Sunday, December 23, 2007

December 2005

December 21, 2005

Since the start of the Keto diet, Jade's strength has improved and she is now holding her head up for longer periods of time. The downside is that this week, she's having a lot of drop, absence and staring seizures, which may be due to teething. It's starting to wear on her and I'm praying she doesn't regress with the frequency. She was doing pretty well for a few months, so hopefully she'll weather this storm and get back on track soon. We began a Topamax wean a couple of weeks ago, but I don't think this is the problem. I am pretty tired of fighting this horrible monster inside her head!

On a good note, we got her wheelchair this week! Much easier to transport her now. We're also constructing her bedroom into a multi-sensory room and she's getting a lot of really neat things for Christmas to decorate it.

She's a real trooper! At this point, all I want for Christmas is to see her smile and hear her laugh. Anyone else in the same boat?

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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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