Zach

[Guest guest]

I am not just looking for a quick fix first thing. I was very offended by that.

I have had plenty of surgeries too and I know they hurt. I cried when they took

him for his tenotomy but he is a very happy baby normally and he is truly

miserable in his brace. We do not live near the doctor or orthosist so we

cannot run in for an adjustment every day. It has to very planned for us to

drive 150 miles with twins while I am student teaching and graduating in a few

months and my husband owns a retail store. As I said in my other response we

are open to suggestions but not by the coordinator. She obviously has never had

a child with this. I understand she probably deals with noncompliant people

every day but we have tried EVERYTHING and he is still miserable. I think we

already have the new shoes. How do you tell the difference? Someone suggested

turning the shoe out slowly and I think that would be the best idea. After some

more casting of course. Anyway, please let me hang in

there and vent when I need to without judging me. You have not walked a mile

in my shoes or heard his cries of pain with the brace on. We will make an

educated decision that is best for him and our family when we have all of the

facts. We are not just jumping lightly into surgery. I'm sorry if you consider

this a rude response but I really am a good mommy and I felt like you were

questioning my abilities.

Jen

Robin Lane wrote:

I agree with Kori and just want to say that surgery is always invasive and

weakens the body. Sometimes the payoff is worth it, such as in open heart

surgery or cleft palate repair. Or for those 5% of children that the Ponseti

treatment does not work for. However, to give up on the shoes and expect

surgery to be a quick fix.....Please think seriously about this. Would you hurt

your back and had the choice of physical therapy every day for two years with a

95% success rate or surgery, what would you do? Whatever that answer is, is

perhaps the right answer for you and your child.

Robin & Rose.

Kori Rush wrote:

I agree. I read this website when I first started looking for info about

CF and it scared the heck out of me. Surgery seems like such an easy fix

but it's no walk in the park. I've had surgeries, they hurt. Having a

shoe that hurts isn't fun... but surgery REALLY hurts. Trading the

discomfort experienced now with discomfort and/or pain for the rest of

their life doesn't seem like a fair trade to me.

There's something wrong with this picture. Some of it may be he's older

and more upset but it is more than likely that his feet are still sore from

before. Being that he's not entirely healed he can't go back into a shoe

that rubbed or pressed in the sore area. If it were me I'd go back to

casts again. Terrible as that may seem a few weeks in casts should give

that tissue time to really heal. Then try the shoes again but I'd make

sure I had the new style.

The main point is that the shoes should NOT cause problems unless something

is wrong. Not finding and fixing whatever problem it is will only keep the

problems going. But there is a fix... it just needs to be found. There

are also other shoes available if these don't ever work, the

shoes might be an option in this case - Jen, you might want to seriously

consider contacting him about them. There *are* options other than surgery

but when a mama is tired and a baby is screaming it's hard to see what is

the best choice right now. I sympathize with anyone going through this, I

remember... it is not fun. Fortunately I am convinced this is the way to

go and had a good orthotist who was willing to do something unconventional

to try to help. At one point though I thought seriously about AFO's which

I know now would never have been the right choice.

Something else to consider, the distance between his heels. Is it the same

as his shoulder width? Not the length of the bar, but the distance heel to

heel when they're set at the proper degree. Perhaps this is part of the

problem? What degree are the shoes set at? What was the last cast

at? Were the healing casts set as far as the post-tenotomy casts? You

never mentioned which shoes you had, are they the new ones or old? There

are lots of variables for finding problems and solutions but I'm convinced

that one is out there and I really hope it's not surgery.

Here's a thought... in case it actually is the bar that's bothering him,

or the combination of sore feet and the inability to move them

independently... what about casting the bar into the casts? That way he'd

get a chance to have pain free healing, yet get him used to the bar while

in the casts? Dunno if the doc would go for it but it might be worth the

suggestion. If it proved to be just too much they could be soaked off at

home.

Don't give up quite yet... There's more help out there, and lots of options

available. I'm sure someone will come up with something that works for you

and the little man. :~}

Kori

At 12:51 PM 1/7/04, you wrote:

>Message: 22

> Date: Tue, 6 Jan 2004 14:36:47 -0800 (PST)

>

>Subject: Re: Dr. Dobb's replied to my email and his nurse just called....

>

>Well, we tried the brace again last night and after 2 hours of constant

>trying

>agreed to leave it off completely until we go on the 22nd. I know this may

>seem

>bad to some of you but we are leaning towards the surgery at 10 months and

>no

>more brace. I'll keep everyone updated.

>

>Hi Jen,

>

>I haven't been keeping up with the posts lately, but just read your recent

>post about going with the surgery.

>

>Wanted to share this website I found. It describes one family's experience

>with the surgery. It seems to me that the discomfort children experience

>from the bar would be very mild compared to that of surgery.

>http://www.angelfire.com/oh/clubfoot/myson/index.html

>

>Also, from what I understand, the long term outcomes for some types of

>surgery are not good. As young adults, they have pain when walking,

>arthritis.

>

>The brace can be challenging, but dealing with major surgeries could be much

>worse....

>

>I can't imagine what you must be going through, so feel free to ignore my 2

>cents! My thoughts are with you. Hope everything works out for the best!!!

>Joanne W.

>mom to Zoe (3-25-01, right clubfoot)

>

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>

>