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myleegrace2006.blogspot.com

Butterfly Kisses: January 2014

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Wednesday, January 1, 2014. Our day today, the first day of the year 2014 is now coming to a close. Dave has just finished his run for the day and he is feeling great! We are less than 3 weeks now until Arizona's PF Chang Rock N Roll Marathon. We are excited for TGen's Rare Childhood Disorders. To be an official charity this year! Team Mylee's Marathoners continues to train hard and fundraise with so much enthusiasm! We are so proud and excited for this fun event! We are so grateful for those who continu...

myleegrace2006.blogspot.com

Butterfly Kisses: September 2013

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Thursday, September 5, 2013. We continue to breath. to live without our princess. Life over the past sixteen and half months has been mostly in a fog. Moments of clarity are few and far between. However, we continue to live. Our continuous heartache is a painful reminder of the fight she so courageously fought. A piece of her baton passed on to each of us as we continue her fight against rare childhood disorders and our hope of victory against Mitochondrial disease. Never Give Up,. About Me. ♥. Kristen K...

myleegrace2006.blogspot.com

Butterfly Kisses: June 2011

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Tuesday, June 21, 2011. Finding a happy balance ♥. Realities really seem to be a struggle lately and even writing those first few words really aren't accurate because the struggles have been on going for almost a year! It must be due to her outgrowing the baby years and into a child. Why am I having such a hard time with the reality of having a child with disabilities? Is it my faith that I believe a miracle could happen? Is it the HOPE that one day she could be healed on this earth? Tuesday, June 7, 2011.

myleegrace2006.blogspot.com

Butterfly Kisses: February 2011

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Tuesday, February 15, 2011. Child's play.♥. We enjoyed the beautiful weather yesterday and took the girls to the park. it was a suggestion by Mylee's physical therapist to meet at our local city park in our neighborhood. It was amazingly beautiful outside, I think the temperture was almost 80 degrees! In fact, so well that she created angels in the sand (us desert folk make sand angels instead of snow angels! Wednesday, February 9, 2011. Bonded forever ♥. Thursday, February 3, 2011. A smile like no other.

myleegrace2006.blogspot.com

Butterfly Kisses: Who is your Hero?

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Friday, February 21, 2014. Who is your Hero? Do you remember being in school or a young child and someone asking you, "Who is your hero? This is one hero we are so thankful to also call our friend. In 58 days, Phil Maderia and his Genzyme running team. Of 30 runners will be running in the Boston Marathon for rare diseases. They are dedicated to making an impact on the lives of people fighting these incredible battles of diseases without treatment options or cures. Alone we are rare, together we are strong.

myleegrace2006.blogspot.com

Butterfly Kisses: July 2011

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Saturday, July 9, 2011. I have sat down many times in the past few weeks to update this blog and ended up having to put it away because my head was full of fog, much like it is at the moment but I decided to just start writing and I would re-read to see what I came up with before posting the written thoughts. Seizures activity and unusual episodes. New brain changes; lesions, atrophy. Subscribe to: Posts (Atom). About Me. ♥. We try to live our lives peacefully and by our family mantra to "Never Give Up"&...

myleegrace2006.blogspot.com

Butterfly Kisses: We continue to breath.... to live without our princess.

http://myleegrace2006.blogspot.com/2013/09/we-continue-to-breath-to-live-without.html

Thursday, September 5, 2013. We continue to breath. to live without our princess. Life over the past sixteen and half months has been mostly in a fog. Moments of clarity are few and far between. However, we continue to live. Our continuous heartache is a painful reminder of the fight she so courageously fought. A piece of her baton passed on to each of us as we continue her fight against rare childhood disorders and our hope of victory against Mitochondrial disease. Never Give Up,. About Me. ♥. Kristen K...

myleegrace2006.blogspot.com

Butterfly Kisses: March 2010

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Sunday, March 28, 2010. 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! On Being a Champion. A Champion is a winner,. We have ...

chiariansunite.blogspot.com

chiarian journey: November 10, 2010

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A chiarian journey. A journey of growth, changes, documenting and remembering most of it. Wednesday, November 10, 2010. November 10, 2010. I cannot believe it's November already! I'm in Physical Therapy and I'm getting better every day. I'm so glad the hardware is out of my head. It goes to show that the hardware and the fusion from my skull to C-4 was oh so wrong for me. There is a level of frustration - four years PLUS of pain and suffering = would I have returned to work? Four years of SSDI? Http:/ az...

chiariansunite.blogspot.com

chiarian journey: November 2007

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A chiarian journey. A journey of growth, changes, documenting and remembering most of it. Wednesday, November 07, 2007. Just resting. A vent for psychiatrists that don't listen. I know Chiari is in our heads, but its not a mental disorder, it is a physical problem for which there is a treatment but no known cure. Thats why the pharmacuetical companies want nothing to do with us! Our pain isn't their pain, and it just doesn't "go away" I wish it did. Tuesday, November 06, 2007. I feel blessed today. I go ...