Friday, January 2, 2009

What gives with this time of the year??

It seems now that our little princess might have a urinary tract infection. This is almost identical to last year's ailments. While her seizures are still okay, she's had a couple more large clusters that are a bit out of the ordinary. Today, when I checked her urine stick, it showed moderate traces of blood, small nitrites, and small leukocytes. After a lengthy message with Jade's nurse practitioner (her pediatrician is on vacation until Monday), she immediately decided to prescribe Bactrim in case it is an infection. Her urine stick is generally a good indicator of this. Thank god I don't have to bag her or take her for a catheter draw. That would have been the icing on the cake!

So, we will wait and see if this clears things up. It will be nice once this dreaded holiday season is all done so we don't have to deal with missing doctors, closed clinics, and idiotic staff (Apria). By the way, a rep from Apria called and said it was the insurance company's error. Go figure. That's what they told me the last time this happened. Yeah, right! Regardless, she got her supply about an hour ago, so that should hold us until the next time they screw up! :)

2 comments:

Katie said...

gosh Miss Jade, you sure keep mommy on her toes! xoxo

Brooklyn and Kelly said...

Poor little sweetie, she can't catch a break!
Isn't it funny how it is ALWAYS someone elses fault! UGH.....wishing you a Happy 2009!

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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