Re: Kylie's 2nd VEPTR Repair

September 14, 2006

I thought I would let you all know that Kylie has

not had the best of luck these last couple of weeks.

Last Friday she underwent surgery again, to reattach

the top part of her VEPTR hardware. She just had the

left side done 1 1/2 weeks ago. This time it was done

on the right side. This one broke through her rib!

Kylie is doing great for now, hopefully this

won't happen again! It's too much to go through!! Her

soft tissue release surgery, (to get her standing up

straight so this stops happening) has been moved back

2 weeks to October 30th. I hope Shriner's has a

cancellation and can move her surgery date up.

Please keep her in your thoughts and prayers!

Take Care,

__________________________________________________

September 14, 2006

Hi ,

So sorry to hear of Kylie's run of bad luck. I hope they have those

connections secure there now. Wow was that because it is under such pressure

and tension? Poor old Kylie, I bet even she is sick of hospital and surgery

now. Does she still get to squirt the nurses?

Surely someone will cancel before the end of October and luckily you live

close enough to be there in short time. We will certainly be praying for her.

Give her a gentle hug from Bridget who is really looking forward to seeing her

again.

Much love

Bert and Bridget

Lether <nlether@...> wrote:

I thought I would let you all know that Kylie has

not had the best of luck these last couple of weeks.

Last Friday she underwent surgery again, to reattach

the top part of her VEPTR hardware. She just had the

left side done 1 1/2 weeks ago. This time it was done

on the right side. This one broke through her rib!

Kylie is doing great for now, hopefully this

won't happen again! It's too much to go through!! Her

soft tissue release surgery, (to get her standing up

straight so this stops happening) has been moved back

2 weeks to October 30th. I hope Shriner's has a

cancellation and can move her surgery date up.

Please keep her in your thoughts and prayers!

Take Care,

__________________________________________________

September 14, 2006

!!

'Wow. I am so sorry to hear you guys are going through all this. We will

continue to keep Kylie and your family in our thoughts and prayers. She is such

a shiny, smiley girl. I am sure she continues to amaze everyone with her great

attitude. Surely there will be a cancellation so the soft tissue release can be

done. Either that or they can just make room for her! This is important!.

Thanks for taking the time to let us know what is going on.

Shellie (Moriah's Mom)

Lether <nlether@...> wrote:

I thought I would let you all know that Kylie has

not had the best of luck these last couple of weeks.

Last Friday she underwent surgery again, to reattach

the top part of her VEPTR hardware. She just had the

left side done 1 1/2 weeks ago. This time it was done

on the right side. This one broke through her rib!

Kylie is doing great for now, hopefully this

won't happen again! It's too much to go through!! Her

soft tissue release surgery, (to get her standing up

straight so this stops happening) has been moved back

2 weeks to October 30th. I hope Shriner's has a

cancellation and can move her surgery date up.

Please keep her in your thoughts and prayers!

Take Care,

__________________________________________________

September 14, 2006

Oh, goodness! I am so sorry that she is having such a rough time. I hope

things go smoothly from here on out and that you can get her in before that date

in October. Keep us posted.

Noelle (12-2-01)

Ian (8-15-04)

Re: Kylie's 2nd VEPTR Repair

I thought I would let you all know that Kylie has

not had the best of luck these last couple of weeks.

Last Friday she underwent surgery again, to reattach

the top part of her VEPTR hardware. She just had the

left side done 1 1/2 weeks ago. This time it was done

on the right side. This one broke through her rib!

Kylie is doing great for now, hopefully this

won't happen again! It's too much to go through!! Her

soft tissue release surgery, (to get her standing up

straight so this stops happening) has been moved back

2 weeks to October 30th. I hope Shriner's has a

cancellation and can move her surgery date up.

Please keep her in your thoughts and prayers!

Take Care,

__________________________________________________

September 14, 2006

oh natalie!

please send my very best to kylie. my family will be thinking of her.

deshea

---- Original message ----

>Date: Wed, 13 Sep 2006 21:01:00 -0700 (PDT)

>From: Lether <nlether@...>

>Subject: Re: Kylie's 2nd VEPTR Repair

>infantile scoliosis treatment

>

> I thought I would let you all know that Kylie has

> not had the best of luck these last couple of weeks.

> Last Friday she underwent surgery again, to reattach

> the top part of her VEPTR hardware. She just had the

> left side done 1 1/2 weeks ago. This time it was

> done

> on the right side. This one broke through her rib!

>

> Kylie is doing great for now, hopefully this

> won't happen again! It's too much to go through!!

> Her

> soft tissue release surgery, (to get her standing up

> straight so this stops happening) has been moved

> back

> 2 weeks to October 30th. I hope Shriner's has a

> cancellation and can move her surgery date up.

>

> Please keep her in your thoughts and prayers!

>

> Take Care,

>

> __________________________________________________

>

September 14, 2006

---Hi ,

Sorry to hear of all the problems Kylie is having. She,s been

through so much she,s a tuff little girl.Our thoughts and prayers

are with you.

Bridgette

In infantile scoliosis treatment , Lether

<nlether@...> wrote:

>

> I thought I would let you all know that Kylie has

> not had the best of luck these last couple of weeks.

> Last Friday she underwent surgery again, to reattach

> the top part of her VEPTR hardware. She just had the

> left side done 1 1/2 weeks ago. This time it was done

> on the right side. This one broke through her rib!

>

> Kylie is doing great for now, hopefully this

> won't happen again! It's too much to go through!! Her

> soft tissue release surgery, (to get her standing up

> straight so this stops happening) has been moved back

> 2 weeks to October 30th. I hope Shriner's has a

> cancellation and can move her surgery date up.

>

> Please keep her in your thoughts and prayers!

>

> Take Care,

>

> __________________________________________________

>

September 14, 2006

,

I just read Kylie's story Tuesday night.

I am so sorry she is having to go through all this.

I will pray for an earlier date and for Kylie, mom and dad to continue to have

strength to get through every procedure.

Tasha/

Lether <nlether@...> wrote:

I thought I would let you all know that Kylie has

not had the best of luck these last couple of weeks.

Last Friday she underwent surgery again, to reattach

the top part of her VEPTR hardware. She just had the

left side done 1 1/2 weeks ago. This time it was done

on the right side. This one broke through her rib!

Kylie is doing great for now, hopefully this

won't happen again! It's too much to go through!! Her

soft tissue release surgery, (to get her standing up

straight so this stops happening) has been moved back

2 weeks to October 30th. I hope Shriner's has a

cancellation and can move her surgery date up.

Please keep her in your thoughts and prayers!

Take Care,

__________________________________________________

September 14, 2006

Hey Nat

What is that crazy girl of yours doing???? Has she taken up

gymnastics with Arial?? LOL

I'm sorry to hear that she is having such problems with the VEPTR,

keeping Dr very busy! Keep us posted on her release surgery...

Please send her our hugs.

Jacki and Siobhan xx

>

> I thought I would let you all know that Kylie has

> not had the best of luck these last couple of weeks.

> Last Friday she underwent surgery again, to reattach

> the top part of her VEPTR hardware. She just had the

> left side done 1 1/2 weeks ago. This time it was done

> on the right side. This one broke through her rib!

>

> Kylie is doing great for now, hopefully this

> won't happen again! It's too much to go through!! Her

> soft tissue release surgery, (to get her standing up

> straight so this stops happening) has been moved back

> 2 weeks to October 30th. I hope Shriner's has a

> cancellation and can move her surgery date up.

>

> Please keep her in your thoughts and prayers!

>

> Take Care,

>

> __________________________________________________

>

September 14, 2006

Hi Bert,

I'm not (duh) but I thought I'd pipe in to

kinda help answer your questions. Obviously

can do a better job when she has time.

<<...was that because it is under such pressure and

tension?>>

Kylie's myopathy condition makes her body very rigid.

With having a rigid kyphosis that was corrected to

ZERO degrees, the tension and pressure on the devices

was serious. They were hoping to be able to anchor

the devices on the very top so the risks of the

kyphosis returning would be less, but, that wasn't the

case. They have had to lower the attachment site to

release some of that tension on the devices.

Hopefully its enough to not have

breakthrough/migration problems again AND enough to

keep the kyphosis from returning. Only time will

tell, I'm afraid.

Please remember that each child is very different. We

have some unique kids who do not fit the typical

treatment option plans (if there even is a typical

plan). Our kids are writing their own books as they

go. I'm grateful there is advances in technology to

be willing to try new things. With knowledge and

experience, I believe our kids are getting the best of

what medical science (maybe an art rather than a

science) can offer today.

Done rambling... Let us know when you'll be in SLC

(October?)... we'd love to come and say HI! Maybe

Braydon will be up for another round of " horse and

buggy " - hee hee.

Carmell

mom to Kara, idiopathic scoliosis, Blake 16, 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/

__________________________________________________

September 14, 2006

Praying for your little girl.

& Jake

Lether <nlether@...> wrote:

I thought I would let you all know that Kylie has

not had the best of luck these last couple of weeks.

Last Friday she underwent surgery again, to reattach

the top part of her VEPTR hardware. She just had the

left side done 1 1/2 weeks ago. This time it was done

on the right side. This one broke through her rib!

Kylie is doing great for now, hopefully this

won't happen again! It's too much to go through!! Her

soft tissue release surgery, (to get her standing up

straight so this stops happening) has been moved back

2 weeks to October 30th. I hope Shriner's has a

cancellation and can move her surgery date up.

Please keep her in your thoughts and prayers!

Take Care,

__________________________________________________

September 14, 2006

So sorry to hear of the complications, hopefully things will run

smooth from here on out, prayers to your family through her next

surgery for a successsful one with a speedy recovery!!

Best wishes sincerely,

Joy (mother of Sol)

>

> I thought I would let you all know that Kylie has

> not had the best of luck these last couple of weeks.

> Last Friday she underwent surgery again, to reattach

> the top part of her VEPTR hardware. She just had the

> left side done 1 1/2 weeks ago. This time it was done

> on the right side. This one broke through her rib!

>

> Kylie is doing great for now, hopefully this

> won't happen again! It's too much to go through!! Her

> soft tissue release surgery, (to get her standing up

> straight so this stops happening) has been moved back

> 2 weeks to October 30th. I hope Shriner's has a

> cancellation and can move her surgery date up.

>

> Please keep her in your thoughts and prayers!

>

> Take Care,

>

> __________________________________________________

>

September 14, 2006

natalie, we, too, are so sorry to hear about kylie's complications. we are

thinking of you often. so glad we were able to meet you!!!! best wishes,

abigail and nadia

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

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September 16, 2006

Hi Bert,

How are you all? Kylie can't wait to play with

bridget again! Ariel wanted to tell that she

will be making a 3 week visit to Australia next

summer, maybe you can meet somewhere for a visit. She

will be traveling with the " People to People " student

ambassador program. She went to England and Scotland

this last summer with the grouped and loved it, she's

hooked now!

Thanks for your prayers for Kylie. It's been a

challenge. Carmell explained it better than I

probably would of. She's doing great for now,

hopefully she will continue to do so!

Take care,

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

> Hi ,

>

> So sorry to hear of Kylie's run of bad luck. I

> hope they have those connections secure there now.

> Wow was that because it is under such pressure and

> tension? Poor old Kylie, I bet even she is sick of

> hospital and surgery now. Does she still get to

> squirt the nurses?

>

> Surely someone will cancel before the end of

> October and luckily you live close enough to be

> there in short time. We will certainly be praying

> for her. Give her a gentle hug from Bridget who is

> really looking forward to seeing her again.

>

> Much love

> Bert and Bridget

> Lether <nlether@...> wrote:

> I thought I would let you all know that

> Kylie has

> not had the best of luck these last couple of weeks.

>

> Last Friday she underwent surgery again, to reattach

> the top part of her VEPTR hardware. She just had the

> left side done 1 1/2 weeks ago. This time it was

> done

> on the right side. This one broke through her rib!

>

> Kylie is doing great for now, hopefully this

> won't happen again! It's too much to go through!!

> Her

> soft tissue release surgery, (to get her standing up

> straight so this stops happening) has been moved

> back

> 2 weeks to October 30th. I hope Shriner's has a

> cancellation and can move her surgery date up.

>

> Please keep her in your thoughts and prayers!

>

> Take Care,

>

> __________________________________________________

>

September 16, 2006

Hi Jacki,

How is everyone? When is Siobhan scheduled for her

expansion? We can't wait to visit!

Kylie is keeping Dr. busy. He's determined to

make this work for her. He's so wonderful! Now we

can say we have 2 of the best ortho's!

We will keep you posted.

Take care,

--- jabostock <jabostock@...> wrote:

> Hey Nat

>

> What is that crazy girl of yours doing???? Has she

> taken up

> gymnastics with Arial?? LOL

>

> I'm sorry to hear that she is having such problems

> with the VEPTR,

> keeping Dr very busy! Keep us posted on her

> release surgery...

>

> Please send her our hugs.

>

> Jacki and Siobhan xx

>

> >

> > I thought I would let you all know that Kylie

> has

> > not had the best of luck these last couple of

> weeks.

> > Last Friday she underwent surgery again, to

> reattach

> > the top part of her VEPTR hardware. She just had

> the

> > left side done 1 1/2 weeks ago. This time it was

> done

> > on the right side. This one broke through her

> rib!

> >

> > Kylie is doing great for now, hopefully this

> > won't happen again! It's too much to go through!!

> Her

> > soft tissue release surgery, (to get her standing

> up

> > straight so this stops happening) has been moved

> back

> > 2 weeks to October 30th. I hope Shriner's has a

> > cancellation and can move her surgery date up.

> >

> > Please keep her in your thoughts and prayers!

>

> >

> > Take Care,

> >

> > __________________________________________________

> >

September 16, 2006

Hi Carmell,

Thank you so much for explaining that. I'm not sure I

could of done it any better! So far it's all holding

up. She sees Dr. on Tuesday. He's keeping a

very close eye on her.

How was the fair? When you get a chance, I would love

to have your friends phone #. I have lots of myopathy

questions!

Talk to you soon,

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

> Hi Bert,

>

> I'm not (duh) but I thought I'd pipe in to

> kinda help answer your questions. Obviously

> can do a better job when she has time.

>

> <<...was that because it is under such pressure and

> tension?>>

>

> Kylie's myopathy condition makes her body very

> rigid.

> With having a rigid kyphosis that was corrected to

> ZERO degrees, the tension and pressure on the

> devices

> was serious. They were hoping to be able to anchor

> the devices on the very top so the risks of the

> kyphosis returning would be less, but, that wasn't

> the

> case. They have had to lower the attachment site to

> release some of that tension on the devices.

> Hopefully its enough to not have

> breakthrough/migration problems again AND enough to

> keep the kyphosis from returning. Only time will

> tell, I'm afraid.

>

> Please remember that each child is very different.

> We

> have some unique kids who do not fit the typical

> treatment option plans (if there even is a typical

> plan). Our kids are writing their own books as they

> go. I'm grateful there is advances in technology to

> be willing to try new things. With knowledge and

> experience, I believe our kids are getting the best

> of

> what medical science (maybe an art rather than a

> science) can offer today.

>

> Done rambling... Let us know when you'll be in SLC

> (October?)... we'd love to come and say HI! Maybe

> Braydon will be up for another round of " horse and

> buggy " - hee hee.

>

> Carmell

>

> mom to Kara, idiopathic scoliosis, Blake 16, 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/

>

> __________________________________________________

>

September 16, 2006

Thanks Carmell,

I think your knowledge base and explaining skills are fabulous. and I

had spoken about the sort of tension that must have been applied to correct

Kylie's kyphosis to 0 when we at the hospital together in April so that is why I

asked..

I find the mechanics of this procedure really interesting while I take your

point and all our kids are bringing a unique set of conditions to this procedure

so each case is individual.

I hate to think of Kylie having a hard time.

We will be back in SLC on Oct 22nd to Friday 28th so if you are around at all

we would love to see you and Braydon. I still have a picture in my mind of

Braydon dragging Brdget around in the wagon in the playroom 4 days after his

expansion surgery. He is amazing!!!

Hope to see you soon

Love Bert and Bridget

Carmell Burns <cjbmom23@...> wrote: