My Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about Grace, who has a mitochondrial disorder. We'll also include news about her father, Kevin, who also has mito.

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Journal

Saturday, June 20, 2009 12:48 PM, CDT


Here's a few little tidbits of things that have been going on here:

Grace is using more verbal speech--not always intelligible, but she is doing this consistently.  We're so excited  to see the possibilities opening up. 

Grace is officially signed out of the school system, at least for now--she attends the "Greenlee Academy" ! 

We're having some changes in speech therapy--a little  bit in limbo for right now, but we're likely to start up again in August with a new therapist.  We thank Erin and Stacey for their hard work!

Grace likes basil--she kept climbing on the stove to reach my spice rack and chew on that bottle.  She opened it and dumped it in her mouth!  Yesterday I gave her a piece of fresh basil leaf, and she asked for more!  Grace eating a green vegetable????  Next we try pesto! 

Grace has been delaying falling asleep at bedtime, repeatedly pushing her  mattress off the bed and falling asleep on the boxspring.  Last night we tried putting sheets on the boxspring, and she was very happy, falling right to sleep.  We'll try it again tonight, and see what happens, but it looks like she prefers a hard surface to sleep on.  Huh.  Definitely not something I would choose!

Generally speaking, Grace is indicating her preferences more clearly, and we are trying to be more observant and honoring those preferences when it's appropriate--which it isn't always!
 

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HOSPITAL INFORMATION

Clarian Health - Riley Hospital for Children
1704 N. Capital Ave
Bld. B Rm 251
Indianapolis, IN 46202
United States