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!!

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xoxo

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!

xoxo

Footprints

Two years ago this past week, Dave and I walked down the long white cold corridor of St. Joseph's hospital along with Mylee, her papa, and her Gigi to hand her over to the surgical team who performed her brain decompression. There are no words to express to you how we felt. Our little Mylee was such a happy and smilee little girl. I was so afraid she would wake up and be a different child. I was afraid her innocence would be stolen from her. I was afraid she wouldn't be her smilee self again. My fears were short lived...

Today, two years later we are still on this long road of unknowns and our journey continues. But, I am pleased to say that my child’s innocence were not stolen and she still shows us her beautiful smile almost daily! I cannot ask for anything more!!


Although we continue her fight today and we have new challenges that lay ahead for us, she continues to teach all of us the true meaning of life. Her "Never Give Up" attitude always seems to amaze us. She is such a fighter!!

I read this poem again this past week. It has always been dear to my heart and has even more of a special meaning to me that I would have never imagined. It has assured me to not be afraid of some of my recent fears. It allowed me to be true to my feelings. It reminded me that we are not on this journey alone. It confirmed that my faith can be renewed and it has!!

I hope you enjoy this poem as much as I have:

Footprints in the Sand

One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.
This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,
“You promised me Lord,
that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand.Why, when I needed you most, have you not been there for me?”
The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”





Mary Stevenson, 1936


xoxo

Christmas 2009!

It was an amazing weekend with Dave and the girls! Khloe's first Christmas was so special because we spent it with just the four of us - and the dogs!! We are all still fighting colds...it seems neverending!!

Here is a glimpse of our special moments this holiday season - Christmas 2009!!

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xoxox

Sisters

Sisters are special

From young ones to old.

God gave me a sister

More precious than gold.

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Joy

Wow - I can't believe how long it has been since I last updated our family blog. Actually a little embarassed, but better late than never! Mylee has been enjoying preschool and Khloe is growing up right before our eyes... We have traveled quite a bit and now will be home for the holidays.

Our trip to North Carolina, Victory Junction was a blast! It was so much fun to meet all of our Chiari families that we have been in contact with since our journey began. The camp itself is amazing and most of all Mylee was able to be herself and just have fun!

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Thankgiving was also a lot of fun. We were able to visit with friends we haven't seen in a couple of years. All of the kids played so nicely together. We had a holiday party with Santa on Saturday after Thanksgiving. Both Mylee and Khloe sat on Santa's lap...it was so cute!


We are homebound for Christmas this year. The tree is sparkling with beautiful lights and the stockings are hung with care - in hopes that St. Nick will soon be there.....


Mylee is doing well on the medical front. I mainly update her caringbridge page with our daily status. We are currently in the process of determining her new diagnosis. She is being tested for a Mitochondrial disease and will go in this week for testing at St. Joseph's hospital. We are in discussion of her having a muscle biopsy done and if so, we will need to decide if we have it done here in Arizona or travel to a more advanced hospital that specializes in Mitochondrial disorders. More than likely traveling to Cleveland, Ohio to see a doctor by the name of Dr. Cohen. We will keep everyone posted. Mylee's caringbridge site: www.caringbridge.org/visit/mylee.



I promise to update more often....until next time!

2nd Annual Miracle Race was a success!!

The 2nd Annual Miracle Race for Mylee Grace and her Chiari & Syringomyelia friends was a success! We are grateful for your support this year. Thank you very much for providing Mylee and her attendees the support necessary to have a successful fundraiser. With your help we were able to bring awareness to our community and increased funding for research. We continue our HOPE that one day the cure for Chiari, Syringomyelia and it other related neurological disorders will be found.

I would like to share with you some high points of our event:

On Sunday, September 20th, 2009 the Arizona Chiari/Syringo Support Group, friends and family joined Mylee Grace at Kiwanis Park in Tempe, Arizona. The day brought awareness to our community, joy to our friends and family and lots of sunshine!!

Our event kicked off bright and early at 6am with the help of the JB Martial Arts program who worked hard to set up the event, help vendors and cheer on participants along the walk route.

Ronald McDonald jazzed up the crowd with a few stretches while DJ KAZ provided music to get the crowd energized. The 2-mile charity walk kicked off at 7:30 with Ronald McDonald leading the way. All participants crossed the finish line and received goody bags filled with items donated by multiple sponsors.

Our raffle at the event was a big hit!! The first raffle item was chosen by another fun guest appearance. NBA Phoenix Suns Gorilla ran around with kids at the event and even caused some mischief with some of the vendors on site. We raffled off fun prizes are so grateful to those who donated. We are also thankful to those who participated with vendor booths, which included; smoothies & popcorn, jewelry & children’s clothing, massage booths, service dogs, and information booths from various companies.

We closed the event with the announcement to Mike Scarpone, CEO of ASAP and with great honor a presentation check with the amount of over $17,000 for research! It was an awesome experience and we are looking forward to getting started on the event in 2010!
Again, I would like to extend my appreciation of how much it means to my family, our Arizona Chiari & Syringomyelia Support group for your support, and the American Syringomyelia & Chiari Alliance Project.

We look forward to the event in 2010, Save the date - October 2nd, 2010 for our 3rd Annual event! For more details visit: www.myleegrace.com.

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