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! :)


Brooklyn 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!

Jen Krentler said...

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

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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