Wednesday, April 23, 2008

A quick update

Hi all! It's been a while since I've posted anything new. That's probably because nothing "new" has really gone on here. She's sick with another cold again (compliments of E!), but her seizures are not ballooning as expected. She had a few more leading up to her getting sick, but nothing too severe. Now I think it's Mommy and Daddy's turns to come down with it... :(

Jade has grown so much since the start of the year. She's gained about 2-3 pounds and grown 1.5 inches! She's getting heavier and heavier for us and has now outgrown the largest size baby diapers. Pampers came out with a size 7 and I truly thought she would be wearing them longer than this. So, now we move into the Good Nights (pull ups for bigger kids potty training). We have one more size to go before she's into the diapers we order off of the internet. They're not cheap and the quality is nothing like what you can get off the shelf.

As for the wheelchair issue, after two long months, Medicaid denied our request. It's unbelievable what they based it on: if they approve a wheelchair for a person, they will not approve another one for at least 5-7 years after this. Well, her first wheelchair came 2 1/2 years ago, so naturally they denied solely based on this. No matter how much she's grown. She's pretty much maxed out her current chair (which I can't stand by the way), so we are relying on our private insurance and CMS to cover most of a new one. We took her to Jacksonville yesterday for an evaluation for a new one, so I'm keeping my fingers crossed that they approve it and our out of pocket won't be ridiculously high. It's pretty annoying having to drive that distance for a wheelchair fitting. Most DME providers around here don't have specialists on staff that can fit her properly nor are they trained to do adaptations as she grows. Hence, the long drive. I was impressed, however, with the gentleman who measured her. He does individual/custom modifications suited to her, so that she gets the best seating and correct posture. It will be another long wait until it is finished, but hopefully one that is worth it. We finally got the van back last week and I'm ready to use her wheelchair in it. I don't trust the frame on her current chair, so until we get the new one, she will remain in her car seat.

As for the house, we're still stagnant with building. We've been waiting for the FAA to get off their lazy butts and sign a waiver to begin building again. I don't have a good feeling about getting approval, but I'll stay as optimistic as possible. The airport folks will fight tooth and nail, so it's going to be an uphill battle no matter what. Crazy you know whats...

That's our excitement for now! I hope that those of you reading this are enjoying the beautiful Spring weather. I know I am :)

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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