Month: October 2016

Madison was an ambassador at the Lieutenant Governor Games today at Variety Village. Over 500 students from all over the GTA participated in adaptive/inclusive sports and activities. They encouraged one another in an inclusive and fun environment which was amazing to be a part of. Madison LOVED dancing to the music and going on the turtle scooters. She was also so proud to receive her medal! 

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​​​After a wonderful morning, Madison walked to the physio room to have a session with Stephanie. They worked on shifting balance for walking on the swing, practiced lots of walking and worked on the treadmill. Madison did a fantastic job!

Madison had a visit with a team of doctors, nurses and physiotherapists at Bloorview today who are interested in bringing SDR surgery back to Toronto. 

Just as Dr. Park from St. Louis has communicated, the Toronto team also feels that Madison would benefit from SDR. 

Today was one of those days that is very difficult….. As a special needs parent you are often left to do your own research, advocate and fight for what is best for your child. You are left having to weed through information and make health care decisions that no one should ever have to make. 

Mommy’s “lucky binder” always helps guide the conversation and inform those who need informing. 

At the end of the stress, Madison’s smile always brings us back down to earth.

To be continued…

Madi had a great swim with Ryan tonight while taking several photos for a special project at VV. They did bobs, bubbles, floats, kicking and practiced some walking on the ramp and water running.

Madison worked hard and had fun at March of Dimes. She was proud to show Mommy her new communication take home binder. 

Madison spent her whole day out. After a great morning at school she headed to Grandview for PT with Kate. Jack had PT/a stretch as well. Madi worked on strengthening exercises for her feet, lower quads and gluteus. She also worked on some walking with her AFO’s locked up. 

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After physio, Madi and Jack headed to their orthotist to sort out helmet and AFO issues. Jacks head had to be re scanned to fix the helmet from spinning and being out of place. Madi showed Eric her walking to sort out the hinge issues. 

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After both turns with Eric, they headed home for a nap. Jack decided to skip his nap and walk around the house in Madi’s Walker.

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Madison loves her time with Sassy. She was tired today, but did a great job! Warming up on the ball really helps Madison relax and sit easier on Sassy. 

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Madison has been learning to read with Nana. Today she practiced reading a Halloween book Nana made. Madi also loves playing a shopping list game. She looks at what things are needed on her list and finds the items to fill her cart. 

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Madison was very excited this morning when she woke up! Today was her brothers baptism! The extent in which she understood today was: it was a special day for Jack, she would see lots of family to have a party, the baptism was at her church, the priest would put water on his head, the water meant Welcome to the church. She was proud to share those facts with others. 

Madison did a great job visiting with everyone and had a fun time playing with all the kids in the basement after some cake and other desserts.




Thank you everyone for celebrating Jack and joining us today!

Madison had a super long- but awesome day! She spent her morning running errands and doing some shopping with Uncle Barker and Zoey! 

She then went to the zoo in the afternoon to visit with the gorillas, giraffes and zebras. 

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When she got home, Nana and Papa visited to hang out for the night while Mommy, Daddy, Uncle Barker and Zoey headed to a special party. Her and Jack played, had dinner and then played some more. She had a nice long bath followed by books and bed. 

Mommy, Daddy, Uncle Barker and Zoey attended Madison’s friend J.R.s ‘Life Without Limits’ party to raise awareness for CP and to celebrate his successful SDR surgery and raise funds to help support J.R. And his family. It was amazing to see a room filled with people wearing green ribbons and to see what his family and friends hosted for him. They had a live band, silent auction and 50/50 and some amazing door prizes. It was an amazing celebration, for an amazing little boy. 

Madison and Stephanie had a great physio session together at VV today. Madison showed Stephanie her new hinge straps on her AFO’s. Madison’s independent steps have changed since the straps were added and now that her Botox is in full effect. She is not able to do as many steps and doesn’t seem to have as much control and strength as she once did. Stephanie and Madison did different activities to try and problem solve around the change. Stephanie tried having her walk with the straps on and off. It appeared that Madison was more successful when the hinge was open. Everyone will continue trying different combinations over the next few weeks to see what is best. 

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Madi and Ryan had their first fall class tonight. Madison was thrilled to pretend to be a mermaid and kick. She also was proud to tell Mommy that she did bobs and liked blowing bubbles. She also walked up and down the ramps. She had an excellent first class back! Thanks coach Ryan!

Madison and Jack were up bright and early for a day full of appointments. They ate their breakfast and were out the door at 7:30. Their first stop was to see Eric. Madi needed some work done to her AFO’s and Jack needed his helmet adjusted.

Jack has had another reaction to his helmet. He has an infected hair follicle so he is not to wear his helmet for a few days until the swelling goes down all the way. His helmet has also been turning on his head, so Eric added some new padding to try and stop it. Eric also used the camera to re-measure Jacks head to see what changes have happened to this point. We should have the numbers in a few days. Once Jack was finished with Eric, Madi and Jack left to get some breakfast and run some errands. 

After a while, they went back to Eric’s to pick up Madi’s AFO’s and to review the adjustments made. Eric added stretching straps to the AFO’s to give her heal cords and calfs a good stretch. He also added a strap to the back to lock up the hinge so that her feet stay in proper alignment to protect the tissue on the bottom of her feet from shifting to incorrect positions when transitioning from the floor to standing and walking. 

It was then time to head to Grandview. Jack had the first appointment. He did some tilting on the ball and in front of the mirror to strengthen his neck muscles and he also got a good neck stretch.

Madison worked with Kate on some new stretching activities to activate and strengthen her dorsiflexion in her feet as well as a bridging activity to strengthen her gluteus. They finished by practicing some walking and learning transitions to sit on the potty independently. 

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