Post-SDR Rehabilitation

It's been good to be home! James' schedule has kept us busy 5 days of the week with at least one appointment each day and many home exercises and stretches to do also. This Christmas break there's less appointments which means we do more home therapy (mum and dad become the therapists!)

Back at SMILE Therapy for kids:

It's been really exciting to see the difference in James' trunk using NMES (neuromuscular electrical stimulation). NMES sends electrical impulses to nerves. This input causes muscles to contract and helps build strength and range of motion. The video below shows the positive impact NMES has to correct James' trunk while tall knee walking (a great exercise to target core control, glute strength, hip flexion and weight shifting on lower extremities - all important skills required for standing and walking). We have a few of these machines at home to incorporate into our home therapy routine.

James enjoyed returning to the last couple conductive education classes of 2019 at March of Dimes. They have supported James' development in many ways (gross motor, fine motor, speech, social development and even potty training). He loves the program.

We're fortunate that our local children's centre, Grandview, has agreed to schedule James 3 times a week since being back from St. Louis to assist in his post-SDR rehab. That will continue into the winter months of the new year. We like this for a few reasons (he has wonderful therapists at Grandview, it's close and it's free!).

Shae has been an amazing cheerleader for James. It's so sweet to watch.

NeuroChangers has been a nice addition to our therapy program since being back from St. Louis. He uses the GE-O machine there - a robotic-assisted device in gait rehabilitation. NeuroChangers is the first clinic in Ontario to offer this type of therapy and the only private clinic in Ontario to offer pediatric gait training (and we live very close to the clinic - yay!). The machine can offer both passive and active modes to support James' gait pattern.

Last week James was fitted for a very important piece of equipment in his life: a wheelchair. James has outgrown his strollers and to prepare for his start in J.K in September, we knew this is a needed step of our journey. James seemed to like his new chair as he got measured and adjusted to get the right size ordered. The one pictured below is too big but gives you an idea of what we've ordered for him. It's a one arm drive so James will have the ability (with lots of practice we anticipate) to maneuver the chair with his left hand (his preferred hand).

We knew the day would eventually come when we would begin searching for a wheelchair. We see it as a tool that can aid him towards greater independence, freedom, and self-directed movement. He'll be able to use it for longer distances and offer him more control in his environment. From an able-bodied perspective a wheelchair can seem like a loss of something (why you'll hear phrases like "confined to a wheelchair or "wheelchair bound") or a reminder of something that you can't do (walk). But we've learned to see it more as a tool to assist James with interacting with others while conserving his energy as 15-20 steps is his max currently using his walker.

We've started researching stem cell therapy as our interest has been peaked from following one of our friends in James' conductive education class. Leyla's story with stem cells can be found here. When I was pregnant with Shae I found out about the possibility of storing Shae's cord blood with Inspection Lifebank for free through the CP sibling program at Mount Sinai. We saw this as an obvious yes - why not take advantage of the opportunity to have Shae's cord blood stored free of charge and the potential of using them in James' future rehabilitation? We weren't sure when or if we would pursue stem cell therapy but we've become more interested specifically for the development of speech as seen in some children through research at Duke University. As many would know, James' speech is quite limited and we so desperately want his language to be further developed. We're in the beginning stages of finding out more information from Duke University, the leader in stem cell research. We're also going to see a new speech therapist from SMILE therapy for kids starting in January.

The journey continues! Merry Christmas everyone.

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.