Madi Moves

Madi & Daddy were out the door bright and early for Physio with Stephanie. We wanted to change things up and bring Madi to Stephanie when she was fresh in the morning instead of at the end of a long day. Madi did a great job and loved showing Daddy what she has been working on. They were impressed with the amount of independent steps she was taking and how much smoother her transitions looked.

Once Physio was over, Daddy took Madi to her conductive education camp at March of Dimes. She worked with her canes a lot today and loved shooting Monica with a water gun!

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After camp, Madi headed to see her orthotist Eric. He was able to make the final adjustments to her AFO’s, fit her SMO’s and then do serial casting. Madi’s last round of casting was in St Louis, 1 week after her surgery which was just over 3 months ago. Madi just went through a big growth spurt and her left heel has been having a hard time stretching past neutral position so it was time to give it some help. She was so brave during the casting and just played with her toys – it didn’t bother her at all. Her left foot measured +5 where her right foot measured +15, so there was a 10 degree difference between both feet. We are hoping to get her left a little closer to her right measurements. She will have the cast removed in a week and then we will decide if it should go back on or not for another week depending on where it measures.

It’s so nice when you can see Madi’s therapy work transfer to her daily play. We are often finding Madison sitting now in side sit, long sit or crossed legs instead of the dreaded ‘W’ sit. She is getting much stronger in these positions which is great to see.

A special announcement from Madison to all her SDR friends:

The Mike Gregoire Memorial Golf Tournament is pleased to announce a funding opportunity for children who have had SDR at the St Louis Children’s Hospital and are now in post op therapies.
We understand the effort, time and financial demand the surgery has on families and we would like to help with some of the rehab costs once families return from St Louis. 
Different therapies work for different kids, so we want to hear from you on how being chosen as a recipient of funds from the tournament will help your CP warrior with their rehab program.
Tournament Details:
Sunday October 1st, 2017

Deer Creek Golf Club

Golf, Dinner & Silent Auction

http://www.mikegregoirecharitygolf.com
Criteria: 
Any child who has already had SDR with Dr Park at The St Louis Children’s Hospital, currently living in Ontario.

Funding Opportunity:
Selection made by the Golf Tournament Committee members. 

How to apply:
Please send a 1 minute video of yourself and your warrior explaining how this potential funding opportunity will help you in your rehab journey.

Please send videos by Sunday September 10th to: 

sdrfunding@outlook.com

The committee will announce the successful recipients before the date of the golf tournament 
Giving Back:
We have been contacted by some families asking if they can be a part of Madi Moves initiatives in helping other families with their fundraising goals, once they have met or exceeded their own fundraising goals. 

Here is your chance!
Ways you can give back:

*make a donation to Madi Moves or the tournament web page to contribute towards funds being distributed to other families 
*attend the golf tournament or dinner to show your support for the SDR community
*make a silent auction or door prize donation
*volunteer your time on the day of the tournament 
If you have any questions please feel free to send us a private message 

Madi was thrilled to be back at camp today. She loved their water play outside and did a great job with her walking. 

After camp she went home for some lunch and relaxed in her room on her iPad. She is wearing her glasses for most of the day now and always reaches for them when she is on her iPad, reading books, colouring or playing on the floor. It’s so interesting to watch her reading progress now that she has glasses. 

After some down time she headed to Judy’s for an ABM session. They worked on floor transitions, increasing her trunk rotation, range in her hips and flat feet on the floor when walking barefoot.

Madi’s day ended with a cool off with Emily in her pool. She did some water jogging, diving for toys and kicking around. Thanks Emily for a great end to her day! 

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Madi started her day with a bang! We are starting to see her skills in therapy transfer into new confidence for moving around the house. Today after getting dressed in bed, she sat up, stood up and took some steps towards her brother who stole her iPad. For most, the morning routine of getting out of bed and ready for the day takes no thought or energy, but for Madi – this new independence and confidence is a first of many new firsts to come.

Madi had a very busy day today. Lots of appointments and therapies – but all very beneficial and helping her to continue moving forwards. 

Madi met with her orthotist Eric who helped fix up her AFO’s. He narrowed the ankle pocket and added a pad to help Madi’s heel stop slipping out. He also sized her SMO’s and planned for her next round of serial casting that will be this Wednesday. 

Next up was riding. Madi did a lot of core work by lying down on her back and sitting up several times. She enjoyed walking around the ring that hasent been used that much this summer because of all the rain.

After some lunch, Madi headed to VV to do some PT with Claire! Their focus today was all core and hip strengthening. Lots of kneeling activities, sitting to stands, stand ups from the floor, deep hamstring stretches and work on the Physio ball. Madi did awesome – she worked every minute!

Madi had a relaxing end to her day visiting with Shannon for a massage. Shannon was able to help Madi’s feet sink right down to the floor by working on her calf muscles and then achilles. They also did some core work together and Madi was walking great after!

Madi & Jack were so excited this morning when they woke up…” It’s Thomas Day” Madison shouted to Jack to get him out of bed. Aunt Nadia organized an amazing adventure to go and ride Thomas the Train on the rails in Uxbridge. Madison said he favourite part of the day was seeing Thomas’ mouth and eyes move and Jacks clear fav’s were dancing to Thomas tunes while on the ride and running around the haystack maze. It was a great day!

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What a wonderful day of softball! Madi was at the Markham Classic softball tournament today put on by SPN Ontario and Malcolm Murchie. This years funds are being donated to “Madi Moves” to help Madi and her friends with rehab costs from their SDR surgeries in St Louis. Madi thanked the teams and took some photos before running the bases. She also was in charge of the coin toss for the last game of the day. A big thank you to Malcolm, SPN Ontario and all the teams who participated and donated!

Madi had quite the week. She put in over 12 hours of therapy in 4 days! She had a great week progressing with her canes and strengthening specifically her core and hips. Attending ABM this week helped soften her ankles and feet and she now has more rotation through her trunk. 

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She had a great session with Stephanie today. They focused on deep squats and control, independent walking and they tried several braces and footware to decide on next steps for bracing. She tried her SMO braces for the first time. It was very hard for her but we already saw improvement from her first few steps in them to her last. Madi also tried a different Walker with no wheels to slow her down and work on proper gait, but safely. We are still problem solving around what equipment we should suggest to Madi’s school to try and promote proper gait but also be independent and safe. The Walker needs to go, we are just deciding on how to move forward with other devices. 

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Madi and Jack had a great play with Nate to end off her week of therapy. 

Madi had a good ABM session with Judy this morning. They worked a lot on transitions from side sitting and creating more movement and rotation in her trunk and ankles. Madi also did a great job walking in her tripod canes with no braces on.

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After some rest and some lunch, Madi headed to do some work with Joanne. She did amazing today! She is noticably stronger and more confident with the exercises than she was a few weeks ago. They also tried some walking today with no braces which is the direction we are soon heading in. She had excellent alignment during the exercises and demonstrate good strength and awareness. 

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​After a day of hard work Madi was excited to go to Emma’s birthday party! A few of Madi’s friends from Centennial PreSchool were there including Ben! They had a blast!

Madi had an appointment with her kidney specialist this morning at the hospital. She has responded really well to the prednisone and has tested negative almost everyday with her dip sticks. Her doctor decided to lower her dose and change to every other day for the next 5 weeks. If she is still responding we will talk in 5 weeks time about changing to a less harsh drug. He was very happy with her progress. 

While Madi was getting checked up on, the OFCP truck was doing pickups at family members homes today. If you have items in your home you no longer need, consider giving them a call to pick up at your house and help those living with CP in Ontario. 

Madi did some great work with Stephanie today. She was so hot from all her hard work she asked to take her shirt off to cool off hahaha.

This then lead to a key topic when discussing potential with neuroplacticity. Dr Karen Pape says ” neuroplasticity is stimulated by Novelty, Challenge and Consequences. The goal is to encourage new activities that stimulate the brain.”

Madison was practicing walking towards a mirror. She thought it was so funny that she didn’t have a shirt on so she started posing like a ham. Stephanie asked her to turn around to walk back, but Madi didn’t want to stop looking at herself so Stephanie asked Madi to walk backwards. Madi thought it was so funny she was being asked to walk backwards with no shirt on while doing different poses with her arms that she did it! 4 steps walking backwards! Stephanie created a novel learning experience and Madi went for it and was able to do something she had never done before because it was a brand new movement, there was no former habit for her to try and compete against or break. It was so interesting to watch. 

After Physio, Madi picked up Nana and went to get her new glasses. Madi loves them! She is extremely far sighted so it will take her some time to get use to her eye muscles relaxing and wearing them for longer periods. Ice cream afterwards to celebrate!!

When Madi got home Jack loved seeing her glasses. He pointed at them for about an hour. Madi wanted Jack to have “accessories” too, so Mommy put Jacks hair in a pony tail so the two could be accessorized together

For Madi, and so many other kids like her- most days have more challenges than most people would even experience in a lifetime. They have so much to fight for and work hard for all the time. 

We also believe that she has learned more in her 3.5 years of life that most kids don’t until they are much older – how to advocate for herself, know what it means to take a risk, and the meaning of hard work and true resilience. 

Today was one of those days that sparkled and was a day of success and celebration in witnessing the rewards from the days of struggle, hard work and hours poured into bettering herself. 

First sparkling moment of the day was witnessing Madi write her name all by herself for the first time! She wrote it over and over and over, beaming with pride!!

The next sparkling moment was watching her go to her first appointment of the day – ABM with Judy! She walked all the way from the car, into the elevator and then into Judy’s clinic only using her pink tripod canes! She had only ever practiced with them in safe environments, like therapy. Today was in unprotected environments – pavement, uneven sidewalk, grass, elevator!

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The next sparkling moment was watching her use her canes again to go into her Physio appointment at Grandview! She managed navigating the parking lot, waiting room and washroom with her canes. She then worked on strengthening her core, practiced getting in and out of her canes from the floor, walked up a ladder and other transition activities. We never expected her to be where she is now, only 3 months post op!

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Madi’s final sparkling moment of the day was when she went to Emily’s house for a swim. They did water jogging with her water shoes to weigh her feet down and swam for almost 2 hours! She was amazing! Madi continues to push forward and blow us away!

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Madi & Jack spent the day running around and playing while Mommy & Aunt Emily worked on various projects around the house to get ready for our families next big transition…. Mommy returning to work in 3 weeks…Madison starting JK in 4 weeks and Jack at Jackie’s for daycare full time! Today we purged a lot of stuff, re-organized and cleaned to help get things ready. We have many more projects to get things in order, but we’re almost there. A big thanks to Aunt Emily!

Madi and Jack said goodbye to their change table/pack & play and replaced it with their table & chairs for more meals in the kitchen. 

Madi’s outside art

Jack, Stitch & Aunt Emily’s early morning cuddles to give Mommy some sleep