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Quiet Lazy Weekend

1/15/2012

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OK parents out there...ready to have your mind blown....

Zoë slept threw the night!

Oh Hells yeah!!!!!  OK...so we are cheating a bit by having her get food threw the NG tube over night, so she does not wake up hungry.  But still... I am a well rested Momma!

I also got to eat breakfast, shower, and put on makeup this morning!  Heck yeah.  
  
Yesterday Zoë had only one test (an ultrasound) of her bladder, and kidneys.  She did not like the test as she had to be propped up on her sides for it.  But she had both Zeppo and I there to try to calm her during the test.  They were able to get the images that they wanted, and I am just waiting to hear what the plan is next.

It was so strange looking at an ultrasound screen.  I am used to looking for the baby on the monitor...not having the whole monitor be the baby.  I am fascinated by being able to see inside of a body, and enjoyed confirming that I am also good at "seeing" what is being looked at.  I think in another life I would have loved to be in ultrasound, or radiology, or something of that sort.

Due to the fact that Zoë will have her next round of chemo any day now it does seem as though both of her kidney tubes will remain in place.  They are thinking to use the left one to drain her left kidney as well as the right one directly after the chemo (chemo can be hard on the bladder, and by using the tubes she would not need to have her bladder flushed).  Then once the drugs are mostly out of her system she will then have the left tube removed,
and hopefully the right kidney will begin to rotate back to normal with additional tumor shrinkage.

Her broviac is healing up nicely, and she is LOVING having her PICC out.  She has her arms up over her head so much that she has discovered her hair!  It is so cute to see her try to grab it.
 
Zoë's overall development:
What is amazing is she is right on...or a head of the game when it comes to her cognitive development.  The nurses and doctors are amazed at how alert she is, how well she tracks, and engages.  She also is very playful when she is comfortable.  Now that we have her on a better pain management plan she is all smiles, and giggles.  We have a black and white toy that she loves to look at, and it makes her giggle.

I will be asking to see or speak with a physical or occupational therapist regarding her physical and occupational needs.  I know it sounds strange that an infant needs an occupational therapist.  But they do wonderful things for babies, because it is a baby's job to be a baby.  I am mostly concerned about things like tummy time.  With the broviac in her chest I don't know how possible it is to have her flopped out and struggling on the floor.  I don't want her to get too far behind physically.  Especially when she doing so good at nearly holding her head up a few weeks ago.  I don't want her to loose what she had.

Yesterday I also had a nearly "normal" day.  Zeppo and I ate dinner together, watched the game (GO PATS!), and enjoyed holding and playing with Zoë.  I commented to Zep that all we needed was a fireplace, and two fuzzy cats, and it would be perfect. 
  
Today's plans...enjoy some company.  Crochet.  Relax.  *big smiles*

This post was brought to you today by the restorative power of sleep.

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.