Day 1,064: Update from St. Louis

Wow! What a week! Things have been super busy as well as battling some flu bugs so our apologies for the lack of posts. Everyone is now healthy and moving forward with Madi’s therapy schedule. On that note, we wanted to update everyone on how Madison has been doing and plans coming up in the next few months with the guidance from Dr. Park and his team.

After submitting close to 40 videos and notes and measurements from various therapists, Dr park and his team have reviewed Madi’s progress to date and have sent us recommendations. They are very pleased with her progress. She is on track with all of his predictions for her. She will continue to do serial casting on her left leg every few months in addition to her night time brace to help continue encouraging her short muscles in her legs to stretch out naturally. She will continue with her therapy as scheduled, with more focus now on using single point canes, independent walking and building endurance. She will continue to use solid, high AFO’s to help build distance of walking with no crouched gait and build her confidence. Her new SMO’s are currently being made and she will only use them in strength building activities. She will continue to use her walker only for longer distances and for outside play. Her tripod canes will be her sole method of support, then eventually switch to her single point canes when ready. Madison will be travelling to St. Louis in May for her 1 year visit with Dr park and participate in a full physio evaluation to compare her current abilities to those of 1 year ago. While in St. Louis she will be doing some physio in their clinic and will also meet with Dr. Dobbs (orthopedic surgeon) who will evaluate her for a (to be determined)muscle lengthening surgery called PERCS.

We are absolutely thrilled with the progress Madison has made since having her surgery. She is almost 10 months post op and is taking many many independent steps, is stronger, more coordinated, has better balance and most importantly is pain free and is happy. The little things we have noticed change with is her speech and fine motor skills. Her volume of voice has become louder and more clear and she is able to be more articulate and speak in longer phrases. She has excellent fine motor control with things like her printing, tracing, threading and doing self help skills like brushing her hair, brushing her teeth and learning to dress herself. She can now sit independently in multiple positions and on different types of surfaces like benches or stools that offer little support. She is also able to walk up and down stairs or ramps holding onto a railing. While standing, she can also bend down to pick something up from the floor and then stand back up. There have been so many changes! We can’t wait to see what comes next!

We want to send out a big thank you to all of our supporters! Without you, these last 10 months would not have been possible. Since Madison’s return from surgery she has done close to 400+ hours of therapy and is moving mountains! A big team of family and friends have helped us take her to appointments, manage home life and have helped with a successful transition to JK and for Mommy being back at work – Thank you!!!

We are all thrilled with how the past 10 months have gone – but we are also exhausted and needing a much needed break…so…some exciting news…due to unexpected funds being returned/owed to our family…we will be taking Madison and Jack to Jamaica in March to celebrate all of Madison’s hard work and to spend some quality time as a family…no appointments…no therapy….just time in the sun, relaxing and connecting as a family. Woo! Madison can’t wait to try and walk in the sand!

Here’s what’s coming up next for Madison in the next 4 months:

-Serial casting in March

-March Break Camp at March of Dimes, followed by our family trip

-3 week intensive course with Mike Poole in April

-St. Louis 1 year post op visit in May

-3 week intensive course at the NAPA center in Boston in July

Thanks to all of our family and friends who were so generous with their fundraising efforts, we are able to provide Madison with all of these amazing opportunities to help her continue to progress. In addition to all of Madison’s support, Madi Moves was able to help other kids on the same journey. Some of the money raised in Madison’s campaign went towards bringing Mike Poole to Toronto to work with Madison and 7 other children. Madison continues to be involved with other kids campaigns and advocate for SDR to help get the right information out there for other families based on our personal experiences. Other private donations were made to support families with their fundraising initiatives such as silent auctions and Go Fund Me campaigns. Once we have a better idea of the need for muscle lengthening surgery, we will know how we can continue to support other kids like Madi.

Thanks for following along on one of the most incredible, memorable years for Madi! We stay committed to updating all of you and will do our best to continue posting Madison’s journey as much as we can. Xoxo.