Sunday, February 24, 2008

Miss Bubbly Boo

As I said in my last post, things spiral downward after I tell someone she is doing well. She's not really bad, she's just been having more seizure activity. Lately, J's been doing a lot of tummy grumbling and burping. Not things that are comfortable for her, especially since the Nissen is supposed to curtail the air release. Every time we vent her g-tube, we get massive amounts of trapped air back out. I feel awful for her and can only blame it on the effects of the diet. Still, the trade-offs (less seizure activity, more head control/strength) are what keep her on it.

She bit her thumb again last night during a seizure. It's not as bad as last time, but STILL!!

They poured the foundation at the property this week. I think the slab might be next week or the week after, once inspections pass. I've been so eager to start really shopping for the interior, but we still have a ways to go. It's looking like we will be in around Thanksgiving. I'm keeping my fingers crossed!

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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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