Monday, February 11, 2008

Layin' low

Fortunately, there's not much to report here, as you can tell by the lack of posts. She's been pretty stable over the last couple of weeks and I didn't want to jinx our good fortune by saying it out loud! She's been incredibly vocal the last few days. We can't figure out why. Is she uncomfortable, lonely, or just wanting to communicate??

We're moving along with the land clearing. Surveyors today and foundation tomorrow. We hope anyway! Above is a "view" of our future view.

1 comment:

Brooklyn said...

You are BEAUTIFUL! Your mommy checked out my daughter's blog and left a link to YOUR blog. I fell in love with you the instant I saw your picture. It sounds like you have had a rought three years like most of our sweet Rett angels. I added a link to your blog - all of my firends LOVE reading about Brooklyn's super cool friends! I also wanted to let you know that I am STILL waiting on Brooklyns trial stander but when I get it, I will let you know! You sure seem like sweetheart and I look forward to keeping up with you on your blog!

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.

Friends who follow this blog