Month: February 2017

It’s sometimes sad to think back on the day and realize how many hours were spent out of the day in the van driving. Or how many snacks and meals were eaten in the van going from point A to B to C to D. But when Madi says how much she loved all her activities in the day, her legs feel great and she’s happy being busy – it’s all worth it!

Madi and her buddy Ella love mat time at school working through all her pre-op exercises.

After school, it was pizza for lunch with these two crazies 

Madi and Monika did some great walking at March of Dimes this afternoon! Madi loved reading about the truffula trees today. Her job was to walk to get a tree, and walk back to a different table to plant it.

Madi had her picture taken at Grandview today with the local Pickering newspaper to share her OHIP news!

 After pictures, Madi and her buddy Evelyn had an OT session together. They did a self assessment of where they are at with their self help skills like putting on their own socks or a shirt. They did different activities sitting on a stool to practice putting an oversized shirt on and learning how to stretch out their socks to fit over their feet. They did some work with stickers and colouring too – lots of learning and lots of fun!

Jack was a trooper today and just went wherever his sister went. He loves exploring the halls of Grandview!

Madison’s day ended with one of her favourite things…ballet class! Her ‘In My Own Skin’ shirt and hat arrived today! Thanks Mo!

Madison had an awesome morning at school! She was super excited to show everyone her new Peppa Pig backpack- thanks Nicole! 

Last week we met with Madisons teachers to discuss plans for kindergarten, getting her ready for surgery, after surgery etc. We gave them the pre-op exercises from Dr Park to be able to see some things we are focusing on before surgery. Today when we picked up Madison from school, her teacher had all the exercises photocopied, cut out and laminated on a key ring on her belt- and in other places in the classroom and gym so that whenever Madison has the opportunity for floor time – someone can do some pre-op exercises with her. They are also including some of her friends in the exercises to make them fun and friendly. LOVE her school!!!!

When Madi got home from school she went straight to her gym to do some walking on the treadmill and walking between furniture.

​​
​​
​​​​​Madi and Jack had a great time playing hide and go seek and dancing with Nana & Papa while Mommy was coaching. 
​​​
​​

​​​​

We are still overwhelmed but feeling so loved and supported from the fundraiser last night at Muckish Irish Pub. Here are some pictures from the night that were posted today. Thank you for everyone’s generosity!

Madi had a great afternoon playing with Jack and her partner in crime- Nate! They played while different members of the family joined together to celebrate the different fundraising successes, plans for St Louis, plans for the last fundraising event and discussed ideas of how we can support other SDR families. So many great ideas, so much support! So many tickles and fun with Auntie Em!

Madi did a great job this morning at her gym class. She said her favourite part was being line leader for one of the games.

Later in the day Emily and Madison had a nice visit together. Madison showed Emily her new treadmill and did lots of fun activities like making food and some art. Emily gave Madi a very sweet card and activity book to wish her good luck in St Louis. Thanks for the visit Emily!

After dinner, Mommy & Madi headed to Muckish Irish Pub for a girls night out! With the help of Cardinal Newman High School, the pub hosted a fundraiser night for Madison and her upcoming surgery. It was amazing!!! Almost 200 people were in attendance who participated in a live auction, raffles, door prizes and dancing. Madison was a rock star! She met so many new people and gave an amazing speech. Thank you to everyone who attended, donated prizes, purchased tickets and are supporting Madison’s journey. It was an awesome night!! Thank you Muckish Pub!

Madi and Jack had a sleep in this morning while Mommy had some radio interviews with 640 and 1010. They asked great questions and it was awesome to continue sharing our story in the hopes of helping others.

Madi skipped school to get some sleep and to go to a vendor who was in town from Quebec to check out a bike. Madi trialled the bike, got measured and picked her accessories and then the order was placed! She will be getting her new purple trike in 2 weeks! 

Madi made front page of The Toronto Sun again today! So proud!

She spent her afternoon relaxing after the last few days of craziness. Loves her new headphones and easy hold iPad case.

Madi had a great swim tonight! Lots of good work on transitioning from back floats to tucking her legs in to try and stand up. She also did lots of great walking around the hot pool. 

Jack loved watching his big sister swim but he also loved checking out all the basketball in the gym

Madi made her way to Queens Park today to help represent all the families in the province who have not received OHIP funding for the exact procedure she received funding for just two days ago. 

Highlights from today:

Toronto Sun Article Link
CTV News Coverage Link
Global News Link
CBC News Link
CP24 News Link

We would like to share some exciting news. Late last night we received a letter, sent by courier, from the Ontario Ministry of Health, approving the OHIP funding for Madison’s surgery. We want to thank everyone for all of your help getting us to this place. We are proud of the time and energy put into this battle that we came out of with success. We now have the exciting task of redistributing some of the excess funding, that was generously donated to us, to other families who are in need of financial assistance to get to St Louis. We will move forward with our last fundraiser planned for March 18th as a celebration of achievements and to help others like Madison. It will also be a time for Madison to visit with her family and friends before heading to St Louis.

Some of you may also have heard that our fight for SDR funding was raised in the Ontario Legislature yesterday by Jeff Yurek The Honourable Member for Elgin-Middlesex-London. 

Here is the link:

https://m.youtube.com/watch?t=102s&v=5VArREUU2JU

 Yurek is also planning a Press Conference for next week and has invited all SDR families to attend. He also plans to address this issue again next week in the legislature. In the meantime I am mobilizing all the SDR families to take advantage of this amazing opportunity to force significant change that will hopefully result in funding for all families in Ontario. 

Thank you so much from Madison and on behalf of all the SDR families who will hopefully benefit from this unbelievable effort from our family and friends. 

Thank you to all of our donors and the different fundraising initiatives for helping us get Madison to St Louis and ensuring she can have the therapy that she needs when she returns home. 

Don’t let this little pink princess fool you… as soon as she was home from ballet she attacked a wall squat set like a warrior! So impressed with her “wall sits”. She counted out loud the whole time!

Que ‘Rocky’ theme music… 63 days until Madison’s departure to St Louis!

With all the blessings that the last few weeks have brought us, we didn’t celebrate something we are proud of sharing each and everyday…our blog! Happy 2 years of reading about our beautiful CP Warrior and all the adventures our different life gives us- thank you for reading and being on this journey with us.

______________________________

Madi spent her family day morning baking up a storm! Cupcakes were her speciality – big and small. More icing went on her face and in her tummy then on the cupcakes. 

Madi and Jack then headed with Uncle Mark to Nana and Papa’s house for Family Day! After some St Louis planning and playing, everyone headed to our families favourite Japanese restaurant for dinner!

Jack & Madi visited at Grandma & Grandpa’s today to celebrate Jacks birthday. Madi was excited to see Auntie Em there too! They opened presents and had some lunch and cake. Auntie Em wasn’t feeling well from her marathon of a walk so Madison took care of her by rubbing her back and reading her books. Such a caring sole.

As soon as Madison got home she headed to her gym in the basement. She walked on her treadmill by doing 2 sets of 2 minutes of walking with 1 minute of independent standing in between. She also did some great stretches with her stretch straps on her AFO’s. 

​​​
​