Tuesday, July 29, 2008

Back from vacation!

We arrived back in Florida late Thursday, and thankfully, in one piece! The drives up and back were long and exhausting, but not too stressful. We had decent weather most of the week, except I felt like we were still in FL since it was REALLY hot up there! It was great spending time with my family again and we had so much fun visiting all of our favorite fun spots. I can't wait to go again!

Jade is still roughing it with many seizure clusters through the day, and some at night. A call to her neuro has her increasing her Klonopin (albeit briefly) to
 hopefully give her some rest. I haven't really done as he instructed because it leaves her very sluggish and it slows down her already backed up g.i. tract. Once she has a good cleanout (I know, eww), she might begin to feel better. She's been really warm to the touch the past few days, and I wonder if she is brewing anything. I checked her ears and they seem okay. No runny nose, no congestion. Her temperature is slightly higher than normal (98.8 vs. 97.4) so that could mean something. Just watch and wait again...

We also just made our already busy house even busier with the addition of a new puppy! Her name is Stryker and she is a pure bred Doberman Pinscher. What a cutie!

Friday, July 11, 2008

On vacation

We are going on our annual summer trek to Northern U.S. next week. It should prove to be an interesting ride. We finally got Jade's new wheelchair and have outfitted the van with the EZ lock system to keep it securely in place. It was an exhausting week for all, especially little princess. She had to endure a trip to Shands, a trip to Jacksonville, and running around town getting errands done. It was a little hard on her and she was wiped out! Seizures were up of course. I'm sure this week is a good indicator of what our trip will behold. I'm keeping my fingers crossed she does well and we have a fantastic vacation!

Sunday, July 6, 2008

A video for Yahoo members

This video is more for the members of my Yahoo group, but anyone is invited to preview it. It is a short clip of one of her seizures. I caught her on tape in the middle of it. It probably lasted at least a total of 5 minutes or more. These are the bigger ones she has these days and they wipe her out afterward. She has anywhere from 1-5 per day lasting from 2-7 minutes each. She also has seizures that include eye deviation, staring spells, and tonic seizures. These also occur almost every day along with this videotaped event.

Wednesday, July 2, 2008

House update and photos

The builders are moving right along! Today, they are pouring the cement into the Reward wall structures (the white looking "legos" in the photos). It was pretty neat to watch (and pretty messy!). Next week, we should have the floor joists in place for the second floor.

As for Jade, she is still having tummy troubles with excess air and discomfort. Of course, she is also having more seizure activity along with it. I have no idea what could be ailing her. I just hope it passes quickly. The only benefit with whatever is going on is her many laughing spells this week. It's nice to hear her little girl giggle and big belly laugh.

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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