Friday, January 23, 2009

Baby steps

The seizures continue unabated. In fact, she's been throwing in tonic/clonics on top of her usual pattern. The last few days have been especially hard on her, particularly in the evenings. Whether it's from the cold weather or not (yup, it got below freezing overnight on three consecutive nights!), I can't be too sure. We've made some significant changes to her diet and some meds, so compounded with all of that, it could be anything. Any way we do things, though, she continues to seize.

Our biggest change was to her diet. I got it into my head that maybe she is allergic to her soy formula and a milk ingredient in another supplement. I temporarily blamed the mucous buildup on a suspected allergy. We ended up getting her blood drawn to rule out any common allergies only to get the all-clear on everything!

While we were waiting on the lab results, our alternative to the soy was to feed her baby food (duh! why didn't I think of that?!). She's been strictly on formula since the day she got her g-tube that it never occurred to me that I could put any FOOD down the tube! Since two Fridays ago, her menus are half baby food and half fats. 

Now, the good news is....(drumroll please)...she is eating some of the food by mouth!!! I thought it would be nice for her to have a taste or two of some sweets, so we've been trying to feed her the fruit portion of at least one of her meals each day. The first day I tried it with her, I was ecstatic :) I honestly thought she had completely forgotten how to eat and swallow, so I was in for a big surprise. She might manage about a half teaspoon of a fruit per day, but at least she is getting some positive (and rather tasty) stimulation in her mouth! 

Other than that, everything else remains the same. T kicked butt at his basketball game again today. He's quite an athlete! E is busy selling Girl Scout cookies and kicking butt academically :) They're such good kids!

2 comments:

catsmum said...

I hope you can keep up with the oral feeding. Even a taste is better than nothing. I can imagine how excited you are.
Hopefully the seizures change back to a more acceptable pattern soon.
It is as hot here as it is cold there we have ahd days of above
110f - 115f. Today is cooler thankgoodness.
Hugs,
Lx

Brooklyn and Kelly said...

YAY for fruit!!! Oh the little things we rejoice in wiht your girls....Big Hugs to Jade!

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.

Friends who follow this blog