Year in Review

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The past year has been a blur of surgeries and rehab, mixed with some ongoing puzzles with Abby's nervous system and bouts of self-injurious behaviour. She's also been working hard to learn literacy skills and to navigate the new language content on her Tobii eye-gaze system.

The final surgery in December proved to be very successful. We just received x-ray results showing the bones fully healed in her right leg and the metal plate doing it's job to keep her ankle in place. Abby now sports a KAFO (knee-ankle-foot orthodic) when she walks and it has given her the confidence to build up strength again. She is working through a daily physiotherapy program this summer and we're seeing improvement in her posture and balance again. Due to her stooped posture, there had been some concern about scoliosis, but recent spinal x-rays showed a perfect-looking spine. Next month, we'll look at her bone density again to see if further treatment is needed for her bones.

Throughout the winter months, while recovering from surgery, Abby was very content and didn't have many other medical problems. When May arrived, she once again had to deal with the sudden onset of anxiety, self-harm, sleepless nights, and dysfunction of several internal systems. These symptoms make life miserable for Abby. They are hard to describe while maintaining dignity for Abby, so we often just refer to them as "bad days". There were very few good days for Abby between mid-May and mid-July. We are documenting symptoms and meds with great detail and are grateful for the Rett Syndrome Clinic, supported financially by the Ontario Rett Syndrome Association. We hope some day to have some clear answers to what triggers these symptoms. One current theory is a connection to allergies. We await an appointment with an allergy specialist in August.

When Abby's bad days disappear as quickly as they come, the sense of relief is palpable in our household. It's not unusual to see spontaneous kitchen dance parties. We've had a few weeks of good days and we're enjoying our summer now, but sometimes it's hard to live in the moment. Sometimes, we find ourselves waiting for the other shoe to drop. Waiting for the next hurdle Abby needs to face. We never lose sight of the promising research happening these days to find a cure or treatment for Rett syndrome.

On good days, things are looking up. Abby's physio has given her a wonderful new confidence in walking and she gets so excited when she learns something new with her communication system!

Writing sample from school this year. Abby chose from the dozens of single words on her Tobii, using her eye gaze.

I've been navigating all the pros and cons of various communication software options and teaching methods for students with "complex communication needs." Meanwhile, Abby has learned to navigate through the "pages" in her software using her eye gaze. She is clearly learning faster than the rest of us. About a year ago, Abby started to select the pre-set phrase, "I want to write my own words." Now, she is well on her way to figuring out how to do that.

We continue to support the Ontario Rett Syndrome Association due to the direct benefit we see for Abby and the other local girls and women with Rett syndrome. O.R.S.A. is volunteer-run and does great work to promote research and scientific and clinical collaboration, support three medical clinics, and educate professionals, families and the public about Rett syndrome. We look forward to the next conference in Ottawa where we'll continue to learn more about the latest research and strategies for helping our girls.

Please save the date for the Run4Rett and share the details with friends so we can rally Team Abby to come out and show continued support for Abby and friends!

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.