Sunday, January 27, 2008

Let the building begin!

Here's a short video of one of the trucks taking down a giant tree on our lot. It's pretty amazing how accurate the driver is when falling the tree! For those of you who are epa fanatics, the downed trees will be put to good use and there will be others planted in their place when the house is built. A good portion of the wood will be used as mulch, some as building material, and some as firewood. It's all good! Enjoy the show :)

J's doing well. She is having less seizure activity and a good portion of her days go by without much noticeable activity. If she does have one, it's generally toward bedtime or between 10pm-12am. I'm keeping my fingers crossed the good luck continues. I think this time, the combination of the new meds coupled with the diet increase may have helped. We'll see how long she can hold out!

1 comment:

Angela said...

Congrats on the start of the new place. Thanks for sharing all of the information about Jade. Wish I was closer and got to see you more.

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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