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!

Thursday, September 1, 2016

The Trouble with Rett Syndrome

After my last post, my father-in-law called and said, "I'm confused! You wrote that Abby is having a good summer and Rob said she was having all kinds of medical problems."

"Yes," I said. "Both are true."

Compared to last summer, she's having a good summer. On the day I wrote the post, she was likely having a good day. She also continues to have bad days. That's the trouble with Rett syndrome. It's not so much the disabilities. You can accommodate for those. It's the medical problems which pop up randomly and often without a solution.

This morning, I could not get her dressed without the two of us both full of tears. She was in pain and I haven't completely figured out the source. There's a long list of possibilities and it could be none of those. Everything is connected to the nervous system and the nervous system frequently malfunctions in people with Rett syndrome.

I have been trying for years to accept the randomness of Abby's symptoms, but I still ride the roller coaster. Every time a doctor suggests a new medication, I think, "This is it. She is going to be fine, now. She will feel great from now on."

But, the bad days come back every time. We continue to work with doctors and other health care professionals to come up with solutions and sometimes, we do. Often, we don't. And there are always new problems. There always will be... until we find a cure or treatment that gets to the core of the problem. 

Abby is fine now, at this particular moment in time. This morning's medical crisis was not any more problematic than previous ones. The problem (for me) was the crushed hope - again. The latest new medication is officially not working. I knew this would happen, but I still had hope. 

I don't know how to accept the randomness of Rett syndrome. Tomorrow, I will start hoping again, knowing it won't last... until we find a cure. Families go through the good days with a constant hum of low-grade anxiety, feeling deeply grateful that things are going smoothly and wondering when the other shoe will drop.

Recently, I was interviewed for an article and asked, "What do you wish for Abby?" I'm not sure I answered very clearly because I thought the correct answer should be "a cure for Rett syndrome". I have this inner conflict between accepting her just as she is and hoping for a cure. I accept her and I do hope for a cure... because the bad days are unacceptable.

And my answer for the article? 
I want people to see past Abby's disabilities to get to know her as the person she is.

I've been following the disability rights movement and I would love to see ableism become something for the history books. But I'll save that for another post.

(Suggested reading: On Radical Acceptance & Not Fixing Your Kid. The Button Man story will sit with me forever.)

Author's Note: I have written a lot about Abby's bad days, but never published the stuff that would really help you understand. It doesn't pass the sniff test for what you should post publicly about your child. Some people would disagree and some people would say I've already written too much. You see, if it's not something Abby would want people to know, it's not going to be published. (Abby is working hard on her literacy development and some day, she will write about her own experiences if she wants to.)

Tuesday, July 19, 2016

2016 Run4Rett

Hi, everyone! 

I'm reviving this blog to let you all know that we're getting ready for another Run4Rett on Sunday, September 18th, 2016! Please join us if you can!

Quick Links:

Sponsor Team Abby online

Register online
Print registration and pledge forms
Ontario Rett Syndrome Association web site

Same time; same place:
11:00 a.m. at Richmond Green Park
1300 Elgin Mills Rd. E., Richmond Hill, ON, L4S 1M5

T-Shirt News:
Please bring your favourite T-shirt from previous runs. If you don't have one, we have plenty of extras! Last year's yellow one was ordered in abundance, so if you can't decide, wear that one. Thanks. We will not be ordering new shirts until we run out of old ones.

Abby News:

I will do some writing this summer to update you all. 
Abby is having a good summer and is looking forward to the Run4Rett in September!