Day 1,104: Golf for Grandview!

Madi had a great start to her day at March of Dimes! This week they spent time learning about caring for their teeth and money to shop at a grocery store.

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Later in the day, Madison and Jack had the opportunity to go to Deer Creek to share their Grandview story at the golf tournament fundraiser – they did a great job!

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DAY 1,102: Lots to Celebrate!

Madison started her day with some good work with Claire.

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After her physio session she headed to VV for a swim with Hayley!

It was then time to go to Nana & Papa’s to celebrate Daddy & Nana’s birthdays! Presents play time and then out for some yummy food.

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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.

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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.

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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!

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

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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.

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