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

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

http://home.comcast.net/~mrluos/Dec08.jpg

http://home.comcast.net/~mrluos/Dec13.jpg

http://home.comcast.net/~mrluos/Dec02.jpg

http://home.comcast.net/~mrluos/Dec15.jpg

http://home.comcast.net/~mrluos/Dec16.jpg

http://home.comcast.net/~mrluos/Dec17.jpg


She's dead...
http://home.comcast.net/~mrluos/Dec12.jpg




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.

She looks happy :)

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

All smiles as usual, she must love the camera :)

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.

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Originally Posted by cammed goat

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

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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!!

cute kid C

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

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

Quote:

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Originally Posted by SeVeReDiStOrTiOn

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

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Life.

Quote:

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Originally Posted by Mr. Luos

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!!

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

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

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.

http://www.facebook.com/photo.php?pi...&id=1678522969

Not to thread jack.

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

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Originally Posted by 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

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

Quote:

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Originally Posted by Mr. Luos

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.

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I can see why.

Quote:

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Originally Posted by Mr. Luos

http://home.comcast.net/~mrluos/Dec02.jpg

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Quote:

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Originally Posted by Smkn_TA

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

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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.

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Originally Posted by loasdrums

I can see why.

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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.

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

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Originally Posted by loasdrums

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

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

It really depends on what they would have to remove.

I see. Thank you for sharing her story. I can see that she has a very warm spirit. Makes the little things in life not matter so much.

Sara is beautiful Curtis, she looks so happy. You and her alike are troopers, she's a little angel
PS - hell yes on footie PJs :D

Your little girl sure is tough as nails Curtis. Thank you for sharing.

My thoughts and prayers are with you...she looks like a tough girl.

She's adorable. She is lucky to have such a good and loving father as well :)

my prayers are with you and your family. its funny how little kids can handle some things and not let it slow them down. she is an angle

She's looking cute as always.

I honestly just said a prayer for y'all, best of luck to her

Thanks everyone!!!


Picked her up some 'green ice cream' for when she gets here on Sunday.
Green ice cream is Sara for mint chocolate chip. :lol:
I hate not seeing her 5 days a week, but I love my 2 days. Hoping once I get where I need to be with school and a career that I can split time 50/50.

She looks to be doing well and as long as she has strong parents like the two of you in her life she will continue to be fine :) All of us here at LS1.com wish you and Sara the best.

GOD bless bro ...

Quote:

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Originally Posted by Mr. Luos

Thanks everyone!!!


Picked her up some 'green ice cream' for when she gets here on Sunday.
Green ice cream is Sara for mint chocolate chip. :lol:
I hate not seeing her 5 days a week, but I love my 2 days. Hoping once I get where I need to be with school and a career that I can split time 50/50.

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Man your a good dad and you love her and want to see her all the time and she will always remember that.

I see my brothers kids more then their mom does and I live 2 hours from him. She lives 15 mins away. They just finally saw her for the first time in 2 months this week. When she left my nephew waved at her and said "Nice seeing you again mom". Didnt bother or want to hug her. She thinks they are young enough where they wont remember this when they grow up but they are showing resentment towards her for not seeing them and rarely will even talk to her. She just doesnt get it. I just dont understand how someone can go so long without wanting see their kids.

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Originally Posted by raynor139

I just dont understand how someone can go so long without wanting see their kids.

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You and me both....
Just doesn't make sense to me.

shes so cute.

i agree about going crazy when u cant see them, when my daughter goes to the sitter on Thursdays i go crazy all day with out seeing her. its crazy how some days they can drive u crazy but soon as their gone u cant wait to see them and hug them again.

Being a father myself and not very religious, Im not sure what to say. I look at this with a heavy heart and wish you and your family happiness and lots of it, I know its got to be tough....

Cute pics the second black and white one made me laugh; she looks like she's gonna whip some ass. If you don't mind me asking what disorder does she have that affects her foot and organs?

Quote:

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Originally Posted by HOBS

Cute pics the second black and white one made me laugh; she looks like she's gonna whip some ass. If you don't mind me asking what disorder does she have that affects her foot and organs?

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Neurofibromatosis.

http://en.wikipedia.org/wiki/Neurofibromatosis

Never heard of it but it doesn't seem to slow her down. All the best to you both.

God Bless her, she's not letting anything get her down. Kids are so strong :) I bet Santa's gonna be good to her :D

Your love for your daughter has brought a warm feeling in my heart and a smile to my face. All the best to both of you!:)