Madison started her day with some good work with Claire.
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.
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.
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.
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.
Madison had a super active day! She spent 3 hours of her morning at Conductive Ed celebrating Charlottes birthday, went for a massage in the afternoon and then headed to ballet to practice for her upcoming recital!
Madi and Jack had a great weekend celebrating Mother’s Day!
Madi continues to work hard at a Train Like Heroes which has been a great addition to her weekly training plan. She leaves for St Louis at the end of this week and can’t wait to show Dr Park all the strength she has built!
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!
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:)”
1 Year!
One year ago today, Madison had her life changing surgery with Dr Park at the St. Louis Children’s Hospital.
12 months later and she is still breaking down walls and working harder than some people experience in a lifetime. It was the best decision we ever made for Madison. Here are some of our wins over the past year:
-potty trained & no longer is constipated
-sleeping through the night
-no more pain!
-able to control her ankles and wiggle her toes
-is ticklish on her feet and legs
-can sit independently in multiple positions
-sit to stand transitions much faster
-balance has improved for both standing and walking
-more flexible
-loudness in voice has increased
-can walk in tall knees
-has actual muscles in her legs!
-can walk in tripod canes in all environments
-can walk with single point canes in protected environments
-can take 100+ steps in her AFOs
-can stand for 10 seconds barefoot
-can take 4 steps barefoot
-only uses walker for outside play and long distances
-has been able to maintain range through serial casting
-learning to ride a bike
-can kick her legs (reciprocated movement) in the pool
-can take 30+ steps in her SMO’s
-tolerates her night braces through the whole night!
-is more coordinated (can now spin and turn at ballet in her walker)
-can rock climb!
-better fine motor control with colouring and printing letters/words
-higher level of endurance
-can walk down stairs using one hand on the banister
-is stronger happier and more confident!!!
It takes a Village!!!
Thank you to everyone who has supported Madison over this past year…driving her to appointments/therapies…entertaining Jack while work needed to be done… all the meals… help with scheduling…. motivational gifts for Madi to keep her working hard and non stop messages of love and support.
Madison was able to do over 900 hours of therapy this past year to conquer the list above – thank you for helping us give her that!!!
Madison will continue the hard work towards her ultimate goal – walking independently in all environments!
She leaves for St Louis in a few weeks to meet with Dr Park to do her 1 year follow up assessment and will also be meeting with Dr Dobbs to see if she is a candidate for PERCS surgery for lengthening. We will update everyone when we are there.
Thank you for following our journey!
There is so much to celebrate!
We are thrilled with the progress Madison has made this past year and can’t wait to see what year 2 has in store for her!
Madison is thrilled to be back at school. She arrived bright and early this morning as she was in charge of the morning prayer over the announcements. She practiced for a week and did a great job reading the prayer! She is very happy to be back at school.
After school she headed to Pam and Medford’s for a fun afternoon of gardening, climbing trees and then heading to ballet.
Madi Moves 