Tuesday, May 26, 2009

The latest...

I can't believe it's been since February that I've posted! Moving took a big chunk of time and energy, and we still have contractors coming to the house each week (we moved March 20). I absolutely love the house though, and the water view is incredible! We had our housewarming party a couple of weeks ago and everyone had a great time. It was nice to be able to entertain again.

As for Jade, we had a follow-up visit after her hospital admission. The seizures had been creeping up in numbers again since starting the Phenobarbitol (no small surprise), so her neuro decided to try her on a newly released drug called Banzel. It is supposed to be effective in treating Lennox-Gastaut seizure patterns. It's difficult to say if this has positively affected her because she still continues to have large seizures each day. She also caught a cold and is still battling a lot of drainage from it. That, plus seasonal allergies, up the number of seizures she has each day. This week has been pretty decent though since her return to better health. She is more alert and interactive and it's so awesome to watch! We have a new game called, "Yay, Jade!!". She LOVES this and her personality shines. She enjoys the attention and the excitability of our voices. She has also been spoiling us with half-grins each day, which are so cute to see :)

I'm keeping my fingers crossed that the Banzel does the trick. It can take a while for it to become fairly effective, and she still has room for increases if needed. After that, we move on to Depakote, which I am loathe to do. Wish her luck!

1 comment:

Brooklyn and Kelly said...

Thanks for the update, it is good to hear from you again, I have been thinking about Jade a lot and hoping everything was ok!
I am do glad you all are moved it!! How wonderful!

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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