tag:blogger.com,1999:blog-71986801041782679542024-02-22T14:41:00.956-05:00Team AbbyInformation for friends, family, and supporters of Abby, a young woman with Rett syndrome.Team Abby participates each year in the Run4Rett to raise awareness and funds for the Ontario Rett Syndrome Association. This year's event is on September 15, 2019 in Richmond Hill. Thanks for all the support!Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-7198680104178267954.post-81389026792254940822019-08-24T12:42:00.002-04:002019-08-24T12:46:26.409-04:002019 Registration and Abby Update
This year's Run4Rett will be the 15th time Team Abby has rallied together to raise funds and awareness for the Ontario Rett Syndrome Association! Although this is very short notice, we hope to see many of you there. If you can't come, please consider a donation to the cause. Your support is appreciated.
Date: Sunday, September 15th, 2019
Time: 10 a.m. check-in
Place: Richmond Green Park, Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-59015315842334454852018-10-06T13:25:00.001-04:002018-10-06T13:25:23.792-04:00Not Back to School
After 5 years of high school, Abby is finished school! We are relieved to be past much of the long, complex process of obtaining government funding for Abby to lead a meaningful adult life with the personal support she needs to help with her activities of daily living.
We've had a lot of people interested and confused about what happens next for Abby, so I here's my attempt to Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-60977540861586470752018-09-18T22:09:00.000-04:002018-09-29T10:42:56.719-04:002018 Run4Rett
Thank you to everyone who supported Team Abby at the Run4Rett this year! It was a hot, hot day on Sept. 16th and we appreciate the efforts of those who completed the 1km and 5km routes! Abby was thrilled to be pushed her in wheelchair this year by her very fast brother! They were the first ones to finish. She then spent most of the time walking around and visiting with friends and family. She Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-59886993023368313312018-08-30T11:23:00.002-04:002018-08-30T11:30:59.687-04:00Caregiving
Abby's maternal grandfather died this summer from complications due to dementia.
Abby was one of Grandpa's biggest fans. She had a special place in Grandpa's heart and he showed great concern for her well being. He was a devoted supporter of Team Abby and was always hopeful for better days ahead for her. I remember once he said, "I hope Abby will be able to talk during my lifetime."
Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com1tag:blogger.com,1999:blog-7198680104178267954.post-21372327231910239802017-10-21T08:44:00.000-04:002017-10-21T08:44:57.671-04:00Run4Rett 2017
Thanks to everyone who came out to support Team Abby at the Run4Rett last month! We had a fabulous day with the warmest, sunniest weather ever. Abby had been feeling rotten the day before and didn't sleep well, so it was touch and go to start the day. As soon as she saw the crowds arriving, she lit up with excitement and she ended up really enjoying the day.
As always, there were new familiesKaren Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-90639635990109567772017-08-12T14:27:00.000-04:002017-08-22T18:34:27.593-04:00Summer 2017
We are looking forward to this year's Run4Rett on Sunday, September 17th in Richmond Hill!
Helpful links:
Register online.
Print a registration form to mail in.
Print a pledge form.
Sponsor Team Abby.
Volunteer at the Run4Rett.
Ontario Rett Syndrome Association
Bring your own Team Abby shirt if you have one! Any colour. We have tons of extras, too.
Abby, Caroline, Ben
Abby's having a Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-54463505468764980552016-12-18T21:22:00.000-05:002016-12-19T06:19:09.420-05:00Abby 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, Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-63553964843118905072016-10-07T21:55:00.000-04:002016-10-07T21:55:07.326-04:00Run4Rett 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 Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-22306171736749782952016-09-01T16:30:00.000-04:002016-09-02T07:33:40.303-04:00The 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. Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-42019479946207795842016-07-19T22:10:00.000-04:002016-07-24T21:10:14.428-04:002016 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
Volunteer
Ontario Rett Syndrome Association web site
Same time; same place:
11:00 a.m. at Richmond Green Park
1300 Elgin Mills Rd.Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-32510390965172358712015-09-27T15:03:00.000-04:002015-09-27T16:17:43.049-04:00Another 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 Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-39347171805338163252015-07-28T19:02:00.001-04:002015-08-15T14:30:22.409-04:00Year 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 Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-87015175972872787642014-12-23T21:51:00.001-05:002014-12-23T21:51:06.979-05:00Comfort 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 Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-71947984222097072552014-12-08T06:41:00.000-05:002014-12-08T09:22:28.603-05:00Bones and Strength
The orthopedic clinic at a children's hospital is the one place you'll always find the peculiar mix of us and them. "Them" being neurotypical children and their families with limited experience in specialists' waiting rooms. "Us" being the experienced kids and parents for whom the hospital waiting rooms have become a mundane part of life.
Kids get injured and sometimes break bones, so Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-9023489818708599322014-10-11T15:16:00.000-04:002014-10-12T09:42:16.836-04:00Thanksgiving 2014
It's Thanksgiving weekend in Canada and we have an abundance of reasons to give thanks. I'm thankful to be able to see our extended families often and enjoy their love and support. I'm thankful to live in a safe and free and peaceful country with publicly-funded health care and excellent doctors, nurses, and clinicians. I'm thankful to live in a place where free education is available for all Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-74026704594489624362014-08-16T21:52:00.000-04:002014-08-16T21:52:50.951-04:0010th Annual Run4Rett
This year, we'll be celebrating 10 years of support for Team Abby and the Ontario Rett Syndrome Association! The 10th Annual Run4Rett is scheduled for Sunday, September 21st, 2014.
Here are the quick links:
Sponsor Team Abby
Register online
Print registration brochure and pledge sheet
More info at the O.R.S.A. web site
Abby Update:
During the past several months, Abby has had several Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-18859399517312627982014-05-05T22:41:00.000-04:002014-07-03T21:30:03.880-04:0010 Years Later...
It's been 10 years since we got the official diagnosis of Rett syndrome for Abby. Rob and I sat in the office of the medical geneticist who did her best to gently break the news to us. We were a little impatient because we already knew what she was going to say. After four years of searching and grieving, we were relieved to have the confirmed results of the blood test: The random C Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-32489671452318852902013-12-16T22:42:00.000-05:002013-12-16T22:42:31.033-05:00Rett Syndrome Awareness
October was Rett Syndrome Awareness Month.
O.R.S.A.'s goal was to have people tell personal stories about how their lives have been affected by Rett syndrome. Many people shared their stories on social media. Some got local media coverage.
One of the month's highlights was the purple lighting of the CN Tower on October 25th. This photo from that night was shared around the world. Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-27558528551409820372013-09-25T06:44:00.001-04:002013-09-25T06:44:11.840-04:00Thank you for another great day!
Thanks to all of you for sponsoring Team Abby this year! Our group had a great day (Ben won the 5K!), but I was most struck by all the new families there - many little girls, each with a new diagnosis. They were able to connect with others for support. Your donations help all these Ontario families through research, medical clinics, conferences and the patient registry (which has Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-57051329009569193512013-09-03T12:21:00.001-04:002013-09-14T19:41:36.855-04:002013 Run4Rett
This year's Run4Rett will happen on Sunday, September 22nd!
You can find more details at the O.R.S.A. web site or check out the Ontario Rett Syndrome Association on Facebook and join our Run4Rett event page.
Here are some quick links for what you might need:
Pledge form
Registration form
Online registration
Sponsor Abby online
FAQ
Team Abby will have yellow shirts this year! Pick yours up Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-19153789011512301682013-08-13T11:59:00.000-04:002013-08-13T22:07:29.676-04:00No Longer Speechless
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Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com1tag:blogger.com,1999:blog-7198680104178267954.post-65642449599980347592013-07-05T07:27:00.000-04:002013-08-12T20:09:57.750-04:00Living with Rett Syndrome
Abby lives with Rett syndrome.
It bothers me to hear someone say or write that Abby suffers from Rett syndrome. I want to point out that her life isn't all about suffering. Rett syndrome presents many challenges and frustrations. There are times when it feels all-consuming. But Abby is not defined by her medical symptoms. She is so much more than Rett Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-47468445508486632482013-03-13T13:26:00.000-04:002013-03-14T20:14:44.783-04:00Let's Talk!
With Rett syndrome, communication is tricky. I know that most girls Abby's age are talking or texting for much of the day. She's a teenager now and teenagers are social creatures.
Recently, I created a Prezi for her peers at school, to help them understand how to communicate with Abby. Now that they "get" the basics of Abby101, they are asking to hang out with her Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-8327555105791541282012-12-31T11:01:00.001-05:002013-03-11T20:34:07.956-04:00Perpetual Puzzles
There is nothing logical about having a child with Rett syndrome. Most days present you with random, intractable puzzles. I'm so exhausted from Rett puzzles.
In other parts of my life I can work on fixing problems and feel like I've been helpful. I like puzzles. I just got a 1000-piece jigsaw puzzle for Christmas and I can't wait to tackle it. It will be challenging and it will takeKaren Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0tag:blogger.com,1999:blog-7198680104178267954.post-27245365065172112592012-10-24T12:10:00.002-04:002013-03-11T20:31:03.542-04:00Thanks again and again...
It was another great day at the 2012 Run4Rett on October 13th! Thanks to each any every one of you who came out to participate as part of Team Abby! Special mention goes to Abby's brother, Ben, who was the overall winner of the 5 km race with a personal best time!
It was a cold, but sunny day and the rain held off until things were winding down. Abby was thrilled to see all Karen Congramhttp://www.blogger.com/profile/01250926759207008265noreply@blogger.com0