Coincidence?

As I've mentioned in some previous posts, Hollis has been eating extremely well since the week after the surgery. Eating has been a huge problem for her since about this time last year. She suddenly decided to stop eating altogether for about 2 weeks in July 2007, and when we finally were able to get her to resume, she would only eat a few items: pepperoni and sour cream and onion potato chips were her staples. Because she ate so little and because it had almost no nutritional value, she lost about 10 pounds in a month's time, which was equivalent to 20% of her starting weight - and, she was not a chubby kid to start with. She also lost about half her hair.

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.

Back to her old tricks

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?

Venting a bit

Today was just not a whole lot of fun. First, we woke up to no electricity (and lasted for about 12 hours), which meant no warm breakfast for Hollis, and let's just say she isn't much of a cereal and milk sort of kid. That just got us off on the wrong foot.

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.

Outing to Salem

We decided to take a break from pools/beaches today, and went up to Salem, MA, with the intention of going to the Peabody Essex Museum, one of Hollis's favorite spots to walk. When we got to Salem, we found some sort of festival on the common, so we decided to check it out. It was "Culture Day", and it appeared to be a combination of whatever didn't fit into other categories, plus a little, "there must be something on the common on a weekend - what should we do?". Upon our arrival, there was a dance troupe called "Sisters in Dance", and they were belly-dancing, which Hollis thought she should be doing too.

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. ; )

Back at the pool

We took advantage of the nice weather today and went to the wading pool again. I believe that the entire population of the North Shore also had the same idea, if they weren't going to the beach instead! It was a bit crowded, but Hollis loved it anyway, especially dodging all the little kids who were swimming around her feet like fish. This girl is a total water baby, much like her Mom, and would probably spend every day in a pool or at the beach (even in the winter)! She is still easy to tire, and we only spent about 20 minutes before she was worn out and told us she needed to go.

Dancing with Daddy

Hollis is starting to get some of her copious energy back. She only took one two hour nap today, and her headaches seem to be further apart. We were able to switch from Tylenol with Codeine to plain Tylenol, and that probably helped with the sleepiness too. This switch also made her less itchy, one of the common side effects of many of the opiate meds like Codeine. She was goofing around with Daddy a lot today, with lots of giggling, and at the end of the day, we restarted our nighttime tradition of dancing before bedtime.

Eating like a horse!

Hollis is making up for lost time in her eating, which is a very good thing, because she is too skinny to start with. She inhaled 2 donuts this morning, followed by pepperoni, and then for lunch, she ate half of Dad's cheesesteak sub. The best, though, was the garlic and olive oil spaghetti, which she fed herself. Here's a video of her chowing down.