Madi Moves

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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Madi had a day filled with highs and lows. Mommy wasn’t sure if a full moon was coming, possibly a reaction to her meds which lead to her being wired, a tired toddler or change in routine but Madi was a bit out of sorts this morning which lead to a few time outs and cancelling some things to stay home. 

After some rest and quiet/calm time in bed, Madi had some lunch and seemed more herself. She went to see Shannon which was very relaxing and soothing for her tired/sore muscles.

Once Madi was home and finished dinner, she wanted to work on her walking. Madi has been walking on high knees as her warm up before practicing her walking at home. This was very difficult for her to do before SDR. She could do just a few, very quickly before falling forwards. She is now controlled and much stronger.

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So proud of our little fish! Madi started swimming with Ryan when she was 18 months old.

Here is a pic from one of their first lessons together

 In the past 2 years she has become so comfortable and loves the water. Today she conquered two of her big goals – floating on her back & picking something up from the bottom! She can even walk for multiple steps touching the bottom with no help and loves front floats! We can’t wait to see what she learns next!

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​After some running around and getting things organized for the week, Nate visited for a play! The besties played in the backyard, had dinner and then bath and pj’s! Awesome summer nights!

Madi loved cheering for Jack at his swim lesson this morning. He did some great kicking and was only fussy for the first few minutes.

Madi and Jack then went over to Bens house for the rest of the day. They played with all of Bens toys, had lots of yummy food, played with cool water balloons and checked out Bens new playground. Madi loves playing with her BFF!

Madi had a lot of fun at camp this morning. She took 16 steps all by herself! She was in charge of teaching the calendar all by herself. Her favourite activity of the morning was making lemonade from scratch. She has all the steps memorized and would like to make some for anyone who would like to try a cup. She also had a blast throwing water balloons around outside while she practiced her standing. 

Madi and Jack spent the rest of their day at Variety Village with Nate and Uncle Mark. Madi loved having Nate join her Physio session and watch her walk. She had another amazing session with Stephanie doing lots of walking and did lots of practice trying to stand up from the floor all by herself. 

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After some great Physio, the three musketeers went to the pool for a swim and then headed to the accessible playground for a snack and play!