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!