Friday, October 10, 2008

We're baaacckk!!

We got back safe and sound on Wednesday. It was an amazing trip and we had great weather almost the whole week. The most amazing thing about Ireland is that there is a pub on every corner, and almost in between every building you come across! It was nice to be able to sleep in, stay up late, not have to worry about logging seizures, measuring food portions, etc. The kids were great in our absence, however, baby J came down with the nasty cold I left with. She's still pretty snotty and has an ear infection to boot! Go figure. :(

Her seizures are virtually unchanged. We go to see her Ketogenic team next Tuesday. I think I will persuade them to lower her Keppra dose to what it was a month ago. The increase has done absolutely nothing for her, so why bother? After reading most of the comments posted about the CDKL5 kids, it's very tempting to reduce all of her meds and just go with the Keto diet. We'll see what the good docs think.

On the home front, our new puppy should arrive within the next week or so. Wouldn't ya know, one of the names we're kicking around is Guinness :) He's a real cutie though and the kids are so excited for him to join us. Let's hope this time around, we don't have the problems we had with Stryker (who is doing very well by the way).
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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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