Re: Grace's Surgery

[Guest guest]

,

Glad to hear that Grace's surgery went well. That video must be

priceless. So glad you were able to see Dr. Dobbs, he's just great!

>

> well grace had her surgery friday and all went great.. this time

> they gave her some medicine before the surgery to make the

> seperation not so bad and she was soooo funny.... tried to talk and

> couldn't and was doing that drunk little laugh... i have great video

> tape of it!! she is in 2 full leg casts for 4 weeks and then will go

> to her braces... he said she may only have to wear the braces 23/7

> for a month due to her age... and then may get to cut back to 14-16

> hours a day... which won't be bad at all... she only takes about a 1

> hour nap during the day but sleeps around 11-12 hours at night... so

> just a few more hours in the morning and then free the rest of the

> day... so that will be wonderful... i am hoping she takes well to

> them and doesn't fight them very long... it took her about 3 days to

> stop being angry with the casts this time... she's had one leg or

> another free for the last 6 months.. so both legs being boat

> anchored has been trying... but she could care less now... so thank

> you to everyone who helped me find dr dobbs in st louis.. he was

> wonderful...!!!

>

> mommy to Grace 12-03-03 BCF

[Guest guest]

, it's good to hear that all went well on Friday. She'll be back

to her brace before you know it!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7

>

> well grace had her surgery friday and all went great.. this time

> they gave her some medicine before the surgery to make the

> seperation not so bad and she was soooo funny.... tried to talk and

> couldn't and was doing that drunk little laugh... i have great

video

> tape of it!! she is in 2 full leg casts for 4 weeks and then will

go

> to her braces... he said she may only have to wear the braces 23/7

> for a month due to her age... and then may get to cut back to 14-16

> hours a day... which won't be bad at all... she only takes about a

1

> hour nap during the day but sleeps around 11-12 hours at night...

so

> just a few more hours in the morning and then free the rest of the

> day... so that will be wonderful... i am hoping she takes well to

> them and doesn't fight them very long... it took her about 3 days

to

> stop being angry with the casts this time... she's had one leg or

> another free for the last 6 months.. so both legs being boat

> anchored has been trying... but she could care less now... so thank

> you to everyone who helped me find dr dobbs in st louis.. he was

> wonderful...!!!

>

> mommy to Grace 12-03-03 BCF

[Guest guest]

Hi lisa, Im so glad to hear that everything went fine. it is so

great to have a camcorder isnt it? record those " special " moments.

We recorded one of samantha's castings but had to stop with all the

screaming she was doing. im glad all went well with you.

so will she be using the markells or mitchell shoes? i hope you have

a smooth transition also.

glad to hear all is well and we are almost on our 4th week or 23/7.

we are looking forward to the reduced hours.

Hugs to Grace from us!

and

BL CF 12/16/03

>

> well grace had her surgery friday and all went great.. this time

> they gave her some medicine before the surgery to make the

> seperation not so bad and she was soooo funny.... tried to talk

and

> couldn't and was doing that drunk little laugh... i have great

video

> tape of it!! she is in 2 full leg casts for 4 weeks and then will

go

> to her braces... he said she may only have to wear the braces 23/7

> for a month due to her age... and then may get to cut back to 14-

16

> hours a day... which won't be bad at all... she only takes about a

1

> hour nap during the day but sleeps around 11-12 hours at night...

so

> just a few more hours in the morning and then free the rest of the

> day... so that will be wonderful... i am hoping she takes well to

> them and doesn't fight them very long... it took her about 3 days

to

> stop being angry with the casts this time... she's had one leg or

> another free for the last 6 months.. so both legs being boat

> anchored has been trying... but she could care less now... so

thank

> you to everyone who helped me find dr dobbs in st louis.. he was

> wonderful...!!!

>

> mommy to Grace 12-03-03 BCF

[Guest guest]

I'm so glad to hear that Grace's procedure went well. I thought about

you guys Friday morning. Did you get to stay at the Mc

house Thursday night?

I noticed in another post that Grace is getting a new brace that Dr.

Dobb's designed for his CF patients. It's FABULOUS!!!!! It's very

hard to explain but if Grace has the same one as Kolby, the bar is

universal with different shoes. We've used it with s and when

we were there Thursday, he got a new pair of AFO's. (i think that's

what they are called.) He had trouble with blisters and pressure

sores with the Mithcell's, so the new ones have a soft inserts that

were made from a molds of his feet. So far, we love them and Kolby

seems to love them as well. The brace itself is attached to the shoes

with plates that pivet on hinges. Kolby actually has freedom to move

his legs up and down indivually without both feet moving. I can't

tell you how much better it has made bedtime. He can actually tuck

one leg only underneath him if he wants to. I was very skeptical at

first with the new brace and was afraid we were straying from the

Ponsetti technique. I did ask Dr. Dobb's last Thursday about that and

he said that he actually has Dr. Ponsetti's approval. Kolby has been

using this particular brace for about 2 months now and so far, he's

maintained correction 100%. (He just went to 14 hours per day.) We

should be getting an updated brace anyday in the mail as it wasn't

ready Thursday when we were there. When I get it, I will post a

picture of it on CFpics so you can see it.

Again, I'm so glad you're on track with Grace. Sorry I was so long-

winded. Keep me posted.

Mom of Kolby BCF

>

> well grace had her surgery friday and all went great.. this time

> they gave her some medicine before the surgery to make the

> seperation not so bad and she was soooo funny.... tried to talk and

> couldn't and was doing that drunk little laugh... i have great

video

> tape of it!! she is in 2 full leg casts for 4 weeks and then will

go

> to her braces... he said she may only have to wear the braces 23/7

> for a month due to her age... and then may get to cut back to 14-16

> hours a day... which won't be bad at all... she only takes about a

1

> hour nap during the day but sleeps around 11-12 hours at night...

so

> just a few more hours in the morning and then free the rest of the

> day... so that will be wonderful... i am hoping she takes well to

> them and doesn't fight them very long... it took her about 3 days

to

> stop being angry with the casts this time... she's had one leg or

> another free for the last 6 months.. so both legs being boat

> anchored has been trying... but she could care less now... so thank

> you to everyone who helped me find dr dobbs in st louis.. he was

> wonderful...!!!

>

> mommy to Grace 12-03-03 BCF

[Guest guest]

thank you... i just signed up for that group and will look at the pictures

tomorrow... thanks for the help...

mommy to Grace 12-03-03 BCF

jagrindon jagrindon@...> wrote:

,

Are you a member of the CFPics group? If so, you can see pictures of

the shoes and brace that Dr. Dobbs has designed in the photos section

there. They are in the folder called " Foot Abduction Braces " and then

in a separate folder called " Dobbs Brace " , I posted pics there of

Sammy in the new shoes and brace and there are a couple other parents

who have pics there as well so you can get a look at them.

lisa caroland

__________________________________________________

[Guest guest]

i am so glad you have told me about the brace.. i was wondering what it was

going to be like and wondered how you liked it... i am nervous but i think it

will be easier for grace if she can tuck her legs under her to sleep... and if

she can move her feet separatly... at least i am hoping so...

we weren't able to get in the ronald mcdonald house... they were full... so we

stayed at a holiday inn that gave a discounted rate... and i have made a

reservation for the return trip on the 4th also... my dh will be going with me

this time and he will have the dna testing done that dr dobbs is researching...

grace and i have had ours done... that is a point of interest to me also.. are

you a part of the study also? thank you for all your time and we are both long

winded!!

mommy to Grace 12-03-03 BCF

russplus0075@...> wrote:

I'm so glad to hear that Grace's procedure went well. I thought about

you guys Friday morning. Did you get to stay at the Mc

house Thursday night?

I noticed in another post that Grace is getting a new brace that Dr.

Dobb's designed for his CF patients. It's FABULOUS!!!!! It's very

hard to explain but if Grace has the same one as Kolby, the bar is

universal with different shoes. We've used it with s and when

we were there Thursday, he got a new pair of AFO's. (i think that's

what they are called.) He had trouble with blisters and pressure

sores with the Mithcell's, so the new ones have a soft inserts that

were made from a molds of his feet. So far, we love them and Kolby

seems to love them as well. The brace itself is attached to the shoes

with plates that pivet on hinges. Kolby actually has freedom to move

his legs up and down indivually without both feet moving. I can't

tell you how much better it has made bedtime. He can actually tuck

one leg only underneath him if he wants to. I was very skeptical at

first with the new brace and was afraid we were straying from the

Ponsetti technique. I did ask Dr. Dobb's last Thursday about that and

he said that he actually has Dr. Ponsetti's approval. Kolby has been

using this particular brace for about 2 months now and so far, he's

maintained correction 100%. (He just went to 14 hours per day.) We

should be getting an updated brace anyday in the mail as it wasn't

ready Thursday when we were there. When I get it, I will post a

picture of it on CFpics so you can see it.

Again, I'm so glad you're on track with Grace. Sorry I was so long-

winded. Keep me posted.

Mom of Kolby BCF

lisa caroland

__________________________________________________

[Guest guest]

Hi , just wanted to let you know that I took a look at the brace

dr. dobbs is using and i thought it was really cool. i love the fact

that the kids will be able to move their leg independently from each

other! i am so excited for you and grace! let me know how it goes!

and

BL CF 12/16/03

>

>

> I'm so glad to hear that Grace's procedure went well. I thought

about

> you guys Friday morning. Did you get to stay at the

Mc

> house Thursday night?

>

> I noticed in another post that Grace is getting a new brace that

Dr.

> Dobb's designed for his CF patients. It's FABULOUS!!!!! It's very

> hard to explain but if Grace has the same one as Kolby, the bar is

> universal with different shoes. We've used it with s and

when

> we were there Thursday, he got a new pair of AFO's. (i think

that's

> what they are called.) He had trouble with blisters and pressure

> sores with the Mithcell's, so the new ones have a soft inserts

that

> were made from a molds of his feet. So far, we love them and Kolby

> seems to love them as well. The brace itself is attached to the

shoes

> with plates that pivet on hinges. Kolby actually has freedom to

move

> his legs up and down indivually without both feet moving. I can't

> tell you how much better it has made bedtime. He can actually tuck

> one leg only underneath him if he wants to. I was very skeptical

at

> first with the new brace and was afraid we were straying from the

> Ponsetti technique. I did ask Dr. Dobb's last Thursday about that

and

> he said that he actually has Dr. Ponsetti's approval. Kolby has

been

> using this particular brace for about 2 months now and so far,

he's

> maintained correction 100%. (He just went to 14 hours per day.) We

> should be getting an updated brace anyday in the mail as it wasn't

> ready Thursday when we were there. When I get it, I will post a

> picture of it on CFpics so you can see it.

>

> Again, I'm so glad you're on track with Grace. Sorry I was so long-

> winded. Keep me posted.

>

> Mom of Kolby BCF

>

>

> lisa caroland

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

,

You mean the Markell shoes right? not the 's which are the sandal

looking ones.

I'm curious, did you figure out why he was having problems with the sores,

and how long did he have them for? I am assuming that they're healed now

or else he wouldn't have been able to wear the brace. Was he ever able to

wear the brace with the Markell shoes? I'm just wondering what the

movement is going to do in those shoes, if that would cause blisters or

what. I'm pretty sure the Markell shoes don't *cause* sores, there's a lot

of other factors in play there that have nothing to do with the shoes

themselves. And if your son's foot was fully corrected, his heels were

down all the way and the shoes tight I'm wondering if the movement from the

brace/bar itself was what caused the sores.

Thanks for any clarification on this!

Kori

At 10:07 AM 2/9/2005, you wrote:

>I'm so glad to hear that Grace's procedure went well. I thought about

>you guys Friday morning. Did you get to stay at the Mc

>house Thursday night?

>

>I noticed in another post that Grace is getting a new brace that Dr.

>Dobb's designed for his CF patients. It's FABULOUS!!!!! It's very

>hard to explain but if Grace has the same one as Kolby, the bar is

>universal with different shoes. We've used it with s and when

>we were there Thursday, he got a new pair of AFO's. (i think that's

>what they are called.) He had trouble with blisters and pressure

>sores with the Mithcell's, so the new ones have a soft inserts that

>were made from a molds of his feet. So far, we love them and Kolby

>seems to love them as well. The brace itself is attached to the shoes

>with plates that pivet on hinges. Kolby actually has freedom to move

>his legs up and down indivually without both feet moving. I can't

>tell you how much better it has made bedtime. He can actually tuck

>one leg only underneath him if he wants to. I was very skeptical at

>first with the new brace and was afraid we were straying from the

>Ponsetti technique. I did ask Dr. Dobb's last Thursday about that and

>he said that he actually has Dr. Ponsetti's approval. Kolby has been

>using this particular brace for about 2 months now and so far, he's

>maintained correction 100%. (He just went to 14 hours per day.) We

>should be getting an updated brace anyday in the mail as it wasn't

>ready Thursday when we were there. When I get it, I will post a

>picture of it on CFpics so you can see it.

>

>Again, I'm so glad you're on track with Grace. Sorry I was so long-

>winded. Keep me posted.

>

> Mom of Kolby BCF

>

>

> >

> > well grace had her surgery friday and all went great.. this time

> > they gave her some medicine before the surgery to make the

> > seperation not so bad and she was soooo funny.... tried to talk and

> > couldn't and was doing that drunk little laugh... i have great

>video

> > tape of it!! she is in 2 full leg casts for 4 weeks and then will

>go

> > to her braces... he said she may only have to wear the braces 23/7

> > for a month due to her age... and then may get to cut back to 14-16

> > hours a day... which won't be bad at all... she only takes about a

>1

> > hour nap during the day but sleeps around 11-12 hours at night...

>so

> > just a few more hours in the morning and then free the rest of the

> > day... so that will be wonderful... i am hoping she takes well to

> > them and doesn't fight them very long... it took her about 3 days

>to

> > stop being angry with the casts this time... she's had one leg or

> > another free for the last 6 months.. so both legs being boat

> > anchored has been trying... but she could care less now... so thank

> > you to everyone who helped me find dr dobbs in st louis.. he was

> > wonderful...!!!

> >

> > mommy to Grace 12-03-03 BCF

>

>

>

>

>

>

>

>

>

>

[Guest guest]

We are glad that you found Dr. Dobbs! Give that little trooper a big

hug from us!! Hope it goes by fast!

& Grace

>

> well grace had her surgery friday and all went great.. this time

> they gave her some medicine before the surgery to make the

> seperation not so bad and she was soooo funny.... tried to talk and

> couldn't and was doing that drunk little laugh... i have great

video

> tape of it!! she is in 2 full leg casts for 4 weeks and then will

go

> to her braces... he said she may only have to wear the braces 23/7

> for a month due to her age... and then may get to cut back to 14-16

> hours a day... which won't be bad at all... she only takes about a

1

> hour nap during the day but sleeps around 11-12 hours at night...

so

> just a few more hours in the morning and then free the rest of the

> day... so that will be wonderful... i am hoping she takes well to

> them and doesn't fight them very long... it took her about 3 days

to

> stop being angry with the casts this time... she's had one leg or

> another free for the last 6 months.. so both legs being boat

> anchored has been trying... but she could care less now... so thank

> you to everyone who helped me find dr dobbs in st louis.. he was

> wonderful...!!!

>

> mommy to Grace 12-03-03 BCF