Month: January 2017

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!

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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. 

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​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. 

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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. 

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Jack played and watched and wanted to do everything Madison was doing. 

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.

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Madison did a great job showing off in her walker and helping Nana and Papa to entertain Jack. 

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 had a great morning with her friend Tiffany. They had planned on going skating but with all the rain they went bowling instead. Madison had a great time trying to roll the balls from sitting and also standing using a ramp. Thanks Tiffany!

Madi and Jack helped Mommy pick up a few things from IKeA today. Madi got some new physio mats for the basement makeover and a work table too. They LOVE going to IKEA and are always so well behaved and helpful.

Today was a special day for Jack. A day that Mommy had been looking forward to, but also- truthfully dreading. Jack had tried taking one or two steps over the last few weeks, and today he took up to 14 steps. We can’t wait until he is older and we can tell him his first steps were to a pizza box lol. It was emotional as a proud Mama watching your baby walk for the first time, but heartbreaking to watch Madison watch her brother do something so easily that she spends hours and hours and hours trying to do herself. She asked “what’s Jack doing”. Then the tearful reply “Jacks walking”. Madi then replied “no he’s not, he’s standing”. Madison then wanted to practice her walking and even got her canes out to try and walk around with them too. She practiced her walking for quite a long time – she was so motivated and worked her butt off. St.Louis can’t come soon enough. 

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​One of Mommy’s goals for Madison from now unt​il May is to get her on her feet more when free playing. Madison has been playing on the ground in her “w” sit far too much and has not been on her feet as much at home. When she is out in the community or doing her different therapies she is in her walker mostly. At home she is mostly sitting or crawling on the ground. To help her continue to access her interests such as colouring, doing puzzles, writing etc. Madison now has a standing workstation on the main floor for her to independantly play at and stay on her feet. She also continues to work on sitting with no back support so the stool will also help with that while being engaged with her different activities. When Madison went to bed the Christmas tree was still in this spot, so this will be a nice surprise for her to wake up to. 

Madison and Jack have their moments like any other sibling pair, but they are also quickly becoming each others partner in crime and best friend. They LOVE playing together and it is so neat to sit back and watch their relationship unfold. Jack was completely mesmerized and interested in anything Madi did this morning. She decided to set up some books and teach Jack the names of different animals and how to count them. It was so cute and such a proud Mommy moment. 

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Madison also wanted to teach Jack how to build a bed for his new baby doll from Nana. It was super important to Madi that the baby had somewhere to sleep. Jacks job was to pull all the blocks from the bag and Madi did the building.

Madison went on a movie date with Katy and Ruby to see the movie Sing this afternoon. There were many “I hate CP” moments that Mommy experienced between the large crowds and Madison trying to use her walker, negative comments from ignorant people and then navigating the stairs and seating in the theatre with a three year old and snacks. Mommy exercised deep breathing and made it through with the help of Katy and Ruby and the theatres helping hands. It’s always worth the battle, seeing Madison experience something fun and new and her big smile. She lasted about the first half of the movie and then wanted to crawl up and down the stairs, jump on Mommy and dance in the aisle to the music. She had a great time.