Sunday, February 1, 2009

Chillin' and Illin'

You know it's Winter when your kids get sick, recover, then get sick again right away! Baby J is coming down with a cold, thanks to big sissy. She's been sneezing a lot, which is good because then she can get some of the nasties out since she can't blow her nose. Poor little bug!

As for seizures, they're still hanging around, but some days are better than others. Our latest flurry can be explained by her current illness. Not as bad as I expected - yet. I dropped 50mg of her nighttime Zonegran. I honestly swear that each time I do a med drop, she gets sick! Crazy, but seemingly true. My goal is to have her weaned of Zonegran by our February 19 neuro visit. The pharmacy we get it from no longer carries the generic she had been taking. The manufacturer changed and I don't want to play around with different formulations of anti-seizure meds. I don't care how many docs think that generics work just as well. I don't and never will subscribe to that thinking. There's a reason generics are cheaper...you get what you pay for :)

The house is down to the nuts and bolts stage. Tile went in last week and should be finished by Wednesday of this week (boy, that's a story in itself with the installer - quite a piece of work he is). They are almost finished hanging doors, the painters have the biggest job, but are about 3/4 of the way finished. Our dining room is fantastic! The ceiling is a piece of art in itself and the wine room is extraordinary. All of the base cabinets are installed in the kitchen and the appliances arrived Friday. There is still a lot of detail work to be done, but I am seriously keeping my fingers crossed we can have the CO by the second or third week of this month. Keeping my fingers crossed..


.  GO STEELERS!!!!!!!!!!!!!!!!!!!
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1 comment:

Kelly said...

http://www.target.com/NasalClear-Nasal-Aspirator-BR140/dp/B000HVDZKE/sr=1-6/qid=1233582564/ref=sr_1_6/175-1570179-9545403?ie=UTF8&rh=k%3Ababy%20nasal%20aspirator&page=1

This has helped us with Brooklyn's snotty nose!

February 2, 2009 at 8:53 AM

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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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