DAY 1,067: Lots to Celebrate!

Madison and Jack are thrilled to introduce everyone to their new baby cousin Evelyn. She was born this morning at 7am, weighing 8 pounds 1 ounce and also goes by Evie. Mommy and baby are doing great and Nate is a very proud big brother! Madison has already made a list of all the things of hers she wants to show Evelyn and what she wants to teach her.



Madison and Jack also celebrated their Great Grandma Lynch’s 90th birthday today! They helped to celebrate by eating lots of cake and dancing. It was special having 4 generations celebrating together.



Day 1,066: The Dreaded Wall

Well we can say that it has officially happened…. I dreaded for years the time when Madison would protest, fight, push back and have her say….she has always done so well with all her therapies and been so engaged and cooperative… but the last few weeks have steadily declined and she has hit the wall…she wants nothing to do with therapy and is firmly holding her ground….we knew this day was coming – she’s 10 months post op and we would probably be having the same reaction if it were us, so we can’t really blame her – so it’s back to the drawing board…we will finish off until next week for March break, go to camp and then vacation and then see what the next plan is…stay tuned. Thank you to our friends at Smile Therapy for being so patient and caring this evening through the meltdowns and tears- you do wonderful work to try and engage and get the work done.



Day 1,065: Deep End Fun!

Madi had a busy weekend. It started with a physio session after school on Friday with Stephanie. Nana & Papa watched her work hard and were very impressed.

Saturday Madi had a play date with her friend Ryan from School. They loved making slime!

Today Madi had a great morning at the pool. She is starting to get more comfortable with her swimming in the deep end.

This afternoon Madi and Jack went shopping for some friends upcoming birthdays. It was the perfect opportunity to practice her cane walking in different places.

Day 1,064: Update from St. Louis

Wow! What a week! Things have been super busy as well as battling some flu bugs so our apologies for the lack of posts. Everyone is now healthy and moving forward with Madi’s therapy schedule. On that note, we wanted to update everyone on how Madison has been doing and plans coming up in the next few months with the guidance from Dr. Park and his team.

After submitting close to 40 videos and notes and measurements from various therapists, Dr park and his team have reviewed Madi’s progress to date and have sent us recommendations. They are very pleased with her progress. She is on track with all of his predictions for her. She will continue to do serial casting on her left leg every few months in addition to her night time brace to help continue encouraging her short muscles in her legs to stretch out naturally. She will continue with her therapy as scheduled, with more focus now on using single point canes, independent walking and building endurance. She will continue to use solid, high AFO’s to help build distance of walking with no crouched gait and build her confidence. Her new SMO’s are currently being made and she will only use them in strength building activities. She will continue to use her walker only for longer distances and for outside play. Her tripod canes will be her sole method of support, then eventually switch to her single point canes when ready. Madison will be travelling to St. Louis in May for her 1 year visit with Dr park and participate in a full physio evaluation to compare her current abilities to those of 1 year ago. While in St. Louis she will be doing some physio in their clinic and will also meet with Dr. Dobbs (orthopedic surgeon) who will evaluate her for a (to be determined)muscle lengthening surgery called PERCS.

We are absolutely thrilled with the progress Madison has made since having her surgery. She is almost 10 months post op and is taking many many independent steps, is stronger, more coordinated, has better balance and most importantly is pain free and is happy. The little things we have noticed change with is her speech and fine motor skills. Her volume of voice has become louder and more clear and she is able to be more articulate and speak in longer phrases. She has excellent fine motor control with things like her printing, tracing, threading and doing self help skills like brushing her hair, brushing her teeth and learning to dress herself. She can now sit independently in multiple positions and on different types of surfaces like benches or stools that offer little support. She is also able to walk up and down stairs or ramps holding onto a railing. While standing, she can also bend down to pick something up from the floor and then stand back up. There have been so many changes! We can’t wait to see what comes next!

We want to send out a big thank you to all of our supporters! Without you, these last 10 months would not have been possible. Since Madison’s return from surgery she has done close to 400+ hours of therapy and is moving mountains! A big team of family and friends have helped us take her to appointments, manage home life and have helped with a successful transition to JK and for Mommy being back at work – Thank you!!!

We are all thrilled with how the past 10 months have gone – but we are also exhausted and needing a much needed break…so…some exciting news…due to unexpected funds being returned/owed to our family…we will be taking Madison and Jack to Jamaica in March to celebrate all of Madison’s hard work and to spend some quality time as a family…no appointments…no therapy….just time in the sun, relaxing and connecting as a family. Woo! Madison can’t wait to try and walk in the sand!

Here’s what’s coming up next for Madison in the next 4 months:

-Serial casting in March

-March Break Camp at March of Dimes, followed by our family trip

-3 week intensive course with Mike Poole in April

-St. Louis 1 year post op visit in May

-3 week intensive course at the NAPA center in Boston in July

Thanks to all of our family and friends who were so generous with their fundraising efforts, we are able to provide Madison with all of these amazing opportunities to help her continue to progress. In addition to all of Madison’s support, Madi Moves was able to help other kids on the same journey. Some of the money raised in Madison’s campaign went towards bringing Mike Poole to Toronto to work with Madison and 7 other children. Madison continues to be involved with other kids campaigns and advocate for SDR to help get the right information out there for other families based on our personal experiences. Other private donations were made to support families with their fundraising initiatives such as silent auctions and Go Fund Me campaigns. Once we have a better idea of the need for muscle lengthening surgery, we will know how we can continue to support other kids like Madi.

Thanks for following along on one of the most incredible, memorable years for Madi! We stay committed to updating all of you and will do our best to continue posting Madison’s journey as much as we can. Xoxo.



Day 1,063: We Survived!

The kids all survived their first sleepover and they did awesome! After lots of books they all fell asleep right away and only woke up for a few minutes once. This morning they played in Madison’s room and then headed downstairs for breakfast treats from Uncle Mark and Aunt Nadia. It was a big success and super fun!

Madi & Jack spent the rest of their day lounging in their PJ’s, playing and napping. It was a super chill, much needed day.

Just before dinner time they headed over to Pam & Medford’s house while Mommy and Daddy went out for their Valentine’s dinner. They had their favourite dinner followed by ice cream sandwiches, silliness in the living room and a fun bath! Thanks Pam and Medford for a great night!

Day 1,062: First Sleepover!

Madi and Jack had a great day visiting Papa who is home from the hospital- they even helped him do some physio!

Madi then headed to the Village for some work with Stephanie. She did some good walking and worked on her single point canes for a bit.

Madi and Jack were thrilled to have Nate over tonight for their first sleepover! They played lots, had dinner, ran around the basement, read lots and lots of books and then eventually passed out.

Day 1,061: Valentines Catch Up

Things have been busier then normal this last week, so we apologize for not posting in a while. We are hoping after the long weekend we can get back on track with Life and regular updates for all our loyal followers.

Earlier this week Madison had the opportunity to work with Janet Dunn from Swimming Canada. She visits a few times a year to check on the progress from the little para swimmers and help Madison’s instructors plan for next steps.

Madison and Jack also celebrated little Sophia’s 1st Birthday!

Madi had two hours of training with Jo-Anne and her team

Jack loved Pancake Tuesday!

Madison helped launch Variety Village’s fundraising campaign for Valentines Day

The Olympic spirit is strong in this one!

We had Madi’s first IEP review at school. 8 people sat around a table to plan for Madison’s School supports and goals. The areas focused on were safety, gross motor, fine motor, life skills, mobility & orientation and social interaction. Everyone was on the same page and we were able to have a big contribution to what was reflected on the report. Overall it was a great review.

In other news…Papa is home! He is doing well and Madison and Jack have been very happy to FaceTime with him daily and will be seeing him this weekend. Thank you to everyone for all of your supporting messages and for all of your help!

Madison received her first Ash Wednesday Ashes at school today. She was thrilled to show everyone.

The kids loved celebrating Valentine’s Day. Thanks everyone for all the gifts!

Day 1,060: Catch Up

The kids have had a great few days. Thanks for everyone’s help while we have been focusing on Papa and his recovery!

Madison is super excited for the start of the Olympics! Here is Madison cheering for Canada 4 years ago, Sochi 2014

Keep working hard Papa….only 24 hours since your surgery and you are rocking recovery!

Day 1,059: New AFO’s

Madi went for a visit to see Eric after school today. She is 9 months post op and has already grown out of her AFO’s from St Louis. Eric figured out a way to create an inset that can be used in her AFO’s and SMO’s – so clever! After much thought and debate, she will be mostly using her solid AFO’s to develop her walking and use her SMO’s to develop strength. We will not have a hinge on her AFO at this time due to her crouch in her gait. She also has heel wedges in her shoes to help her balance shift forward. She loves the new pattern….pink Blue Jays logos on her AFO’s and also the straps! Thanks Eric!!!

Day 1,058: Jack Is Two!

Happy 2nd Birthday to Jack!

Madi had a great weekend celebrating our special little guy. Jack was thrilled to eat cake, open presents – but most of all – go to the Aquarium… he LOVED it!!!!

Thank you everyone who sent kind messages and have wished Jack well on his special day! He is our sweet little man – it’s been amazing watching him grow and seeing the relationship that Jack and Madison have formed over the past two years – they are so loving and special to one another.

Happy 2nd Birthday Jack – We love you!