Wednesday, January 16, 2008

Day by day

I was made aware of the fact that I haven't posted anything more since Friday. No news is good news, right? I hesitated posting because I didn't want to jinx anything!

Actually, things have been pretty much the same with her. We watched her bilirubin levels over the weekend and did a blood draw on Monday for liver function and cbc. Both came back normal. The true test will be after today, when her Bactrim script is done. She's still doing fairly well with her seizures (knock on wood), so hopefully things will remain static for a while. We changed her diet to RCF (a carb-free soy formula) instead of the KetoCal, so it remains to be seen whether this has any direct influence on her seizures.

Tomorrow is our trip to see the neurologist. I hope it is a good visit and we come away relieved instead of aggravated. Naturally, her seizures are decent, so there isn't much to report or discuss with him right now. I'm sure she'll wait until after our clinic visit to go downhill again. She's a bit animated today. It may be because her last seizure was around 3pm yesterday afternoon. I don't think she seized during the night or else I was so completely zonked from exhaustion that I didn't hear her. She may be working on a cluster soon, though.

We bought her a net swing and she absolutely loves it! We put music on for her and the kids like taking turns pushing her. Her best friend, Glo Bear, sits with her in the swing so she has something interesting to look at!

A good piece of information I came across today was that one of the American Idol contestants has a girl with Rett Syndrome. Our Rett parent board was full of excitement because this is a major publicity announcement that Rett Syndrome has so desperately needed forever. You can watch the girl's (Angela Martin) interview clip where they show her daughter. It gives me chills just thinking about it. I am not a fan of American Idol at all, but I may watch the next time she is on in case it is a voting episode. The Rett community needs her to win in order to gain more exposure. So, any of you who are or are not fans, be sure to watch future episodes and place your vote for Angela. It may indirectly help Jade someday...

For those of you up North, please keep me posted about K&C's baby. Hearing about another infant, especially a relative, having seizures at the age of three weeks is frightening to me. If any of you have any further information, please email me privately. Please also give them my best.

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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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