Wednesday, January 2, 2008

Loose tooth

Today was a typical day, for the most part. With every seizure, though, she is grinding her bottom tooth even more out of place. I suspect within the week she will need one of us to pull it (not my cuppa tea, ya know!). I'm going to have to bring in the troops for that task. We've taken to breaking out the gauze with seizures to stem the blood flow from her gum. Icky!

The kids continue to terrorize the house. T and I had a nice lunch together today and did a little shopping too. We also played some more games. I let them all win, just so all of you know I'm not a poor sport! That's what Christmas break is about, right?! E went to a Girl Scout Cookie Rally, which turned out to be pretty lame. No matter, as we are now into Girl Scout cookie season. Get your pens and checkbooks ready! It's cookie time!!!
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1 comment:

Anonymous said...

Kay- Your Mom has been keeping me up to date on Jade's situation and on the rest of your family for that matter :-) She told me you started a blog, so I asked her to send it to me, so I can stay current with what is going on. Of course- your Dad had to foward it for your computer challenged Mom- LOL! Please know that Jade and your family are in my prayers and will continue to be!

Hugs,
Cindy Boyer

January 3, 2008 at 7:31 AM

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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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