/Olivia

[Guest guest]

Hi !

I was going to come to SLC today, but, looking out my

window, I'm not sure we're going to make it - too much

snow up here.

I'm planning on calling you soon! I know you've had

family with you and that you've been getting

" settled " . Maybe next week when you are really bored,

I'll call. I have so many things I want to share, and

many questions I want to ask about Olivia and her

treatment, etc.

Braydon will be at PCMP on Feb. 10 to have pre-op

testing (for his next VEPTR surgery) as well as

meeting with a pulminologist. He's been having

occasional episodes where he feels like he can't get

his breath. He says it feels like, " there isn't

enough air around me " . Hopefully its only because he

needs and expansion (replacement of both rods,

actually). His chestwall rod hasn't been expanded

since March 2005.

We'll be in SLC a few other times having appointments

at the University hospital. I'm sure we'll catch up

with you at least once before Olivia's surgery.

Leg length issues are only one of the things I think

you should keep an eye on. Remember that after the

VEPTR you'll have to lift her, or help her up, without

pulling on her arms or lifting under her armpits. You

learn how to lift/assist using their trunk or hips.

Things like this that sometimes " they " don't remember

to tell you. Also, things like post-op dressing and

care for the trip home. We'll chat later!

I'm glad to hear Olivia is going to school. How does

she like it? Hopefully she's not too bored. How's

the piano lessons! I LOVE to play the piano. I have

two pianos in my house... very cool for Olivia. Keep

up the good work, both of you!

Love ya,

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/

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