Sunday, September 27, 2015

Another Great Day for Team Abby and the Run4Rett!

Thank you very much to everyone who came out to join Team Abby on Sept. 20th! It was a beautiful day and our shirts were bright and sunny and plentiful!

Abby recently recovered from over a week of pain, related to her autonomic nervous system. This affects her entire digestion system and other internal processes that should function automatically. She is feeling great again now, but wasn't completely well on the day of the Run4Rett. We were glad she could join us, though. She's excited to look at all the photos and talk about all the people who came out to support her.

Thank you to everyone who made pledges and donations to the Ontario Rett Syndrome Association! Every year we are glad to welcome new families to the Run4Rett. Each of these families benefits from the work of O.R.S.A. This year, there was a really big crowd, including about twenty people with Rett syndrome.

Closest to home, we see the direct impact of your dollars at the Rett Syndrome Clinic with several of Abby's medical specialists in London, Ontario. And O.R.S.A. will soon be calling for proposals for a new research grant. We continue to support the logistics of the Canadian Rett Syndrome Registry to prepare for natural history studies and clinical trials to find effective treatments for Rett syndrome. We also look forward to the next O.R.S.A. conference in Ottawa in April 2016, where we'll hear experts speak about the latest information in communication technology, medical management and scientific research. It's also a great opportunity for clinicians, researchers, and parents to collaborate on the many challenges of Rett syndrome.

For those of you interested in who won the race, I have no idea; I was too busy talking. Rumour has it that Ben and Megan crossed the finish line first and they were too fast for anyone to capture the evidence.

We all enjoyed the sun, the run, and the fun. Thanks for continuing to make our whole family feel supported.

(I will update this post with fund-raising results once they are available.)

Tuesday, July 28, 2015

Year in Review

It's time to get ready for another Run4Rett on September 20th!
Register online now.
Sponsor Team Abby.
Download to print brochure with registration and pledge form.

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!