Re: appt. and casting with Dr. Khoury

[Guest guest]

Hi Janet,

I'm so glad Sage will be getting treatment with Dr Khoury! It sounds like he is

optimistic that casting will help her, so that is a very good thing.

that is interesting about the xray thing they did. I had not heard of that til

now. For Todd's eval., he just looked at the xrays that had been done here in

Atlanta, then examined him without his shirt and watched him move around.

Maybe once you start to see the xrays as Sage's back gets straighter and

straighter, you will gain some positive associations with that hospital. It is

an amazing thing to see those xrays.

This will be the first time we'll have a cast applied on the same day as anyone

else, and now it looks as if there will be three! It will be nice to be able to

meet in person--we have never met anyone else with infantile scoli. Let us know

what you decide about staying overnight.

(But I also hope they won't take too long doing the casting... whoever is last

will have a very long day, indeed!)

Talk with you soon,

, Mommy to Todd

appt. and casting with Dr. Khoury

just wanted to add our name to the list of those who will be in

Birmingham on the 28 of Feb. Sage had her first appt. with him

yesterday and we really liked him. He took x-rays and was able to

show a significant change in the film --- you know the way they

position them, take film and then same position except have pressure

applied at certian point on back? i know thats not an exact science

but it did at least show that her spine still has flexability( right

at 90 to around 37 degrees) and i know that this in not a " cure all "

or magic but it beats the alternative! it is hard for me to go back

to childrens, we spent a very scary long week there in nicu when

sage was born, (we did not know of sages condition before birth,and

then they thought Trisomy18, until dx. of arthrogryposis) so it

still gets to me to have to walk in that hospital,even though we did

continue to use one of the ortho. docs for serial casting on her

feet for a while. he is still there and is actually in same clinic

with Khoury, but was not the right doc. for sage. thats another

thing, khoury understands that we will continue to use her current

ortho. for her feet (club) and did not seem to have any kind of

problem with it. so, exactly who all will be in b'ham? It seems as

if we may get to have that " mini meet-up " after all. Is it teresa

from VA, denise from atlanta and laura? we are only three hours away

and so we will just drive up that am and mabey stay that night, just

depending on how she does and to see if it is going to rub. is this

first cast for any of those coming that day?

________________________________________________________________________________\

____

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[Guest guest]

We will be in Bham on Jan 30th and 31st.

(mom to Holly 7 mo, 36* curve to right)

_____

From: infantile_scoliosis

[mailto:infantile_scoliosis ] On Behalf Of janet

Sent: Tuesday, January 22, 2008 10:44 AM

To: infantile_scoliosis

Subject: appt. and casting with Dr. Khoury

just wanted to add our name to the list of those who will be in

Birmingham on the 28 of Feb. Sage had her first appt. with him

yesterday and we really liked him. He took x-rays and was able to

show a significant change in the film --- you know the way they

position them, take film and then same position except have pressure

applied at certian point on back? i know thats not an exact science

but it did at least show that her spine still has flexability(right

at 90 to around 37 degrees) and i know that this in not a " cure all "

or magic but it beats the alternative! it is hard for me to go back

to childrens, we spent a very scary long week there in nicu when

sage was born, (we did not know of sages condition before birth,and

then they thought Trisomy18, until dx. of arthrogryposis) so it

still gets to me to have to walk in that hospital,even though we did

continue to use one of the ortho. docs for serial casting on her

feet for a while. he is still there and is actually in same clinic

with Khoury, but was not the right doc. for sage. thats another

thing, khoury understands that we will continue to use her current

ortho. for her feet (club) and did not seem to have any kind of

problem with it. so, exactly who all will be in b'ham? It seems as

if we may get to have that " mini meet-up " after all. Is it teresa

from VA, denise from atlanta and laura? we are only three hours away

and so we will just drive up that am and mabey stay that night, just

depending on how she does and to see if it is going to rub. is this

first cast for any of those coming that day?

[Guest guest]

Hi Janet,

Finn and I will be there on the 28th. We are from St sburg Florida so we

will be flying up on the morning of Feb 27th for the clinic appointment and if

all is well, casting on the 28th. I am happy that we will have a few people

there with us.. This will Finn's first cast.

Nervous and excited,

janet wrote:

just wanted to add our name to the list of those who will be in

Birmingham on the 28 of Feb. Sage had her first appt. with him

yesterday and we really liked him. He took x-rays and was able to

show a significant change in the film --- you know the way they

position them, take film and then same position except have pressure

applied at certian point on back? i know thats not an exact science

but it did at least show that her spine still has flexability(right

at 90 to around 37 degrees) and i know that this in not a " cure all "

or magic but it beats the alternative! it is hard for me to go back

to childrens, we spent a very scary long week there in nicu when

sage was born, (we did not know of sages condition before birth,and

then they thought Trisomy18, until dx. of arthrogryposis) so it

still gets to me to have to walk in that hospital,even though we did

continue to use one of the ortho. docs for serial casting on her

feet for a while. he is still there and is actually in same clinic

with Khoury, but was not the right doc. for sage. thats another

thing, khoury understands that we will continue to use her current

ortho. for her feet (club) and did not seem to have any kind of

problem with it. so, exactly who all will be in b'ham? It seems as

if we may get to have that " mini meet-up " after all. Is it teresa

from VA, denise from atlanta and laura? we are only three hours away

and so we will just drive up that am and mabey stay that night, just

depending on how she does and to see if it is going to rub. is this

first cast for any of those coming that day?

---------------------------------

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[Guest guest]

>

> Hi Janet,

> I'm so glad Sage will be getting treatment with Dr Khoury! It

sounds like he is optimistic that casting will help her, so that is

a very good thing.

> that is interesting about the xray thing they did. I had not

heard of that til now. For Todd's eval., he just looked at the

xrays that had been done here in Atlanta, then examined him without

his shirt and watched him move around.

> Maybe once you start to see the xrays as Sage's back gets

straighter and straighter, you will gain some positive associations

with that hospital. It is an amazing thing to see those xrays.

> This will be the first time we'll have a cast applied on the same

day as anyone else, and now it looks as if there will be three! It

will be nice to be able to meet in person--we have never met anyone

else with infantile scoli. Let us know what you decide about

staying overnight.

> (But I also hope they won't take too long doing the casting...

whoever is last will have a very long day, indeed!)

> Talk with you soon,

> , Mommy to Todd

>

>

> appt. and casting with Dr. Khoury

>

> just wanted to add our name to the list of those who will be in

> Birmingham on the 28 of Feb. Sage had her first appt. with him

> yesterday and we really liked him. He took x-rays and was able to

> show a significant change in the film --- you know the way they

> position them, take film and then same position except have

pressure

> applied at certian point on back? i know thats not an exact

science

> but it did at least show that her spine still has flexability(

right

> at 90 to around 37 degrees) and i know that this in not a " cure

all "

> or magic but it beats the alternative! it is hard for me to go

back

> to childrens, we spent a very scary long week there in nicu when

> sage was born, (we did not know of sages condition before

birth,and

> then they thought Trisomy18, until dx. of arthrogryposis) so it

> still gets to me to have to walk in that hospital,even though we

did

> continue to use one of the ortho. docs for serial casting on her

> feet for a while. he is still there and is actually in same clinic

> with Khoury, but was not the right doc. for sage. thats another

> thing, khoury understands that we will continue to use her current

> ortho. for her feet (club) and did not seem to have any kind of

> problem with it. so, exactly who all will be in b'ham? It seems as

> if we may get to have that " mini meet-up " after all. Is it teresa

> from VA, denise from atlanta and laura? we are only three hours

away

> and so we will just drive up that am and mabey stay that night,

just

> depending on how she does and to see if it is going to rub. is

this

> first cast for any of those coming that day?

>

> so glad to know that there will be others " with us " , the staying

overnight is a wait and see, just depending on how she does. the

sleeping in a hotel bed never goes well with her,it seems easier to

just get up at 4 to head that way, thats what we do when we have

early appt. down in mobile (which is only 2 hours away), to the mom

who asked about the ronald mcdonald house, my advice is that if you

are financially able to stay in a hotel, you will be better off.

that particular r.m. house does not have a good reputation, so if

possible, a private room is better. -- to solve this delima of

where we all stay, i think that we should just go in together and

buy a little piece of property just out of town and build ourselves

a " casting cabin " ha-ha-- my husband and i built our house and he is

an electrician, so we've got the know-how just NO MONEY!!! no

seriously, we go up to a place above Fort Payne sometimes, out in

the woods, but with some land for sale(only an hour from b'ham) so

mabey seeing this in the future???what do you say moms, anyone have

lots of extra time, money, and talent to spare?? yeah right!and we

are last for the day, because sage is the oldest of the three to be

casted that day, or at least thats what his nurse said. I am so

nervous, do you ever stop questioning yourself about if you are

doing the right thing or not? what are some of the things that we

need to bring? do they put some type of " shirt " on under the cast?

how long did your children wear their first cast? and i am wondering

about how she will do in the carseat. she is in a front facing

upright. denise, i had sages x ray (that were done lying down, just

last thurday,) but he wanted to do his own, which i figured he

would. i think it was to see just if her spine would give at all. i

asked him to rate her 1-10 of how severe compared to what he has

seen throughout his career, and he said he would put her at an 8 or

9, he even knew one of the moms i have talked with through the

arthro. group just by me saying a little about that child, not

calling his name. just saying that he was comparable to sage in the

way they were affected and where he lives, so that let me know he

takes a real interest in these kids!

_____________________________________________________________________

____

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

>

[Guest guest]

Janet,

Ugh, sorry to hear Sage is last for the day. Hopefully the first two will go

fast. Actually you really never know for sure, sometimes the hospital will

rearrange for some reason or another.

I totally understand feeling nervous, wondering if you're making the right

decisions. I think you will start to feel more comfortable once Sage is in the

first cast. Then there won't be all those unknowns any more, plus you can see

how she adjusts, and you can start to figure out what to do, too. As someone

told me when I was sooo nervous before Todd's first cast, the anticipation is

much worse than the reality. Hang in there! You're doing the right thing--at

least you are doing something, and not just waiting while it gets worse and

worse. I kept reminding myself how much more difficult surgical interventions

for scoliosis would be, and that casting will probably mean those interventions

won't be needed.

Carseat: can be difficult depending on how the cast affects how much her legs

will bend up. Make sure you remember how to loosen the straps so you don't have

to fiddle with it too much on the day. Also, I hate to admit this, but we ended

up folding a small towel to put under Todd's bottom because otherwise he just

could not last more than 15 minutes at a time. Now, it's not so bad and we've

removed it. So it varies.

How long in cast: Dr K will tell you this once he gets finished. It varies. I

think the first cast usually does not stay on as long as later ones because the

first cast usually won't get as much correction. I think 5 weeks to 3 months is

the range, though.

They use a lining under the cast, which they tape up over the edges. It's

antimicrobial I think--they said it's supposed to not smell as much as the old

ones. Not too sure about that, though!

What to bring: Her favorite DVDs and a portable player if you have one. There

are players in the rooms, but some don't work. Whatever toys/distractions she

might like. Looks like there will be a long wait and she can't have anything by

mouth and will be hungry and thirsty! Her comfort items--blankie, soft toy,

paci, etc. Her favorite sippy cup unless she likes to drink from a straw. They

will provide apple juice and water for you to give her--she needs to drink

before they will let you leave. If she prefers some other clear liquid, bring

it. Bring gas drops!!! And Infant tylenol, but of course ask before dosing

her. And bring larger shirts or onesies, whichever you use. Bottoms will

probably stay same size. We needed diapers one size smaller--they ride lower

down--to prevent leaks. Have towels, etc. for the car in case she gets sick

after you leave. Bring something for yourself to eat after they take her

back--as you know, the food there

is awful. And bring pictures--I love to see photos! )

Glad you felt Dr K was caring. We do, too, and really appreciate that about

him. I think he does take an interest in the patients, and he has never been in

a hurry with us.

There have been a bunch!! of recent posts about treatment with Dr K, so if you

haven't found the answers to every single question you could ever imagine, feel

free to email and I will try to help if I can. )

, Mommy to Todd

Re: appt. and casting with Dr. Khoury

__so glad to know that there will be others " with us " , the staying

overnight is a wait and see, just depending on how she does. the

sleeping in a hotel bed never goes well with her,it seems easier to

just get up at 4 to head that way, thats what we do when we have

early appt. down in mobile (which is only 2 hours away), to the mom

who asked about the ronald mcdonald house, my advice is that if you

are financially able to stay in a hotel, you will be better off.

that particular r.m. house does not have a good reputation, so if

possible, a private room is better. -- to solve this delima of

where we all stay, i think that we should just go in together and

buy a little piece of property just out of town and build ourselves

a " casting cabin " ha-ha- - my husband and i built our house and he is

an electrician, so we've got the know-how just NO MONEY!!! no

seriously, we go up to a place above Fort Payne sometimes, out in

the woods, but with some land for sale(only an hour from b'ham) so

mabey seeing this in the future???what do you say moms, anyone have

lots of extra time, money, and talent to spare?? yeah right!and we

are last for the day, because sage is the oldest of the three to be

casted that day, or at least thats what his nurse said. I am so

nervous, do you ever stop questioning yourself about if you are

doing the right thing or not? what are some of the things that we

need to bring? do they put some type of " shirt " on under the cast?

how long did your children wear their first cast? and i am wondering

about how she will do in the carseat. she is in a front facing

upright. denise, i had sages x ray (that were done lying down, just

last thurday,) but he wanted to do his own, which i figured he

would. i think it was to see just if her spine would give at all. i

asked him to rate her 1-10 of how severe compared to what he has

seen throughout his career, and he said he would put her at an 8 or

9, he even knew one of the moms i have talked with through the

arthro. group just by me saying a little about that child, not

calling his name. just saying that he was comparable to sage in the

way they were affected and where he lives, so that let me know he

takes a real interest in these kids!

_

________________________________________________________________________________\

____

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