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A Butterfly's Point of View 
Princess Mayafly
Thanks Britt Anderson and the Littlest Heroes Project for taking the time and effort to photograph us this summer.
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 10/11/08
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
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
Saturday, January 3, 2009 6:54 PM CST This weeks been quiet. We've been able to spend lots of time together playing new games, reading new books, and exploring new interests. It's so wonderful to see her thirst for new things and also to see her imagination expanding when she plays on her own. She got so many wonderful books this Christmas that we've really enjoyed exploring together and also a game of states and capitals that is testing my knowledge of American geography and a nice break from some of the other games we've been playing the past few months. She's in love with all her pony's still and is forever having an adventure with her doll Kaya. The difference in her when she is in control over her energy and how she uses it is amazing. She spends a lot of time resting, but when she's up she's full speed ahead. On the days we have to venture out to the doctor or for other reasons she's like a different kid. She usually will need to be woken up and will end up not feeling well and dragging early in the day and just not functioning at the same level.
We've already started our list of things she wants to do this spring and summer. All she wants to do this winter is sled, ice skate, and go bowling all of which we will do and other than ice skating we've already done at least once. This summer she has told me she wants to go back to Ohio to visit her cousin again, sing around the piano with her Uncle Mitch, play croquet (this is all Sesame Streets fault, that's where she got the idea), and go fishing. It's been kind of fun making these plans and is helping us get through the harsh Wisconsin winter.
Thanks for checkin in on us, as always we love hearing from you!
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
Currently Home
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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