My Story

Welcome to Julianna's webpage. In January 2007, Julianna was diagnosed with a rare metabolic disorder degenerative of the central nervous system called Mitochondrial Disease ,
Now in 2009 they are saying she must have a genetic disorder also. New testing has begun. Suspected metabolic disorder as of 5/2009

Journal

Wednesday, July 1, 2009 10:00 AM, CDT


Psalm 9: 1-2
I will thank the LORD with all my heart; I will declare all Your wonderful works. I will rejoice and boast about You. I will sing about Your name, Most High.

Good Morning,

Julianna has had a lot of head lagging and stamina difficulties going on.  She has been vocal and no staring spells today.

We greatly appriecate your cards, notes, emails and post here all wishing and praying awesome things for her.
Her big sister has been spending time with her. She enjoys the interaction.

Her brother's will be going to vbs GOD willing.
We are all attending wednesday nights at our church. We have had some eye opening moments. A lot of reflective ones too.

Julianna has an appointment on Thursday July 2nd to swap out her G/J tubes.
Joey will be turning 6 on the 4th of July.

I have been working on Juju's Baskets, just waiting for a good day to put them out to help her.
Always looking for unused items to make them for her.

I am a little tired and I think this note reflects that. Please continue to pray for Leah, Kelly, Eva, Mark, Jestina, Dino, and all of Julianna's Mito and nonmito friends.
She has made lots of friends with diferent journeys along the way. All with amazing families and awesome testimonies.
Humbled to know them.
Please have a safe weekend.

Humbly,
Juju's mommy


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E-MAIL AUTHOR

extreme2294@aol.com

HOSPITAL INFORMATION

Children's Hospital of Philadelphia
34th Street and Civic Center Boulevard
Philadelphia, PA 19104
(215) 590-1000