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A Butterfly's Point of View

Princess Mayafly
I GET UP. I WALK. I FALL DOWN. MEANWHILE, I KEEP DANCING. -millel

Life is not measured by the number of breaths we take, but by the moments that take our breath away. Unknown

Stop telling God how big your storm is--Instead tell your storm how big God is. -Unknown

My name is Maya. I was placed in my Mama's heart in August 2000 and placed in her arms March 2001. I grew in her heart just as all children do. I LIVE with several issues and have lots of tubies including a G-tube in my stomach for venting, a J-tube in my small intestine for medication and venting and a central line (Broviac) that allows me to get medication and nutrition (TPN) through a large vein in my chest, and I also have a vesicostomy so I can use a catheter through a stoma (hole) in my belly. I have a lot of "diagnosis", but it is thought they are part of a channelopathy and mitochondrial cytopathy-a disease affecting the mitochondria necessary for the function of all organ systems and for providing energy to the cells-Some issues I have are autonomic and small fiber neuropathies, seizures, dysmotility, and CVID which is an immune problem so I get IVIG infusions every two weeks. I also have autoimmune issues and need blood transfusions fairly frequently. None of this makes me who I am. I am Maya....I love to play, I love to laugh, and I LOVE TO FLY!!! I never met a person I couldn't make SMILE!
Please take a minute to sign our guestbook, Maya loves to hear from her friends. And thanks for joining us on our journey.
Thanks Helen for Maya's Banner!

              
NEW PHOTOS ADDED 8/30/08
Thanks Hugs and Hope Members for continuing to brighten Maya's Days!
Hugs and Hope
MAYA LOVES BUTTERFLIES

Mayafly......

 Martina Mcbride - She's A Butterfly
She remembers when she first got her wings And how she opened up the day she learned to sing Then the colors came, erased the black and white And her whole world changed when she realized
She's a butterfly, pretty as the crimson sky Nothing's ever gonna bring her down And everywhere she goes Everybody knows she's so glad to be alive She's a butterfly
Like the purest light in a darkened world So much hope inside such a lovely girl You should see her fly, it's almost magical It makes you wanna cry, she's so beautiful
She's a butterfly, pretty as the crimson sky Nothing's ever gonna bring her down And everywhere she goes Everybody knows she's so glad to be alive She's a butterfly
God bless the butterfly Give her the strength to fly Never let her wings touch the ground God bless the butterfly Give her the strength to fly Never let her wings touch the ground
Oh, she's a butterfly, pretty as the crimson sky Nothin's ever gonna bring her down And everywhere she goes Everybody knows she's so glad to be alive She's a butterfly She's a butterfly She's a butterfly
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 Searching for a Fairy
A few people who know Maya set up a Special Needs Trust to help out with Maya’s expenses. If you are interested, the address is: Maya M. Owens Special Needs Trust, 137 Deerfield Circle, Bryan, OH 43506. *All donations will go directly to Maya's needs has as they arise.
Journal
Sunday, September 7, 2008 11:15 AM CDT Last night Maya slept from 4 pm until about 7:30 this morning. This was after 2 naps during the day yesterday so she is working with all she has to fight this infection and listening to her body so she is sleeping. Today she's more awake, but taking frequent cat naps. We also had a bit of a "gluey" problem as she tried to do some gluing of her pajama's to her blanket! All in a day's crafting. She did have a play date yesterday with her buddy Alex who is also here and they colored together. So fun to hear them talk to each other.
Today she wants to learn about lobster.......always a good sign. I figure as soon as Hello Kitty returns we'll be good to go.
Holly
Read Journal History
Hospital Information: Patient Room: This page is the property of Holly Owens. No copying of pictures or content without authorization from the author Children's Hospital of Wisconsin PO Box 1997 Milwaukee, WI 53201-1997 Rm 476 Phone: 414-607-5076
Links: http://www.mdausa.org/publications/Quest/q64mito.html MDA quest article on Mitochondrial Disease http://quiltsoflove.com/quilt/maya/maya.html Maya's quilt of love http://www.oleyfoundation.org Oley-information on tube feeding and TPN
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