Re: [CFPics] Re: Welcome !!!

[Guest guest]

we are happy to have you here!

s.

Re: [CFPics] Re: Welcome !!!

:

I wrote to you before and told you a brief hisyory on my son Nichols. I haven

been reading your post lately and must say you have shared a lot of personal

information and seem to be coming to grips about it all. You have had a vert

tough road but your experiences will allow you to help others. Things happen to

us for reasons we do not know and it is how we take those experiences and share

them that the healing process can begin.

I hope you keep sharing and thanks for understanding where we parents are coming

from with the Ponseti and all.

mom to BL CF 6-11-05

cawleydenise wrote:

This is from the clubfoot site. A little background for those of

you I haven't met yet:

I have also been looking at the pictures of these sweet little babies

feet. Pretty miraculous stuff. Time consuming, yep. Frustrating for

parents looks and sounds like it is, but absolutely worth it.

I have been going back and forth between the two support group sites,

looking at pictures of adults as well and listening to other people's

stories and experiences. I actually feel much more comfortable about

the choices that were made for me.

I believe my case was fairly severe. In my severe case, the decision

to offer support to my foot/ankle internally through fusions was a

sound choice. I never had a flexible foot or full range of motion in

my ankle. The dome of the ankle joint was flattened and was always

extremely painful. Even as a child I would have days in a row that

the ankle joint was too painful to walk on.

I found the endless tendon surgeries frustrating, even as a child.

The actual surgery never bothered me. As I stated before, they are no

big deal. What was frustrating for me was the constant repetition of

the same types of procedure over and over again. I was always a good

patient. I never cried or made a fuss in anyway. I never told anyone

that I was feeling frustrated. I guess, looking back, I felt like if

I cooperated, it would be finished some day.

I believe the triple arthrodesis at age 13 provided many, many

healthy,

non surgery years for me. Again, I remind you, my foot was already so

stiff, I actually lost very little motion.

The other benchmark for me was the ankle fusion. When I made that

decision at the age of 28 there was basically no joint left. There

was no " dark " space in that joint at all. Again, the loss of motion

was minimal. The only thing I lost was ability to wear any kind of

high heels.

The constant frustrations are the little things, like buying shoes.

Oh my God!!! I have quite widespread nerve damage and have no feeling

of the skin in pretty broad areas. I have actually worn literal holes

in my foot due to new shoes. I can't feel the injury and only know it

has occurred when I see the blood. And then, due to poor circulation,

the injury can take more than a month to heal.

I share all this to say that given my personal experiences, I hope

you

can see why my brain has had some difficulty taking this in. Those

sweet little feet on this site look beautiful to me!! If, God forbid,

my grandchildren are born with this, we will be making a trip to meet

Dr. Ponseti in person.

Thank you all for your kindness and friendship during all this. These

discussions are making a real difference for me. I feel like I am

starting to get rid of some of the " junk " I have been carrying for

years. Keep in touch and I am willing to help in any way I can.---

>

>

> >

> >Name: Cawley

> >

> >Location (state or country is fine): Tampa, Florida

> >

> >Child's name (if you are a parent):

> >

> >Age:

> >

> >CF Diagnosis (unilateral, bilateral): Beats me, I know it's bad

> >

> >Treatment type: MULITPLE SURGERIES

> >

> >Current status (DBB 23/7, serial casting, surgery scheduled,

etc):

> >Awaiting reconstructive surgery

> >

> >Which Clubfoot list(s) or BB's are you subscribed to currently?

> >Thefeetclub & clubfoot

> >

> >How did you hear about this list? From you! And I am grateful

> >

> >Do you have virus protection? Yes, multiple levels

> >

> >Do you agree to the terms set forth above which state that you

will

> >not knowingly send posts containing virus's or worms to this list

> >and that you are subscribing to this list at your own risk?

Absolutely

> >

> >What Yahoo ID did you subscribe under?

> ><mailto:Cawleydenise@yahoo>Cawleydenise@yahoo

> >

> >

>

[Guest guest]

:

I wrote to you before and told you a brief hisyory on my son Nichols. I haven

been reading your post lately and must say you have shared a lot of personal

information and seem to be coming to grips about it all. You have had a vert

tough road but your experiences will allow you to help others. Things happen to

us for reasons we do not know and it is how we take those experiences and share

them that the healing process can begin.

I hope you keep sharing and thanks for understanding where we parents are coming

from with the Ponseti and all.

mom to BL CF 6-11-05

cawleydenise wrote:

This is from the clubfoot site. A little background for those of

you I haven't met yet:

I have also been looking at the pictures of these sweet little babies

feet. Pretty miraculous stuff. Time consuming, yep. Frustrating for

parents looks and sounds like it is, but absolutely worth it.

I have been going back and forth between the two support group sites,

looking at pictures of adults as well and listening to other people's

stories and experiences. I actually feel much more comfortable about

the choices that were made for me.

I believe my case was fairly severe. In my severe case, the decision

to offer support to my foot/ankle internally through fusions was a

sound choice. I never had a flexible foot or full range of motion in

my ankle. The dome of the ankle joint was flattened and was always

extremely painful. Even as a child I would have days in a row that

the ankle joint was too painful to walk on.

I found the endless tendon surgeries frustrating, even as a child.

The actual surgery never bothered me. As I stated before, they are no

big deal. What was frustrating for me was the constant repetition of

the same types of procedure over and over again. I was always a good

patient. I never cried or made a fuss in anyway. I never told anyone

that I was feeling frustrated. I guess, looking back, I felt like if

I cooperated, it would be finished some day.

I believe the triple arthrodesis at age 13 provided many, many

healthy,

non surgery years for me. Again, I remind you, my foot was already so

stiff, I actually lost very little motion.

The other benchmark for me was the ankle fusion. When I made that

decision at the age of 28 there was basically no joint left. There

was no " dark " space in that joint at all. Again, the loss of motion

was minimal. The only thing I lost was ability to wear any kind of

high heels.

The constant frustrations are the little things, like buying shoes.

Oh my God!!! I have quite widespread nerve damage and have no feeling

of the skin in pretty broad areas. I have actually worn literal holes

in my foot due to new shoes. I can't feel the injury and only know it

has occurred when I see the blood. And then, due to poor circulation,

the injury can take more than a month to heal.

I share all this to say that given my personal experiences, I hope

you

can see why my brain has had some difficulty taking this in. Those

sweet little feet on this site look beautiful to me!! If, God forbid,

my grandchildren are born with this, we will be making a trip to meet

Dr. Ponseti in person.

Thank you all for your kindness and friendship during all this. These

discussions are making a real difference for me. I feel like I am

starting to get rid of some of the " junk " I have been carrying for

years. Keep in touch and I am willing to help in any way I can.---

>

>

> >

> >Name: Cawley

> >

> >Location (state or country is fine): Tampa, Florida

> >

> >Child's name (if you are a parent):

> >

> >Age:

> >

> >CF Diagnosis (unilateral, bilateral): Beats me, I know it's bad

> >

> >Treatment type: MULITPLE SURGERIES

> >

> >Current status (DBB 23/7, serial casting, surgery scheduled,

etc):

> >Awaiting reconstructive surgery

> >

> >Which Clubfoot list(s) or BB's are you subscribed to currently?

> >Thefeetclub & clubfoot

> >

> >How did you hear about this list? From you! And I am grateful

> >

> >Do you have virus protection? Yes, multiple levels

> >

> >Do you agree to the terms set forth above which state that you

will

> >not knowingly send posts containing virus's or worms to this list

> >and that you are subscribing to this list at your own risk?

Absolutely

> >

> >What Yahoo ID did you subscribe under?

> ><mailto:Cawleydenise@yahoo>Cawleydenise@yahoo

> >

> >

>