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. 

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