Friday, August 29, 2008

School is in session!!!

Time to party!! :) The kids are now officially in school and Momma can relish a little bit of peace and quiet and work on a long to-do list. It was a nice week for the most part, yet still pretty hectic.

The dog is healing, finally. Her urinary culture came back negative, which means the antibiotics are working. Now, if we could get it through her thick head that peeing is an outside activity, then we're on the right track. I have hired yet another trainer to come to the house tonight to help with her increasing biting habit (she's teething) and to teach the dog how to let us know when she has to go out. Keep your fingers and toes crossed...!

Jade has had a rough week. Her seizures are a lot more forceful and greater in number for some reason. She bit the inside of her mouth yesterday during one which created a nice bloody show. Injuring herself during these blasted things always makes me nervous. I can't do much about the inside of her mouth, unfortunately, so I hope the cut isn't too painful. I really can't stand these vicious seizure cycles and the guessing game that goes along with them. I will pull excuses out of the air just to have a reason for the increase. Let's see. This week, I'll blame it on the heat! How's that? Actually, August is awful in Florida and I wouldn't be one bit surprised that it has some sort of effect on Jade. Not to mention, another potential hurricane headed our way!

I hope everyone has an enjoyable Labor Day holiday and the weather remains calm. :)
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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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