Friday, December 19, 2008

Icky, yucky, tummy :(

Well, it's that time of the year again for illnesses! I finally know why J's seizures were so horrible this week - she has a stomach bug. What's terrible is that I knew she wasn't feeling well two days ago because she was feverish. Had I known that her stomach was upset, I would have taken it much easier on her with food and therapy. I guess her revenge is passing it on to me today! :( She's been sleeping since last night for the most part. Thank god for the g-tube, because I would not be able to get food or fluids into her otherwise. Bad thing is, she can't have Pedialyte or tummy meds because of the diet. Gotta ride this one out. At least she seems to have had only one seizure between today and yesterday so far. I'm keeping my fingers crossed because I lowered her Zonegran this week (before I knew she was sick). I am trying to see if lower doses of meds will "wake" her up and snap her out of the zone she's been in all year. I have a sneaky feeling that the Zonegran that we started last December is what is keeping her from moving the way she used to. She has no desire to roll over or do much of anything. We may find out if I can wean her off of it, or way down. Let's pray her seizures don't get worse as we drop the meds. Say some extra prayers for her that this doesn't happen.

I FINALLY finished wrapping Christmas presents. I thought I would never get done. I hope I'm not forgetting anyone or anything...! Now, I'm just waiting for the holiday to pass so that I can start packing up the house. Things are moving at breakneck speed now. The drywall will be done today. The pool deck was poured, acrylic was applied, and they painted the deck already! The outside of the house is completely painted. Soffit will be in place soon and the flooring will begin being installed in the next week or so. Now, the pressure is on for me to choose lighting, plumbing, paint colors, carpet colors, and landscaping. Yippee! I can finally see the light at the end of the tunnel with this project. I don't have a current photo, but I will try to download one soon.

I have a feeling I won't be posting again until after Christmas. I hope this post finds everyone healthy and happy. May your Christmas be very Merry and all that you hope for!

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1 comment:

Kelly said...

Awwww....get better REAL soon Jade!!! Big Hugs from Indiana!

December 20, 2008 at 5:55 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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