Thursday, December 27, 2007

Let's see if we can bite off our tongue!

Well, the dreaded moment arrived this morning during yet another seizure (have I mentioned yet how much I REALLY REALLY HATE seizures?). No sooner did she start seizing when blood started pouring from her mouth. Naturally, my first inclination was that she bit off part of her tongue. After careful inspection (well, sort of - she wasn't too keen on opening up her mouth for me), it seems she somehow injured her bottom tooth and gum when she grinded down with the seizure. I'll try to check later to see if that's really the case. I guess it's a good thing she doesn't eat by mouth if she's going to be sustaining injuries like this.

Last night was another crappy night full of the monsters. I'm trying to take her off of the Phenytoin, so that doesn't help in curtailing them. She will probably just get more Klonopin through the day until that is out of her system. Drugs, drugs, and more drugs.

So, now we attempt a whirlwind cleaning of the house today in anticipation of our guests. The kids are excited but not happy they have to clean their rooms! B and I, though, are awaiting a much needed "Kay Day" (explanation later). It will be refreshing getting out of the house for a little while.

I'm sure I will have more to post later on...

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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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