Tuesday, September 30, 2008

Off to Ireland

Tomorrow we leave for Ireland! Naturally, I have a miserable cold at the moment :( Nothing a little Jameson's or Guiness won't cure, right?! 

So, to add to the stress of leaving the kids, now I am worried that Jade will get this cold. She doesn't do very well with respiratory infections, so I am keeping my fingers crossed and inundating her with Zicam. Send a few good vibes her way to keep the sickness at bay! She's still been seizing like crazy, averaging about 10-15 tonic seizures each day and 3-5 myoclonic/tonic clusters each day. Will the madness ever end??? I keep waiting for her to start the sniffling and sneezing because then I will have a better understanding of why she's being bombarded so much. Once again, stupid seizures!!!

I hope that with the arrival of Fall, everyone reading this blog is healthy. We take Jade to get her flu shot when we return. Can't be too careful! I may have to get one this year. Not getting any younger and I don't want to pass it on to the kids, especially J.

Bon voyage everyone! Pray we make it there and back in one piece (pretty morbid, huh?)!
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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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