Saturday, June 28, 2008

Test results and a video!

Her tests went well, after much trepidation on our part. She weathered the endoscopy and accompanying anesthesia great, and the doc gave us pictures of her clean looking tummy! No ulcers, irritations, g-tube balloon looked good and in place, and the Nissan was intact. The upper GI went much quicker than I expected - about 15 minutes. It showed no reflux and the Nissan looked great on that too!

We will just continue using Prevacid for potential reflux. It is the only thing we've added since her seizure activity started acting up and now she is doing much better overall. Sleeping better, and seizures are way down (of course that might be changing at the moment - watch the video). For those of you who know her well, the cute laughter you see is usually an indicator of not so good things to come :(  But, it's nice to see her smile nonetheless!

I hope you enjoy the video!


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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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