Saturday, August 2, 2008
Thursday, July 31, 2008
Wednesday, July 30, 2008
We always assumed it was related to one of her seizure meds, Topamax, which has a known side effect of decreased appetite. Unfortunately, this happens to be the most effective medicine she uses, as we found out when we took her off the Topamax for the surgery evaluation/seizure monitoring, and she promptly had 55 seizures in one day. So we were kind of stuck.
What I never really considered was the constant seizure activity she was having could have been making her nauseous. There are many different symptoms that people can suffer related to their seizures, (a list is available here), but because Hollis is nonverbal, the only symptoms we were positive she had was the exhaustion and post-seizure behavior of anger and frustration. Perhaps now, without all the excess electrical activity going on, Hollis's tummy is feeling better.
Tuesday, July 29, 2008
Today was much better than yesterday. Phew! Mom and Hollis went to visit work and it was a much welcomed mental health relief for me, but Hollis just wanted to keep moving in her stroller. So, I didn't get to talk with my friends as much as I'd like, but it sure cheered me up to see them all!
When we came home, Hollis took a nap because all that socializing is very tiring. After her rest , she was back to her mischievous ways, jumping on the bed and horsing around with Katie. She was having such a ball! I am definitely not the type of Mom who doesn't allow jumping on the bed: my theory is, Hollis has enough "can'ts" and "don'ts" in her life, and the fact that she's able to jump on the bed is great in itself, so why stop her?
Monday, July 28, 2008
Then, we had our first intensive physical therapy session. I should mention that Hollis hates any sort of physical therapy, and usually tries to wriggle her way out of it by any means necessary. Today, she pulled out the big guns: scratching, slapping, screaming, throwing things, walking out of the room, or just falling in a heap when asked to do something.Granted, she is very, very tight in her right extremities, much more so than before the surgery, and she is probably feeling defensive because it hurts to stretch, but Mom and the PT really didn't need the beatings we got.
Hollis had a pretty nice chip on her shoulder for the afternoon, but brightened up again later in the day. When we put her to bed tonight though, we ticked her off again: we had to put her wrist brace on, which she hates, and she tries to rip it off with her mouth, cries and generally has a really bad night's rest (as do we). The reason for the brace was to help straighten out her wrist which is in a very bad posture because of the tightness in her arm, but also to keep her from putting her fingers in her mouth and nose: she gave herself a bloody nose worthy of a prizefighter. Don't have any idea why she's doing it, but we're not having any luck keeping the fingers out of there.
As my friend Sue says for days like this, "Good times, good times...". Tomorrow will be a better day.
Sunday, July 27, 2008
Hollis loves to dance, and will do so at any opportunity, and doesn't understand the concept of "upstaging" or "stealing thunder". For instance, last summer, when Hollis was a flower girl in my friend Trina's wedding, we had a hard time keeping her off the dance floor, even during the bride's first dance: we had to physically restrain her. When I told Hollis she'd have to wait her turn for her dance today, she responded with her angry Marge Simpson imitation, which she developed herself, by the way, not through seeing it on television. She finally got her opportunity, and walked around rather than dancing, which I would definitely call a sulk. ; )