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Smiles!!!

1/3/2012

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So today Momma got a half smile, and Daddy did too!

Zoë had a big day involving the changing of her PICC line dressing, and having LOTS of Doctors meet her.  She meet with 4 pain management doctors, 4 nutritionists, a whole team of oncologists, urologists, and so many more.  She was also brought to have an MRI done of her head, and brain, but she was not cooperative and they will
have ...to try again tomorrow.

Zoë handled the halting of the suction of her stomach so well.  Because of that, and her regular poops she will be getting the nose tube removed.  It will be exchanged for a feeding tube.  They are unsure of when they will start feeding her, but it sounds like it will happen in the next few days.  What is amazing about this is that she will start on "clears", or easy to digest foods first.  And guess what.... Breast milk is considered a clear!  So all of my hard work will soon be paying off!!!  Which is good because I have an embarrassing amount of it stockpiled in the hospital freezer.

I did start talking to one of her primary doctors regarding her type of cancer.  The more I learn the more I don't
want to know right now.  It really stinks being a curious individual.  Questions pop out of my mouth, and I get the answer and I just wish sometimes I did not ask.  I am constantly trying to know more while not knowing.  I think that
tomorrow I will write down my questions and hold them until I am ready to ask.  I need to take a small break from my inquisitive side, and just enjoy tomorrow and hope that Zoë has another great day.
 
I am also meeting a lot of people who are here for family support.  It is amazing the number of people who  are dedicated to insure that we as parents have what we need to get threw this very long night. 

How am I doing?  I have been asked how I am doing often.  I am doing as well as I can, I am getting enough sleep (or sleeping as if I have a new born, oh wait that's right I do).  :)  So I am up in the middle of the night often for long stretches.  Today was the first day that I napped, and I think I will need to do that more often.  Although it is hard when you have doctors, and social workers, and child life specialists, and nurses, and nursing assistants, and one really strange man with a small ladder fixing your TV/VCR/DVD/XBOX (which you have yet to turn on or care about) making a ton of noise and making me want to hurt him while Zoë was sleeping.

The really scary thing about today....I found two gray hairs!!!!!!!!!!!  AAAAUUUGHHH!!!! 
No worries though, they were quickly dealt with.  :)

Love and
Hugs

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    Laura is Zoë's mommy.  Forever and Always.

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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.