- Alison Wilson
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.