Tuesday, November 11, 2008

Keeping my fingers crossed

While I haven't seen much improvement with the increase in Zonegran, there is potential I believe. She had a "better" day yesterday with fewer tonics and a longer gap in between seizures. However, the seizures she had were HUGE. 

I may be jumping the gun, but I decided to take away her morning dose of Klonopin. It was such a small amount, I really can't see that it is doing any more than sedating her through the day. Hopefully, the absence of it won't affect her too severely. My thinking is that the increased Zonegran will temper the Klonopin disappearance. I was halving the Zonegran between the a.m. and p.m. medication doses, but today I am giving it all with her first meal. This should give me an idea of whether she is sedated with the higher dose. I hope she won't be sleepy.

I haven't posted about the house too much I realized. We are coming up on the fun parts! Well, for me anyway :) I am in the process of picking out the flooring, fixtures, appliances, paint, etc. and it's a bit overwhelming! However, it's coming along nicely. Once I get another good shot of the front, I will post it. The closer move-in time gets, the more impatient I get with waiting!

Tebow is doing well. He is a much better family dog than Stryker was. He still nips and gets me up at the crack of dawn, but it's far better than the zillion daytime and nightly bathroom trips Stryker required. I heard they cropped her ears! A pretty look, but not a nice thing to do to her :(
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1 comment:

Brooklyn said...

I hope everything goes well with the change in medicine!

November 11, 2008 at 8:15 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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