Thursday, December 31, 2009

Snow! It didn't pack well for a snowman, but it was perfect for snow angels. The dogs liked it, too. Watching them try to jump over 20 inches of powder was great fun. We made our annual trek up to Delaware for Christmas, stopping at Lake Mattamuskeet on the way to marvel at the thousands of tundra swans, geese, loons and other birds that spend the winter on this 40,000 acre lake each year. We came home on Sunday, and have spent this week enjoying the opportunity to sleep in, watch movies (Kate received the National Parks DVD set for Christmas) and play games. Tim and I took Kate to therapy yesterday, where Tim met Kyle Covington, her new physical therapist. Kevin Caves, the director of the Rehabilitation Engineering Research Center at Duke, watched Kate use a walker and tried to figure out how students in his biotechnology engineering class could slow it down. Many times Kate moves too fast for her own good, and what she needs is a device that senses when the walker is going too quickly and applies some counter force. He wasn't at all sure that they could come up with a workable walker, but if they are willing to give it a try I will be happy to make as many trips out to Durham as they need. The trickiest part of Kate's injury is her lack of balance. She can walk with crutches as long as I am in front of her making sure she doesn't step ahead of her crutch or put it in the wrong position. She can use a walker as long as someone is right there to apply counter force and help her turn. I know I won't be around forever, and I am afraid that the people who help her later in life will find it easier to have her in a wheelchair all day. Wheelchairs obviously have lots of advantages. They can increase independence and help people get around faster. But when you sit around in one all day your muscles atrophy and you don't get any exercise. The people I know who use wheelchairs exclusively get so weak that they eventually need help getting in and out of it. If they gain weight and lose muscle tone they have to use a motorized lift to get into bed, or into the shower. So I guess my New Year's resolution will be to continue to work on more physical independence. I'd better get Kate moving!

Sunday, October 25, 2009

The real therapist

Kate had her first appointment with a new physical therapist last week. At 21, she has aged out of the pediatrics department at Lenox Baker Children's Hospital in Durham, where she landed after she was hurt. Laura Case was the therapist who agreed to take Kate on after she was released as an outpatient. I don't know if she knew what she was in for, but I knew why we wanted her. She was, and is, the most dedicated, creative and empathetic therapist Kate has ever had.

At a time when doctors and therapists thought patients made the most recovery from a brain injury in the first six months, Laura gave us hope. She felt strongly that recovery continued indefinitely -- as long as people worked at getting better. At a time when others predicted Kate's balance disorder would confine her to a wheelchair, Laura got Kate to sit up on her own for two seconds, then worked on doubling that time over and over again.

Getting down on her hands and knees, she showed Kate how to crawl. Kate had a stubborn streak, and more than once she showed up for physical therapy complaining about how tired she was. But Laura would nod understandingly and ask Kate if she wanted to go on strike. Then she would make a banner: "On Strike, Gone Fishing" and have Kate wear it as she used a walker to laboriously make her way up and down the hall. Laura can turn even the hardest exercises into a game. When Kate needed to strengthen her stomach muscles, Laura would sit her atop a huge therapy ball, hold onto her legs and then send her down backwards, asking her to come back up with a surprise. Kate would invariable grab a "smelly sock" from the floor and pop back up to present Laura with her "gift," which she would accept with just the right amount of nose wrinkling and laughter.

When she wasn't working at the hospital she worked outside it. She used vacation time to go to Vietnam, where she helped children who had no access to physical therapy. She met us at one of Kate's horseback riding therapies to make sure Kate was getting the most out of the program. She also earned a doctorate in physical therapy. The last few years she has asked Kate to help her teach the students who attend Duke's three-year doctoral physical therapy program. Kate, of course, is thrilled to be the center of attention as Laura shows her students how to stretch muscles and problem solve.

Over the years Laura has taught me more than she will ever know -- giving me the confidence to help Kate carry on her journey to greater independence. Posterior or anterior tibialis? I probably will never pass an anatomy class. But the wealth of information Laura shared -- sometimes repeatedly -- was given with grace and good humor. We will miss her, but Kate's in good hands. Her new therapist was one of Laura's doctoral students a few years ago.

Wednesday, September 30, 2009

Biking nirvana

Sometimes you gotta take a break from physical therapy and helping Kate study for that environmental science class.
Sometimes you have to get on a bike.
My sister and I rode the first day of Cycle North Carolina's ride across the state on Sunday.
That's us on the Blue Ridge Parkway, just outside Blowing Rock, when we were still relatively fresh.
While we were huffing and puffing up the steeper ascents, Kate, Kirsten and Tim drove out to Linville Falls. The weather, which was dismally wet Saturday, cleared out beautifully for the ride.
One of these years I'm going to ride the whole week. But Tim had to get back to work Monday, and Kate's class met Tuesday. We're trying to figure out how to salvage the class. She failed the first big test, and the next one will have even more material covered even faster.

Saturday, September 5, 2009


OK, so blogs are supposed to be updated more than once a month. It's not like nothing's happened, but at the end of what are typically long days I'd rather veg out and read other people's blogs than work on my own. So from now on I'll sneak some time earlier in the day and post something -- anything.
Some interesting Independence kind of stuff happened in August. Like the day that Kate's brother Joe walked in the house and Kate called for him to come look. She was standing next to the couch, holding on so she wouldn't fall and have to get 12 stitches in her chin. Not that we have ever had to rush her to the emergency room before...
We also visited someone who has cerebral palsy and lives with two roommates in her own house. There's 24-hour care because all three young women need additional help. Now we are wondering if we could essentially create a small group home for Kate and a couple of friends.
Kate also started her first class at Wake Tech. She has classmates, an instructor, and a book that is weighed down with so many multi-syllable words that it's easy to sprain your tongue when you read it.
This is Labor Day weekend, and Kate wanted to know if she could celebrate by laying off the exercises for a day! I think that's a great idea.

Wednesday, August 5, 2009

Happy 21st, Kate Marie!

Tomorrow is your birthday, and have you come a long way! Fourteen years ago you came home from the hospital for a few hours to celebrate turning seven. You couldn't have cake. If there had been a cake you wouldn't have been able to blow out the candles. A feeding tube took care of breakfast, lunch and dinner; a tube in your trachea kept you from being able to talk, let alone join in singing Happy Birthday to yourself!
In the past 14 years you have accomplished many goals: Learning to sit up again; getting rid of those tubes; standing with crutches. You graduated from high school, learning that it is possible to have your cake and eat it, too. You just have to keep trying, and trying, and trying some more.
So this is a blog that will help you set sights on a new goal -- independence. Where do you want to live? What do you want to do with your life, your talents and perspectives? If you don't know yet, that's ok. Life's a journey; let's figure out where the road will lead.