Monday, December 8, 2008

A budding artist

Hello all! I think I get about two minutes to update until the kids are back from their bike ride... :)

The weeks have been a whirlwind with the holidays and shopping and social studies projects and decorating and...it's BUSY!! But, in a good way :0) The dog is still crazy but loveable, Jade is still having seizures but not as many (just longer and more intense), the kids are excited about Santa, and I am almost done my Christmas shopping! Now, if it would only snow. Ha ha! It's still in the low 70's here, so I don't think THAT'S going to happen :)

Jade now has a homebound teacher coming to the house three days a week. She is such a nice woman and so bright and bubbly with J. I wish I had done this sooner! So far, she has had Jade paint and she brought Jade some simple communication devices. Now Jade can turn on the Christmas tree lights and turn on her music when she wants to! I am eager to stimulate J as much as possible. She seems so bored all of the time that this is exactly what she needs. Tomorrow, her pt is bringing her son to therapy and he will be playing music (I think a guitar?) while she receives pt. This is going to be such fun for Jade! We're all looking forward to see how she does. Hopefully it won't be like today when I had to "wake" her to feed her and to see her teacher. She pretty much slept through her whole class and they were painting!! I got some cute pics though :)

 

I hope everyone who reads this is enjoying the holiday season. Christmas can't come soon enough in this house!
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1 comment:

Kelly said...

What a cutie, I think it is fabulous that you have a teacher coming to the house for Jade, how fun! I bet she will the the music durning PT too - the painting picture is just too cute!

December 10, 2008 at 1:02 PM

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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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