not be

able to at that point due to pain from the surgeries. I refuse to accept that,

but we have

been warned by Ponseti.

If you are getting her to sleep on her tummy with the shoes on, then what is the

problem?

Let her sleep on her tummy, but keep those shoes on. Your sleep is not the

issue here.

Yes, it is a nice thing to have, believe me, we've spent many sleepless nights

between all

the castings and shoes. My other son has spent many sleepless nights as well.

But the

issue is those shoes have been designed to prevent the atrocity of surgery. Use

them.

Unless you are hoping to raise a child that will walk all over you, don't allow

her to do it

now. She may not be doing it intentionally, but she knows, I cry they come off.

Keep

them on.

Surgery is not an option. You are the parents and you have got to get through

this for the

sake of her. You have to help mold those feet and keep those feet on the right

path

because it is what is best for her. Yes it is uncomfortable for her. Yes it's

hard to see her

go through that. But it is what is best for her. I noticed you said God

bless us all...so I'm

going to bring God into this. God is molding us and shaping us every day. He

is molding

us to become more like him. Do we fight Him? Darn right we do, every second.

We go

kicking and screaming sometimes down the path He wants us to be on. Because it

hurts

to go through the fire, it's uncomfortable and it's so much easier to not

follow. But He

doesn't give up, He doesn't stop molding us and shaping us, even through the

discomfort,

even through the pain, because it is what is best for us. He does it without

resting. That

is what we need to do. fought every step of the way, but I knew if I

didn't keep

those shoes on, it would be worse. I know these shoes are what is best for him

right now.

My personal frustration doesn't matter, I have to keep my eyes on the prize and

keep

those shoes on, because darn it! I wanna see my son walk someday and I am not

going to

let those shoes win.

Be tough, be strong, have a drink of baileys, and get those shoes back on.

Surgery is NOT

an option. Going from 23 hours to 12 is absolutely ridiculous and no wonder

she's

fighting, but getting her back in them can be done. You are the parents. Be

what she

needs right now whether she likes it or not. Believe me, she will thank you in

15 years,

when she is running track or practicing her ballet. Get those shoes back on and

find a

ponseti doctor, this one doesn't sound like he is following the rules very well.

Surgery is NOT an option. Please, don't let your child go through that if it is

not

necessary. If she's keeping the shoes on and her feet are not responding at

all, then send

pictures to ponseti and see what he says. But chosing to not put your daughters

shoes on

does not make surgery a necessity, it makes it an atrocity. Please, please, get

those shoes

back on.

Wold

10-09-03 severe atypical bl cf mitchells 16 hours. (faithfully, and yet

thanks to

surgery they still are not fully corrected)

>

> >She did great wearing

> them

> > > full time for 3 months. Then the Dr said she could do just night

> > > time for 12 hours from then on. Avery decided she liked her

> freedom

> > > and after 3 night of wearing them she wouldn't cooperate at

> ALL!!!

> > > She would scream an " ear piercing " scream that would wake up the

> > > rest of the family. (If she was the only child MAYBE I could of

> > kept

> > > her in them). The minute we took them off she stopped so we

> tried a

> > > few different things to help her but nothing seemed to help. The

> Dr

> > > changed the degree of the shoes but said she couldn't do

> anymore.

> > > The foot has started turning in and has pretty much gone back to

> > > where it started... she hasn't had the shoes on in months now.

> She

> > > is 9 months old and we don't feel like we have many options at

> this

> > > time. The Dr told us the options were to go through castings

> again

> > > and start over with the shoes or more than likely surgery (which

> > she

> > > really talked down on... she doesn't want to see that happen but

> > the

> > > shoes aren't an option...)Avery is very difficult to get to

> > > cooperate even now. She is a very light sleeper. She has been

> > > through sooo much that I DO NOT want to do surgery but I really

> am

> > > out of ideas. The only way I could get her to sleep with the

> shoes

> > > on was on her belly.

> > >

> > > Does anyone have any helpful information for us....??? We are

> going

> > > to see the Dr on the 28th and talking about surgery. I also

> notice

> > > that the leg with the club foot seems to be a tiny bit

> shorter...

> > > has anyone had any concerns with that before? Is it because of

> the

> > > bend and once it is corrected it catches up?? The Dr told us

> also

> > > that the heel bone doesn't " drop " until they are about 2 years

> > > old... is that true? Could that be why it seems shorter?

> > >

> > > Thanks for listening....

> > > God Bless all of us....

> > >

> > > The Ciccione's (Chicago, Il)

> > > Rod and

> > >

> > > Chesney 8.7.00

> > > Delaney 6.24.04

> > > Avery 6.24.04 left club foot

> >

> >

> >

> >

> >

> >

[Guest guest]

Beautifully written , thank you so much, your story nearly makes me cry

every time.

Thank you.

s.

Re:Rod and -Avery Lynn-a christian

response

Hi!

It's been a while since I posted. But this was brought to my attention and I

just wanted to

offer my words of encouragement. I have a son , who is 19 months. He is

currently

in the FAB mitchell style for 16 hours a day. was put in casts one day

after birth.

The were changed weekly for six months and then we were told his feet were not

getting

better and the doc wanted to do a partial release surgery. Since he had had

previous

success with this surgery, we trusted him. Unfortunately my son's feet were

extremely

severe and the surgery made them worse. They became even tighter due to the

scar

tissue that formed. We went to Dr. Ponseti himself who sent us home saying he

had no

idea if he could help us. We needed to go to physical therapy with him 4 days a

week to

stretch his feet, and I mean stretch to the point of these ear piercing screams

you seem to

be familiar with for 45 minutes straight 5 times a day. We then went back to

Ponseti a

month later. He casted every five days, ear piercing screams during

entire castings,

for 8 1/2 weeks, it still did not do the correction Dr. Ponseti wanted to see,

so we had

another surgery, but this time from the Non-surgical Doctor himself. At one

year old

was out of his casts. 11 months he spent in casts the first time.

We were told to wear the shoes for 23 hours. We left them on all the time,

despite the

screaming and screaming. They were on correctly, but his feet still were not

corrected. As

Dr. P said, they were as good as they were going to get after having two

surgeries. We

continued with Physical therapy at this point 4 days a week. It took months and

months

before he would even put his feet flat. He relapsed and we went back to Iowa in

December. He spent another 2 months in casts changed weekly. We lost the

progress we

had made and basically had to start all over with standing and pulling up and

trying to

walk.

Currently, We have gone down to 16 hours now in the shoes. He is still in

Physical therapy

and still not walking yet. If we had not done the first surgery, he would have

been

corrected by Dr. Ponseti, in 12 weeks total, instead of a year and a half later

and still not

fully corrected. It is by the grace of God that he is even standing. We have

been warned

that 5-6 years down the road if he can walk on his feet between that time, he

may not be

able to at that point due to pain from the surgeries. I refuse to accept that,

but we have

been warned by Ponseti.

If you are getting her to sleep on her tummy with the shoes on, then what is the

problem?

Let her sleep on her tummy, but keep those shoes on. Your sleep is not the

issue here.

Yes, it is a nice thing to have, believe me, we've spent many sleepless nights

between all

the castings and shoes. My other son has spent many sleepless nights as well.

But the

issue is those shoes have been designed to prevent the atrocity of surgery. Use

them.

Unless you are hoping to raise a child that will walk all over you, don't allow

her to do it

now. She may not be doing it intentionally, but she knows, I cry they come off.

Keep

them on.

Surgery is not an option. You are the parents and you have got to get through

this for the

sake of her. You have to help mold those feet and keep those feet on the right

path

because it is what is best for her. Yes it is uncomfortable for her. Yes it's

hard to see her

go through that. But it is what is best for her. I noticed you said God

bless us all...so I'm

going to bring God into this. God is molding us and shaping us every day. He

is molding

us to become more like him. Do we fight Him? Darn right we do, every second.

We go

kicking and screaming sometimes down the path He wants us to be on. Because it

hurts

to go through the fire, it's uncomfortable and it's so much easier to not

follow. But He

doesn't give up, He doesn't stop molding us and shaping us, even through the

discomfort,

even through the pain, because it is what is best for us. He does it without

resting. That

is what we need to do. fought every step of the way, but I knew if I

didn't keep

those shoes on, it would be worse. I know these shoes are what is best for him

right now.

My personal frustration doesn't matter, I have to keep my eyes on the prize and

keep

those shoes on, because darn it! I wanna see my son walk someday and I am not

going to

let those shoes win.

Be tough, be strong, have a drink of baileys, and get those shoes back on.

Surgery is NOT

an option. Going from 23 hours to 12 is absolutely ridiculous and no wonder

she's

fighting, but getting her back in them can be done. You are the parents. Be

what she

needs right now whether she likes it or not. Believe me, she will thank you in

15 years,

when she is running track or practicing her ballet. Get those shoes back on and

find a

ponseti doctor, this one doesn't sound like he is following the rules very well.

Surgery is NOT an option. Please, don't let your child go through that if it is

not

necessary. If she's keeping the shoes on and her feet are not responding at

all, then send

pictures to ponseti and see what he says. But chosing to not put your daughters

shoes on

does not make surgery a necessity, it makes it an atrocity. Please, please, get

those shoes

back on.

Wold

10-09-03 severe atypical bl cf mitchells 16 hours. (faithfully, and yet

thanks to

surgery they still are not fully corrected)

>

> >She did great wearing

> them

> > > full time for 3 months. Then the Dr said she could do just night

> > > time for 12 hours from then on. Avery decided she liked her

> freedom

> > > and after 3 night of wearing them she wouldn't cooperate at

> ALL!!!

> > > She would scream an " ear piercing " scream that would wake up the

> > > rest of the family. (If she was the only child MAYBE I could of

> > kept

> > > her in them). The minute we took them off she stopped so we

> tried a

> > > few different things to help her but nothing seemed to help. The

> Dr

> > > changed the degree of the shoes but said she couldn't do

> anymore.

> > > The foot has started turning in and has pretty much gone back to

> > > where it started... she hasn't had the shoes on in months now.

> She

> > > is 9 months old and we don't feel like we have many options at

> this

> > > time. The Dr told us the options were to go through castings

> again

> > > and start over with the shoes or more than likely surgery (which

> > she

> > > really talked down on... she doesn't want to see that happen but

> > the

> > > shoes aren't an option...)Avery is very difficult to get to

> > > cooperate even now. She is a very light sleeper. She has been

> > > through sooo much that I DO NOT want to do surgery but I really

> am

> > > out of ideas. The only way I could get her to sleep with the

> shoes

> > > on was on her belly.

> > >

> > > Does anyone have any helpful information for us....??? We are

> going

> > > to see the Dr on the 28th and talking about surgery. I also

> notice

> > > that the leg with the club foot seems to be a tiny bit

> shorter...

> > > has anyone had any concerns with that before? Is it because of

> the

> > > bend and once it is corrected it catches up?? The Dr told us

> also

> > > that the heel bone doesn't " drop " until they are about 2 years

> > > old... is that true? Could that be why it seems shorter?

> > >

> > > Thanks for listening....

> > > God Bless all of us....

> > >

> > > The Ciccione's (Chicago, Il)

> > > Rod and

> > >

> > > Chesney 8.7.00

> > > Delaney 6.24.04

> > > Avery 6.24.04 left club foot

> >

> >

> >

> >

> >

> >