UGH. Will it ever end!?!

[Guest guest]

I will have more concrete information about this next week when I get the info

back from everyone but here is the latest bit to our never-ending saga

Durring the last week I have examined Kai's foot very closely several times -

both with eyes and hands - to see if there was anything about his foot that

could have contributed to the blister he got. I noticed that his big toe was

dropping below his other toes. Not a good sign. Some of you may remember Asa

and how one of the biggest issues with his foot was the big toe? Well it is

characteristic of plantaris, but Kai hasnt had too much trouble with it so far

(probably due to very good casting by some very good doctors). Anyway, I began

feeling the bones of his foot - which I do once a month or more when I take

photos for the docs - and I can feel that the metatarsal in that toe is angling

down more than before. So, I think, nah, I am just imaging things and being

paranoid.

Well, part of the monthly picture taking ritual is to measure his feet. I got

behind and it has been 6 weeks, but here is what I found: last measure was

non-cf 4.75 inches, cf 4.5 inches. Very good and within normal range. Today:

non-cf 5.2 inches, cf 4.5 inches. Very bad. Sigh. Boy, can I see where this

is going. I had really hoped that we would make it the full 4 months with

stable correction. Guess not. I do hold out hope, however that this is the

result of a recent growth spurt and will even back out after a few weeks back in

the shoes. *crosses fingers*

On another front, e-mailed me today saying that he is working on

designing a new bar (not shoes, just bar at this point) for Kai and will let us

know as soon as he has it nailed down. Kai presents a unique problem in that

the brace was not originally intended to be used after the feet were a

certain size (around one year old) and the aluminum that the bar is made of will

only hold structural integrity to a certain length, which we are at right now.

But Kai's foot is still so unstable that the Markell shoes are not an option for

him. When made Kai's shoes he told me that Dr P and him were already

working on what the next step in bracing for Kai would be and how best to design

an orthosis for him, but we were all hoping for more time.

I know. Someday I will look back and know what a short time of our lives were

effected by this and how it was the best we could have done for Kai, but MAN,

right now looking forward is kind of gloomy!

Thanks for the forum to vent! LOL Some days I really need it.

Angel

[Guest guest]

Angel,

It is wonderful to have a place to vent isn't it? I'm so sorry you

are discovering new difficulties for Kai. I know there is really no

comforting words to say that will make a difference, but I just

wanted you to know many of us are thinking of you and sending

positive thoughts your way. Hang in there. Kai is so fortunate to

have you as a mother--you are so on top of everything. You are an

inspiration.

> I will have more concrete information about this next week when I

get the info back from everyone but here is the latest bit to our

never-ending saga

>

> Durring the last week I have examined Kai's foot very closely

several times - both with eyes and hands - to see if there was

anything about his foot that could have contributed to the blister he

got. I noticed that his big toe was dropping below his other toes.

Not a good sign. Some of you may remember Asa and how one of the

biggest issues with his foot was the big toe? Well it is

characteristic of plantaris, but Kai hasnt had too much trouble with

it so far (probably due to very good casting by some very good

doctors). Anyway, I began feeling the bones of his foot - which I do

once a month or more when I take photos for the docs - and I can feel

that the metatarsal in that toe is angling down more than before.

So, I think, nah, I am just imaging things and being paranoid.

>

> Well, part of the monthly picture taking ritual is to measure his

feet. I got behind and it has been 6 weeks, but here is what I

found: last measure was non-cf 4.75 inches, cf 4.5 inches. Very

good and within normal range. Today: non-cf 5.2 inches, cf 4.5

inches. Very bad. Sigh. Boy, can I see where this is going. I had

really hoped that we would make it the full 4 months with stable

correction. Guess not. I do hold out hope, however that this is the

result of a recent growth spurt and will even back out after a few

weeks back in the shoes. *crosses fingers*

>

> On another front, e-mailed me today saying that he is

working on designing a new bar (not shoes, just bar at this point)

for Kai and will let us know as soon as he has it nailed down. Kai

presents a unique problem in that the brace was not

originally intended to be used after the feet were a certain size

(around one year old) and the aluminum that the bar is made of will

only hold structural integrity to a certain length, which we are at

right now. But Kai's foot is still so unstable that the Markell

shoes are not an option for him. When made Kai's shoes he told

me that Dr P and him were already working on what the next step in

bracing for Kai would be and how best to design an orthosis for him,

but we were all hoping for more time.

>

> I know. Someday I will look back and know what a short time of our

lives were effected by this and how it was the best we could have

done for Kai, but MAN, right now looking forward is kind of gloomy!

>

> Thanks for the forum to vent! LOL Some days I really need it.

>

> Angel

>

>

[Guest guest]

Angel,

I am so sorry to hear that. I just want to let you know that we are hoping

for the best. I know you are so very frustrated and disappointed right now and

I wish there was something more we could do. You have my support and anytime

you need to vent or whatever you can email me. Thank you for all of the

support that you have given to us and I just want to return the favor. My

wishes,

prayers and thoughts are with you. Please, let me know when you know something

or need something.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

Angel,

I am so sorry to hear that. I just want to let you know that we are hoping

for the best. I know you are so very frustrated and disappointed right now and

I wish there was something more we could do. You have my support and anytime

you need to vent or whatever you can email me. Thank you for all of the

support that you have given to us and I just want to return the favor. My

wishes,

prayers and thoughts are with you. Please, let me know when you know something

or need something.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

thank you for the support. I expect to hear back from one or both of

the doctors as early as Monday. Hopefully they will tell me I am just being

paranoid ... but I dont really expect it

Angel

Re: UGH. Will it ever end!?!

Angel,

I am so sorry to hear that. I just want to let you know that we are hoping

for the best. I know you are so very frustrated and disappointed right now and

I wish there was something more we could do. You have my support and anytime

you need to vent or whatever you can email me. Thank you for all of the

support that you have given to us and I just want to return the favor. My

wishes,

prayers and thoughts are with you. Please, let me know when you know something

or need something.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

thank you for the support. I expect to hear back from one or both of

the doctors as early as Monday. Hopefully they will tell me I am just being

paranoid ... but I dont really expect it

Angel

Re: UGH. Will it ever end!?!

Angel,

I am so sorry to hear that. I just want to let you know that we are hoping

for the best. I know you are so very frustrated and disappointed right now and

I wish there was something more we could do. You have my support and anytime

you need to vent or whatever you can email me. Thank you for all of the

support that you have given to us and I just want to return the favor. My

wishes,

prayers and thoughts are with you. Please, let me know when you know something

or need something.

Freeman

Kaitlin Freeman 3/9/04 LCF

[Guest guest]

thank you for the support. I expect to hear back from one or both of

the doctors as early as Monday. Hopefully they will tell me I am just being

paranoid ... but I dont really expect it

Angel

Re: UGH. Will it ever end!?!

Angel,

I am so sorry to hear that. I just want to let you know that we are hoping

for the best. I know you are so very frustrated and disappointed right now and

I wish there was something more we could do. You have my support and anytime

you need to vent or whatever you can email me. Thank you for all of the

support that you have given to us and I just want to return the favor. My

wishes,

prayers and thoughts are with you. Please, let me know when you know something

or need something.

Freeman

Kaitlin Freeman 3/9/04 LCF