Tears

Saturday Hollis had her first EEG since her surgery. EEG's are akin to torture for her: she has always had sensory issues with her head, and having all those leads attached just makes life hell. Even the marks that the tech writes on her scalp to know where to attach the leads is horrifying for her. This kid could have her blood drawn every hour and be much more content than having to go through EEGs.

It was during the application of the leads that Hollis cried for the first time in months. It made me think how often she used to cry before the surgery. She would have seizures that would result in injury, or would last a very long time, or come in clusters that wouldn't break for over an hour, and many of those times she would cry. She would also cry a lot more in fear, anticipation of something she didn't like, or just because she couldn't express herself any other way. What a gift for her not to have to cry as often anymore!

Riding in style

We went to celebrate Hollis's birthday with Damien's folks this weekend, and for a treat, Damien took Hollis for a quick ride around their neighborhood in Grandma's convertible. It was cold outside, but Hollis loved being in the front seat and even tried to help Daddy shift the car (yikes!). She had such a ball, that when I went to get her out of the car, she signed "more" desperately, and tried to latch her seat belt back on when I took it off. She looked dejected when we put her back in our regular car, a minivan. Is there such a thing as a convertible minivan: if so, I think we might be looking for one!

Happy Birthday!

Hollis turned 9 this week! I can't believe what a big girl she is...sigh. Time just goes by too fast!

Enjoying the nice weather

It's been a tough winter here, but we finally had a day of mild temperatures to break up the monotony. I believe just about everyone in the state was outside, just to remember what it's like not to have to wear a parka, hat and gloves.

We went to the beach to walk around, and we wore Hollis out, poor girl! She had fun slopping through the mud and stepping in puddles. We had to take a couple of breaks to let her rest. On one break, she sat next to beautiful Keeshond, Nico, and he was very friendly with her, but Hollis could have cared less about him!

Bowling at home

The family gift for Hollis's birthday was a Wii. (It's a little early, but who's counting?) She loves the bowling and tennis games. We also got the Wii Music game, which is a little harder for her to understand, but when she hears it play "Twinkle, Twinkle" she sings along.

Shhhhhhh!

We went to the Mary Baker Eddie Christian Science Library Mapparium today. It is a remarkable place, with stunning acoustics that allow you to hear whispers from end to end, and to hear yourself in surround sound if you stand in the center of the globe. Hollis was a little scared at first because she's a bit claustrophobic, and the sounds were everywhere (even the sound of paper crinkling), but once they started the demonstration which includes turning the lights down and lighting up parts of the globe, she settled down. She was especially excited when a part of the recording of Dr. Martin Luther King's "I Have a Dream" speech was played: she did a little dance while he spoke. He was always one of my heroes growing up, so I was very proud.

6 month follow up

We had our 6 month post surgery follow up (OK, a little bit later than 6 months) with Hollis's neurologist in Children's Hospital. He was pleased with the fact she only had 3 seizures in the time since the surgery, and we are too, we just wanted to know if we had to be concerned about having any more surgery: thankfully, he said we're done. We are making some adjustments to her meds, because she's gained about 30 pounds since September - that's largely due to another one of her meds, notorious for weight gain.

This week we also had her Rehab Physician (a.k.a. Physiatrist) appointment, to assess her neuro-muscular situation. Her gait is definitely worse than what it was prior to the brain surgery, but not by a lot. She's getting a new adaptive "girdle" to help give her right leg some support and a bit of a twist, because right now, it points outward about 90 degrees. Should be interesting to see how that works!