Madison’s team at the hospital had booked her pre-op stuff yesterday so that if they needed more lab stuff done or any other appointments they would still have today as an option before the surgery. They were fine with everything yesterday, which meant a free day today!
Madison’s day started with a trip to the St Louis Science Centre. She wasn’t so sure of the giant robot dinosaurs but she loved the discovery room where she painted, played with water, explored a space station, was a vet at an animal hospital and lots of other fun stuff!
After some lunch, she explored some more and then headed for a shopping adventure at Target where she picked out her new backpack and lunch bag for school.
Madi was up bright and early to head to the airport this morning. She was excited to be going back to St Louis, but is nervous for her surgery.
The trip got off to a rocky start when the special assistance counter did not properly check our bag in and we got held at customs until our bag could be located….made it to the gate just in time for boarding!
The flight was a bit bumpy with the bad St Louis weather, but it wa quick and Madison was awesome – coloured the whole time!
Once we landed we headed to pick up our car, which ended up being an issue with the ID and booking card (long story with lots of eye rolling) so we cancelled that booking and jumped on a cab to the hotel.
After a quick lunch and bags dropped in the room, Madi headed to the St Louis Children’s Hospital for her pre-op assessment to discuss the issues she had waking up after SDR and to review a plan for her nephrotic syndrome. We had a very detailed meeting with the nephrologist, anesthesiologist and nurse. They had all her Toronto medical files faxed this morning and spoke with her nephrologist Dr Wong. The plan is to try and keep the surgery to under an hour and push only the fluid that’s needed. They did blood work and urine sample today to have a baseline of her numbers and will do the same the day after her surgery to see if protein is in her urine. So everything was very thorough and good to go. On Thursday for surgery she is not allowed anything by mouth after 5:30am, has to be at the hospital for 11:30 and surgery is at 1:00 (2:00 Toronto time).
After a successful set of appointments and lab work, Madison headed to the Build a Bear at the Galleria – she was super excited because she watches YouTube videos of girls who have been to the same one because the St Louis Galleria location is the first Build a Bear ever created!
She finished her trip to the mall with a wish in the fountain and dinner at The Cheesecake Factory – early to bed for this traveller!
Today was Madison’s second last day of therapy before her rest up north and then flying to St Louis a week today.
She worked her butt off today. The work started early at Smile Therapy with Jo-Anne. She had her measurements taken to know a baseline before surgery. She loved trying to spell words during her different exercises and finished the session with some great walking with the Stim machine.
After running some errands, Madi headed to NeuroChangers to do some work on the GEO. She also used the E-Stim there as well with a specific focus on her gastrocs which are the muscles being lengthened next week.
Madisons last stop of the day was a well deserved massage with Shannon.
The St Louis Children’s Hospital contacted us today to go over Madison’s surgery more in depth due to her Nephrotic Syndrome. They are in the process of consulting with Madison’s Nephrologist here and obtaining her health records. The goal of this review and preparation is to try and avoid a relapse after surgery, due to the amount of fluid they need to push through her body during surgery. Madison will also be meeting with their Nephrologist and anesthesiologist two days before surgery to review her reaction in recovery after her SDR surgery and to talk more in depth about any other issues. We are very pleased with how thorough the team in St Louis is and feel confident with their plan.
Summer has completely gotten away from us… fun family time…. intensives…. more physio….getting ready for surgery….more family fun…. here is what Madison has been up to.
– a great intensive at Smile Therapy for Kids
– amazing progress at horseback riding
– a nice visit with Great Grandma Gregoire
– cheering Mommy on at Rugby
– attending the Markham softball classic fundraiser for Madison & Cruz
– 1,000 steps at NeuroChangers on the Geo
– swimming at VV working on her double arm back crawl
-camp at March of Dimes
– some relaxing massages with Shannon
-registered for dance and Girl Guides (Sparks) for the fall
-family fun day at Wonderland! Jacks highlight from the day was driving an old car trying to chase Madison and Daddy and riding his first rollercoaster! Madison’s highlight of the day was riding her first big kid rollercoaster – The Ghoster Coaster!
Thanks for following along! Madison leaves for St Louis in 8 days so we plan on sharing more often as we gear up to her PERCs surgery. Thanks for all the support!
Madi continued to work hard at Smile today. She started strong but then had a rough finish. She is having a tough time lately being able to regulate her emotions. Sometimes it has been coming through during therapy which tends to derail things. We will continue pushing forward and teaching her the language to express herself and giving her the tools to help herself when she spirals. She has been asking about CP a lot lately. She asks almost everyone now how old they were when they first walked all by them self and she is questioning why her friends from school don’t do therapy like she does. We are trying to keep conversations open as she continues to try and understand the hand that she has been dealt.
After her sessions at Smile, Madi headed to see Eric her orthotist. One of the requirements after her PERCS surgery is to wear tall, solid AFO’s for 6 weeks after surgery to help her muscles be stable while she heals. Madi had hers fixed up today so they would fit her better. They were also prepared to be hinged once the 6 weeks post op is complete to help her transition back to her SMO’s.
We have had a busy week with lots going on and lots to share!
A week in review:
Jack saw his first movie at the theatre
Madison has been working hard on her printing.
Madi loves her new horse Axel
Jack likes playing contact scooter hockey
The kids had a blast at Centre Island
Mommy is loving being back on the rugby field
Jack is learning new skills at soccer
Welcome the newest member of our family…Rusty!
Our new accessible entrance
Madi learning double arm back crawl at Variety Village and more soccer!
Madi started an intensive course at Smile today. She hasent been in about 3 months due to scheduling and work so it was nice to be back. She worked hard and had some fun.
Madi and Jack kicked off their day in the pool while the steps at the front of the house were ripped out for an accessible entrance. It should take about a week and will be great for Madison to get in and out of the house on her own.
Madison had a nice visit with Shannon this afternoon who taped her up to help with her tight hamstrings and quads. Look at those flat feet! Thanks Shannon!
After a nice massage Madi was on the road to Train Like Heroes for a session with Mike. She rocked it! They targeted her collapsing knees and balance skills and had lots of fun while working hard. Thanks Mike!
I usually pride myself on my scheduling abilities and being able to manage multiple calendars, over 10 different therapists, Camps, daycare, activities, coaching, work schedules etc etc…. but I don’t know what I was thinking when today’s schedule was made… clearly I was either sleep deprived, on another planet or someone highjacked our weekly planner… so this is how our Wacky Wednesday went down…
8:00-9:00 – Physio with Stephanie
Madi & Stephanie have been doing a lot of work with the FES machine to build strength particularly in her left leg and trying to keep that heel down when walking. Madi’s new love is Where’s Waldo so that helped her get through.
9:45-10:30 – Eye appointment
Madison had her yearly check up today and all is well with her eyes. Her script is still the same and no patching is necessary. She was thrilled to not have to get eye drops. She will continue to wear her glasses from morning to night.
11:00 – 3:00 – Conductive Education Camp
Madison continued with her camp at March of Dimes today with her buddy Cruz. The two are enjoying the construction theme this week and are practicing lots of walking!
Last of the day! – Riding Lesson
Madison started her summer riding lessons this afternoon and is now doing a semi-private lesson with her horse Axel. She liked weaving in and out of the pilons to place on some rings and they played red light green light with the horses.
Jack had a much more relaxed day with his friends and enjoyed Water Wednesday! He said his favourite part of the day was smashing water balloons into the grass!
Madison has finished JK and is ready for the summer!
Madi spent her first day of summer getting her bike fixed and then going to do some work with Stephanie. She did a great job building strength using the FES machine. Setting 20 for 20 minutes!
At the end of the day, Madi & Jack made another trip up to Dog Tales. This time they were asked to be on the set for the Dog Tales reality show being filmed, highlighting the amazing facility and their adoption process. The show is currently on The Bell Chanel, Gusto. No matches this time but it was wonderful to see the room being sponsored by members of our extended family.
We can’t believe we made it through this School year! Going back to work, Madison starting school and keeping up with appointments and therapies was one of the hardest things we’ve done. We couldn’t have managed without everyone’s help- thank you to so many of our family and friends for helping us survive!
Madi Moves 