November 29, 2009

The end of a busy Thanksgiving weekend. We spent time with both our extended families, and Grace loves every second of that. She really loves spending time with her cousins, and I hope that always stays that way. They are good to her and look after her as well.

We've had to make a little change in the past couple weeks--taking Grace off valproic acid and carnitine. She developed a very bad rash over her whole body, and after a couple weeks of trying different things, her pediatrician decided that the rash was coming from the medicine (and her Iowa City specialist agreed). We are really disappointed, because we felt that the medicine was having a positive effect--Grace seemed to have more energy, a better appetite, and some increased strength. We may try again when the rash is completely gone, but at this point we're not sure. While we want to try everything we can for her, we don't want her to be absolutely miserable--and the rash was getting to that point.

November 15, 2009

Noon on Sunday, and Grace and Michelle just left to shop for new shoes. Grace is still definitely on the small side for her age, but she has grown quite a bit the past six months or so. I'm not sure, but today I think they're shopping for some dress shoes. Grace is no longer wearing the braces that cover her entire legs, but she still does wear her AFO's, which stand for ankle-foot-orthotics and basically go just above her ankles. She has to wear special shoes with her braces, but she wears normal shoes on the occasions when we don't make her wear her braces (which isn't very often).

Grace went to her first Briar Cliff basketball game of the year yesterday, and rumor has it she had a great time. The Flanagan Center at Briar Cliff is a great place for her to be in her Dani, because there is a lot of open space and multiple floors to drive around on during the game. She continued her tradition that she started last year, coming into the locker room with me after the game and giving all the guys 5's. She loves doing that, the guys love seeing her, and I love bringing her in there with me. We don't do it when we lose, so there is added pressure to win the games she's at!

November 4, 2009

Busy past couple weeks. Grace had a blast on Halloween. She made a mid-day change, switching from wanting to be Cinderella to wanting to be a cheerleader. So she was Cinderella for her school party, but a cheerleader for actual trick-or-treating. It worked out really well in her Dani, and she flat out loved it.

We think Grace is doing pretty well on the Valproic Acid. We feel like she might be a little stronger and slighly more energetic late in the day, which are both positives. This all might be in our minds, but it does seem like she can stand a little more than before we started the treatments. We've continued to get her blood tested and haven't seen any negative results from that, so we'll keep going.