Day 1,101: Full Day of Therapy!

Thursday is a no school day which means it’s a therapy day!

Madi started her day with a morning at March of Dimes Conductive Ed. It’s so wonderful seeing their goals align with the St Louis team goals – Madi is thriving because of this alignment.

She then spent some time with her aunts enjoying some lunch and the sun and then headed up to Windreach for a ride on Sassy.

Madi really enjoyed riding outdoors today visiting the other horses and enjoying the sun.


After riding, Madi headed for a visit with Shannon for a massage. They focused on her hamstrings and glutes and Madi felt great after! She went right for the sticker stash on her way out.


Day 1,100: New Goals!

Here are some videos from Madison’s evaluation in St Louis!

Madison was back at school today and loved seeing all of her teachers and friends. It was library and pizza lunch all on the same day! After school she went to do some physio with Stephanie. They worked on some of their same goals like walking but incorporated some skills the team in St Louis suggested such as walking with only 1 cane, stepping up and down on objects for weight transfer and dynamic hamstring stretches. Mommy was thrilled to see Madison walk out of Variety Village through the parking lot for the first time only holding just one hand.

Jack continues to love his time at Jackie’s house with all his friends!


He also loves sleeping with his best friend- his ball.


Day 1,099: 1 Year Evaluation!

Evaluation day!
Madison visited the St Louis Children’s Hospital today for her 1 year evaluation.

First she had a PT assessment where she had to do all of the movements she did before SDR and 3 weeks after SDR to do a comparison. They were super impressed with how strong Madison is and her muscle development. They want her to continue working on weight shifting and walking with one tripod cane. She will remain in her AFO’s until PERCS surgery and then move to a hinged AFO and then to her SMO’s again. Flexibility is also a point of focus to help with her stride.

Next up was meeting with Dr Park. He asked about all her hard work over the past year, showed Mommy some stretches and evaluated Madi’s walking. He was very happy with her progress and recommended Madi for PERCS surgery. He asked to see Madison again in 1 year. Dr Park believes that Madison will be an independent walker within one year of having Percs! He also believes that Madison will continue to progress until 10 years of age. He encouraged lots of stretching everyday alongside daily massage.

The final appointment of the day was with Dr Dobbs, an orthopaedic surgeon. He did an assessment of Madison’s abilities and then also recommended Madison have PERCS on her gastroc muscles. He feels it will be the icing on the cake and help her get to the next level. Madison will return to St Louis this summer for surgery. He will then monitor for the next few years to see if she should also have her hamstrings lengthened.

Overall it was a positive visit with everyone and very encouraging for Madison’s future development. We have more insight into focus points for therapy and good next steps with PERCS happening this summer.


Day 1,096: Train Like Heroes

Madison and Mike started their work together today at Train Like Heroes. She will be doing her strength program there a few times a week to continue with her work from Mike Poole and her home program. She worked hard, had lots of giggles and loved it! Thanks Mike for a great first session – you held her accountable, challenged her and kept her moving for an hour with a smile on her face. It was a big success!




Day 1,095: Back at MOD!

After two weeks away, Madison was back at March of Dimes today for her Conductive Education class. She was so excited to be there with her friends! Here is what one of her teachers reported about class today:

“Today we were learning about rivers.So we played with water and all different sea creatures. We also made our own river out of paper and tissue paper where we put the animals in. Then we were so silly and tried to swim in it.
We also tried to kiss the frogs to see if any turned into a prince -But no luck:)”