Jack had a check in with Eric this morning to make some adjustments to his helmet. He had to make 4 adjustments because of Jacks growth… 2 hours later we had a good fitting helmet and went off to pick up Madison from school.
Madi had a great physio session with Stephanie today! She did lots of standing and walking activities with her ski boots on and did a great job in the kids gym climbing, pulling, lifting and jumping!
Madison had a great morning at school! Her teachers were very happy with all her standing and walking.
Madi and Jack had a nice lunch date with mom while waiting for her afternoon therapy.
Madi had another Conductive Ed class this afternoon at March of Dimes…. Her third class this week! It was a 3 hour class with lots of focus on their “floor program” by doing lots of positional work and stretching!
Madi finished her day with a visit to the home of The Ultimate Leafs Fan! Mike Wilson is “The Ultimate Leafs Fan” with extensive knowledge of Maple Leaf history and owns one of the largest collections of TML memorabilia. Mike and his wife Debra have generously opened up their home and all their collections to have a night in honour of Madison to help fundraise for her upcoming surgery. Madison, Mommy and Papa visited tonight to finalize details for the event. Madison made her way around their house in her walker pointing out all the things that were interesting to her – the pool table, antique clock, music posters, lots and lots of hockey pucks and statues and Leaf memorabilia but her favourite was their cat! The fundraiser will be on Febuary 8th from 6-9. Dinner and drinks will be provided while browsing the collection. Tickets are still available for those interested. Mike will also be autographing his book “Inside the Room with The Ultimate Leafs Fan” and selling copies as well as polo shirts and hats with proceeds going towards Madison’s surgery. Thank you so much Mike and Debra for helping us give Madison the gift of mobility!
Madi had a sleepy morning at school but worked hard on the treadmill during gym class.
At Conductive Ed, Madison did lots of great walking and met a new friend in her class. While she was busy working hard, Mommy and Jack played at the near by Early Years Centre while waiting for Madi’s class to finish.
Mommy attended a workshop at Bloorview tonight entitled:
Sleep Challenges in Children with Cerebral Palsy. For anyone who sees Madison daily or knows her struggles – sleep is a difficult thing for her. She wakes often from night awakenings and muscle spasms. Here are some slides from the presentation:
Our take aways: No napping after age 2, trial melatonin for night awakenings, change bath time to mornings, no screen time 1.5 hours before bed.
Madi had a good morning at school. She was one of two in her class because of the bad weather. She had a blast having extra time in the snoozelin room and playing games during quiet time.
After school Madison went with Janine and Suzanne to exchange her ski boots for a larger pair. Madi was in a good rhythm of using her ski boots for a long time and then she grew and the boots were done. With the countdown to surgery, we wanted to help her continue to build strength and get her back in some boots. Thanks Janine and Suzanne!
After their shopping and lunch they headed to March of Dimes. Madi had a 1:1 with Monika today! Madi had a great time doing lots of walking. She said her favourite activity was trying to kick a snowball.
Madison was super excited that ballet started again today. She was very tired after MOD and was debating skipping ballet, but as the time go closer to having to leave she really wanted to go. She did a great job trying to jump like a bunny and spin in her walker!
After ballet Madison wanted to leave her ballet outfit on and practice standing and walking with her new ski boots!
Madison and Daddy left bright and early for school to try and beat traffic and get through the snow. They made it in record time so they had time for a play with Ben! Madison was so happy with her new pink Raptors hat that her Monday volunteer gave her. Madison loved being back at school!
After school, Madison and Jack visited Papa to pick up some uniforms for Mommy. They played with balls, had some apples and ran around.
After some lunch, Madi and Jack went to Pam and Medfords for a play and some dinner. Madison said she had so much fun! Unfortunately, due to bad traffic Daddy had a long trip home from work and everyone had to skip swimming.
A reminder that Madison’s Maple Leafs Fundraiser is only a few weeks away. Tickets are still available!
Madison and Jack spent their last day of winter break hanging out with friends at a birthday party. Madison was invited to her friend Ella’s birthday party and her friend Ben was there too. They coloured, watched their favourite shows, had lots of yummy food and helped Ella open her presents. Madison LOVED the banana birthday cake!
Later in the day Madison wanted to work on her walking. She practiced walking using the wall for support. Her goal is to walk using walls with only one hand. She did a great job barefoot, unsupported.
Madi & Jack enjoyed a day with Daddy doing different projects and errands.
After a few weeks break, Madison had a physio session with Stephanie today. She did fantastic walking and Stephanie noticed a difference right away from the Botox, comparing her squating, standing and walking abilities from the last time she saw Madison. They also did great work on the treadmill and practiced free climbing in the gym.
Madison’s battle for OHIP coverage continued today with a visit to McMaster Children’s Hospital in Hamilton. About a month ago Madison was denied OHIP coverage for SDR surgery until she gets the out of country OHIP forms signed by a peadiatric neurosurgeon. So today she travelled to meet with a doctor who has the ability to approve coverage to submit to OHIP. She was a bit nervous to meet the new doctor and said frequently “I don’t want to get fixed today”
The appointment was some what positive. The doctor agreed that Madison is a good candidate for SDR and was very consistent with all the other people we have seen in terms of his information and feedback. When we asked him to sign our out of country OHIP forms he said he would like to, but that OHIP has enforced protocol that he has to follow. He is referring us to see another doctor in the MAC spasticity clinic and then under their guidance, he will sign our forms. He really pushed information on us about considering the surgery in Canada or waiting to see it go back to Sick Kids or possibility at MAC as he said it’s not an emergency and it might be better to wait and see what options we have here. We told him our decision is to go to St Louis, we told him all our reasons and research backing our decision and he was pretty receptive to it all. We requested the clinic notes to help with our application. He was aware of our surgery date being in May and was confident that he could get us into the clinic before then. We hope to hear about the appointment in the next week or so and hope that it will be before May.
Madi and Jack headed over to the local Early Years Centre this morning for a play with their buddies. Madi’s new friend Evelyn and her baby brother joined them and Owen too! Evelyn and Madi have the same therapists and doctors at Grandview and Madison thought it was pretty cool that they live so close to one another and they both wear AFO’s. They played, had snacks and finished with circle time. Madison had lots of fun and Jack was super busy and all over the place like normal.
Madi was all business this afternoon working at her table hahaha she LOVES it!!!! A big thanks to Nana and Suzanne for entertaining the duo while Mommy got the house back together after Christmas craziness.
Madi Moves 