Day 1,331: Three Year SDR Anniversary!

Wow, how time flies! We can’t believe it’s been 3 years since Madison had her SDR surgery with Dr Park in St Louis. We remember the days of lugging her walker around and praying for independent steps. We celebrated every milestone and still do. We use to count each individual step Madison took, and wished for more. Now we count minutes, neighbourhood blocks and kilometres. SDR has given Madison so much more life then we could have even imagined. She is sleeping through the night, she can dress herself independently, she has zero pain and she is confident and happy. Thank you to all of our supporters over the years. This journey has been massive and we wouldn’t have made it this far without all of you. The thousands of therapy hours, kilometres driven and money fundraised and spent have been worth every penny and more. Madison will always have CP and she will always have mountains in front of her,  but the last 3 years have shown us that with the Village we have around us, Madison can conquer anything. Thank you to all of our family and friends, we are forever grateful!



Day 1,330:UPDATE

We can’t believe that January is already coming to an end! We’ve had a very busy month with lots on the go. We always appreciate everyone’s support and all the kind words of encouragement which we receive weekly. We thought it was about time to update everyone on what’s new with Madison and Jack.


Jack continues to love his time with his caregiver Jackie, as well as the days he spends at preschool. He is an active little guy who is keeping busy these days with swim lessons, music class, hockey and ski lessons. He is currently planning his party for his upcoming 4th birthday – his champagne birthday! He has picked a spiderman theme and will be going with his friends to SkyZone to bounce like crazy. We have been monitoring the issues he has been having with his throat and sleep. After xrays, observation and assessment his doctor has decided it is best to have his tonsils and adenoids removed. They believe this will help with the frequency he is sick but most importantly the issues with his airway when he sleeps. His surgery is booked for February 24th. He has enjoyed reading about the surgery with Madison who got him a special book about it and he is looking forward to a week of resting at home eating lots of popsicles and jello.



Madison is enjoying her year in grade 1. She has made some nice friendships and her confidence continues to grow. She keeps busy with Girl Guides, physio, conductive education, swimming, piano and skiing. More recently she has expressed difficulty with the content she is learning at school and the pace she has to work. Grade 1 has been a completely different experience then kindergarten! The good news is her reading has exploded and she regularly participates in class and works hard. She has less support, as her EA is only with her for transitions and outdoor time. She has began learning keyboarding skills and writing in google documents. Due to her changing vision and concerns with learning we followed through with the following assessments for her.

Binocular Vision Assessment
Madison had her assessment and they confirmed that she has binocular vision disorder. They advised us that this is most likely impacting her ability to learn at school and issues with coordination and balance. They have decided to give her a new prescription that will act as both correction lenses and therapeutic lenses to strengthen/relax specific parts of her eyes. Once they can evaluate the impact of the change, they will then decide about vision therapy. She will be wearing bifocals once they arrive. Her therapists are concerned as they feel this may set her back in terms of her walking and balance and are worried they may also cause some safety issues – she will not have depth perception and they will take a very long time to get use to so she will need to have someone watching her closely.
Psycho-educational assessment
Madison participated in a condensed psycho-educational assessment on January 18th and the report was reviewed with us today. The assessment was conducted as part of the Childhood Cerebral Palsy Discovery Network to help develop a registry to better understand the causes of CP and to develop treatments that are effective. This part of the study was to assess Madison’s cognitive functioning.
The tests administered:
Wechsler Intelligence Scale for Children – Fourth Edition sub tests
-Verbal Comprehension – 93%ile – Superior Range
-Perceptual Reasoning – 77%ile – High Average Range
-Working Memory – 18%ile – Low Average Range
-Processing Speed – 21%ile – Low Average Range
Peabody Picture Vocabulary Test – Fourth Edition
-Receptive vocabulary – scored High Average Range with a standard score of 122.
Madison’s skills are significantly stronger in the verbal processing areas with comprehension of language, concepts and vocabulary in the Superior and High Average Range. However, her visual processing ability is much lower. During the processing speed tests she missed items and a complete line. It is possible that she is impacted by her vision.
Madison was challenged by her auditory recall, particularly of non-meaningful information. Providing her with tools to make information meaningful will benefit her learning. Furthermore, she would benefit from using repetition when learning information this form of information.
The psychologist recommended a full assessment at the start of grade 3, when she turns 8 so we will be putting her on the boards list for assessment.
Recommendations that the psychologist made:
-extra time on in class activities and assessments.
-preferential seating: by the teacher for independent work time, facing the board straight on for whole class lessons.
-use of technology to take advantage of her strong verbal abilities. Apply for a laptop from the board.
-other options for extra time: bring home for homework, break tasks down into smaller more manageable chunks, prioritize learning, don’t miss recess to finish work.
-provide cognitive breaks
-prioritize homework: don’t assign what she finds easy(reading), use the time to work on areas of need (math)
-processing speed is slower because of how much she has to focus her eyes (vision issues) so avoid copying from the board – provide with information on her desk for any copying
-look for opportunities to accelerate her learning in the areas of comprehension, vocabulary, reading.
-attach verbal information to visuals. She doesn’t retain information that is not meaningful. This is especially important in math when working with numbers.
-find ways to motivate Madison when she faces challenges in her learning. She will take risks when she knows something really well. When she is aware that something doesn’t come as easy to her, she is more likely to disengage and will be hesitant to start a task, look to what others are doing or get frustrated.
We will be meeting with the school to add these strategies to her IEP.
Madison has an upcoming audiology appointment to check her hearing now that she is in grade 1 and the board is sending a speech pathologist to her school to do an updated screening of her speech, particularly with formation and articulation with ‘r’.
Madison continues to do well with her Hypervibe and stretching program at home. We feel that a large part of her recent progress in walking is attributed to the work she is doing daily with vibration therapy.
Some exciting things we are looking forward to in the next few months:
-new cooking class
-Para swim camp with Swimming Canada
-Family Day weekend at Nate & Evelyn’s new “Gregoire Cottage”
-March Break!
Thanks for everyone’s continued support!

Day 1,329: Hello 2020!

Yesterday I told the kids that this New Years we are not just celebrating another year that has passed, but a decade of moments that made us a family. They didn’t know what I meant so we shared some important highlights with them.

10 Years that lead to our family of 4…

-James and I dating
-Starting my first teaching job
-Renting our first apartment
-My Mom’s liver transplant surgery
-Buying our house and moving to Pickering
-Becoming parents of 2 fur babies
-Getting married
-Becoming parents to Madison & Jack
– And a whole lot of other awesomeness scattered in between that is equally as important, I just couldn’t think of it on the spot

They had a million questions and it was fun to reflect with them.

Our New Years resolutions as a family are: we will continue to try new things together and go on fun adventures, be active, eat healthier, get outside more, be involved in our community and put family first.

Thank you to all our family and friends who continue to be by our side on this crazy journey and for all your support.

We hope everyone has a Happy New Year and all the best in 2020!


Day 1,328: New Tech.

The next step in Madison’s journey is starting to explore technology for school. Madison’s

printing/writing has hugely improved this school year, but we know a laptop and assistive tech is going to be an important tool for her learning as she gets older. Her school will be giving her a laptop next year for Grade 2 but we wanted her to get a head start on developing some skills. Thanks to some incredible Boxing Day deals, Madison now has her own Chromebook, mouse and headset to start getting familiar with Google Docs and a program to build keyboarding skills.

Day 1,226: Ottawa

This weekend we had the opportunity to travel as a family to Ottawa to support Starlight Canada. They had their first Tea and Tiaras event at the Shaw Centre, downtown Ottawa. Madison sold her bear and spoke to people about how Starlight helps to brighten lives of children like her.


Day 1,225: Hypervibe

A big thank you to The Mike Gregoire  Memorial Golf Tournament for their ongoing support of Madison. She is making huge progress and your support this year has given her the gift of a Hypervibe whole body vibration machine. This was prescribed by Dr Park to help her continue to progress with her independent walking and to improve her balance and strength. It arrived yesterday and Madison loves it! She will use it two times a day to compliment her other therapy programs. Here is some information from Dr Park explaining how this will help Madison. Thank you for your support!254F2A0B-9D77-4D5F-8A57-9EB4FC6A531F2DB0E467-1AF7-4662-AAF4-592C7B57E941F778BF34-EDD2-4681-9D80-697E723CC0613DDAA03E-537E-46E3-B5BC-D164790F889A

Day 1,223: Golf 2019!

Today was the 8th Annual Mike Gregoire Memorial Golf Tournament! This year Madison was able to introduce all our family and friends to her friend James who will be going to St Louis for the same surgery that Madison had in a few short weeks. The tournament helped him out with the costs involved in post op therapy. We are always amazed by all the sponsors and donors that step forward for this event and to all the volunteers and family members who spend so much time getting everything organized and running a fantastic tournament! Thank you to everyone who continues to support Madison on her incredible journey towards independence  and walking!


Day 1,222: This is Six!

And just like that, Madi is 6 years old!

Its gone by so quickly!


Madison started her birthday weekend with a Friday night dinner celebrating Grandpas 65th and her 6th.


When Madison woke up Saturday morning she went straight to her iPad and searched for a birthday song. She then woke up the rest of the house by blasting “Happy Birthday” from her iPad while she also sang it at the top of her lungs. She then climbed into bed with the fam and everyone looked through her baby pics and other birthday pics which she and Jack got a kick of. It was a great way to start her birthday. She then opened her gifts and had a nice breakfast.


It was then time to head to her birthday party! Madison decided she wanted to have a spa party this year. They ate waffles with every topping under the sun and cupcakes too. They then went down to the main spa area to have fingers and toes painted, makeup on, and princess outfits on to start a dance party! It was an awesome party and it was nice meeting some of her new classmates and watching her interact with her girlfriends.

Once the spa was done, Madison headed to Pam and Medford’s house to celebrate. They had a nice visit and she was spoiled with gifts.

It was then time to meet up with the boys at a campsite. Madison LOVED camping this summer and asked to camp one more time before putting the camper away for the season. She had a great celebration playing games, eating cake, roasting marshmallows and having a sleepover with Nate.

The next morning everyone went out for breakfast to finish off the celebrations and then went to the Village for a swim with Ryan.

Madison works so hard and rarely gets to choose how she spends her time so we told her she could pick anything to do for her birthday and then we ended up doing it all! Thanks to everyone for all the birthday messages and gifts, Madison had an amazing birthday!

This week marks the start of fall activities that everyone has been looking forward to. Tonight was Jacks first sea turtle swim class and Madison’s first meeting back with Sparks. Thank you Pam for sewing all of Madison’s badges onto her sash just in time for tonight!