Tuesday, September 30, 2008

Off to Ireland

Tomorrow we leave for Ireland! Naturally, I have a miserable cold at the moment :( Nothing a little Jameson's or Guiness won't cure, right?! 

So, to add to the stress of leaving the kids, now I am worried that Jade will get this cold. She doesn't do very well with respiratory infections, so I am keeping my fingers crossed and inundating her with Zicam. Send a few good vibes her way to keep the sickness at bay! She's still been seizing like crazy, averaging about 10-15 tonic seizures each day and 3-5 myoclonic/tonic clusters each day. Will the madness ever end??? I keep waiting for her to start the sniffling and sneezing because then I will have a better understanding of why she's being bombarded so much. Once again, stupid seizures!!!

I hope that with the arrival of Fall, everyone reading this blog is healthy. We take Jade to get her flu shot when we return. Can't be too careful! I may have to get one this year. Not getting any younger and I don't want to pass it on to the kids, especially J.

Bon voyage everyone! Pray we make it there and back in one piece (pretty morbid, huh?)!

Friday, September 26, 2008

Please look at our Yahoo group's sister site!!!!


(click on the above header)

Notice the color?? :) It's jade!!!! Pretty cool, huh?

I hope everyone reads through the website. It is pretty new and still being tweaked, so check back often for new stuff!

Thursday, September 25, 2008

Happy Birthday (yesterday) Jade!

Lil Miss Jade celebrated her 4th birthday yesterday!! :) Given the number of seizures she had been having over the last couple of months, she did marvelous on her big day! She must have known she was the center of attention, because she only had one major blowup all day. That's my girl! (now, however, is a different story). Regardless, she seemed to enjoy everyone oohing and aahing over her. Thanks everyone for the fabulous clothes for her. She is really going to shine in her new duds!

Call me bad Mommy, but I even gave her a finger full of icing! We're not quite sure if she liked it or not, but she didn't spit it out! Check out the photo of her face when she tasted it:






I think she got over the initial surprise and ended up savoring it! :)






As for the dog, we had to give her away :( Our homeowners insurance won't cover that breed, so we set out to get a new, covered puppy. Our latest discovery is an American Bulldog. We get to go look at him on Saturday. He's adorable, just not as pretty as Stryker. At least we know she is in good hands!


Friday, September 12, 2008

Look at Jade swim!

video

This footing was taken this past Tuesday while she had her weekly aquatherapy lesson. I am so glad we purchased this vest for her! She absolutely loved the freedom to kick around and showed off her swimming skills to anyone who watched. Go Jade! 

We saw her neuro yesterday and the most he decided to do was to increase her Keppra. We gave her an increased dose last night and she slept until 11am this morning! Either it made her extremely tired or she's getting sick. The day we filmed her swimming, she must have had no less than 10 tonic seizures. We'll find out soon enough if she's brewing something.

We were fortunate enough to meet another CDKL5 girl yesterday in the same clinic. She is a couple of months older than Jade and is almost identical in terms of physical limitations. Her seizures are not quite as fierce from what I gather, but she and Jade share a lot of traits. Her mother and I shared stories and I gave her our web info and Jade's blog information. I hope to hear from them again, especially since they are from Florida!

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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