Day 1,184: We’re Back!

Madi Moves is happy to be back!

We have had technical difficulties for the past few months which is now resolved and we are ready to share more of Madison’s journey with you – thank you for your patience and for following us on Facebook and Instagram during this time.

We have lots to update you on!

Therapy

Madison has had a quieter few months with therapy. Her weeks are a bit slower and not jam packed as before, but she continues to work hard with PT, strength training & swimming at Variety Village, PT & OT at Grandview and conductive education at March of Dimes. She also has been enjoying her time at Sparks and skiing with CADS at Brimacombe. Madison has started attending a support group at Grandview through the social work department called “Celebrating Me”. It’s a group for young kids with a physical disability to explore topics like sharing experiences, identifying the people, places & things that make you feel good, learning ways to cope when things get tough, how to advocate for your needs and how to support friends. Her newest skills include walking with one cane and using her canes outdoors on uneven terrain and in unfamiliar environments.

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School

School has been going really well. Madison is reading, writing more and walking independently around her classroom. We have toured the Grade 1 classrooms for next year and have a good idea of who her teacher will be and what her day will look like. The Grade 1 classrooms are located on the second floor which has been the reason for this advance planning. The school has been amazing with ensuring she has everything she needs – a new accessible parking spot by her new entrance and exit door and an elevator and accessible washroom right next to her new classroom. Madison had a glowing report card which also aligned well with her updated IEP.

 

Jack

Jack is now 3! He is enjoying his time with his friends at Jackie’s, participating in his swim and gym classes at Variety Village and most recently, skiing! He’s very into imaginative play at the moment with super heros (mostly Batman) and playing mini sticks and play dough.

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FUN

The kids were up to lots of fun things the last few months, most recently with March Break. They went to the Lego movie, Aquarium, Bruce’s Mill and Crockadoodle. Madison was chosen as the 2019 designer of the Starlight Charity bear and was invited from her buddy Taylor to the Wishes for Olivia/Make A Wish Foundation Princess Ball BT event. She is also officially invited to the actual Princess Ball coming up in mid April. Madison and Jack had their first official games night, went with the family to a Marlies game and Madison had her first sleepover with Sparks!

 

Volunteer Work

We continue to have conversations with Madison about the importance of being involved in her community and always looking for ways to give back and show appreciation. She has so many wonderful organizations that she is a part of weekly that give her so much. We try and help out where we can to give back as a way of saying thank you. Madison’s most recent involvements include a promotional video for Grandview’s new property development, being one of the Variety Village ambassadors for the upcoming Pizza Nova Day and her bear project with Starlight. We love spending time as a family on these special projects.

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Today

Wow, that was a lot to get caught up on, and we’re sure some things were missed. Today Madison and Jack went to see their friend Shannon for a much needed massage and then to the CADS end of year potluck lunch at The Abilities Centre. Madison was able to hang out with her friend Taylor and thank all of her volunteers who helped her ski this season. Her and Jack then went to a local nursery to check out the plants and get ideas to solve the very wet backyard situation. Mommy’s 2 week March break is almost at an end – it’s been a blast!

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Day 1,182:Therapy Thursday!

Thursday is now the only day Madison misses school each week, so she makes it count!

Her day consisted of some great work done at March of Dimes! She then went to Variety Village for a swim with Ryan and then some strength training with Melissa! Madison worked so hard today!

She did lots of standing and independent walking everywhere during Conductive Ed!

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Madison did some amazing back floats in streamline position.

For her strength training class, Madison and Melissa walked on the treadmill, walked the track, did some core exercises and step ups. Madison worked very hard and looked great!

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Day 1,180: From Snow to Pool

 

Madison had an amazing day and we are so proud of her!

She had her first day of skiing with the CADS program at Brimacombe. Madi’s friend Taylor has been involved with the program for years so Madison was thrilled that she could join something that Taylor loves. Madison’s instructor and volunteers were amazing! They were patient, caring and lots of fun. They did a great job figuring out the equipment and how to personalize it for Madison. She was on the hill for 90 minutes! Madison had the option to stop or take breaks and she just kept going – she didn’t want to stop! She worked so hard and was exhausted but loved it!

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Jack and Aunt Emily had a great morning together building his new race car track and playing in the basement. He was sad to miss skiing but had a blast with Aunt Emily and will join Madi on the hill next week.

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After some lunch and some down time, Madison and Jack headed to Variety Village for a swim! Madison worked with Ryan today and Janet from Swimming Canada who was able to get an update on the program and see how Madison and all the other swimmers have been progressing.

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Madison and Jack had a busy weekend but it was great to keep active during the cold weather by doing things as a family and trying new things!

Day 1,179: Ortho Update

Quick kidney update….second day of negative testing so she is on her way to weaning off the steroids!!! Lower dose starts tomorrow!

Madison had an awesome morning at March of Dimes! It was PJ day and they made a bear’s den for all their stuffy bear friends. Madison did lots of great walking and standing up from the floor.

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Later this afternoon, Madison had her first visit with Dr Camp. He is an orthopaedic surgeon at Sick Kids Hospital. He has quite the wait list there so we are very thankful he does satellite clinics once a month at Grandview which meant a short wait list! He was lovely to talk to. He asked a lot of questions about Madison’s past surgeries and had her walk for him and show him some different positioning. He was very impressed with her ranges and her skills with her canes. He discussed with us the typical issues kids with cp have with their hips due to the high tone and the forcing of muscles and joints not cooperating with each other which usually ends in dislocation. He commended us for being proactive with the removal of spasticity by having SDR. He described Madison’s hip issues as most likely occurring due to low tone/muscle weakness during a time when she was rapidly going through a growth spurt. He will examine pre and post X-rays further to see if he sees any other trends. He is not concerned with her migration percentages at this time because of how mobile she is and how she now continues to build strength and no longer has spasticity. He advised us to continue doing what we are doing and agreed with our strengthening approach to her hips. He encouraged good positioning, long leg stretching and walking as much as possible. She will repeat her X-rays at 6 months and then again at 12 months and he will follow her through her PT at Grandview. He feels that in 2 years time he will have enough information to be able to predict what her hip health will look like long term and then go from there. He is not concerned as he is also predicting very slow change at this point. We will review again once the next round of X-rays are complete. If you have a child with CP who does not have regular hip X-rays, I encourage you to advocate to your doctor for them. They are apart of the Ontario protocol for hip health and we would have had no clue about Madison’s hip issues unless we had the routine X-ray. He called her hip migration “silent” as she has no pain or anything happening to lead us to knowing about the change. We will continue to be strict about her positioning and keeping her on her feet. We will also continue with her strength program and daily stretches.

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Day 1,178: Steroid Update

Today was officially whacky Wednesday…. so much going on… and of course, Madi was a champ.

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Madison’s day started with an appointment with her Nephrologist Dr Wong. Her Nephrotic Syndrome is back in full force sadly. The last few days have been some of her highest test readings but the good news is it was much lower this morning. She has to be on her steroids for at least the next month and will be checking back at the hospital in a few weeks.

Once she was done at the hospital she went straight to school. Madison was happy to report she had library today and guided reading with her teacher – she loves school days full of books and reading!

After school Nana picked her up and they headed to Grandview to work with Kate. Madison started a new PT block that will go every week until March. Kate did some measurements to see how Madison is doing and they also did some walking on the treadmill, stretches and strengthening. Kate was very happy with the measurements Madison has maintained, particularly with her ankles.

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After a great PT session Madison headed home for some dinner and then had dance class! Madison has changed her dance day from Saturday’s now that her weekend activities/therapies have changed. She really enjoyed her class and loved her new teacher.

Day 1,177: Sparks!

Madison is very proud of how well she is doing at school, especially with her reading. She loves getting reading homework!

Tonight Madison had her enrolment ceremony at Sparks. She was thrilled Jack went to watch her get her new badges. She also finalized her last cookie order of the year…. she has 48 boxes of the traditional chocolate and vanilla cookies to sell and is now taking orders!

Madi was also thrilled to find out about her first Sparks sleepover coming up… twenty five 5-7 year old girls for a movie and sleepover at the local church! It will be great practice for when they all go camping in the spring.

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