Month: August 2017

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

Nothing like summer days with Auntie Em, some water balloons, shopping, Popsicles and backyard fun!

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Today Madi & Jack were able to celebrate their Great Grandma Gregoire’s 90th Birthday! Madi told us her present for Grandma was to show her walking with pink canes. She did an amazing job all day using them here and there when she wasn’t in her walker. Happy Birthday Grandma!

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Madi had a great last day in Rochester. The first part of her session she practiced walking with different devices. She wore her Spio vest to help with trunk support and proper alignment and her left leg was wrapped to bring her leg out of external rotation. She was encouraged to walk slowly with flat feet in her walker, pink canes, blue arm crutches and then by herself. She did a lot of practice doing reciprocal walking with her tri canes and is getting much better.

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​she also worked on controlling her steps and being aware of her balance when walking by herself. She had to take 3-4 steps and then pause and hold her balance for 3 seconds and then start to walk again.

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She had some fun trying out different bikes to zoom around the gym.

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She also worked on high knees and sit to stand using the methods from the bio feedback machine. We also discussed taping her left leg to help with her rotation instead of the wrap as Madi really didn’t like the wrap. 

Some of the Recommendations moving forward are ditching her current AFO’s and getting hinged ones for school and using her SMO’s for therapy environments, using her Spio vest daily until her core improves, going into the pool 2-4 times a week to do water jogging,  using heel sqweakers to encourage heel toe gait and doing serial casting on her left foot to increase range. Using a massager to bring awareness to muscles she needs to be using more and bio feedback was also recommended. We also discussed the importance of correct form and immediate feedback right now and how we have a unique window of time to make changes with her age in development and timing of surgery and the theories behind neuroplacticity. Form, alignment and awareness are key and we will consider many of these ideas when trying to plan out the next three months of therapy and deciding what the focus should be.

Madi had a very busy day today. Her Physio sessions focused on bio feedback which went really well. Pia’s goal for the day was to see what potential Madi has with certain movements and muscle groups now that her spasticity is gone, where her weaknesses lie and determine focus of therapy for the next few months. Alignment, awareness and strength were the areas worked on. 

One of the muscle groups for functional movement that was worked on was for dorsiflexion as this is still a new movement and pathway for Madison as she wasn’t able to control dorsiflexion before her surgery. By using the bio feedback system, Madison was able to understand what muscles need to be used for what movement by a visual cue on the computer screen and a beeping sound as an audio cue. she was able to identify how to isolate specific muscles to achieve the movement she wanted. Madison was also fitted for a Spio compression vest that we will give a try to help her maintain good alignment to support her core and develop proper strength. 

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​Madison worked on some walking in her walker on the treadmill today as well. She wore squeakers on the bottom of her shoes so she could hear every time she made a heel strike. She also walked to the beat of music to help create a natural flow with her walking. She then got off the treadmill and walked around the hallway to try and keep the same beat even though the music wasn’t there. 

This afternoon she tried using forearm crutches for the first time. She also used single point canes. They were experimenting with less support to see what would happen. It was super challenging for Madison to coordinate, but her gait significantly looked better. 

After her last session it was time for some fun…Chuckie Cheese for dinner and a play followed by a swim at the hotel and late night dessert!

Madi really liked meeting Pia this morning. She is always curious when visiting new spaces about what toys and equipment will be there for her.

Madison had two sessions today. Two hours in the morning and one hour in the afternoon. The first part of the morning session was focused on Madi and Pia getting to know each other. Pia did some assessments and watched some videos of Madi before and after SDR. She reviewed our notes from St Louis and did a lot of video work with Madi observing her transitions, positioning and how she moves. 

The focus for the rest of the day was experimenting with different foot wear and compression garments to find what would give Madison the best alignment. From proper alignment and consistent feedback to her core, she will be able to build true strength in her muscles. 

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​Madi also played around a little bit with a bio feedback computer system. Pia used this to teach Madison had to be more aware of what muscles she needs to activate to achieve proper alignment and positioning. They placed the “stickies” above her knees and on her quad muscles. When Madison activated those muscles she was able to stand tall with no crouch in her knees. The machine would beep when she achieved correct allignment. Madison learned that every time her legs were straight she would hear a beep. 

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​After her Physio sessions Madi and Mommy did some shopping, went out for dinner and then went exploring. Madi loved a park called Tinker Park. It was a beautiful forest with trails with fairy homes hidden and scattered all around.

Madi was on the move this morning, packing up and hitting the road to Rochester, New York!

Every once and a while we try and switch up Madi’s therapy to keep it fresh and to help reflect on goals and next steps. 

For the remainder of this week, Madi will be in Rochester working with a PT named Pia. 

Here is a small blurb from her site so you can get an idea on why we are working with Pia:

“Research has clearly shown that periods of intensive therapy lead to rapid progress in patients with neurological diagnoses. That has been best practice in stroke and spinal cord injury rehabilitation for many years.

 Intensive periods of therapy for children with early acquired brain injuries, such as cerebral palsy, is still not standard of care in spite of the research that exists.

​Dr. Karen Pape’s new book, The Boy Who Could Run But Not Walk is the first book that clearly explains pediatric neuroplasticity, why intensive therapy works and how the therapy should be organized, both in terms of timing and content.

 Dr. Pape has been Pia’s mentor for more than 15 years. Step by Step Intensives were created as a result of this mentor.”

Madi was super excited the whole drive. She loved driving down all the country roads and seeing lots of fields, old houses and lots of flags! Madi and Mommy stopped a few times to enjoy the scenery.

Once she got to the hotel she ran all over the place checking things out. She was most excited by the pool located right outside her window.

After some unpacking and down time Madi went shopping and out for dinner!

Her night ended with a long swim and bath. Off to Pia’s in the morning!

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