Sunday, March 28, 2010

A Champion!

It is a beautiful Sunday morning, I sit here as my youngest naps and as I watch my oldest dance in her 'way' of course... she loves to play her demo music on the keyboard and dance away as if her feet and legs are weightless. I love to watch her flap her hands and arms to her own version of the rhythm of each song. And every so often a breeze will come rushing through our open windows and cause Mylee to shutter with excitement for the cool feeling on her face. Her expressions are priceless! I always wonder what her little thoughts are... like I said her expression tell it all... Despite the challenges she competes for each day - she will always be our champion!

We also fight each day for Mylee and continue our journey with her unknown metabolic diagnosis. It seems to be pointing towards a mitochondrial disease. We may never know for sure, but still encourage all of our friends and family to help us fight this battle! Help spread our words... learn about Mitochondrial disease... help us fight!

On Being a Champion

A Champion is a winner,
A hero...
Someone who never gives up
Even when the going gets rough.
A champion is a member of
A winning team...
Someone who overcomes challenges
Even when it requires creative solutions.
A champion is an optimist,
A hopeful spirit...
Someone who plays the game,
Even when the game is called life.
There can be a champion in each of us,
If we live as a winner,
If we live as a member of the team,
If we live with a hopeful spirit,
For Life.

By Mattie J.T. Stepanek

Mattie, lost his battle... but he never gave up! Mylee will NEVER GIVE UP... We will NEVER GIVE UP!!


Sunday, March 21, 2010

Spring has arrived...

Wow, it has been several weeks since I last posted. I apologize, it is becoming quite a challenge to post on both Mylee's caringbridge and our family blog. I promise to work on getting a little better...

We have been a very busy family since the start of the new year... Mylee has had ups and downs with respiratory infections and seems to be back at her baseline at this time. She continues to struggle a little bit with clearing her throat with congestion. This might be something we need to talk with her pulmonologist at our next visit. She has made it inpatient twice since the first of the year. She ended up in the PICU in January at Phoenix Children's hospital with RSV and pneumonia. And was just released from Denver Children's hospital after a surgical procedure for her muscle biopsy. This time her little lungs didn't want to work properly after she was in recovery from her surgery. We are now battling her 3rd infection with some type of staph. Again, on antibiotics... and awaiting what the CDC will say!

Now on to the good news... Spring is here! We have had a beautiful weekend in Arizona. We took the girls to the Phoenix Zoo yesterday and had a fantastic time! Hoping to make a few more trips like this before it starts to get too hot. We are also looking forward to a long weekend in Mexico for Easter. Enjoy these recent pictures of the girls!