Consumerism blues

Hollis and I went to the supermarket yesterday to pick up a few things. I took her in her wheelchair stroller, and she was happy enough through one aisle, but she then decided to get out and walk behind and push it herself - very cute. Then things went a bit pear-shaped: she took off full speed, headed toward the toy aisle. I should mention my kid has never been the type to whine and complain about getting toys or goodies in any store, she just kind of relied on us to bring stuff into the house that she seemed to like.

I have counted myself lucky among the poor parents I would see in the stores with their kids throwing tantrums over Barbie, Bratz and Webkins: I thought we would somehow escape this natural part of growing up American. Alas, Hollis has finally realized she has consumer power, and she flexed that muscle at Stop and Shop. She went into the aisle and immediately spotted Dora and Elmo, her two favorite characters. Hollis then frantically waved her arms in a gesture suggesting she wanted everything in the displays while making her "I want" sound. She then picked up about 5 sets of Elmo plates and handed them to me, and went quickly over to a Dora telephone toy and tried to hand that to me too. I told her we weren't going to buy them, because we had plenty of stuff at home, and she took off again. She ran to the refrigerator case, and sat down in it as her protest. I finally was able to stuff her into her stroller again, but ended up leaving with far fewer things than I needed to get, but successfully managed not to cave into the tantrum - this time.

Physical Therapy

Hollis had PT again today, and she actually had a pretty good time. The key is to have Mom out of the room: this was an old trick we used to use back when she was seeing her Physical Therapist, Mary, regularly. We had to stop when Medicaid decided that Hollis didn't need private PT anymore since she had it through school. (That's a story for another time...grrrrrrr!)

Mary has been working with Hollis since she was about 2 years old, and she has helped Hollis achieve so much! Back when she was a toddler, we were told by a few different parties that it would be unlikely that Hollis would walk without assistance (assistance = walker, crutches, etc.). So, we just worked with what she was able to do, and tried to increase her strength and her flexibility as much as possible. Well, despite how much she really didn't like to do the hard work of PT, this kid ended up walking on her own at the age of four! (See picture of her first steps below). Her pediatrician has said how much of a miracle it is that she can walk by herself, considering how her stroke damaged so much of the motor strip for her right side. Hollis is such a determined (perhaps stubborn is a better choice) kid, and Mary has been a key player in helping us pull out Hollis's full potential.

Out and about

On Saturday, we went to a beautiful garden in Wellesley kept by the Mass Horticultural Society. They had test gardens, a rhododendron garden, herb and medicinal garden and a garden just for kids to play in. Hollis walked all over the place, showing some of her old stamina. She waved to a bunch of people as they walked by, and she especially loved the guy making the kettle corn. She went into a little tree house and watched as several kids went up and down the ladder. After all that excitement, she came home and crashed for 2 hours.

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.

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.

Rockport

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!

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.