Monday, November 17, 2008

Weekly update

There's not much to write. Jade seems to be doing a little bit better over the last couple of days, but I'm not holding my breath (ok, yeah. maybe I am). She had a doozy of a seizure last night around dinner. I thought it would knock her flat on her butt, but she stayed awake for a while after. The good part was that it seemed this was her only seizure all day. I was gone all day shopping with E, so I will pretend this statement is true :)

Speaking of E, she entered a pageant and was accepted to take part. The next step happens this weekend. She has an interview and photo shoot on Saturday, and Sunday is the big production. She's so pretty and smart, she's gotta be a shoe-in! I posted a photo of her in her formal attire!


Katie said...

I love the look E :)

Can't wait to hang out with you on Sunday baby J!!

Brooklyn said...

She is so beautiful - you are right she is in for sure!!! Give Jade a big hug for us too!

Jen Krentler said...

E is so grown up and beautiful! How could she not be a winner?

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