Fond farewell to Sarah

Yesterday was the last day of therapy in the program here. It was a day to celebrate, and that we did. It was also a bittersweet day because we had to say goodbye to Sarah, who has worked so expertly and diligiently with Ella for the past month. We've gotten to be real friends with Sarah and we're sure going to miss her. We've weathered some storms together and we've had many victories. As I'm writing this, Ella just came up and planted a big kiss on Sarah's picture. We bade her a fond farewell yesterday, and we will never forget the wonderful gift she gave us with her professional expertise and her big heart. To cheer us up, we think of the next lucky child who will get to know Sarah and whose life will be changed by her great skill.

Daddy's back!

Thursday morning might as well have been Christmas. I've never seen Ella so happy and beside herself as when Greg walked in the front door. She didn't hesitate for a moment with big hugs and lots of kisses. She looked back and forth from Greg to his picture a few times with a big smile. They're inseparable now. She says "Daddy," then looks at me and says "Mommy", and then she says "both." We both missed Greg so much, and it's been a wonderful reunion for the three of us.

Pet therapy

We had a visit from Labrador retriever Molly this week and her great handler, Lisa. Molly is trained to offer pet therapy, which as far as I can tell means letting little kids do anything they please without getting annoyed.














Ella covered Molly's head with a towel to play peek-a-boo, piled toys on top of Molly, and put Mardis Gras beads around her neck, all with her left hand. She also fed Molly treats, took her for a walk around the apartment, and brushed her, so I guess there was something in it for Molly. Molly came to us through a non-profit group called Hand-in-Paw. She and Lisa were real professionals and a major bright spot in our program here.

Thanks to Lisa and Molly for a very fun morning!

Studio portraits

Here are some of the studio portraits we had taken this week. It's the first time we've gone to a cheapy portrait studio and now we're hooked. Ella loved sitting on the padded table which she decided was a "bed."

Pet Shop Girls

Every Thursday after Ella's nap we visit the local pet shop, Wags to Riches. The staff there has been so sweet to us. They've gotten to know Ella and let her play with everything in the store, including the kittens, puppies, rabbits, and pot belly pigs. It's been a fun weekly ritual, and we'll miss our visits with them!

Portrait

There isn't a lot of news to report, but I wanted to share this photo of Ella. We're planning to have a little portrait made tomorrow and we staged this to see if we liked the outfit. She hasn't worn tights since her first birthday and she was pretty excited to try them. I like the photo because it really looks like her, it's honest. She looks older than I think of her. Her left hand is in a bit of a fist which is still a tendency even though she has a good range of motion. It shows her little face not smiling or performing, just happy.

Therapy was a bit of a challenge today. It's a big change after the last three weeks, and we're all adjusting.

Greg is flying down on Thursday morning, only a day and a half away. We can't wait to see him and be home in time for Christmas Eve.

Bye bye, cast

The cast is off. Our two-handed girl is back. Cast removal wasn't traumatic. Ella's prefering to use her right hand, but not ignoring her left. She used her left hand to eat supper tonight, and uses it to pick up objects that are on her left side. She's getting a lot of sensory input on her right side, so we're letting her get accustomed to that again and will launch into bilateral therapy tomorrow. It will be a challenging week as Sarah helps Ella integrate new skills with old, and we make plans for how to help her continue exercising her new abilities at home. This photo, or rather what it represents, was worth the whole cost of admission.

Lyn's visit

We were treated to one final visitor this weekend, our dear friend Lyn. Here's a picture of Lyn and Ella with an iron statue at Aldridge Gardens. Ella was glancing over to the other statue, trying to decide where she'd rather be. We heard quite a bit of "bunny" and "ride turtle" while we were there. The weather was beautiful.

We also had a nice hike at Moss Rock Preserve on Saturday, the highlight of which was Lyn finding her Mont Blanc pen after it disappeared during some activities designed to entertain Ella, who has gotten a little bored with hiking.

We had many laughs and a wonderful, relaxing time with Lyn.

It's hard to believe that we won't have any more visitors and that we'll be at home in less than a week. Our friends and family who have made the trip to Birmingham have given us so many great memories and have helped make this December really feel like a holiday season.

Clinic information

The clinic has asked that I post their contact information for parents who may be interested in the program. Here's a link to the constraint therapy brochure from the Pediatric Neuromotor Research Clinic. Or visit the UAB Civitan-Sparks Clinics web site. The clinic is located in downtown Birmingham, Alabama and their toll-free phone number is (800) 822-2472 (choose option 8).

Another good source of information is the Children's Hemiplegia and Stroke Association.

Neurology 101

On Tuesday, Ella's cast was removed for the second time. It was a far different experience than the first. She knew what was happening right away and didn't want to take it off. Eventually, she relaxed and I put her in the bath. We were eager to see whether she'd revert to using her dominant hand like she had the week before. Happily, she didn't. In fact, she played in the bath for 20 minutes without using her right hand at all. After the bath, she worked with Sarah, continuing to play with puzzles and other toys with her left hand as she's done for the past two weeks. Sarah encouraged her to try some activities with two hands, like drinking from a cup, which she did. (That sight brought tears to my eyes.) But she showed a definite preference for using her affected hand, out of habit.

That's a big feature of hemiparesis; much of the impairment is caused by "learned non-use." When it's harder for a child to use one hand than the other, non-use becomes a habit that accentuates the impairment. It was amazing to see that Ella had learned a totally new habit in just two weeks, and it seemed to confirm what I've been noticing -- that control of her left hand doesn't require as much concentration as it did before. It's become more natural and spontaneous, and gives us hope that the changes in her brain that are allowing her to function so well may be permanent.

Here's a little neurology lesson, so if you're not interested in the details, feel free to skip this part. I hope the information is valuable to other people dealing with hemiparesis, and interesting to those who are curious about the brain. I also hope I get it right, and will count on Dr. DeLuca to correct me if I don't.

While Ella continued therapy without the cast, Stephanie DeLuca, the Co-Director of the Sparks Clinic, helped me understand what we believe is happening in Ella's brain. As I watched Ella performing tasks with her left hand, I noticed that her right hand was mimicking the movements of her left. I knew that all children are born with "associated movements," and these movements can persist even into adulthood. In kids with hemiparesis, they can be very strong. Before we came to Birmingham, Ella's affected hand mirrored the movements of her dominant hand very closely. It was difficult for her to remove an object that we placed in her left hand, because when her right hand gripped the object, her left hand gripped harder, too. She had no ability to open her left hand while her right hand was clasping. This is caused by an "overflow" of brain activity from one hemisphere to the other. It doesn't go away completely even in typically developing children. (A friend of mine who has completed firearms training explained that in order to pass his test, he had to demonstrate that he could grip something tightly with one hand without accidentally pulling the trigger with the other.) Since we can't see what Ella is doing with her dominant hand under the cast, I was concerned that she might be learning to control her left hand by consciously controlling her right. I worried that this might be the only way for her to learn to use her left hand, by "remote controlling" it, so to speak. When the cast came off and I saw her dominant hand moving in sync with her her left, it appeared to confirm my fears. Fortunately, Dr. DeLuca was there to explain that it doesn't work that way. She explained that Ella has not yet reached a point where her brain has completely "separated out" her right arm from her left arm. She still has overflow that is fairly age-appropriate. Knowing what we do about neuro-development, Dr. DeLuca can tell us with certainty that new pathways on the right side of Ella's brain are controlling her left hand, rather than some clever use of the left hemisphere. Dr. DeLuca also explained that Ella's associated movements will greatly diminish, and that when that happens, i.e. when her arms "separate out," she will have little function in her left hand except what she has learned through developing these new pathways in her brain. Since the brain is so receptive to this type of development between the ages of 1-3, this is a crucial time for us to be here. It was all very fascinating, and I've appreciated the time taken by Sarah and Dr. DeLuca to help us understand it so we can use it to shape the ways we continue Ella's therapy at home.

That's the end of the neurology lesson. Ella's cast comes off for good on Monday. She'll have four days of bilateral (two-handed) therapy before we go home, in an effort to integrate the abilities of both hands. It will be an important week for us to learn how to help her do this. We'll be choosing strategies, like reserving certain foods or snacks for eating with her left hand to keep it limber and functional. We can designate left-hand-only toys in addition to her regular toys. We'll make sure she keeps having the carefree fun that all kids should have, and not a lifestyle dominated by therapy. It's our mission to build activities into every day that feel natural while encouraging her to exercise her left hand.

We couldn't be happier with the success so far. At the same time, we're starting to understand the continued effort required to maintain the success. This program is not magic. It's not a cure. The gains aren't maintained without continuing therapy, vigilance, and consistency from all of us. Until Ella's old enough to decide that she wants to make the most of these abilities, it's up to us to keep her from losing them, and to keep pushing the boundaries of what she can do. Today, she can pick up marbles with her left thumb and index finger. She can eat raspberries the same way. She can scribble with markers, push buttons and open drawers with her left hand. She's unlearned the non-use. She's developed more motor control than we'd dared to hope for. On Christmas Eve, we will take the energy and excitement of Birmingham home with us. In a way, the end of this program feels more like a beginning. This "event" that we planned for is starting to emerge as a milestone on a long continuum that is looking brighter and more hopeful than ever before.

Mom and Dad's visit

Just when I thought Ella couldn't have any more fun than to receive Sarah's dedicated attention for 30 hours a week, my parents arrived. From the moment they appeared on the scene, Ella was in her glory, literally falling on the floor with joy. She didn't let them out of her sight for a moment, and loved showing off her new skills. This is one of the rare photos of me holding Ella on the weekend. Mostly, I was in the background while she cuddled and played with my folks. It was a great time.

On Saturday, we visited Vulcan -- the world's largest cast-iron statue, in the shape of the Roman god of fire and forge. Vulcan was created for the 1904 World's Fair and represents Birmingham's iron and steel roots. Vulcan's elevator wasn't working so we climbed the stairs, which was much more rewarding and prepared us for the chilly wind on the observation deck.

From the tower, we could see the sprawling UAB campus, one of the country's great medical complexes with building after building dedicated to research and clinical practice. Afterward, we toured downtown Birmingham and walked around Five Points South, home to some very nice restaurants that we won't be sampling (alas, it's not vacation), and a children's fountain with iron animals.

Iron statues turn up unexpectedly all around town. On Sunday, we went to Aldridge Botanical Gardens, about 2 miles from our apartment. Ella sat on this turtle with my dad and we took this photo just before sunset. We were the only people in the park, and we hiked around the 7-acre lake in peace and quiet except for Ella reminding us that there was water available and she would like to be throwing in some stones. At the end of the hike she did throw stones, and pinecones, and magnolia pods, and pine needles. I could watch her do this all day, picking up objects very naturally with her left hand, manipulating them, throwing them. It was quite a sight for my parents, who hadn't seen the daily progress over the last two weeks and were suddenly presented with Ella, doing things with her left hand that would have been impossible during our last visit on Thanksgiving.

My parents were still thawing out from conditions in Pennsylvania, so we took advantage of the weather on Sunday with a long hike at Moss Rock Preserve. Dad relieved me of the backpack halfway through, and Ella promptly fell asleep, slumping over to one side and creating a nice uneven weight that I'll bet he's feeling today. Mom shared her love of nature and botanical knowledge with us, pointing out ferns, nuts and berries that I'd overlooked on previous visits, and adding a nice new dimension to a place I've come to love. The Preserve is stunning, and it's fun to show it off to our visitors.

The only misadventures of the weekend involved peanuts. On Saturday, we tried to visit the Peanut Depot, a destination for tourists as well as locals, where peanuts are cooked on premise with old-fashioned equipment. The Depot was mysteriously closed and all we were able to do was peer in and see scales and roasters that looked like they could produce some very tasty peanuts. We felt a little better when a local man was equally perplexed at the closure. Determined to have a southern experience, we bought a couple pounds of raw, in-shell peanuts sold at the grocery store. We boiled half the batch, and roasted the other half as an experiment with recipes we'd found. It was all pretty much a disaster with strange purple-ish, spongy nuts that seemed to be daring us to try them. Even Ella was doubtful, but she does pronounce "peanuts" perfectly now.

That was our weekend. It was a wonderful departure from the weekday routine, a memorable time for us, and a therapy in itself. Ella and I are rejuvenated for the week. The apartment smells vaguely of peanuts. We're eager to get home to Greg, our friends and our house, but as long as we're here, we're enjoying every part of it we can.

Central time

I think we may have discovered the reason that people here are so nice -- Central Time.

I always thought that TV programming was delayed according to time zone so that the evening news aired at 11pm all around the country -- not so. Prime time programming begins at 7pm CST, so people who watch television at night are, in theory, getting to bed an hour earlier than we are out east. That's my discovery for the day. It may be a stretch, but an extra hour of sleep can make a lot of difference, and something makes people relaxed and friendly down here.

Ella continues to do well. She's on the home stretch of therapy for the week. We hear that Baltimore is a little slushy at the moment, so we're happy to have our sun and 50 degrees. My parents are flying down this afternoon to visit, and we're really looking forward to it. It's our first full weekend free of scheduled therapy and we're hoping to explore the city and show "Dammah" and "Dappah" around.

A number of people have asked about our apartment, so here's a photo of the living room. We have three bedrooms and two baths. It functions well, except for the smoke detector mounted directly above the gas fireplace. We can't use the fireplace without setting it off, and it's so high we'd need a ladder to reach it. I guess they're just making sure we're safe from a cozy night fireside.

Cast change

Yesterday, Ella had her cast removed for the first time. It was a very strange experience. One of the co-directors of the clinic came to our apartment to remove the cast as she'll do once a week, and let Ella bathe and play for an hour before putting the cast back on. They'd prepared me for the possibility that Ella's skin would look dry and that she might respond in a confused way to having her cast removed. I'd read in the study that children don't object to having the cast put back on, and that some kids actually ask to have it put on. It's hard to believe until you actually see it.

Dr. DeLuca cut the cast off with scissors while Ella watched with curiosity. It takes two people to pry the cast apart, so Sarah helped with that. Ella seemed confused to see her arm and stared at it, turning it over and moving her fingers as if she were studying an object apart from her body. She grumbled a bit and was generally not enjoying the experience. I bathed her and she played a little in the bath, using her right hand to color with crayons, and more or less neglecting her left, but also not using her right with as much vigor as usual. Her arm looked normal, no dry skin or signs of irritation. We encouraged her to play after the bath but she was so distracted by the sensations coming from her right arm, she wasn't very interested in anything else. She kept wiggling her fingers and moving her arm across surfaces like a windshield wiper. She wasn't crying, but it wasn't the easiest thing to watch.

Soon it was time to put the cast back on, and the moment she realized what was happening, her whole body relaxed. She sat on my lap while they adjusted the cast and re-wrapped it in the color she chose -- "lallow". I put her shirt back on and she was immediately happy again and launched into playing. It was the most bizarre experience.

Some constraint-therapy programs involve taking the cast off every day after the session is over. This seems appealing, to be able to bathe your child without hassle and let them sleep without it. The folks here tend to believe that a method like that causes undue stress because the child never becomes totally accustomed to the cast as part of her body. Ella has completely ignored the cast since the second day. It's part of her life for now, and she is totally focused on learning to do things with her left hand, not waiting for the hour of the day when she suddenly has use of her dominant arm again. Therapy isn't therapy to her, it's just life. It takes place here in her home as a normal part of her day. It's not an event that she learns is difficult and can just wait out. It's every hour of the day when she wants to do something, conditioning her to try with her left, and that's the beauty of it. The reason we're here is because we believe in this therapy when it's executed in a method that makes it blend seamlessly into everyday life. So far, it's having great results.

Our first visitor

Thanks for all your messages, posts, letters, care packages and phone calls. We are feeling good down here in Birmingham.

Ella and I had a treat this weekend when our friend Bridgid came to visit. The weather was mild, 70 degrees, and we spent a lot of time outdoors. The therapy program takes a break on weekends except for the first Saturday when a normal 6-hour session is scheduled. So Bridgid and I went out and walked around the lake at Aldridge Botanical Gardens and bought magnolia and holly branches at their annual greens sale. The apartment is now decorated in true southern style.

On Sunday, Ella had her first day off. We took our most beautiful hike yet, at Moss Rock Preserve. All of these hiking spots, including Oak Mountain State Park, are within a 10-minute drive from our apartment. It's a strange area. We're sandwiched between a Super-Walmart and a Chick-fil-A, but so close to woods and waterfalls.

Moss Rock Preserve is our favorite place so far. It's a popular rock-climbing destination with a boulder field close to the trailhead. Fortunately for us, you can navigate around the boulders pretty easily and follow marked trails that hug the stream. There's a lot more exploring for us to do at the Preserve, but we had a strenuous hike yesterday (strenuous with Ella on my back) that felt like the so-called Cardio Trail, but Bridgid insists was not. Ella enjoyed throwing stones into the stream. She's able to bend down and pick them up herself now and give them a pretty good toss into the water. We're seeing progress every day.

After the hike, we had a picnic on our balcony with Bridgid before she left. We are very grateful to Bridgid for making the trip to see us. We had so much fun with her.

Bridgid was able to hear "Christmas in Dixie" on the radio right before she left, which no trip to Alabama in December would be complete without. And we both bought some Crimson Tide apparel so I believe she had the full experience. Sarah's back today and Ella seems happy to see her and to be playing with all her new toys again. We're counting the days until Greg's return, but we're not counting the hours of therapy anymore.

Bluebird of happiness

Bathtime is a fun time again. This was the last major piece of Ella's day that had been causing us trouble. She objected to having her cast covered with plastic bags for her bath. It's important to keep the cast dry, and it's kind of an obsession of mine to prevent a drop from landing near the cast. Ella gave me the idea one night to start talking about the need for "bags" throughout the day and get her used to the concept. She'd seen a bluebird bathing in her book and suggested that the bird needed bags, so we've used the bluebird story to full advantage. Ella has crayons for the bath, and we draw the bluebird every night on the side of the tub, and draw a red cast on her leg, and decide that she needs to have a bag over it if she's going to be splashing around like that. Ella loves this, and she's been back to her joyful self at bathtime the last two evenings. My parents refer to the music box that used to hang in my crib as the Bluebird of Happiness. It seems we've found a bluebird of happiness for Ella.

Goals

Greg left for home this morning, and we were sad to see him go. I remind myself that his departure marks the end of the beginning of our time here, and when he returns we'll be celebrating the beginning of the end. We're not wishing the time away, but the days are a bit tedious and we'll be glad to be back home together.

Today, a lizard broke the tedium. I was hiding out in the bedroom and he jumped onto the desk where I was working. For a while, I was locked up here with the lizard, not wanting to disrupt Ella's activities in the next room. But the lizard was jumpy, so I finally went out to ask Sarah about lizards in Alabama. She said she hadn't seen too many and then she actually caught him. Add that to her many talents because he was pret-ty quick. I snapped this photo before he jumped off into the woods. It's not as good as a photo of Ella, but it's what we've got today.

Ella had a great day. She's getting better at grasping and releasing objects. She was in a very good mood and Sarah commented on how fast the session went.

When we arrived here, they asked us what our goals for Ella were. We've been asked that question by many therapists before and I always find it so hard to answer. I want to say that we'd like her to be confident and brave to explore her world and discover her abilities, but that isn't much help to an occupational therapist. So we break it down. We want her to be able to 1) open her hand, 2) close her hand, 3) move her left hand independently from her right, 4) point to objects with her left hand, 5) fully extend her thumb, 6) have a full range of motion in her shoulder, 7) use the pincer grasp, etc. I resist itemizing it this way. It's a checklist, and there's the danger that some things won't be checked off. I wonder how much any one of those items will contribute to her happiness in life. How obsessive could we become over her fine motor control? It doesn't feel like the right approach, even though it's the reality of an occupational therapist's job. So we make the list and then try to forget about it and concentrate on Ella as a little girl who is about so much more than fine motor skills, and who will want to do a lot more in life than hang out with therapists. When I think about our real goals for her, she's meeting them every day. That helps break the tedium, too.