Sunday, December 14, 2008

My own personal chef!

Jade and I made banana bread today! I really think she enjoyed helping me. She poured the dry ingredients into the bowl and helped mash the bananas. I think the mushy feeling of the bananas was really unique to her. She also held the measuring cups and the spoons and stirred the ingredients with a whisk! I think it might have all been a bit much for her, but she actually opened her eyes for the photo below!! It's great to see her do this kind of thing and "look" interested in something. :)

     Those are chocolate chips, by the way! :)


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2 comments:

Kelly said...

How fun and yummy - I have never had banana nut bread with Chocolate chips - sounds good! That sure is a cute little chef you have there!

December 15, 2008 at 9:01 AM
Anonymous said...

OMG...I love the pictures! And Kay, you are such an amazing mom to keep her incorporated into doing things like that.

December 15, 2008 at 9:03 AM

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Our peanut in a nutshell...

Hi everyone! Thanks for visiting my blog. My name is Jade and I am currently 8 years old. I have a big sister and a big brother whom I love very very much.

I have a very rare neurological disorder that isn't even named yet! It is a genetic mutation called CDKL5. It is considered a variant of Rett Syndrome and presently, I am only one of around 600 or so children in the world documented to have this mutation. Each child is unique in that his or her symptoms vary quite a bit. Unfortunately, I am one of those children who is affected much more severely than most of the kids.

Some of the problems I face include:

Reflux (in October 2006, I had surgery to have a Nissen Fundoplication done and to have a gastrostomy tube inserted for feedings). As of March 2012, I have a GJ tube for continuous feeds.

I am hypotonic - I have virtually no muscle tone and I find it difficult to even hold my head up on my own.

I have cortical vision impairment - my brain doesn't process the images it sees. Sometimes I see off to the side, sometimes, my vision is shuttered, sometimes I don't have any vision at all. The doctors and my Mom and Dad don't really know how or what I see because I can't tell them.

I cannot talk nor communicate with gestures.

I cannot walk, nor will I ever walk.

I grind my teeth. So much so, that some loosen during seizures.

I cannot grasp objects or use my hands for the simplest of tasks.

I cannot sit on my own. I can, however, sort of roll over from side to side.

I am choreoathetoid. I cannot control the jerky movements my arms and legs make.

I have life-threatening seizures every day. This is my greatest challenge.

So, now that you have gotten to know me, please feel free to take a stroll around my blog. Some of it you read may seem depressing, horrible, unfathomable, and downright crazy. But, this is my life.

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