Thursday, August 21, 2008

Okay, Fay! Get a move on and MOVE!

My joy at the kids going back to school was short lived :( They managed to get there on Monday, only to have the next three days off due to Tropical Storm Fay. This darn storm has been sitting off our coast since the beginning of the week, churning up the waters around the restaurant (quite nerve-wracking considering what we went through in 2004). They won't put the kids back in school because of the possibility of high winds (40+ mph winds prevent buses from running), and we're kind of sitting ducks at this point waiting for it to move on. It's pretty insane provoking!

As for Stryker, she is on a 3 week regiment of antibiotics for a UTI. I took her for a second opinion after the oddball holistic doctor's diagnosis of "a chemical overload" (duh) with accompanying natural supplements instead of actual medicine. Her new vet is great and they are taking good care of her. After one week of antibiotics, she seemed to be getting a little better, but we erred on the side of caution and took her in Tuesday for another check. The vet did an ultrasound of her bladder and kidney (results normal) and a clean urine catch. They are growing the culture and I expect to hear from them today or tomorrow with those results. I am keeping my fingers crossed it is treatable and not an incontinence issue. She's still peeing in her sleep (a lot, not a little) and we are also hoping it is a behavioral issue as well. An incontinent dog is the last thing I need in my life!

Jade is doing fairly well. I am blaming any increased seizure activity on the low barometric pressure from the storm. We're averaging around 1-3 seizure clusters per day. They are pretty strong and have a lot of tonic components that are a bit new within the last few weeks. She is scheduled to see her neurologist on September 11. I am hoping he doesn't want to increase her diet ratio. It is something I won't do to her little body.

So, today we sit and wait again for the storm to pass. The business was closed yesterday in anticipation of it hitting us, but open today. Keep your fingers crossed for Florida!
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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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