Re: RE: Kylie's Having Surgery Monday

[Guest guest]

Sending big hugs and prayers for all of you!

Lether <nlether@...> wrote: Hi everyone,

I thought I'd let you all know that Kylie will be

having surgery on Monday. As most of you know, Kylie

received the VEPTR in April. She has hit her first

complication with it, the top part that goes around

the rib has completely opened up and is not hooked to

the rib anymore. It is bulging so much, Dr. at

Primary Children's said it wouldn't take long to break

through the skin. We were told that the reason this

happened was a combination of 2 things. The 1st thing

is that Kylie's kyphosis is in that area and that

alone puts a lot of tension on the device, 2nd, Kylie

is very bent over due to her soft tissues that need to

be released, this is caused from her muscle myopathy.

This causes gravity to pull and put even more tension

on it. It was more than the device could tolerate and

it gave. Monday, Dr. will reattach that left

side and do an expansion as well. On October 11th, at

Shriner's, she will have her soft tissues behind both

knees and hips released. This will allow her to

straighten her legs all the way and stand up straight.

Hopefully this will not happen again, but you never

know with Kylie. She's always the exception to the

rule!!

I will let you know how things go!

__________________________________________________

[Guest guest]

Thanks so much Gail!

We'll need it.

--- Gail Kimball <patsmum2000@...> wrote:

> Sending big hugs and prayers for all of you!

>

> Lether <nlether@...> wrote: Hi

> everyone,

>

> I thought I'd let you all know that Kylie will be

> having surgery on Monday. As most of you know, Kylie

> received the VEPTR in April. She has hit her first

> complication with it, the top part that goes around

> the rib has completely opened up and is not hooked

> to

> the rib anymore. It is bulging so much, Dr. at

> Primary Children's said it wouldn't take long to

> break

> through the skin. We were told that the reason this

> happened was a combination of 2 things. The 1st

> thing

> is that Kylie's kyphosis is in that area and that

> alone puts a lot of tension on the device, 2nd,

> Kylie

> is very bent over due to her soft tissues that need

> to

> be released, this is caused from her muscle

> myopathy.

> This causes gravity to pull and put even more

> tension

> on it. It was more than the device could tolerate

> and

> it gave. Monday, Dr. will reattach that left

> side and do an expansion as well. On October 11th,

> at

> Shriner's, she will have her soft tissues behind

> both

> knees and hips released. This will allow her to

> straighten her legs all the way and stand up

> straight.

> Hopefully this will not happen again, but you never

> know with Kylie. She's always the exception to the

> rule!!

>

> I will let you know how things go!

>

>

>

>

> __________________________________________________

>

[Guest guest]

natalie,

we'll all be thinking of you on monday. kylie is such a strong girl! i'm

always reminded of this when i go through the photos that you have posted on the

group. i would think that she would be in some pain from the device protruding

so much, but thank goodness she's not. please let us know how she does. since

it is a little more than just an expansion, will you guys be in the hospital for

long?

big hugs from lucas, geordie, ruby and me!

deshea

---- Original message ----

>Date: Thu, 17 Aug 2006 20:56:03 -0700 (PDT)

>From: Lether <nlether@...>

>Subject: RE: Kylie's Having Surgery Monday

>infantile scoliosis treatment

>

> Hi everyone,

>

> I thought I'd let you all know that Kylie will be

> having surgery on Monday. As most of you know, Kylie

> received the VEPTR in April. She has hit her first

> complication with it, the top part that goes around

> the rib has completely opened up and is not hooked

> to

> the rib anymore. It is bulging so much, Dr. at

> Primary Children's said it wouldn't take long to

> break

> through the skin. We were told that the reason this

> happened was a combination of 2 things. The 1st

> thing

> is that Kylie's kyphosis is in that area and that

> alone puts a lot of tension on the device, 2nd,

> Kylie

> is very bent over due to her soft tissues that need

> to

> be released, this is caused from her muscle

> myopathy.

> This causes gravity to pull and put even more

> tension

> on it. It was more than the device could tolerate

> and

> it gave. Monday, Dr. will reattach that left

> side and do an expansion as well. On October 11th,

> at

> Shriner's, she will have her soft tissues behind

> both

> knees and hips released. This will allow her to

> straighten her legs all the way and stand up

> straight.

> Hopefully this will not happen again, but you never

> know with Kylie. She's always the exception to the

> rule!!

>

> I will let you know how things go!

>

>

>

> __________________________________________________

>

[Guest guest]

,

Thanks for sharing this with us!! We will be praying for Kylie and the

doctors, and you!! What a tough girl. Such an inspiration. Let us know how

long they think she will be in the hospital. We love you guys.

Shellie

Lether <nlether@...> wrote:

Hi everyone,

I thought I'd let you all know that Kylie will be

having surgery on Monday. As most of you know, Kylie

received the VEPTR in April. She has hit her first

complication with it, the top part that goes around

the rib has completely opened up and is not hooked to

the rib anymore. It is bulging so much, Dr. at

Primary Children's said it wouldn't take long to break

through the skin. We were told that the reason this

happened was a combination of 2 things. The 1st thing

is that Kylie's kyphosis is in that area and that

alone puts a lot of tension on the device, 2nd, Kylie

is very bent over due to her soft tissues that need to

be released, this is caused from her muscle myopathy.

This causes gravity to pull and put even more tension

on it. It was more than the device could tolerate and

it gave. Monday, Dr. will reattach that left

side and do an expansion as well. On October 11th, at

Shriner's, she will have her soft tissues behind both

knees and hips released. This will allow her to

straighten her legs all the way and stand up straight.

Hopefully this will not happen again, but you never

know with Kylie. She's always the exception to the

rule!!

I will let you know how things go!

__________________________________________________

[Guest guest]

Dear and Kylie,

Good luck and our prayers will be with you on MOnday. Bridget and I can't

wait to see you both at the end of October so we are looking forward to you

being up and ready to party by then.

I am sure the indomitable Kylie spirit will overcome this hurdle too.

Much love

Bridget and Bert

PS Cormac says don't forget Pants, he will cheer you up.

Lether <nlether@...> wrote:

Hi everyone,

I thought I'd let you all know that Kylie will be

having surgery on Monday. As most of you know, Kylie

received the VEPTR in April. She has hit her first

complication with it, the top part that goes around

the rib has completely opened up and is not hooked to

the rib anymore. It is bulging so much, Dr. at

Primary Children's said it wouldn't take long to break

through the skin. We were told that the reason this

happened was a combination of 2 things. The 1st thing

is that Kylie's kyphosis is in that area and that

alone puts a lot of tension on the device, 2nd, Kylie

is very bent over due to her soft tissues that need to

be released, this is caused from her muscle myopathy.

This causes gravity to pull and put even more tension

on it. It was more than the device could tolerate and

it gave. Monday, Dr. will reattach that left

side and do an expansion as well. On October 11th, at

Shriner's, she will have her soft tissues behind both

knees and hips released. This will allow her to

straighten her legs all the way and stand up straight.

Hopefully this will not happen again, but you never

know with Kylie. She's always the exception to the

rule!!

I will let you know how things go!

__________________________________________________

[Guest guest]

I will certainly be keeping her in my thoughts. I hope all goes well for her.

Best of luck and keep us posted.

Noelle (12-2-01)

Ian (8-15-04)

RE: Kylie's Having Surgery Monday

Hi everyone,

I thought I'd let you all know that Kylie will be

having surgery on Monday. As most of you know, Kylie

received the VEPTR in April. She has hit her first

complication with it, the top part that goes around

the rib has completely opened up and is not hooked to

the rib anymore. It is bulging so much, Dr. at

Primary Children's said it wouldn't take long to break

through the skin. We were told that the reason this

happened was a combination of 2 things. The 1st thing

is that Kylie's kyphosis is in that area and that

alone puts a lot of tension on the device, 2nd, Kylie

is very bent over due to her soft tissues that need to

be released, this is caused from her muscle myopathy.

This causes gravity to pull and put even more tension

on it. It was more than the device could tolerate and

it gave. Monday, Dr. will reattach that left

side and do an expansion as well. On October 11th, at

Shriner's, she will have her soft tissues behind both

knees and hips released. This will allow her to

straighten her legs all the way and stand up straight.

Hopefully this will not happen again, but you never

know with Kylie. She's always the exception to the

rule!!

I will let you know how things go!

__________________________________________________

[Guest guest]

Wow . I wish you and Kylie all the best in

this upcoming surgery. Keep up the strength and I

will be sending lots of prayers for a successful

surgery and fast recovery.

Hugs to you both

and Owen

> RE: Kylie's Having

> Surgery Monday

>

>

> Hi everyone,

>

> I thought I'd let you all know that Kylie will be

> having surgery on Monday. As most of you know,

> Kylie

> received the VEPTR in April. She has hit her first

> complication with it, the top part that goes

> around

> the rib has completely opened up and is not hooked

> to

> the rib anymore. It is bulging so much, Dr.

> at

> Primary Children's said it wouldn't take long to

> break

> through the skin. We were told that the reason

> this

> happened was a combination of 2 things. The 1st

> thing

> is that Kylie's kyphosis is in that area and that

> alone puts a lot of tension on the device, 2nd,

> Kylie

> is very bent over due to her soft tissues that

> need to

> be released, this is caused from her muscle

> myopathy.

> This causes gravity to pull and put even more

> tension

> on it. It was more than the device could tolerate

> and

> it gave. Monday, Dr. will reattach that left

> side and do an expansion as well. On October 11th,

> at

> Shriner's, she will have her soft tissues behind

> both

> knees and hips released. This will allow her to

> straighten her legs all the way and stand up

> straight.

> Hopefully this will not happen again, but you

> never

> know with Kylie. She's always the exception to the

> rule!!

>

> I will let you know how things go!

>

>

>

> __________________________________________________

>

[Guest guest]

Hey ,

Thanks for the update. That hook looks frightening.

Glad Dr. will be taking care of it sooner than

later. Will she be in the hospital overnight?

Braydon has his pre-op w/Dr. on Tues at 9:15.

Maybe we could stop by and say HI! Miss Kylie is

quite the character. She will pull through these

minor setbacks just fine. I'm hoping with the soft

tissue release, she'll be back on her feet and going

strong, stronger than ever. Big hugs to you both.

P.S. - How's the new house???

Carmell

mom to Kara, idiopathic scoliosis, Blake 15, GERD and Braydon 11, 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/

__________________________________________________

[Guest guest]

Hi Carmell,

Kylie will be staying one night. That would be great

to see you guys. The new house is great!

See ya on Tuesday.

--- Carmell Burns <cjbmom23@...> wrote:

> Hey ,

>

> Thanks for the update. That hook looks frightening.

>

> Glad Dr. will be taking care of it sooner than

> later. Will she be in the hospital overnight?

> Braydon has his pre-op w/Dr. on Tues at 9:15.

> Maybe we could stop by and say HI! Miss Kylie is

> quite the character. She will pull through these

> minor setbacks just fine. I'm hoping with the soft

> tissue release, she'll be back on her feet and going

> strong, stronger than ever. Big hugs to you both.

>

> P.S. - How's the new house???

>

> Carmell

>

>

>

> mom to Kara, idiopathic scoliosis, Blake 15, GERD

> and Braydon 11, 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/

>

> __________________________________________________

>

[Guest guest]

Deshea,

Thank you! She will be staying one night if all is

good.

--- " Deshea L. " <deshea@...> wrote:

> natalie,

>

> we'll all be thinking of you on monday. kylie is

> such a strong girl! i'm always reminded of this

> when i go through the photos that you have posted on

> the group. i would think that she would be in some

> pain from the device protruding so much, but thank

> goodness she's not. please let us know how she

> does. since it is a little more than just an

> expansion, will you guys be in the hospital for

> long?

>

> big hugs from lucas, geordie, ruby and me!

>

> deshea

>

> ---- Original message ----

> >Date: Thu, 17 Aug 2006 20:56:03 -0700 (PDT)

> >From: Lether <nlether@...>

> >Subject: RE: Kylie's Having

> Surgery Monday

> >infantile scoliosis treatment

> >

> > Hi everyone,

> >

> > I thought I'd let you all know that Kylie will

> be

> > having surgery on Monday. As most of you know,

> Kylie

> > received the VEPTR in April. She has hit her

> first

> > complication with it, the top part that goes

> around

> > the rib has completely opened up and is not

> hooked

> > to

> > the rib anymore. It is bulging so much, Dr.

> at

> > Primary Children's said it wouldn't take long to

> > break

> > through the skin. We were told that the reason

> this

> > happened was a combination of 2 things. The 1st

> > thing

> > is that Kylie's kyphosis is in that area and

> that

> > alone puts a lot of tension on the device, 2nd,

> > Kylie

> > is very bent over due to her soft tissues that

> need

> > to

> > be released, this is caused from her muscle

> > myopathy.

> > This causes gravity to pull and put even more

> > tension

> > on it. It was more than the device could

> tolerate

> > and

> > it gave. Monday, Dr. will reattach that

> left

> > side and do an expansion as well. On October

> 11th,

> > at

> > Shriner's, she will have her soft tissues behind

> > both

> > knees and hips released. This will allow her to

> > straighten her legs all the way and stand up

> > straight.

> > Hopefully this will not happen again, but you

> never

> > know with Kylie. She's always the exception to

> the

> > rule!!

> >

> > I will let you know how things go!

> >

> >

> >

> >

> __________________________________________________

> >

[Guest guest]

Thank you so much !

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

> Wow . I wish you and Kylie all the best in

> this upcoming surgery. Keep up the strength and I

> will be sending lots of prayers for a successful

> surgery and fast recovery.

> Hugs to you both

> and Owen

> > RE: Kylie's

> Having

> > Surgery Monday

> >

> >

> > Hi everyone,

> >

> > I thought I'd let you all know that Kylie will

> be

> > having surgery on Monday. As most of you know,

> > Kylie

> > received the VEPTR in April. She has hit her

> first

> > complication with it, the top part that goes

> > around

> > the rib has completely opened up and is not

> hooked

> > to

> > the rib anymore. It is bulging so much, Dr.

>

> > at

> > Primary Children's said it wouldn't take long to

> > break

> > through the skin. We were told that the reason

> > this

> > happened was a combination of 2 things. The 1st

> > thing

> > is that Kylie's kyphosis is in that area and

> that

> > alone puts a lot of tension on the device, 2nd,

> > Kylie

> > is very bent over due to her soft tissues that

> > need to

> > be released, this is caused from her muscle

> > myopathy.

> > This causes gravity to pull and put even more

> > tension

> > on it. It was more than the device could

> tolerate

> > and

> > it gave. Monday, Dr. will reattach that

> left

> > side and do an expansion as well. On October

> 11th,

> > at

> > Shriner's, she will have her soft tissues behind

> > both

> > knees and hips released. This will allow her to

> > straighten her legs all the way and stand up

> > straight.

> > Hopefully this will not happen again, but you

> > never

> > know with Kylie. She's always the exception to

> the

> > rule!!

> >

> > I will let you know how things go!

> >

> >

> >

> >

> __________________________________________________

> >

[Guest guest]

Thanks Shellie. They said she would only have to

spend one night, so we'll see. I'll let everyone know

how she did!

Take care,

--- Shellie Grant <shelliegrant@...> wrote:

> ,

> Thanks for sharing this with us!! We will be

> praying for Kylie and the doctors, and you!! What a

> tough girl. Such an inspiration. Let us know how

> long they think she will be in the hospital. We

> love you guys.

>

> Shellie

>

> Lether <nlether@...> wrote:

> Hi everyone,

>

> I thought I'd let you all know that Kylie will be

> having surgery on Monday. As most of you know, Kylie

> received the VEPTR in April. She has hit her first

> complication with it, the top part that goes around

> the rib has completely opened up and is not hooked

> to

> the rib anymore. It is bulging so much, Dr. at

> Primary Children's said it wouldn't take long to

> break

> through the skin. We were told that the reason this

> happened was a combination of 2 things. The 1st

> thing

> is that Kylie's kyphosis is in that area and that

> alone puts a lot of tension on the device, 2nd,

> Kylie

> is very bent over due to her soft tissues that need

> to

> be released, this is caused from her muscle

> myopathy.

> This causes gravity to pull and put even more

> tension

> on it. It was more than the device could tolerate

> and

> it gave. Monday, Dr. will reattach that left

> side and do an expansion as well. On October 11th,

> at

> Shriner's, she will have her soft tissues behind

> both

> knees and hips released. This will allow her to

> straighten her legs all the way and stand up

> straight.

> Hopefully this will not happen again, but you never

> know with Kylie. She's always the exception to the

> rule!!

>

> I will let you know how things go!

>

>

>

> __________________________________________________

>

[Guest guest]

Thank you !

--- Claflin <noellesmommy@...> wrote:

> I will certainly be keeping her in my thoughts. I

> hope all goes well for her. Best of luck and keep

> us posted.

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> RE: Kylie's Having

> Surgery Monday

>

>

> Hi everyone,

>

> I thought I'd let you all know that Kylie will be

> having surgery on Monday. As most of you know,

> Kylie

> received the VEPTR in April. She has hit her first

> complication with it, the top part that goes

> around

> the rib has completely opened up and is not hooked

> to

> the rib anymore. It is bulging so much, Dr.

> at

> Primary Children's said it wouldn't take long to

> break

> through the skin. We were told that the reason

> this

> happened was a combination of 2 things. The 1st

> thing

> is that Kylie's kyphosis is in that area and that

> alone puts a lot of tension on the device, 2nd,

> Kylie

> is very bent over due to her soft tissues that

> need to

> be released, this is caused from her muscle

> myopathy.

> This causes gravity to pull and put even more

> tension

> on it. It was more than the device could tolerate

> and

> it gave. Monday, Dr. will reattach that left

> side and do an expansion as well. On October 11th,

> at

> Shriner's, she will have her soft tissues behind

> both

> knees and hips released. This will allow her to

> straighten her legs all the way and stand up

> straight.

> Hopefully this will not happen again, but you

> never

> know with Kylie. She's always the exception to the

> rule!!

>

> I will let you know how things go!

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Bert,

How are you all? We can't wait to see you and Bridget

in October. Do you know when in October?

Tell Cormac lost his pants!! I'll have to take

a picture of Pants and e-mail it to you.

I'll let you know how Kylie does.

Take care,

--- bert lehane <bert_lehane@...> wrote:

> Dear and Kylie,

>

> Good luck and our prayers will be with you on

> MOnday. Bridget and I can't wait to see you both at

> the end of October so we are looking forward to you

> being up and ready to party by then.

>

> I am sure the indomitable Kylie spirit will

> overcome this hurdle too.

>

> Much love

> Bridget and Bert

>

> PS Cormac says don't forget Pants, he will

> cheer you up.

>

> Lether <nlether@...> wrote:

> Hi everyone,

>

> I thought I'd let you all know that Kylie will be

> having surgery on Monday. As most of you know, Kylie

> received the VEPTR in April. She has hit her first

> complication with it, the top part that goes around

> the rib has completely opened up and is not hooked

> to

> the rib anymore. It is bulging so much, Dr. at

> Primary Children's said it wouldn't take long to

> break

> through the skin. We were told that the reason this

> happened was a combination of 2 things. The 1st

> thing

> is that Kylie's kyphosis is in that area and that

> alone puts a lot of tension on the device, 2nd,

> Kylie

> is very bent over due to her soft tissues that need

> to

> be released, this is caused from her muscle

> myopathy.

> This causes gravity to pull and put even more

> tension

> on it. It was more than the device could tolerate

> and

> it gave. Monday, Dr. will reattach that left

> side and do an expansion as well. On October 11th,

> at

> Shriner's, she will have her soft tissues behind

> both

> knees and hips released. This will allow her to

> straighten her legs all the way and stand up

> straight.

> Hopefully this will not happen again, but you never

> know with Kylie. She's always the exception to the

> rule!!

>

> I will let you know how things go!

>

>

>

> __________________________________________________

>

[Guest guest]

HI ,

Cormac thought it was hilarious that Pants had lost his pants!!!!

We will be at the hospital from the 22nd October until the 28th. In that time

they will make Bridget a new brace and do any necessary adjustments.

We would love to see you both, and anyone else who may be around then.

We will be wating to hear the good news about Kylie's adjustments.

Good luck

Love Bert and Bridget

Lether <nlether@...> wrote:

Hi Bert,

How are you all? We can't wait to see you and Bridget

in October. Do you know when in October?

Tell Cormac lost his pants!! I'll have to take

a picture of Pants and e-mail it to you.

I'll let you know how Kylie does.

Take care,

--- bert lehane <bert_lehane@...> wrote:

> Dear and Kylie,

>

> Good luck and our prayers will be with you on

> MOnday. Bridget and I can't wait to see you both at

> the end of October so we are looking forward to you

> being up and ready to party by then.

>

> I am sure the indomitable Kylie spirit will

> overcome this hurdle too.

>

> Much love

> Bridget and Bert

>

> PS Cormac says don't forget Pants, he will

> cheer you up.

>

> Lether <nlether@...> wrote:

> Hi everyone,

>

> I thought I'd let you all know that Kylie will be

> having surgery on Monday. As most of you know, Kylie

> received the VEPTR in April. She has hit her first

> complication with it, the top part that goes around

> the rib has completely opened up and is not hooked

> to

> the rib anymore. It is bulging so much, Dr. at

> Primary Children's said it wouldn't take long to

> break

> through the skin. We were told that the reason this

> happened was a combination of 2 things. The 1st

> thing

> is that Kylie's kyphosis is in that area and that

> alone puts a lot of tension on the device, 2nd,

> Kylie

> is very bent over due to her soft tissues that need

> to

> be released, this is caused from her muscle

> myopathy.

> This causes gravity to pull and put even more

> tension

> on it. It was more than the device could tolerate

> and

> it gave. Monday, Dr. will reattach that left

> side and do an expansion as well. On October 11th,

> at

> Shriner's, she will have her soft tissues behind

> both

> knees and hips released. This will allow her to

> straighten her legs all the way and stand up

> straight.

> Hopefully this will not happen again, but you never

> know with Kylie. She's always the exception to the

> rule!!

>

> I will let you know how things go!

>

>

>

> __________________________________________________

>