Re: Re: Update on Kylie

March 19, 2006

Thanks for the update ! Woo-Hoo for Kylie!

I'm glad to hear there is hope for her now. I know

how worried you've been about what's next (basically

nothing). It was great to talk to you on the phone!

We'll be back to visit on the 30th. Kylie will be

ready for the shopping spree for a new wardrobe!!!

Cool for Kylie!

Carmell

mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL,

GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

March 19, 2006

Thanks . She will be transfered to Primary

Children's with her Halo still on.

I'll let you know how things go.

--- <christinehrph@...> wrote:

> -

> WHAT GREAT NEWS!!!!!!!

>

> We are so happy this is such grat news for you

> guys...I still find

> it amazing that she will miss the Halos...

>

> Hope to hear for you guys soon are you in the halos

> till the surgery?

>

> Wonderful .....just in time for the summer..it must

> of been all the

> vitiams in the Carnation breakfast drinks you guys

> kept giving

> them ...hehe

>

> -- In infantile scoliosis treatment ,

> Lether

> <nlether@...> wrote:

> >

> > Hi,

> >

> > I wanted to give you all an update on Kylie since

> it's

> > been awhile. First of all, she is doing very

> well.

> > She is enjoying her 3rd Halo completely!!!

> Second,

> > your not going to believe this one, on Wednesday

> she

> > was approved for the VEPTR!!!!!! We never thought

> > this day would come and it couldn't have come at a

> > better time. It had been mentioned that casts

> were

> > not an option anymore and that this current halo

> > traction was probably her last.

> >

> > Kylie will have her VEPTR surgery on April 3rd.

> She

> > will be transferred, in her halo, to Primary

> > Children's that morning. Dr. Santora, her doctor

> > since birth, will assist Dr. with the

> > surgery. After 2-4 days, she will be transferred

> back

> > to Shriner's to finish recovering. Her 6 mon.

> > lenghtenings will be done at Shriner's.

> >

> > Kylie understands how important this surgery is

> for

> > her. She is very happy to be done with casts and

> > braces. She has worn them for 8 years. She is

> though,

> > very upset about no more Halos.

> >

> > Well, that's about all for now. I will keep you

> > update.

> >

> > Later,

> >

> > __________________________________________________

> >

March 20, 2006

Oh, how wonderful that she was approved for the VEPTR! I couldn't be happier for you both. Good luck with everything and keep us posted!

Noelle (12-2-01)Ian (8-15-04)

Re: Update on Kylie

Hi,I wanted to give you all an update on Kylie since it'sbeen awhile. First of all, she is doing very well. She is enjoying her 3rd Halo completely!!! Second,your not going to believe this one, on Wednesday shewas approved for the VEPTR!!!!!! We never thoughtthis day would come and it couldn't have come at abetter time. It had been mentioned that casts werenot an option anymore and that this current halotraction was probably her last. Kylie will have her VEPTR surgery on April 3rd. Shewill be transferred, in her halo, to PrimaryChildren's that morning. Dr. Santora, her doctorsince birth, will assist Dr. with thesurgery. After 2-4 days, she will be transferred backto Shriner's to finish recovering. Her 6 mon.lenghtenings will be done at Shriner's.Kylie understands how important this surgery is forher. She is very happy to be done with casts andbraces. She has worn them for 8 years. She is though,very upset about no more Halos. Well, that's about all for now. I will keep youupdate.Later,__________________________________________________

March 20, 2006

!!!! I am so happy for Kylie and your family. What a great answer after so many years of treatment. I will definitely be thinking of Kylie and praying for her on April 3rd. I can't wait to hear how awesome she does with it. Shellie Lether <nlether@...> wrote: Hi,I wanted to give you all an update on Kylie since it'sbeen awhile. First of all, she is doing very well. She is enjoying her 3rd Halo completely!!! Second,your not going to believe this one, on Wednesday shewas approved for the VEPTR!!!!!! We never thoughtthis day would come and it couldn't have come at abetter time. It had been mentioned that casts werenot an option anymore and that this current halotraction was probably her

last. Kylie will have her VEPTR surgery on April 3rd. Shewill be transferred, in her halo, to PrimaryChildren's that morning. Dr. Santora, her doctorsince birth, will assist Dr. with thesurgery. After 2-4 days, she will be transferred backto Shriner's to finish recovering. Her 6 mon.lenghtenings will be done at Shriner's.Kylie understands how important this surgery is forher. She is very happy to be done with casts andbraces. She has worn them for 8 years. She is though,very upset about no more Halos. Well, that's about all for now. I will keep youupdate.Later,__________________________________________________

March 20, 2006

that is so great!! I am so happy for you guys! We will keep you guys in our prayers! and Kasey ArnoldShellie Grant <shelliegrant@...> wrote: !!!! I am so happy for Kylie and your family. What a great answer after so many years of treatment. I will definitely be thinking of Kylie and praying for her on April 3rd. I can't wait to hear how awesome she does with it. Shellie Lether <nlether@...> wrote: Hi,I wanted to give you all an update on Kylie since it'sbeen awhile. First of all, she is doing very well. She is enjoying her 3rd Halo

completely!!! Second,your not going to believe this one, on Wednesday shewas approved for the VEPTR!!!!!! We never thoughtthis day would come and it couldn't have come at abetter time. It had been mentioned that casts werenot an option anymore and that this current halotraction was probably her last. Kylie will have her VEPTR surgery on April 3rd. Shewill be transferred, in her halo, to PrimaryChildren's that morning. Dr. Santora, her doctorsince birth, will assist Dr. with thesurgery. After 2-4 days, she will be transferred backto Shriner's to finish recovering. Her 6 mon.lenghtenings will be done at Shriner's.Kylie understands how important this surgery is forher. She is very happy to be done with casts andbraces. She has worn them for 8 years. She is though,very upset about no more Halos. Well, that's about all for now. I will keep

youupdate.Later,__________________________________________________

March 20, 2006

,

I

find it funny too that Kylie will miss the Halos also.

I

would think she would want to get rid of it and not have anymore. I know I

would.

Betty

November 23, 2006

,

So sorry to hear about Kylies situation. I know this is not what you need

to hear but it sounds like Kylies spine has a mind of it's own. At least

you have come up with a way to prevent surgery still which is very good.

How old is Kylie? You probably have told us but I forgot.

What age are they looking at to safely fuse Kylie's spine?

Betty

November 29, 2006

Thank you. How is Nadia doing? She is so adorable!

Take care,

--- Abigail Schein <zimmyshine@...> wrote:

> , We are so sorry to hear about all the

> complications Kylie is having, and yet are so

> impressed with your ingenuity and her spirit.

> Everytime I see the little monkey puppet Nadia made

> with Kylie at Shriners SLC, I think of you. Good

> luck with everything and thanks for keeping us all

> in the loop! xo Abigail and Nadia

>

> ---------------------------------

> Cheap Talk? Check out Messenger's low

> PC-to-Phone call rates.

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

____

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February 11, 2007

Hi ,

I am so sorry to hear everything that Kylie has had to go through. But, she

seems to have such a positive attitude about everything. I will keep my fingers

crossed that they come up some sort of solution for her soon. (((HUGS)))

Noelle (12-2-01)

Ian (8-15-04)

RE: Update on Kylie

Hi,

As you know, Kylie has been at Shriner's Hospital

in SLC since Jan. 8th with her 4th Halo traction. Her

upper spine and neck has been completely straightened.

We've had a bit of changes in our original plans.

Kylie was suppose to have her Halo removed, VEPTR

expanded and then go into a brace with neck support on

Feb. 8th. Didn't happen! After re evaluating the

plan, her Dr.'s felt this was not going to hold her

long at all. We came up with a different plan that

will hold the correction longer but not much. They

are keeping her Halo on for about 2-3 more weeks, on

Feb. 8th, they tried moving her VEPTR up to get more

of a hold on her kyphosis but was unable to get it to

attach due to too much kyphosis still, the right side

immediately popped off and broke the rib. She is

doing great for just going through all of that. She

was up the next day, on the go all day with only one

dose of Motrin. After 2-3 weeks of staying in the

Halo traction to hold her as she heals, Kylie's dream

will come true. She gets to go home with her Halo

still on! Her Halo will be transfered on a brace (a

Halo brace) holding her neck in traction for about 4-6

more weeks, then it will come off and she will then go

into the brace with neck support.

We only have one more option we can try before

she has no choice but to undergo a neck down fusion.

Unless something else is discovered soon, once Kylie's

upper spine and neck collapses again, they will then

put her in Halo #5 then do a 2 1/2 inch fusion of her

kyphosis, leave her VEPTR in, put her into the Halo

brace again until the fusion is healed. She should

then be able to reach the age of 15 or 16 before

undergoing a full fusion.

Kylie has undergone every treatment out there to

avoid a spinal fusion, most she has done many times.

Her Dr.'s and us are not ready to give in to her

kypho-scoliosis. We will all continue looking into

anyway possible to hold off fusing her from the neck

down, which is how she will have to be fused, due to

her muscle myopathy.

I will let you all know how things go.

__________________________________________________________

Bored stiff? Loosen up...

Download and play hundreds of games for free on Games.

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February 12, 2007

Hi !

I've been wondering how Miss Kylie is doing. For

anyone who has not met her, she is the most adorable

kid. She LOVES her Shriners and halo. Really! She

has an amazing attitude. Something I'm sure makes

these very interesting (read: difficult) times a

little easier to endure. Kylie is one tough cookie.

She has the determination to make it through whatever

she's been given. I'm glad the docs are working out a

plan that will be best for her. Her body just doesn't

like to be changed. I hope the halo brace and then

the neck brace will be the right answers for her for a

long time.

Thanks for the update. If I get a chance, we'll come

to say HI tomorrow (Tuesday)!

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 16, GERD, and

Braydon 11, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, pes cavus,

SUA, GERD, Gastroparesis, etc. http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

CongenitalScoliosisSupport/

________________________________________________________________________________\

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February 13, 2007

,

Thank you so much! It's been a long and very bumpy

road, but we will do whatever it takes. How is Owen

doing? He is so cute! We will have to come up and

visit you both in April while you are out here.

Take care,

--- adelaney4 <adelaney4@...> wrote:

> Wow . I can't believe how much you both have

> had to endure. I can only begin to

> imagine. I've been thinking about you both a lot

> and I wanted to tell you how nice it was

> to see you again when Owen and I were there for his

> last brace. It always helps to see a

> familiar face when staying at the hospital.

> I pray that this option holds her and you can

> postpone fusion until she has had more time

> to grow. But whatever may happen, you can take

> comfort in knowing that you have done

> an outrageous job of doing everything you can to

> help her. You deserve an enormous pat

> on the back and a huge Worlds Best Mother award.

> You and kylie both are an inspiration

> to us all. I wish you the best of luck and perhaps

> we will see you on our next visit

> (although hopefully not for your sake!) We go April

> 15.

> Best to you both

> & Owen

>

> >

> > Hi,

> >

> > As you know, Kylie has been at Shriner's

> Hospital

> > in SLC since Jan. 8th with her 4th Halo traction.

> Her

> > upper spine and neck has been completely

> straightened.

> > We've had a bit of changes in our original plans.

>

> > Kylie was suppose to have her Halo removed, VEPTR

> > expanded and then go into a brace with neck

> support on

> > Feb. 8th. Didn't happen! After re evaluating the

> > plan, her Dr.'s felt this was not going to hold

> her

> > long at all. We came up with a different plan that

> > will hold the correction longer but not much.

> They

> > are keeping her Halo on for about 2-3 more weeks,

> on

> > Feb. 8th, they tried moving her VEPTR up to get

> more

> > of a hold on her kyphosis but was unable to get it

> to

> > attach due to too much kyphosis still, the right

> side

> > immediately popped off and broke the rib. She is

> > doing great for just going through all of that.

> She

> > was up the next day, on the go all day with only

> one

> > dose of Motrin. After 2-3 weeks of staying in the

> > Halo traction to hold her as she heals, Kylie's

> dream

> > will come true. She gets to go home with her Halo

> > still on! Her Halo will be transfered on a brace

> (a

> > Halo brace) holding her neck in traction for about

> 4-6

> > more weeks, then it will come off and she will

> then go

> > into the brace with neck support.

> >

> > We only have one more option we can try

> before

> > she has no choice but to undergo a neck down

> fusion.

> > Unless something else is discovered soon, once

> Kylie's

> > upper spine and neck collapses again, they will

> then

> > put her in Halo #5 then do a 2 1/2 inch fusion of

> her

> > kyphosis, leave her VEPTR in, put her into the

> Halo

> > brace again until the fusion is healed. She should

> > then be able to reach the age of 15 or 16 before

> > undergoing a full fusion.

> >

> > Kylie has undergone every treatment out there

> to

> > avoid a spinal fusion, most she has done many

> times.

> > Her Dr.'s and us are not ready to give in to her

> > kypho-scoliosis. We will all continue looking into

> > anyway possible to hold off fusing her from the

> neck

> > down, which is how she will have to be fused, due

> to

> > her muscle myopathy.

> >

> > I will let you all know how things go.

> >

>

________________________________________________________________________________\

____

> > Bored stiff? Loosen up...

> > Download and play hundreds of games for free on

> Games.

> > http://games./games/front

> >

>

________________________________________________________________________________\

____

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February 14, 2007

Wow

Congratulations on your perseverence and the creative suggestions of her docs.

If Kylie's case was in a TV show no one would believe it and still that little

personality shines through for all of us. YOu are both so inspiring.

Bridget will be back at Shiners with her dad this time in the last week of

April. I know she will be looking forwars to seeing Kylie and you if you are

around.

Have they named a dish after Kylie at the cafeteria yet?

love Bert and Bridget

Lether <nlether@...> wrote:

,

Thank you so much! It's been a long and very bumpy

road, but we will do whatever it takes. How is Owen

doing? He is so cute! We will have to come up and

visit you both in April while you are out here.

Take care,

--- adelaney4 <adelaney4@...> wrote:

> Wow . I can't believe how much you both have

> had to endure. I can only begin to

> imagine. I've been thinking about you both a lot

> and I wanted to tell you how nice it was

> to see you again when Owen and I were there for his

> last brace. It always helps to see a

> familiar face when staying at the hospital.

> I pray that this option holds her and you can

> postpone fusion until she has had more time

> to grow. But whatever may happen, you can take

> comfort in knowing that you have done

> an outrageous job of doing everything you can to

> help her. You deserve an enormous pat

> on the back and a huge Worlds Best Mother award.

> You and kylie both are an inspiration

> to us all. I wish you the best of luck and perhaps

> we will see you on our next visit

> (although hopefully not for your sake!) We go April

> 15.

> Best to you both

> & Owen

>

> >

> > Hi,

> >

> > As you know, Kylie has been at Shriner's

> Hospital

> > in SLC since Jan. 8th with her 4th Halo traction.

> Her

> > upper spine and neck has been completely

> straightened.

> > We've had a bit of changes in our original plans.

>

> > Kylie was suppose to have her Halo removed, VEPTR

> > expanded and then go into a brace with neck

> support on

> > Feb. 8th. Didn't happen! After re evaluating the

> > plan, her Dr.'s felt this was not going to hold

> her

> > long at all. We came up with a different plan that

> > will hold the correction longer but not much.

> They

> > are keeping her Halo on for about 2-3 more weeks,

> on

> > Feb. 8th, they tried moving her VEPTR up to get

> more

> > of a hold on her kyphosis but was unable to get it

> to

> > attach due to too much kyphosis still, the right

> side

> > immediately popped off and broke the rib. She is

> > doing great for just going through all of that.

> She

> > was up the next day, on the go all day with only

> one

> > dose of Motrin. After 2-3 weeks of staying in the

> > Halo traction to hold her as she heals, Kylie's

> dream

> > will come true. She gets to go home with her Halo

> > still on! Her Halo will be transfered on a brace

> (a

> > Halo brace) holding her neck in traction for about

> 4-6

> > more weeks, then it will come off and she will

> then go

> > into the brace with neck support.

> >

> > We only have one more option we can try

> before

> > she has no choice but to undergo a neck down

> fusion.

> > Unless something else is discovered soon, once

> Kylie's

> > upper spine and neck collapses again, they will

> then

> > put her in Halo #5 then do a 2 1/2 inch fusion of

> her

> > kyphosis, leave her VEPTR in, put her into the

> Halo

> > brace again until the fusion is healed. She should

> > then be able to reach the age of 15 or 16 before

> > undergoing a full fusion.

> >

> > Kylie has undergone every treatment out there

> to

> > avoid a spinal fusion, most she has done many

> times.

> > Her Dr.'s and us are not ready to give in to her

> > kypho-scoliosis. We will all continue looking into

> > anyway possible to hold off fusing her from the

> neck

> > down, which is how she will have to be fused, due

> to

> > her muscle myopathy.

> >

> > I will let you all know how things go.

> >

>

__________________________________________________________

> > Bored stiff? Loosen up...

> > Download and play hundreds of games for free on

> Games.

> > http://games./games/front

> >

>

__________________________________________________________

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February 14, 2007

Bert,

Your so funny! I also think that the cafeteria should name a dish after Kylie,

and perhaps we should recommend this to Francisco (our favorite chef) when we

get there in March. Great idea.

HRH

Re: Re: Update on Kylie

Wow

Congratulations on your perseverence and the creative suggestions of her docs.

If Kylie's case was in a TV show no one would believe it and still that little

personality shines through for all of us. YOu are both so inspiring.

Bridget will be back at Shiners with her dad this time in the last week of

April. I know she will be looking forwars to seeing Kylie and you if you are

around.

Have they named a dish after Kylie at the cafeteria yet?

love Bert and Bridget

Lether <nlether@...> wrote:

,

Thank you so much! It's been a long and very bumpy

road, but we will do whatever it takes. How is Owen

doing? He is so cute! We will have to come up and

visit you both in April while you are out here.

Take care,

--- adelaney4 <adelaney4@...> wrote:

> Wow . I can't believe how much you both have

> had to endure. I can only begin to

> imagine. I've been thinking about you both a lot

> and I wanted to tell you how nice it was

> to see you again when Owen and I were there for his

> last brace. It always helps to see a

> familiar face when staying at the hospital.

> I pray that this option holds her and you can

> postpone fusion until she has had more time

> to grow. But whatever may happen, you can take

> comfort in knowing that you have done

> an outrageous job of doing everything you can to

> help her. You deserve an enormous pat

> on the back and a huge Worlds Best Mother award.

> You and kylie both are an inspiration

> to us all. I wish you the best of luck and perhaps

> we will see you on our next visit

> (although hopefully not for your sake!) We go April

> 15.

> Best to you both

> & Owen

>

> >

> > Hi,

> >

> > As you know, Kylie has been at Shriner's

> Hospital

> > in SLC since Jan. 8th with her 4th Halo traction.

> Her

> > upper spine and neck has been completely

> straightened.

> > We've had a bit of changes in our original plans.

>

> > Kylie was suppose to have her Halo removed, VEPTR

> > expanded and then go into a brace with neck

> support on

> > Feb. 8th. Didn't happen! After re evaluating the

> > plan, her Dr.'s felt this was not going to hold

> her

> > long at all. We came up with a different plan that

> > will hold the correction longer but not much.

> They

> > are keeping her Halo on for about 2-3 more weeks,

> on

> > Feb. 8th, they tried moving her VEPTR up to get

> more

> > of a hold on her kyphosis but was unable to get it

> to

> > attach due to too much kyphosis still, the right

> side

> > immediately popped off and broke the rib. She is

> > doing great for just going through all of that.

> She

> > was up the next day, on the go all day with only

> one

> > dose of Motrin. After 2-3 weeks of staying in the

> > Halo traction to hold her as she heals, Kylie's

> dream

> > will come true. She gets to go home with her Halo

> > still on! Her Halo will be transfered on a brace

> (a

> > Halo brace) holding her neck in traction for about

> 4-6

> > more weeks, then it will come off and she will

> then go

> > into the brace with neck support.

> >

> > We only have one more option we can try

> before

> > she has no choice but to undergo a neck down

> fusion.

> > Unless something else is discovered soon, once

> Kylie's

> > upper spine and neck collapses again, they will

> then

> > put her in Halo #5 then do a 2 1/2 inch fusion of

> her

> > kyphosis, leave her VEPTR in, put her into the

> Halo

> > brace again until the fusion is healed. She should

> > then be able to reach the age of 15 or 16 before

> > undergoing a full fusion.

> >

> > Kylie has undergone every treatment out there

> to

> > avoid a spinal fusion, most she has done many

> times.

> > Her Dr.'s and us are not ready to give in to her

> > kypho-scoliosis. We will all continue looking into

> > anyway possible to hold off fusing her from the

> neck

> > down, which is how she will have to be fused, due

> to

> > her muscle myopathy.

> >

> > I will let you all know how things go.

> >

>

__________________________________________________________

> > Bored stiff? Loosen up...

> > Download and play hundreds of games for free on

> Games.

> > http://games./games/front

> >

>

__________________________________________________________

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with the Search movie showtime shortcut.

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

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February 15, 2007

Maybe they need one for Olivia too.

I think I know the one for Kylie. It would be the sauce she makes for her

fries by mixing mayo and ketchup.

What should they name for Olivia? I'm sure Francesco will be happy to oblige.

Bert

heather hyatt <heather@...> wrote:

Bert,

Your so funny! I also think that the cafeteria should name a dish after Kylie,

and perhaps we should recommend this to Francisco (our favorite chef) when we

get there in March. Great idea.

HRH

Re: Re: Update on Kylie

Wow

Congratulations on your perseverence and the creative suggestions of her docs.

If Kylie's case was in a TV show no one would believe it and still that little

personality shines through for all of us. YOu are both so inspiring.

Bridget will be back at Shiners with her dad this time in the last week of

April. I know she will be looking forwars to seeing Kylie and you if you are

around.

Have they named a dish after Kylie at the cafeteria yet?

love Bert and Bridget

Lether <nlether@...> wrote:

,

Thank you so much! It's been a long and very bumpy

road, but we will do whatever it takes. How is Owen

doing? He is so cute! We will have to come up and

visit you both in April while you are out here.

Take care,

--- adelaney4 <adelaney4@...> wrote:

> Wow . I can't believe how much you both have

> had to endure. I can only begin to

> imagine. I've been thinking about you both a lot

> and I wanted to tell you how nice it was

> to see you again when Owen and I were there for his

> last brace. It always helps to see a

> familiar face when staying at the hospital.

> I pray that this option holds her and you can

> postpone fusion until she has had more time

> to grow. But whatever may happen, you can take

> comfort in knowing that you have done

> an outrageous job of doing everything you can to

> help her. You deserve an enormous pat

> on the back and a huge Worlds Best Mother award.

> You and kylie both are an inspiration

> to us all. I wish you the best of luck and perhaps

> we will see you on our next visit

> (although hopefully not for your sake!) We go April

> 15.

> Best to you both

> & Owen

>

> >

> > Hi,

> >

> > As you know, Kylie has been at Shriner's

> Hospital

> > in SLC since Jan. 8th with her 4th Halo traction.

> Her

> > upper spine and neck has been completely

> straightened.

> > We've had a bit of changes in our original plans.

>

> > Kylie was suppose to have her Halo removed, VEPTR

> > expanded and then go into a brace with neck

> support on

> > Feb. 8th. Didn't happen! After re evaluating the

> > plan, her Dr.'s felt this was not going to hold

> her

> > long at all. We came up with a different plan that

> > will hold the correction longer but not much.

> They

> > are keeping her Halo on for about 2-3 more weeks,

> on

> > Feb. 8th, they tried moving her VEPTR up to get

> more

> > of a hold on her kyphosis but was unable to get it

> to

> > attach due to too much kyphosis still, the right

> side

> > immediately popped off and broke the rib. She is

> > doing great for just going through all of that.

> She

> > was up the next day, on the go all day with only

> one

> > dose of Motrin. After 2-3 weeks of staying in the

> > Halo traction to hold her as she heals, Kylie's

> dream

> > will come true. She gets to go home with her Halo

> > still on! Her Halo will be transfered on a brace

> (a

> > Halo brace) holding her neck in traction for about

> 4-6

> > more weeks, then it will come off and she will

> then go

> > into the brace with neck support.

> >

> > We only have one more option we can try

> before

> > she has no choice but to undergo a neck down

> fusion.

> > Unless something else is discovered soon, once

> Kylie's

> > upper spine and neck collapses again, they will

> then

> > put her in Halo #5 then do a 2 1/2 inch fusion of

> her

> > kyphosis, leave her VEPTR in, put her into the

> Halo

> > brace again until the fusion is healed. She should

> > then be able to reach the age of 15 or 16 before

> > undergoing a full fusion.

> >

> > Kylie has undergone every treatment out there

> to

> > avoid a spinal fusion, most she has done many

> times.

> > Her Dr.'s and us are not ready to give in to her

> > kypho-scoliosis. We will all continue looking into

> > anyway possible to hold off fusing her from the

> neck

> > down, which is how she will have to be fused, due

> to

> > her muscle myopathy.

> >

> > I will let you all know how things go.

> >

>

__________________________________________________________

> > Bored stiff? Loosen up...

> > Download and play hundreds of games for free on

> Games.

> > http://games./games/front

> >

>

__________________________________________________________

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Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

February 19, 2007

<<I think I know the one for Kylie. It would be the

sauce she makes for her fries by mixing mayo and

ketchup.>>

Fry sauce - definitely a Utah thing. Was quite a

topic of conversation at the 2002 Winter Olympics.

Love the stuff.

We'll miss you in April, Bert.