Saturday, August 9, 2008

Setting her own program

Hollis has decided that our elliptical machine is her personal jungle gym. She gets on and goes for a ride on the pedals and plays with all the buttons to make the incline go up and down. I've tried to get her to alternate her feet, just to get a nice stretch of her legs, but she always finds a way to avoid it. She is tighter in both legs and her right arm than she was before the surgery, so the stretching is more important than ever, but more difficult too.

Friday, August 8, 2008

One of her greatest nemeses

Hollis isn't crazy about any doctor's appointments, but she has some specific medical professionals she really doesn't like, and she isn't shy about sharing her feelings about them. Today, it was her orthotist. He is such a wonderful guy, and Mom and Dad love chatting with him, but he is the man who makes her braces, and for Hollis, that means torture. He has to take a cast of her foot, which is just like getting a regular cast and then having it cut off to make the mold for her AFO (ankle-foot orthotic). It is not painful at all, but Hollis hates being restrained and having to be still for any reason. So, she squirms, screams, cries, scratches, headbutts and kicks: Dad was the designated "holder" today, and he's feeling a bit sore from the wrestling match, and her orthotist narrowly missed getting his head kicked in, but Mom's quick grab saved the day. I always feel awful about the performance Hollis puts on for this poor man, but he is always gracious about her outbursts and always very sweet to her.

Thursday, August 7, 2008


Despite the weather being a little dreary, Hollis and I went up to Rockport, MA for a walk on the beach. It was about 67 degrees up there, and the water was mighty cold, but she took off in a gallop for the waves anyway. She stuck her tootsies in and we waded for a little while before she got too chilly. There were a fair amount of folks in the water, mostly kids. There's something about being a New Englander that makes you "enjoy" frigid water. I remember going in the ocean until my skin was blue and the water actually felt like needles. I don't indulge in that much pain anymore, but I still take a quick dip now and then - I guess I've gone soft. Hollis definitely has that New England toughness, and would go in the ocean in the middle of January if given an opportunity!

Wednesday, August 6, 2008

The trouble with meds

If things continue to go as well as they are with Hollis's seizures, I am really hoping that we can reduce the number of medications she takes within a year's time. Giving her meds is a nightmare for her and for us. We just stayed in the habit of giving her the sprinkle (capsule contents) or tablet form of the medications, because when she was on the ketogenic diet we couldn't use the liquid form: the carbohydrate content is too high in the syrup bases of most drugs. It also proved easier (initially) to give her the meds on a teaspoon of baby food than what I can recall of giving liquid meds like Tylenol, which she just coughed right back at us. Well, now she puts up such a fight for taking this tiny amount of baby food with the meds, that all of us end up sweating, screaming, crying and usually covered in bananas and Depakote and Topamax sprinkles. She even knows the sound of the pill bottles and tries to hide when she knows they are coming. I have yet to figure out a better method of giving the meds, and we have tried a bunch: sticking it in food (she finds a way to avoid that piece of food), putting it in a syringe with water (sticks to side), using something with sticky texture like peanut butter (makes her gag), etc. My creativity has run out.

Tuesday, August 5, 2008

At the park

We went to visit Wood End Playground tonight, for some climbing, sliding, swinging fun. The park was built by volunteers (including my hubby), and is largely handicapped accessible. It even has a picture communication board for non-verbal kids! It is a fantastic resource for the community, because it serves both the typical kids and kids with special needs. Here's Hollis loving riding in the swing set and going a little bit goofy!

Article in NYT - Epilepsy Surgery

Here's an article in the New York Times with an interview of Hollis's neurosurgeon, Dr. Joseph Madsen. I love that even in the interview, you get a sense of how much of a "teacher" he is: he spent a good deal of time with us, explaining the structure of the brain, what each area does, and the details of how the surgery is performed. We are so fortunate to have people like him on Hollis's medical team.

Monday, August 4, 2008

3 weeks!

We're hesitant to say things like this, because we're a little superstitious, but Hollis hasn't had any seizures for over 3 weeks, since her hemispherectomy! This is as long as she's ever gone without a seizure in her entire life! She is still on her meds, and still has the Vagus Nerve Stimulator running high, so it could be the combination of everything, but we're thrilled with the outcome, any way we get it.

Sunday, August 3, 2008

In Frog Pond, Boston Common

Hollis had a ball at Frog Pond on Boston Common. There were lots of tourists today, in addition to the regular local visitors. It is fun to live near a city where so many different people from all over the world flock to, because you can forget living here that it really is a tourist destination.

Cards from school

Hollis received some beautiful, hand-made cards from her classmates at the Northshore Education Consortium. They have pretty butterflies and flowers, just like our yard! She just lit up when she saw them.

Hollis has been going to school at the Consortium since she was 3 years old. The school specializes in intensive services for children with multiple special needs. I give all the folks at the Consortium a lot of credit for what Hollis is able to do today. They work hard with kids that have the most difficult challenges, and they do it with sensitivity, dedication and love.