Month: December 2016

Today was a big step in Madison’s journey, both as a toddler and a child who battles with CP.

Madison went to her “big kid” school this morning to visit for the first time. Starting in September, Madison will be attending Junior Kindergarten at St. Elizabeth Seaton Catholic Elementary in Pickering. She will be fully integrated into a full day kindergarten program with a class size of 30. It was an amazing first visit! She walked around the school with her Principal, Vice Principal and two members of her school support team. She went into a JK classroom and joined them for morning circle and calendar. She then went with them to the library to build in their tech section and played at a train table. She met her Vice Principals fish and got to choose some stickers. She LOVED it and was sad to have to leave. She will be registered in January, have her first team meeting in April with members from her preschool program and team at Grandview and will visit again in June and then August to make sure all equipment and everything that she needs is in place. They will also share with us in April her classroom schedule so we can plan her therapy in advance as she will be doing some half days during her first year of school to accommodate her rehab. They are also going to apply for support and what they need from the board now so we have all options available to discuss for the meeting in April. It was truly an amazing and relieving first visit. 

After her school visit it was time to go to Grandview. “No needles… No needles” she told us the whole way in the car. Madison received her LAST BOTOX INJECTIONS today. Dr Park predicts that Madison will never need Botox again after her surgery. Based on the timing from when she last had the injections and when the Botox needs to be fully gone for the surgery, we had a tight window to have one more set of injections to help her get through until the spring. We were so happy they were the last ones- today was the worst they have ever been because of her awareness to the situation. She screamed and cried and tried to move off the table. 3 adults had to hold her down to the table while Dr Mason used his ultrasound machine to guide the injections…. 8 needles! As always she rebounded quickly and was then happy to have her bravery toy. 

Madi and Jack were happy to have a quiet afternoon playing in the basement after such a busy morning.

Today Madi and Jack had lots of visits with different people and places so they spent the day in the car. 

Madi had a great morning at school getting things ready for Santa’s visit on Friday. She had her turn to dress up like Santa today with his beard and hat at music circle. 

After school, Madi and Jack visited Mommy’s school. They got to see the pool and all the kids at lunch in the cafeteria and visited with Mommy’s friend Danielle in her classroom. Madison loved playing in the gym and chasing Jack all over. Mommy was also able to confirm a continuation of leave until the fall! This will give everyone the gift of time and focus on preparing for surgery in May!

After the school visit, it was time to head home for a quick snack and then off to ballet! A few families inquired about wanting to help Madison by volunteering time at any upcoming events- so kind of them! Some others have offered to try and sell tickets to some events, so stay tuned! 

Madison was thrilled to get her candy cane after ballet from her teacher!

After ballet, everyone headed over to see Shannon for an end of day massage. Madison’s hips continue to be tight and uncomfortable and has pain at night so the timing of the massage was perfect! They loved being in their matching Christmas pj’s. 

Don’t forget to purchase your raffle tickets for World Junior Tickets! 

Jack was up bright and early to see Eric for a helmet check in. Things are looking good but we need to try and find more opportunity for him to have it on to get the most out of his growth in the next few months.

While at Eric’s, Madison’s new shoes needed some extra support so it was perfect timing! Madi got new runners since her toe dragging from all the running in her walker had caused major holes. With the new shoes, Eric tried a new heel support to make the heal rigid and easier to slide her AFO in and out. 

After school pickup, Madi and Jack had a lunch date with Mommy. Jack ate his first cheeseburger! 

After lunch it was time to have a visit with Great Grandma Lynch. Madison and Jack opened a present with her, read books and played. It was a really nice visit!

Madison had a nice visit with Pam and Medford to wish Pam a happy birthday and Madi walked 5 steps to Pam all by herself with NO AFO’s!

Madison continues to struggle with sleep due to digestion, muscle spasms etc. So we are very excited to attend this presentation next month! We are hoping for some new ideas/strategies/care focus to help little Madi sleep through the night pain free. 

Madison went to the zoo today to celebrate Papa’s upcoming birthday! She did a great job navigating around in her walker with her bulky snow pants and winter boots. She loved visiting the giraffes and checking out the indoor exhibits to keep warm. 

It was then time to go for some good food and gifts for Papa! Happy early Birthday Papa!

Madison checked her calendar today and started her countdown…1 week until Christmas! If you ask her what happens on Christmas, she will tell you “it’s the day baby Jesus and Santa comes and the day Molly the Elf goes home with Santa and the pink presents come to our house”

Madison had an awesome time celebrating Christmas with her buddy Ben tonight. After a day of hibernating at home to avoid the roads, she headed out to see her friend! They are so caring towards one another and play so well together. They had a nice dinner, built melting snowman, made a gingerbread house and cookies and exchanged gifts. They wore their matching pj’s and gave each other a snuggle before heading home to bed. Thanks for all the fun Ben!

​

​

Madi worked hard at physio today with Stephanie and had a blast! She loved practicing big stomping feet on the squishy discs that made squeaking sounds that both her and Jack found super funny. She did about 60-70 steps on the treadmill to practice smooth walking with no dragging toes and had a great time working on her walking in the snoozelin room on the sinking mats. 

​

​​​​​
​

​​Support Madison’s dream to walk! 

In support of her upcoming surgery, Madison is raffling off a pair of tickets to the Canada vs Slovakia World Junior Hockey game on Tuesday December 27th 8pm. 

The raffle will take place before Christmas- just in time to give an awesome gift to the hockey fan in your life.

Please email: katherinegregoire@hotmail.com if you would like to purchase a raffle ticket. 1 for $5 or 3 for $10!

Thanks for helping Madison get to St Louis!

Looking for a one of a kind Christmas gift for all the Leafs fans in your life…support Madison’s life changing surgery and purchase a ticket for a fantastic private party at the home of The Ultimate Leafs Fan!

______________________________

Madison got great news today that she was approved for All Access Funding from Three To Be! They are sponsoring the purchase of equipment to help kids with neurological disorders be included in outdoor activity with their family and friends. Madison’s funding will be going towards an adaptive bike! It will be great for her to learn on in the spring and as a bonus it will be excellent to have as part of her rehab process after surgery. She will be getting a foot propelled therapeutic AmTryke!

______________________________

Madison had a great day! She spent her afternoon at March of Dimes participating in different Christmas activities for her last class of the session. 

Madison also had her last night of swimming with Ryan and Jessica until the new year. She did some water walking and floats with her life jacket. She was especially thrilled with a gift that Jessica gave her- a hand made bracelet! 

Jack also had a great day helping Mommy finish up the Christmas shopping and then kept Nana and Papa busy while Madi was at her swim lesson 

​

​

We received great news today. After MANY appointments, phone calls, paperwork, running around – we were able to secure an appointment with a peadiatric neurosurgeon out of McMaster Hospital in Hamilton. Our OHIP forms were returned stating that they will not place decision on approval or denial for coverage of the surgery until receiving forms signed by a neurosurgeon. Madison will be going to receive a full assessment and then we will discuss her surgery planned with Dr Park in May and ask for the out of country OHIP forms to be signed. Cross your fingers and your toes!

Jack had a great morning with his buddy Owen playing. They are so funny together, playing and trying to “talk” to one another. 

Madison had a great afternoon with Grandma and Grandpa. Her favourite part was decorating gingerbread and tasting everything. 

Madison was thrilled to use her new walker at ballet class tonight. Her old walker didn’t turn well as it had to be lifted. Her new walkers front swivel wheels made it super easy for her to spin around with her friends in class. For those of you interested in ordering clothing from the “In My Own Skin” campaign for Madison’s surgery – being run by one of the studio’s teachers, you can email her at:

mohoganyxo@gmail.com

Jack had a great check in a Grandview today. His neck rotation continues to improve and he is more consistently holding his head in line with his body when standing and sitting. When looking over his right shoulder, he continues to drop his chin down or tip his head back and is not consistently in line, so we have some homework to do to help him achieve this. He is also being measured again next week to see if his head shape is continuing to improve from the use of his helmet while sleeping. 

Need some help buying the perfect gift this holiday season… Please consider donating to Madison’s surgery as a gift to that special someone. Every donation made as a holiday gift will receive this card from Madison to give with the donation. Thank you for your support!

Madison’s Life Changing Surgery Go Fund Me Link

Madison and Jack continued to get into the holiday spirit tonight with Nana & Papa while Mommy was coaching. Madison loved dancing to Christmas music and even stood by herself clapping and singing!

​

​​
​

Here is a photo that a fellow SDR Mommy shared. It’s beautiful and shows the possibilities for Madison.