Thursday, March 20, 2008

The Honeymoon is over

Naturally, good things come to an end, don't they? For those of us in similar situations, I'm sure you can agree. Once J came down with her cold, her seizure threshhold lowered. She hasn't regained the "control" she had in February, and I'm greatly disappointed. Maybe if I ignore the seizures, they will go away??

So, as usual, I pretend there is another reason for the increase. This time, it's seasonal allergies and/or another growth spurt (hey, she put on a half pound since the end of February!) They are not as bad as back in November and December, but they are still bothersome to me. Must have something to do with holidays... :)

I have her on Zyrtec at night. That stuff really tires her out! I'm amazed at the amount of yellow pollen covering everything in the great outdoors. I hate not being able to open up the windows and doors to enjoy this time of year, but I don't want to risk any repercussions. Even E (and myself) are having trouble with drainage and we don't have any known allergies! This, too, shall pass?

To add insult to injury, we hit a major snag on the home building front. Some *&%#@^! pilots from the municipal airport across from our property claim they are not going to let us build a two story house. The city put a stop-work order on the property until it's resolved (if it is), so we're waiting on pins and needles for our next move. Keep your fingers crossed we come out as victors...
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Saturday, March 1, 2008

Colds, colds, go away!

The rest of us were bitten by the cold bug too. Jade's nose isn't as bad as last week. Hopefully, the drainage won't be too hard on her. Unfortunately, because she got sick, her seizure activity has increased once again. After so many good weeks of decent "control", she's now back to many each day and night. Not bad, just many. Yesterday and today, I've begun noticing that she is having clusters of head drops. They're very subtle, but she probably has about 20-30 drops per cluster. We are on cluster number 3 so far today (it's possible we missed some). She had brief tonic seizures through the night again, and has been having her strong tonic seizures followed by tonic spasm clusters once or twice a day since last week. I am keeping my fingers crossed that once she feels better, the seizure activity will subside again. Put her in your prayers for this to happen!
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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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