Re: Re: Help...Again

[Guest guest]

,

I remembered your website and went there to look up Dr. Ponseti's

number (great site by the way)

Unfortunately, I am once again sitting here in tears, I keep saying if there

is a brick wall to run into I'm sure to find it...

Dr. P. said that it's to late for and his technique will NOT work for

him, he said that due to scar tissue and the stiffness and rigidness of

's ankles nothing more can be done except for secondary surgery.

Dr. P was my only hope and now that is gone, the helplessness that I feel is

so overwhelming I feel like I'm dyeing inside. I don't know how much more

heart ach I can take, I just love soooooooo much and I can't help him.

My son is doomed to a lifetime of pain and suffering and I can't do a damn

thing to stop this from happening. I have to stop now.

+

Bilateral Clubfoot

1 st surgery April 17 th 2000

2 nd surgery June 1 st 2000

Cast Free July 27 th 2000

Further Surgery Pending

's Story= Hometown.aol.com/ladycub119/myhomepage/index.html

[Guest guest]

(((())))

While you may not be able to correct 's feet with the Ponseti method,

there are still things you can do, and you are on the right track.

Having him wear the AFOs during the day will help to slow the regression.

Also the DBB at night. No, this won't put the feet back into a corrected

position, but slowing it down is good. We are working with the same thing,

and the way it has been explained to us, is that the longer we can hold off

on the second surgery the better, as each surgery increases the level of scar

tissue and the closer together the surgeries, the more likely another surgery

will be.

I'm sorry you are feeling so badly and wish there was something more I could

do for you. Know that we are in a similar boat, and that I am here if you

need to vent, discuss options, etc.

~Maureen

> Dr. P. said that it's to late for and his technique will NOT work for

> him, he said that due to scar tissue and the stiffness and rigidness of

> 's ankles nothing more can be done except for secondary surgery.

> Dr. P was my only hope and now that is gone, the helplessness that I feel

> is

> so overwhelming I feel like I'm dyeing inside. I don't know how much more

> heart ach I can take, I just love soooooooo much and I can't help him.

> My son is doomed to a lifetime of pain and suffering and I can't do a damn

> thing to stop this from happening. I have to stop now.

>

[Guest guest]

In a message dated 02/13/2001 1:31:16 PM Eastern Standard Time,

CaseyWaid@... writes:

<< Also the DBB at night. >>

Maureen, you're an angel...

You have so many more problems than I do, but

still you take the time to respond ((((((( A big cyber hug to you)))))).

doesn't wear the DBB, his Dr. only prescribed the braces at night and

the Straight Last Shoes during the day.

How is your son doing?

+

Bilateral Clubfoot

1 st surgery April 17 th 2000

2 nd surgery June 1 st 2000

Cast Free July 27 th 2000

Further Surgery Pending

's Story= Hometown.aol.com/ladycub119/myhomepage/index.html

[Guest guest]

Hi Jody,

doesn't get P/T, when Early Intervention came to evaluate him

they said that he does qualify, but due to the stiffness and rigidness in his

feet (The problems are in 's bones) P/T would hurt him and not help him.

They told me to give them a call after his secondary surgeries and she was

sure they could help him then. Believe me I've tried just about everything

out there to get him help.

Thanks for your kind words Jody and I apologize to everyone for posting a

message while being so upset.

+

Bilateral Clubfoot

1 st surgery April 17 th 2000

2 nd surgery June 1 st 2000

Cast Free July 27 th 2000

Further Surgery Pending

's Story= Hometown.aol.com/ladycub119/myhomepage/index.html

[Guest guest]

Thank you Clarissa,

It means a lot just knowing that there are people like you

in this world.

+

Bilateral Clubfoot

1 st surgery April 17 th 2000

2 nd surgery June 1 st 2000

Cast Free July 27 th 2000

Further Surgery Pending

's Story= Hometown.aol.com/ladycub119/myhomepage/index.html

[Guest guest]

,

Big <<<<<<<<<<<<<<<<<<<<HUGS>>>>>>>>>>>>>>>>>>> for

you and . I can't even imagine all you are going

through right now. Just remember we are all here for

you!

Clarissa & Judd

--- Ladycub119@... wrote:

> ,

> I remembered your website and went there to

> look up Dr. Ponseti's

> number (great site by the way)

> Unfortunately, I am once again sitting here in

> tears, I keep saying if there

> is a brick wall to run into I'm sure to find it...

> Dr. P. said that it's to late for and his

> technique will NOT work for

> him, he said that due to scar tissue and the

> stiffness and rigidness of

> 's ankles nothing more can be done except for

> secondary surgery.

> Dr. P was my only hope and now that is gone, the

> helplessness that I feel is

> so overwhelming I feel like I'm dyeing inside. I

> don't know how much more

> heart ach I can take, I just love soooooooo

> much and I can't help him.

> My son is doomed to a lifetime of pain and suffering

> and I can't do a damn

> thing to stop this from happening. I have to stop

> now.

>

> +

> Bilateral Clubfoot

> 1 st surgery April 17 th 2000

> 2 nd surgery June 1 st 2000

> Cast Free July 27 th 2000

> Further Surgery Pending

> 's Story=

> Hometown.aol.com/ladycub119/myhomepage/index.html

>

__________________________________________________

[Guest guest]

,

I am so sorry to hear that you are having to go through this. Please do not

give up hope!!

Although you may not be able to correct your sons feet without surgery, I

think that some physical therapy would really help with adhesions and

keeping the muscles from continuing to tighten. Talk with someone near you

that utilizes the French method, and maybe they can show you some exercises

to help keep his foot limber....it will not correct his feet, but it might

be able to keep them from getting worse.

Many hugs to you,

Jody

Re: Re: " Help...Again "

> ,

> I remembered your website and went there to look up Dr. Ponseti's

> number (great site by the way)

> Unfortunately, I am once again sitting here in tears, I keep saying if

there

> is a brick wall to run into I'm sure to find it...

> Dr. P. said that it's to late for and his technique will NOT work

for

> him, he said that due to scar tissue and the stiffness and rigidness of

> 's ankles nothing more can be done except for secondary surgery.

> Dr. P was my only hope and now that is gone, the helplessness that I feel

is

> so overwhelming I feel like I'm dyeing inside. I don't know how much more

> heart ach I can take, I just love soooooooo much and I can't help

him.

> My son is doomed to a lifetime of pain and suffering and I can't do a damn

> thing to stop this from happening. I have to stop now.

>

> +

> Bilateral Clubfoot

> 1 st surgery April 17 th 2000

> 2 nd surgery June 1 st 2000

> Cast Free July 27 th 2000

> Further Surgery Pending

> 's Story= Hometown.aol.com/ladycub119/myhomepage/index.html

>

>

>

[Guest guest]

--

No problem... support is what we're all here for, right!?!

> How is your son doing?

is doing better, thanks. His surgery went well. However, we were

placed in a room with children who had that nasty stomach virus... and so we

were home about 24 hours when... yup, you guessed it.. and we got very close

to having to bring him in to the hospital for IV hydration. Thank goodness

for pedialyte ice pops. Regular pedialyte is nasty, but the pops are pretty

good and were just enough to keep him hydrated, though not much actually

stayed down. Today he was feeling much better and seems to be on the mend.

We go to the surgeon tomorrow for a dressing change and a dressing down (by

me!!).

~Maureen

[Guest guest]

> Hi Jody,

> doesn't get P/T, when Early Intervention came to evaluate

> him

> they said that he does qualify, but due to the stiffness and rigidness in

> his

> feet (The problems are in 's bones) P/T would hurt him and not help

> him.

> They told me to give them a call after his secondary surgeries and she was

> sure they could help him then. Believe me I've tried just about everything

> out there to get him help.

> Thanks for your kind words Jody and I apologize to everyone for posting a

> message while being so upset.

>

>

Wait, I would press for Early Intervention. It doesn't matter that he is

stiff and it won't hurt him if done correctly. receives PT and let me

tell you his feet are STIFF. They are at 90 degrees with perhaps a 5 degree

passive range of motion. He has a Feldenkrais practitioner and she works

with him on balance, coordinating movements, compensating for the stiffness

(try walking up and down the staircase without using your ankle--think what

it would be like if both feet were in casts--ever see anyone attempt to climb

stairs with casts on both legs?? probably not bc its pretty hard when you

cannot plantarflex or dorsiflex.) Anyway thats just one reason why

should have PT. Don't let them bamboozle you, he is entitled to it and

should get it!!!!!!!

~Maureen

[Guest guest]

,

You don't ever need to apologize for writing your feelings here! That's what

is so wonderful about this group, when you are feeling desperate and need

someone even just to listen you know that you will get compassion and

understanding from all the parents on this group. We have'nt all been in the

exact same situations but we all have a common link and even though there

are things in life worse than clubfoot, to all of us it is indeed a very big

deal. I hope you can find some comfort in knowing at least that we are all

on your side and I wish the very best for . Keep going, one way or

another one day this will all be behind you both!

Holly and

Re: Re: " Help...Again "

>Hi Jody,

> doesn't get P/T, when Early Intervention came to evaluate

him

>they said that he does qualify, but due to the stiffness and rigidness in

his

>feet (The problems are in 's bones) P/T would hurt him and not help

him.

>They told me to give them a call after his secondary surgeries and she was

>sure they could help him then. Believe me I've tried just about everything

>out there to get him help.

>Thanks for your kind words Jody and I apologize to everyone for posting a

>message while being so upset.

>

> +

>Bilateral Clubfoot

>1 st surgery April 17 th 2000

>2 nd surgery June 1 st 2000

>Cast Free July 27 th 2000

>Further Surgery Pending

>'s Story= Hometown.aol.com/ladycub119/myhomepage/index.html

>

>

>

[Guest guest]

Oh Maureen,

Poor Decky... Sigh... Why on earth would they put any child

who has just had surgery in with sick kids. I'm glad he's feeling better and

that everything went OK.

As far as EI, maybe I will give them a call again I have nothing left to

loose. 's DR was against PT from the start and wouldn't even give me a

script for it, but with EI they didn't need one from him.

The girl that came over seemed very sincere and said she couldn't believe

that she was saying this, but due to 's stiffness and rigidness she

honestly didn't think P/T would be beneficial to him.

She said she didn't have it in her to put through needless pain when in

her opinion it just wouldn't work.

+

Bilateral Clubfoot

1 st surgery April 17 th 2000

2 nd surgery June 1 st 2000

Cast Free July 27 th 2000

Further Surgery Pending

's Story= Hometown.aol.com/ladycub119/myhomepage/index.html