Tuesday, December 23, 2014

Comfort and Joy

My favourite thing about Team Abby is the feeling of being wrapped in the support of family and friends, especially when challenges come our way. 

This year, Rob asked a quilter friend to see if she could make a quilt out of all the Team Abby shirts from over the years. Gail (a.k.a. Cozy Quilter) took on the task with enthusiasm and the result is wonderful! Now Abby can be wrapped in support and feel the comfort of everyone who's ever been a part of Team Abby. 

And, truthfully, this quilt has provided comfort to each of us in our family.

In some ways, it's been a rough year for Abby. She's struggled with terrible symptoms of nervous system dysfunction, causing her to feel miserable for weeks at a time. But in recent months, this problem has all but disappeared. Touch wood because we aren't sure why. I'm hoping it's because of the recent addition of the medication called Buspirone, but it could be totally random and she could take a plunge into misery again. The comfort comes from knowing we've connected with some psycho-pharmaceutical experts who are willing to work with Abby's doctors at the Rett Syndrome Clinic. I choose to believe we will find a way to keep Abby feeling like herself.

Abby has now undergone two surgeries on her leg this year. Her osteotomy revision surgery happened on December 16th and recovery is going very well. Abby seems to be pain-free already and she is sleeping well at night and smiling during the day. We saw the surgeon for follow-up today and he is very hopeful that her ankle will stay straight enough to walk well again.
This fall at school has been great for Abby! For the first time, she's been included in regular classes and discovered new friends and knowledge in Science and Drama. I was proud to see her first performance using her Tobii eye-gaze system to speak her lines. Two of Abby's school friends came over to visit her yesterday and you could hear them laughing together in Abby's room and talking together with Abby using her Tobii.

We've discovered endless possibilities with the eye-gaze technology in our home and at school. We are only limited by the time it takes to implement new ideas and features. I'm so happy to see more and more families starting to gain access to this technology. Thanks to a generous donation by the Edwards Charitable Foundation, the Ontario Rett Syndrome Association was able to facilitate the Rett Syndrome Communication Workshops in November. Dozens of parents, caregivers, clinicians and educators were inspired by the potential to use this new technology to help our girls and women to speak, write, and communicate! 

So when we count our blessings, they are bountiful! And we have every reason to feel joy about Abby's future. And we are forever grateful for the comfort of friends and family. 

Monday, December 8, 2014

Bones and Strength

The orthopedic clinic at a children's hospital is the one place you'll always find the peculiar mix of us and them. "Them" being neurotypical children and their families with limited experience in specialists' waiting rooms. "Us" being the experienced kids and parents for whom the hospital waiting rooms have become a mundane part of life.

Kids get injured and sometimes break bones, so orthopedics can be a part of a regular kid's life. Not so for EEGs, EKGs, barium swallow tests, bone density tests, abdominal ultrasounds, or augmentative communication services. Most other specialists' waiting rooms are not so inclusive of the general population.

Chances are, in orthopedics, you will get to see at least one parent pitch a fit about how long he/she has to wait. At the very least, you'll see them muttering or pacing or complaining quite loudly to their children, for everyone else to hear. I don't blame them. That was me, the first time we had an appointment with an orthopedic surgeon. Our appointment was at 9:00 a.m., so I figured we'd get in right away. I can't remember if we waited 2 or 3 hours, but I do remember making friends with everyone in the waiting room, while 6-year old Abby ran around and flashed her goobery smile at them and grabbed at their snacks. I was the one talking very loudly to Abby about how I didn't know we'd have to wait this long; otherwise, I would have brought more snacks along.

A few days ago, on our most recent visit, having built up years of resilience to waiting, we arrived at the orthopedic clinic with ample snacks, movies, pillows, blankets, drugs, arm braces, headphones and patience. For the first time ever, we ran into someone we knew, a friend from Abby's school, also waiting. We waited for two and a half hours, but I didn't get to see anyone pitch a fit until the final half hour of our wait. A father and his son were missing lunch and he was able to find out there were still six people ahead of them, waiting. Determined to fix the whole system, he explained his ideas - not so tactfully - to the receptionist.

Eventually, we found ourselves in one of the inner clinic rooms as we could hear the resident and surgeon making their way down the hall, from patient to patient. In the room before us, I heard the girl about Abby's age, asking about her hockey season, then refusing to accept that she might not be able to play in the finals.

When the resident came to our room, I tried to summarize our post-surgical problems with Abby's leg. The physiotherapist thinks we need to take more wedging out of the AFO (ankle-foot orthodic). The orthotist thinks we need to look at the problem with the knee. Abby is not walking confidentally with the brace on; she won't put her foot flat on the floor. Without the brace, she doesn't even want to put weight on her foot. We were all expecting her to be walking independently by now.

The surgery on September 2nd was a tibia fibula derotation, which involves cutting the two shin bones and straightening the leg. A look at this week's x-ray shows that one of the bones has slipped out of place. As the surgeon said, her leg looks straight, but it's not very functional. Abby's ankle leans too far inward and the combination of that pressure and Abby's low bone density may have caused the new problem.

Before I could even process the x-ray information, the surgeon was there, talking about possible surgical procedures to fix the ankle (a new, stronger plate) and the broken bone (bone graft from the hip). Ortho docs always seem so confident about things that seem kinda complicated to me. Which is refreshing, when you're used to docs being puzzled by Rett syndrome and not always having any suggestions for solving problems.

And Abby was smiling while we talked about fixing her leg and walking. She seems very relieved that we finally understand her discomfort. 

So, the doctor turns to me and says, "What do you think? It's up to you." Inside my head, I am still freaking out a bit because I really had not prepared myself for the possibility of more surgery. But I find the strength to say what needs to be said: "Abby's a walker. You need to keep her walking. Let's do it."

So we await the date for the next surgery.

(On another note, for another day, Abby's had a solid two months of contentment, with none of the crazy nervous-system symptoms that plagued her for most of the spring and summer. We've tweaked her meds for this and hope for continued sleep and sanity.)