Goodbye St. Louis!

Our time in St. Louis has come to an end. James had his last outpatient therapy appointment today and we saw Dr. Park yesterday. He's happy with the progress James has already made since SDR. We are to send the team videos of James in 6 months to see how he's doing.

James has responded really well to therapy here which we are so thankful for. Ally and Addy (supervised by Molly) were our therapists for the past 3 weeks. Now if James could respond just as well to his parents doing our home program, we'll be doing great!

James and his physiotherapist, Ally

James and his physiotherapist, Addy

James has been really motivated to walk which is encouraging. He gets fatigued quickly but we'll continue to work on his endurance. We've been excited to see him require less and less assistance from us.

We'll miss the long hallways at the Chase to practice...

And one more, just because she's cute!

We're all packed up and ready for our long road trip tomorrow. We've had a great month in St. Louis with a world-class team but we are ready to get home. Thank you for the support everyone. We so appreciate it.

Outpatient Therapy Week 3

James received his new walker this week and has shown some real enthusiasm at trying to learn how to use it. It is a "reverse walker", meaning that the main structure is situated behind him leaving an open front. It also has a supportive harness underneath and lateral supports. We're experimenting with how to best use it for James' size right now as it is a little too big for him at the moment.

It requires a lot of concentrated work from James to simultaneously maintain a standing position, remember to continue firmly grasping the handles, then to initiate steps while shifting, bearing and maneuvering his body weight, avoid scissoring habits, avoid having his legs fall too far behind while his upper body falls forward, and to align his steps with the 'heel-toe' rhythm. There is a ton to practice and strengthen. Currently, these steps from James are often floppy and inconsistent. However, you can tell he lights up like a Christmas tree when he experiences success.

Goal setting is a double edged sword as you try to balance accepting the limitations of what reality lays before you while continuing to press forward and challenge yourself to accomplish something outside of your grasp. One of the goals for James created by the SDR team in St. Louis is to walk 15 steps in this walker without assistance. It is really rewarding to experience James enjoy his walker, even just for a number of steps.

James' ability to communicate his thoughts using words would be a huge asset as we navigate pushing him to achieve while recognizing when he has hit a boundary and shifting to adjust accordingly. As many parents of CP warriors may agree, the kid works differently for their therapist then they do for the parent. The first 10 steps could be fun and laughter, and the next step a total meltdown. Waiting for verbal skills from your child is a whole separate marathon to run for us as parents. But for now, we draw upon patience, routine and sustained waiting.

James has also tried to use a "forward facing" walker to help break his habit of extension and flinging back.

Shae has made sure to keep us on our toes as parents with a healthy dose of both laughter and anxiety. This week she has drawn with crayons on the hotel walls, figured out how to quietly open our front door and run down the hallway on a couple occasions, has entered the elevator and closed the doors ahead of us, turned on the bath tub water and has adopted James’ new walker as her own frequently calling for her new friend “walker, walker, walker”. Shae is also a thoughtful cheerleader for James on her own terms. If you observe her long enough you will find that she will brush up beside James while he is using his stander watching Elmo song compilations on YouTube, she will lay beside him and drink her milk with him on the blanket, and she will bring toys over to James hoping he will play with them.

She loves adventure and to explore new things so one morning I took her to the "City Museum" in St. Louis. I've never seen anything like this place. Their motto is "if you see a way in, follow it". You can find pathways around every corner even through the walls and outside. The City Museum is a museum of largely repurposed architectural and industrial objects designed for kids to treat art like they would nature - climb, touch and explore it! It reminded me of the Iron Throne from the Game of Thrones, but for kids.

Check out this slide!

Lastly, the longer fall season in St. Louis meant we could get outside for some fun in the leaves together this week.

Our time in St. Louis is coming to a close. Our last day of therapy is on Tuesday and we start our trip home on Wednesday of next week.

Outpatient Therapy Week 2

Today in therapy, since our walker hasn't arrived yet we decided to try a different one that was available. James rocked it! Even despite his "super loose" legs for the time being (until he gains back some more strength). He was so excited to try out a new walker, you could see it in his eyes. Once he felt a little security that he could do it, he walked about 35 feet with Addi assisting him. But notice - no harness! Since his brain still remembers what his legs used to do, which was scissor when stepping forward, he will need to train himself that he doesn't have to do that anymore. Each week is unveiling small progress and a greater confidence.

We've put James in his stander a couple times since his surgery. He's also getting used to stretching with knee immobilizers. We will gradually increase the total time he's wearing them each day (the goal is to wear them for 8 hours while he sleeps each night). .

We've had a great time with my parents here this week. We went to the zoo on Shae's 2nd birthday on Sunday and the science centre yesterday together.