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!

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.

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.

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!

Joining in the toast

Hollis really enjoyed Christmas this year, and was even able to sit at the table to eat Christmas dinner. She toasted the holiday with us, using her own champagne flute. This, of course, was hilarious. We went to celebrate with Grandma and Grandpa, and had a lot of fun, and she loved opening gifts (a new thing). It really was a remarkable Christmas in many ways, and we have certainly been given the biggest gift we could ever hope for!

Santa's Little Helper

Hollis helped Santa pick out her gifts today, once we were able to escape the house after our little snowstorm (a foot isn't so bad, is it?). We let her play with the ones she picked herself, and Santa has a couple more waiting under the tree for her for Christmas Day. Funny enough, most of the things she chose were toys we had already had at some point, and were dead from years of love. The kid knows what she likes.

Not a snow bunny

Hollis is a California girl in her heart. She was born there, and only lived there nine months before we moved back to Massachusetts, but I'm convinced she remembers how pleasant the climate was compared to here. The kid didn't even wear socks until we moved, nevermind hats, coats, mittens, etc.

We were outside yesterday, walking from a parking garage to our destination, and it was lightly snowing: very lightly. Hollis had a couple flakes fly in her face and she was ready to turn around and go back to the car. Needless to say, I don't expect to take her sledding anytime soon.

Squishing Grandparents is fun!

Whether it's squishing Gram with her body weight, or squeezing Dziadzi's nose until it bruises, Hollis thinks grandparent abuse is fun!

Mohawks in the mist

There's something so irrestible about making a mohawk in the tub, isn't there? Her hair is coming in really well now, and we'll probably be getting a new haircut to make her little pixie-fauxhawk again. We went to Revere Beach yesterday and walked around in the mist: there was a cold front coming through, so the water was very choppy and whacking the sea wall as we drove down through Lynn. Doesn't matter what the weather is: we're beach people and we'll go anytime!

Halloween

For the first time, Hollis actually enjoyed Halloween. She was interested in going around the neighborhood (3 houses) and being able to pick out a treat and put it in a bag. And, of course, the whole walking outside at night is pretty cool. These pictures are from her school party and one of their class therapy dog Isaac, who clearly is up for anything.

Good day for a hike

We all went for a little hike at the Ispwich River Audubon reservation today. Hollis managed to get about a 1/4 mile in before she tired out, so we took it slow on the way back up the hill. In the end, it involved a bit of carrying her, no easy feat at 70 pounds!

Way too much fun!

Hollis went to Newburyport this weekend and played on the jungle gym in town, shopped in a toy store, and strolled along the docks, looking at all the boats lolling around. She made a dash for the Harbormaster's gangway, because clearly, she is master of the harbor, but we managed to wrestle her away before she caused too much mischief. We had a very difficult time getting her away from the water (no surprise), and had to strap her into her stroller and run full speed back to the car so she couldn't make a break for it. Once she sets her mind to something, it is hard to change it.

A medley for your enjoyment

Hollis has a great memory for songs, and can even sing along with songs she's not really familiar with - she just has that musical ear. This always amazes me, because she only has a vocabulary of about six words, but she has a musical dictionary in the hundreds! Of course, she's no Ella Fitzgerald, but she carries a tune and can "scat" just like her!

Whirly girl

We went to the Topsfield Fair today, as we do every October, and this was the first time Hollis really could enjoy almost everything there! For some reason, she really likes chickens, so we visited the poultry shed, where she made friends with a Bantam chicken and a sort of Lilliputian duck called a "Gray Call". After this, she had fried dough and a corn dog, and loved both. In past years, she had been either on the ketogenic or low glycemic index diet for her seizures, or was not eating due to her meds, so this was her opportunity to try the treats served up at carnivals all over the U.S.

Even after eating these deliciously starch-laden greasy things, she was up for a good twist on the Tilt-a-whirl. Dad and Hollis went on first, and she screamed with delight the whole time, until the ride ended and she signed "more" desperately. Mom took the next trip, and it seemed like I ended up with the whirliest of the cars: I walked off very dizzy and feeling car sick. Hollis, ever the adventurer, still wanted more, but we thought we'd better cool it on the "pukey" rides for one go, and Dad took her on a kiddie roller coaster. She loved that one too, and screamed as it went down its dinky little hill and around its tiny curves. When she got off, we thought we might have her take it easy for a minute, but alas, the Tilt-a-whirl was in sight, so she took off for that. Dad took her again (thank you!), and they spun madly around and around. She could have kept it up all day, but parents' tolerance for the dizzy rides is a bit more limited than an eight year old's.

Role Reversal

Hollis was pushing Katie around today, literally. She didn't want to ride her trike, so she thought it might be fun to make Katie ride it. Then she put Katie in her stroller and pushed her around in that for awhile too, laughing hysterically the whole time. Hollis is about 4 inches shy of Katie's height, and when she gets there, we're going to be in trouble! At the rate she's going, she'll be pushing around Mom and Dad (at 5'10"and 6'3") in just a couple years!

The Doggy

It's been a little longer than I'd like between my posts, but my hard drive died and I was waiting for the replacement part. I fixed it and we're back in business! A couple of weeks ago Katie brought over her new boxer puppy, Romy, to play with Hollis. Hollis loves her school's therapy dog, Isaac, an old yellow lab, and we have 2 cats that she loves to chase around. I should also add that around this time last year, I tried to get a puppy for Hollis and she was a bit overwhelmed by the whole thing. I thought she might have changed her opinion since the surgery, since she has seemed a bit more tolerant of stimuli, but apparently, she reserves the same opinion regarding puppies as she always had: a little too much when close, but OK when far away. See picture below for reference:

Hollis has been "helping" with this post. She is sitting on my lap while I'm typing, adding some of her own thoughts including "abnm" and "3nmee;". She also stole my coffee, and chugged some down. A picture of the evidence follows. A glimpse of the rare Mom bird, with wet hair even - stunning! ; )

Out to lunch

We took a trip up to Maine this weekend to get some of that good "Fall" air that comes earlier to the good folks up North. Hollis enjoyed the ride up, but was really excited to get out and walk around too. We did something with her we haven't done a many years: we went into a restaurant to sit down and eat. Granted, it was a glorified pizza joint, but we did actually have to sit and wait for our food and eat it at the table. We haven't attempted this for a long time because she would always scream, throw things and be a general menace to society: and that was just in the first 5 minutes!

She actually was able to sit still for about 10 minutes before she had to get up and walk around a bit, but she didn't make a big fuss about it. When the food finally was ready, we took it outside on their deck to eat it. She enjoyed the salad, the french fries and cheesesteak sub, and the whole scene only fell apart toward the end when took Daddy's hat and threw it into some rosebushes. Then the goofball came out: she started letting the food fall out of her mouth and she thought this was hilarious. We left soon after this little matinee performance.