Madi, Jack and Nate bundled up to go to the Santa Claus parade today to see Santa and give him their letters. It was a wonderful day filled with VIP parking, snow, treats, lots of awesome floats and singing favourite Christmas songs. It was a great way to kick off the holiday season.
Just as Madi started to have a few days of relaxed tone, her tightness and pain kicked back in this morning which made for a difficult start to the day.
She LOVES going to her gym class at Variety Village with Tiffany, but today she was not in the mood to walk or do much for the first half of the class. Near the end, she tried walking on the track and playing different ball and net games which was good.
We decided to ditch the “to do list” for the rest of the day and have some fun getting ready for Christmas and the Santa Claus Parade tomorrow! Madi and Jack went shopping for some new outdoor decorations, made cookies for the parade tomorrow and helped Daddy build their new snowman to which Madi has already named him “Frosty-Olof”. Madi also decorated her Santa letter envelope that she and Nana wrote together. Madi is very excited to give her letter to Santa’s helpers tomorrow.
New tape to support Madison’s hips
Jack taking a stroll around Variety Village while Madi worked hard in physio
Stephanie brought Madi and Jack into the multi sensory room to practice some walking and do some stretching in a calm/soothing environment- they LOVED it!
Today is World Prematurity Day.
“Each year Worldwide, 15 million babies are born too soon. The rate of preterm birth is increasing and yet the general public knows little about the prevention of preterm birth and the problems and risks involved in the development of a preterm infant. Preterm or premature birth, birth before 37 weeks gestation, is the second leading cause of newborn death globally. Babies who survive an early birth often face the increased risk of health challenges such as breathing problems, cerebral palsy, intellectual disabilities and many other hurdles. For many families, preterm birth brings with it neonatal or infant loss.”
Madison was born at 32 weeks, 4 pounds and spent her first month of life in the NICU. Many of her little friends share similar stories of early birth and all the challenges and obstacles that were up against them from day 1.
Madison has been a fighter from the start and we are so blessed for the little girl she has become.
Madison continues to blow us away each and everyday. She is extremely motivated and determined and much of that comes from her early days of life and defining what it means to be resilient . This is how we know she will be great and do great things thanks to the doctors in St Louis and the opportunity they are giving her with her life changing surgery. To help Madi get to St Louis check out her Fundraising page:
https://www.gofundme.com/madimovesahead?ssid=808161736&pos=9
Madison was thrilled at school today when an ambulance visited. One of her volunteers Greg is a paramedic and brought his ambulance to school today to teach Madison and her friends. This week at school they are learning about Doctors and hospitals so she is right in her element.
Madison had a great session at conductive Ed today. She was tighter then normal in her hip flexors and hamstrings but she did awesome walking with her canes!
Mommy was so excited and proud at swimming tonight. Madison held onto her turtle flutter board and kicked on her tummy, floated and kicked on her back in her life jacket and did awesome independent walking in the water. The best part was feeling her legs after. She was able to be free and relax in the water which meant no muscle spasms and a great bedtime. Can’t wait for her surgery when she can aways feel that way!
Madison’s Go Fund Me for her surgery:
https://www.gofundme.com/madimovesahead?ssid=807185887&pos=7
While Jack and Mommy were up bright and early to pick up his new helmet, Madi’s newspaper article with Variety Village were hitting stores and online everywhere. So happy and proud to hear that Madi has helped to kick off the holiday season of the Christmas Fund for Variety Village with donations already rolling in for them and their fabulous programs.
Jack and Madi worked hard at physio at Grandview today. Jack had a good neck stretch and Mommy learnt new neck strengthening exercises to do with him at home. His right side is still a bit weak so it’s something to work on. Madi continues to build strength in her legs.
Madi LOVED walking like a duck and hopping like a bunny at ballet tonight!
Madison played hooky from school today to spend the morning hanging out at Variety Village with Mike Strobel from the Toronto Sun. She did a fantastic job answering his questions about her love of Variety Village and taking fun photos to help kick off their Christmas Fund.
http://www.varietyvillage.ca/the-sun-christmas-fund/
Thanks Mike!
http://m.torontosun.com/2016/11/14/three-year-old-madi-wants-to-fix-people?utm_source=facebook&utm_medium=recommend-button&utm_campaign=Three-year-old+Madi+wants+%27to+fix+people%27
Nana took Madison and Nate to see Raffi in concert at Roy Thomson Hall today! They sang, danced and had lots of yummy snacks thanks to Nana’s never ending bag of surprises! Madison did a great job walking through the crowds in her walker. It was a great concert for both the adults and the kids. Thanks Nana!
https://www.gofundme.com/madimovesahead
#madimovesahead
Madi and Jack were up bright and early for a massage with Shannon. Both kiddos had been uncomfortable this week so it was needed for both! Thanks Shannon!
Madi and Tiffany had a play date this morning at an indoor playground! Madi climbed, crawled, slid and played with Tiffany and had a blast. She told us her favourite activity was playing air hockey! Thanks Tiffany!
Madi and Jack spent their afternoon planning for Madi’s surgery! Today’s focus was fundraising planning with a group of family, who brainstormed specificly for online crowdfunding. Thanks to everyone who attended near and far through email, text and at the house! Thanks to Brian and Christina for hosting and for all your help Brian! Madison’s first part of her fundraising campaign will be launched this week!
Thanks Nana and Papa for entertaining the two monkeys while Mommy and Uncle Brian worked on the campaign.
Jack had an early morning getting fitted for his new helmet
Madison had a special guest visit music circle at school today….Bram from Sharon, Lois and Bram lead music circle today! Madison loved singing peanut butter and jelly and Skinamarinky dinky dink… The teachers, volunteers and parents were more excited then the kids!
Madi then headed to physio with Stephanie at Variety Village. She experimented with different Spio clothing and shorts to help give her extra support with standing posture and walking.
Jack loves trying to do what his sister does
Madi Moves 