Updated Info

So, we haven't seen any of her "blue seizures" (as we call them) since last Wednesday!!!  After having 23 of them in the previous 6 weeks, this has been quite a nice break!  So it appears that the Topamax is working (we started it last Wednesday).  She seems to be tolerating it pretty well, and we've even increased it since she's started it (it's a titrated dose, meaning we do it in incremental steps).  We are so thankful to see our baby pink, all the time, instead of seizing and blue every day or two.

With the extreme heat we've been having here, though, we have had to be careful with her since one of the biggest side effect concerns is the inability to sweat and control body temperature.  That means she could easily overheat, so we've basically had to keep her inside.  The times we have taken her out have been later in the evening when it's cooling off (and even then we've taken ice packs to keep around her), or one time at a friend's house in their pool.  When she wasn't in the pool (in the shade), she was still wet and in the shade with water being poured over her head to keep her cool, then inside their house.

We have also been trying her on a new formula, Pediasure Peptide.  It's a partially broken down formula and appropriate for "older" kids (as in, not infants).  She seems to have tolerated it well, so we are making the switch from her baby formula to that.  She's growing up!

She also now has 3 teeth!  She cut her third one, another bottom tooth, a few days ago.

Finally, today she was literally giggling.  Something Jackson was doing or saying was making her let out short little laughs this evening.  I tried to catch it on video but it distracted her and she stopped.  It was so fun to hear her giggle though!  We've never really truly heard a good, true laugh from her, but these quick little giggle sounds are music to our ears!