New Sara pics...and pics of what she deals with

[Mr. Luos]

Couple new pics from the last couple days with her....














She's dead...





Update on her....
Just typical kid stuff since the surgery 6 months ago to bypass her bladder.
Very happy most of the time.
A complete joy!!
Made these pics thumbnails...may not want to view at work. Not gross, maybe just not something you want to get busted looking at.

[86 IROC-Z]

She looks happy

[cammed goat]

Is the bypass temporary Curtis? She doesn't seem to let it bother her. Looks like a very lively girl.

[Smkn_TA]

All smiles as usual, she must love the camera

[pajeff02]

As always, great pics -- good to see some B&W shots too. I bet she is looking forward to Christmas... no need for an angel on the tree, she's right there.

[Mr. Luos]

Is the bypass temporary Curtis? She doesn't seem to let it bother her. Looks like a very lively girl.

Permanent.
Her bladder is a dead organ at this point. It is encased in the tumor in her pelvis.
The disorder will be a life-long battle.

Wouldn't ever know though if you were to meet us at a restaurant or something though. She is tough as nails!!

[tatertot91]

cute kid C

[ss~zoso~ss]

God bless you and her Mr. Luos. She does look happy, keep ur head up buddy.

[SeVeReDiStOrTiOn]

Poor kiddo...how long does her bladder have to be bypassed?

[Mr. Luos]

Poor kiddo...how long does her bladder have to be bypassed?

Life.

[cammed goat]

Permanent.
Her bladder is a dead organ at this point. It is encased in the tumor in her pelvis.
The disorder will be a life-long battle.

Wouldn't ever know though if you were to meet us at a restaurant or something though. She is tough as nails!!

Good girl. And she will be tough. Her dad will continue to teach her well.

[Smkn_TA]

So are they going to do anything to her leg/foot yet? It may not do anything for her health, but it would still be a quality of life thing

[loasdrums]

Beautiful girl you got there. Her story reminds me of the NICU at Chapel Hill when my girl was born. She was 2 months premature. So many kids there going through so much. Looks like your doing a great job with keeping her happy or maybe it's the other way around.



Not to thread jack.

[KahanaReef]

It's nice to see her with a smile on her face

[Mr. Luos]

So are they going to do anything to her leg/foot yet? It may not do anything for her health, but it would still be a quality of life thing

This is a difficult question for me....as I believe it could be amputated within a few years.
Very little they can for that foot/leg.

[Smkn_TA]

I'm no doctor, but it doesn't look so bad as to need amputation. Just remove some of the tumors.

[loasdrums]

This is a difficult question for me....as I believe it could be amputated within a few years.
Very little they can for that foot/leg.

I can see why.

[Mr. Luos]

I'm no doctor, but it doesn't look so bad as to need amputation. Just remove some of the tumors.

Can't remove the tumors. They are part of her nervous system....basicly the tumors are inside her nerves.
She is starting to complain about pain in the legs, so....
Time will tell.

I can see why.

She turns 3 in January. Still has not taken any steps, but is able to stand up pretty well.
She has special shoes for her feet, but with the pain she has complained about lately she hasn't been wearing them.

[loasdrums]

How much would they have to amputate? Would she be able to walk even if it with a prosthetic?

[Mr. Luos]

How much would they have to amputate? Would she be able to walk even if it with a prosthetic?

Haven't really gotten into the details with the doctors.

It really depends on what they would have to remove.