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.
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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.
Madison’s home gym is slowly coming together. Her buddy J.R. found a kids treadmill for her, to use the bars for the big treadmill. Unfortunately the new treadmill is too wide, so Madi and Jack headed to Home Depot for some supplies to try another idea.
Daddy used Madison’s skate trainer and some c clamps and she was able to walk! We are hoping the other treadmill bars will work on one of the treadmills at Variety Village to donate and use when she’s there for treadmill training.
One of Madison’s new favourite activities at school is dance and movement class during gym time. Her favourite song with her teachers is Uptown Funk. Today she stood independently on and off for almost the whole 20 minute class!
Madison had another big day in the news…front page of The Toronto Sun! Thanks Mike and Stan!
Madison had a FABULOUS physio session with Stephanie today. She did the most walking she has ever done, walking all the way down a hallway to her brother Jack who was waiting for her…such a special moment.
Madison skipped school today to visit with her buddy Mike Stobel at Variety Village. The last time she saw Mike was also at the Village, before Christmas to kick start the Christmas Fund. Mike is writing about Madison’s journey to SDR in The Toronto Sun. When Mike asked her what’s new, she said “Im going to St Louis. I’m going to see Dr Park. He’s going to help my legs walk.” Que watery eyes.
Madi played while Mommy and Mike chatted about what’s new in the world of OHIP, travel plans, projected outcomes from the surgery and how some of her rehab will be at the Village. Thanks for all your support Mike and Stan!
Toronto Sun Article Link
Madison then headed to March of Dimes for her conductive Ed class and then was happy to see her brother after he spent the day at daycare.
Tickets are still available for Madi’s Paddy Day Party! Reserve your spot to help Madison and her other SDR friends!
www.gofundme.com/madimovesahead______________________________
A SPECIAL ANNIVERSARY
Today our family takes a break from our current journey preparing for Madison’s life altering surgery to remember another journey that was life saving for us. Five years ago today my mom and I were preparing to undergo surgery that would take a portion of my liver and transplant it to my mom Mimi. With the wonderful skill and care of the medical team at Toronto General Hospital my mom received her new liver on February 15, 2012 and we were both on a new path to recovery. In the five years since the surgery much has happened but the most exciting has been the addition of three grandchildren for my mom to enjoy. Nana is the number one fan of Madison, Nathan and Jack and she has been the most energetic and vocal supporter of all our efforts to help Madison. We are so grateful. In honour of this special anniversary we would like to encourage everyone to go to beadonor.ca and register to help someone else in need.
https://beadonor.ca
Nana & her #1 fans
Thanks for the flowers mom!
Remembering back to 5 years ago and all the support we had by looking through our memory box from the surgery
Family Transplant Video
https://m.youtube.com/watch?v=aMsROTT9C1A&feature=share
Mommy & Jack attempted to get his passport picture done for St Louis…2 hours later after laps around the mall, a cheap mall ride, spotting his sisters pic in the LCBO and multiple attempts at a photo…this was the best one
Jacks mall adventure!
Madison was super excited to wear her heart dress to school today. She was very proud of her cards she made for her teachers and friends and was thrilled to hand them out!
Madison and Monika worked hard this afternoon on her standing and walking with all kinds of Valentine’s activities.
Janine and Suzanne then took Madison to visit Great Grandma Gregoire for some Valentine’s cheer.
Jack and Madison loved giving each other snuggles today.
Here they are on Valentine’s Day last year:
today:
Today our hearts were full of love and feelings of thanks and blessings. Madison’s Go Fund Me page hit the big target thanks to all your support. We have started our countdown to May 2nd and are so thankful that we now have the funds to get her there! Lots of mixed feelings and a bit of shock happened today, it will take some time to process and then truly reflect on the magnitude of what everyone has done for our little girl. Xo
Madi Moves 