Re: RE: Update on Kylie By

[Guest guest]

I would love to see pictures. Thanks for the update and I am glad to hear she

is getting around well with the halo in place.

Noelle (12-2-01)

Ian (8-15-04)

RE: Update on Kylie By

Hi all,

Kylie had her halo put on Monday afternoon. She is doing wonderful!! She

was a little sick from the anesthesia that first day, and had no pain at

all. The next day she was up dressed and running around with Olivia and

still had absolutely no pain medicine. The game plan for her is to have

her in traction for 2 mo.'s, then she will go into a brace w/ neck

support....(again). She is unable to have the VEPTR because of her very

low weight. Also, on Mon., she underwent her first muscle biopsy, and we

are expecting results within appox. a week. They suspect she has muscle

myopathy and that it is directly linked to her being unable to gain

weight. We will send pictures of the girls running through the halls as

soon as heather changes the groups option to add attachments.

I will send another update soon.

Thanks again for all of your well wishes!!

[Guest guest]

-

So happy to hear you and Kylie are both doing so well,a nd no meds is

awesome! Please continue to keep us updated. I hope you get some helpful info

regarding her her biopsy.

Madison and Jen

heather@... wrote:

Hi all,

Kylie had her halo put on Monday afternoon. She is doing wonderful!! She

was a little sick from the anesthesia that first day, and had no pain at

all. The next day she was up dressed and running around with Olivia and

still had absolutely no pain medicine. The game plan for her is to have

her in traction for 2 mo.'s, then she will go into a brace w/ neck

support....(again). She is unable to have the VEPTR because of her very

low weight. Also, on Mon., she underwent her first muscle biopsy, and we

are expecting results within appox. a week. They suspect she has muscle

myopathy and that it is directly linked to her being unable to gain

weight. We will send pictures of the girls running through the halls as

soon as heather changes the groups option to add attachments.

I will send another update soon.

Thanks again for all of your well wishes!!

[Guest guest]

Hi !

So glad to hear Kylie is adjusting well to the halo!

Great for both of you. She is adorable. Give her a

gentle hug for us. Hopefully the biopsy will give you

some answers to the mysteries that are Kylie.

Maybe we'll see you tomorrow!

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/

__________________________________________________

[Guest guest]

Congratulations Kylie from Bert and Bridget and . We all think Kylie is

marvellous and is a true hero, so courageous and always smiling. I can imagine

her skooting along the halls with Olivia. I hpe school is fun.

HOw are you sleeping on those skinny beds ? Have you got bruises yet?

Love Bert

jabostock <jabostock@...> wrote:

- So glad to hear that Kylie has adjusted to #3 so quickly.

I hope the muscle biopsy gives you some answers, I know its

something we've talked about before, so keep us posted OK?!!

Sending Kylie lots of hugs from her friend Siobhan, and me!

Hugs to you too.

Jacki

>

> Hi all,

>

> Kylie had her halo put on Monday afternoon. She is doing

wonderful!! She

> was a little sick from the anesthesia that first day, and had no

pain at

> all. The next day she was up dressed and running around with

Olivia and

> still had absolutely no pain medicine. The game plan for her is

to have

> her in traction for 2 mo.'s, then she will go into a brace w/ neck

> support....(again). She is unable to have the VEPTR because of

her very

> low weight. Also, on Mon., she underwent her first muscle biopsy,

and we

> are expecting results within appox. a week. They suspect she has

muscle

> myopathy and that it is directly linked to her being unable to gain

> weight. We will send pictures of the girls running through the

halls as

> soon as heather changes the groups option to add attachments.

>

> I will send another update soon.

> Thanks again for all of your well wishes!!

>

>

>