Sunday, December 18, 2016

Abby Update

Abby had a pretty good autumn up until about mid November. She's been enjoying school, especially her Art and Native Studies classes. She enjoyed getting back into horse riding therapy.

She picked up her new wheelchair with the big removable Free Wheel for off-road outings. We completed the extensive paperwork to get some Easter Seals funding for an accessible ramp to our front door, but Easter Seals ran out of funds, so we will re-apply in 2017.

Abby is still walking, but her strength comes and goes depending on how her nervous system is functioning. She's been going through trials of various medications to attempt to treat her dysautonomia which comes and goes as well.

During November and December, Abby went through a few weeks of the most severe symptoms of dysautonomia ever. She was feeling stressed, panicked or in pain 24/7 and not sleeping much at all, pulling several all-nighters in a row, and unable to go to school. When her autonomic nervous system stops working, it affects her heart rate and blood pressure and her entire digestive and urinary systems, among other things. 

She recently started a blood pressure medication (a selective alpha receptor agonist) and it seems to be really helping to regulate her heart rate and blood pressure. Time will tell if it consistently helps other symptoms. Abby is now sleeping more than usual. It's a better problem to have, but we're hoping once she adjusts to the medication, she can be awake and feeling well for more of her day.

Abby recently got casted for two custom elbow splints (arm braces). You may see her in photos with the generic denim ones, but they are no longer strong enough to be very useful. The splints are meant to interrupt the out-of-control hand-to-mouth instinct that can sometimes cause harm. The more stressed Abby is, the stronger and more forceful her arm movements become. She has trouble controlling her own strength and she will ask for her arm braces to help her relax. On days like that, she can focus more on other things when her arms are under control.

It's been a busy autumn with the Ontario Rett Syndrome Association. We're excited that O.R.S.A. was able to release $100,000 for research in 2017. The scientific advisory committee is currently calling out for proposals from scientists. In a year of very scarce government funding, it's good to know our donors can help to keep some promising research in Rett syndrome going in Canada.

Today, Abby brought up the topic of research, putting words together on her eye-gaze speech-generating device:

"mouse. mouse. who. has. what.
what. we. mouse.
what. mouse. no. mouse.
what. we. Rett syndrome.
yes. like."

Please consider the Ontario Rett Syndrome Association if you are still making year-end charitable donations this year. The Hope Fund is designated specifically for Rett syndrome research in Canada.

Friday, October 7, 2016

Run4Rett 2016

Thank you, everyone, for all your support for another successful Run4Rett event!

It was a beautiful, sunny day on Sept. 18th and Abby was feeling great! She was happy to see so many friends and relatives who came out to support her. Abby was especially excited to see all the little girls with Rett syndrome, some who were at their first event, having just been diagnosed.

Team Abby raised over $7,000 this year for the Ontario Rett Syndrome Association. We continue to be extremely grateful for the financial contributions. The Ontario Rett Syndrome Association in led solely by volunteers. Our Board of Directors is a hard-working group of parents and friends. This year, I was elected as Secretary and I will serve on the Board for two more years. It's exciting to welcome new families who are also dedicating their time, skills and energy to ensure "better tomorrows" for everyone living with Rett syndrome in Ontario.

Below are some photos of Team Abby. You may also want to take a few minutes to see the photos 50+ photos on the Ontario Rett Syndrome Association Facebook page.

Heartfelt thanks for all the support in 2016! Have a wonderful Thanksgiving weekend!