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!

Another one...

Another tonic-clonic seizure today. Same scenario: in her sleep, wakes her up, makes her very cranky and she's whipped for the rest of the day. We're seeing the neuro in about a week and a half, so we'll see where we go from here. That's 2 in about a one month stretch. I'm not particularly happy about them getting closer together. One of her neurologists always said that seizures have a way of training the brain to have more seizures: like they find a path to make the bad connection, and they keep going there, and creating more ways to get there. That's what I'm nervous about. This coming appointment should be very interesting.

Special Olympics Passion Plunge

My husband was one of a couple hundred nuts who jumped into the Atlantic at Revere Beach today, to support the Special Olympics. His team, the "r'EMARC'ables", (Eastern Middlesex ARC), raised over $12,000. There were kids from Revere High School, Tufts Women's Rugby, Worcester Polytechnic Institute and many other groups. It was 25 degrees today, with a water temp of 38 degrees. Damien's response after he came out of the water was, "It was fine until my head went under; I think I drank a gallon of Revere Beach water", from the shock. There was enough snow and ice on the beach that they actually had to truck sand onto the beach so folks wouldn't slip. It's been a tough winter!

Growing out phase

We're working with the hair growing out phase. Hollis only had one side of her head shaved for her surgery, so it has been growing in unevenly, but we've been cutting the unshaved side to make for some kind of style since the summer. I've decided it's easier to have her hair longer, one, because she hates having her hair cut, and two, she has cowlicks that are impossible to tame. She used to be fine wearing ponytails and barrettes when her hair was long, but now she's decided she can't stand them. Witness the attempt of a putting a headband on her, and the subsequent goofiness that followed.

Second seizure since surgery

I guess it isn't too bad to have only had 2 seizures since the surgery on July 11th, but I was really hoping that first one back in September was just a little "rewiring" in the healing process. Hollis had a tonic-clonic in her sleep today, during a nap, and of course, it really upset her, and made her even more tired. She is probably getting a cold, since I've had a pretty bad one for a week, and she also (how do I say this delicately?) has a "backup in her plumbing". I guess it's "reasonable" to have a seizure once every 3-4 months, considering we were at 10-12 a day before the surgery, but still, any seizures really stink.

Caramel Apple Yum

Just a quick post of Hollis enjoying a treat of Caramel Apple Spiced cider from Starbucks. She's looking so grown up these days!