1st SDR Anniversary

1 year ago James had SDR surgery at St. Louis Children's Hospital performed by Dr. T.S Park. What a year it's been! We certainly didn't expect what this year has placed before us with a global pandemic impacting James' intense therapy schedule but we've tried to make the best of it.

SDR has given James a great foundation to build from. What do I mean by that? Decreasing the level of spasticity has helped James experience a level of flexibility that wasn't possible before SDR. His transitions (laying down to many forms of sitting or standing) have really improved as we look back to where he was a year ago. He has also improved in getting into a 4-point crawling position regularly. From lying on his stomach he can use his core and shoulder muscles to lift up onto his elbows, brace, bend and pull his knees in and then push into the four point position. It's been difficult for James to use his walker, but with time and practice, he's becoming more confident. These are "inch stones" we celebrate today. We have a long way to go to achieve milestones but we keep on keeping on. One step at a time (and sometimes even some steps back before we learn a new way to move forward). Each of these gains mentioned would be so much more difficult without SDR for James. It's also important for us to remember that SDR may reveal other possibilities in years to come, given James (and we) work hard continuing to build from the reduction of spasticity he now experiences.

Celebrating 1st SDR Anniversary

Our post-SDR journey hasn't been one that blows people away with the sudden before and after difference in gait or mobility and this has been something Mike and I have had to adjust to with time. We know that our experience is unique; James is unique and our experience will be different from others. There are so many factors at play that contribute to this. That is okay.

We feel SO thankful that James had SDR before this pandemic started. Our fundraising events in the year leading up to his surgery would've looked incredibly different (or even delayed) if his surgery had been scheduled in 2020 (which it originally was before we got a cancellation date - praise God!) We are so thankful for our many donors (friends and family as well as many kind acquaintances or even strangers) who made it possible for James to get SDR and the many hours of private therapy that have followed. If you are new to our blog and want to learn more about what SDR is and our experience before and after the surgery (or would like a refresher) I've linked a number of blog posts below:

What is SDR?

Getting Settled

Pre-Op Appointment

Physical Therapy Assessment

Day 0

Day 1

Day 2

Day 3

Day 4

Day 5

Outpatient Therapy Begins

Outpatient Therapy Week 2

Outpatient Therapy Week 3

Goodbye St. Louis!

Post-SDR Rehabilitation

Happy 1st SDR Anniversary James! We are so proud of you and how hard you work each and every day!

September 2020

Summer was just getting started when we posted our last update and now we've recently said hello to fall! September 2020 has brought many changes to our routines. There's lots to update you all on - here we go!

In my last post, I mentioned that we were accepted in the Holland Bloorview augmented communication program. Our virtual appointments with our Holland Bloorview team (a speech and language pathologist and occupational therapist) were very regular throughout the summer - for a period of time we met 3 times a week! To be honest, the journey of finding ways for James to communicate comes with it's fair share of frustrations. The development of speech has been a VERY winding trail of a journey. All day long, there are situations requiring communication. This piece of art resonates with our current stage of speech development, and reflects what we hope and desire to open up for James. Although, I'd add that communication goes beyond only "what I say", to include other types of social communication (sign language, augmented forms etc.) I think this piece offers some insight into the expanse of the inner world.

Under the guidance of our team from Holland Bloorview, James began using what we call a "core board" (77 words with symbols on a laminated sheet of paper) which is the "low tech" option. The goal was to model and have him use some core language by pointing to the symbol (ex. eat, drink, play, etc.) instead of relying on someone else to interpret his wants/needs. James knows theses words and has heard them many times but until recently hasn't had a way to access and use them. This is what it looks like:

The next step was to see how James would respond to a "high tech device". We've previously used another high tech device called PODD earlier this year which didn't have the results we were hoping for. It's difficult for James to not use the high tech device as a toy. So we trialed a new device for 3 weeks called Unity and gave it our best shot.

However, we discovered as a group that it was just too much for James at this time. That was a big disappointment for Mike and I. It felt like what we worked so hard for this summer resulted in ending where we started. We went full circle back to the low tech core board ("James' words" we call it). Our Holland Bloorview team will continue to work with us over the next year along with our Campbell's school team about how to increase James' vocabulary and use of the core board as well as a communication book (the low tech version of the Unity program we trailed) that we will get soon. James might be ready for a high tech device in the future but as we found out in the trial, not yet. The journey of speech and communication really continues to be one step at a time.

James returned to osteopathy with Judy. She challenged him with exercises that develop his core and help him get up into a four point crawling position.

James also went back to see another Judy - this time ABM (Anat Baniel Method) Judy. Sometimes we return to ABM as a type of "tune up".

James is getting more success pushing his wheelchair on his own now which is fun to see!

James started JK at Campbell's Children's school this month! We have been so impressed how well he's adjusted. He goes on the bus to and from school every day with no problem! Campbell's is a special needs school at Grandview Kids in Oshawa. James gets physiotherapy, occupational therapy and speech therapy built into his weekly schedule which is fantastic. September has been assessment month to figure out what equipment James will need and then the school will order for him. His physiotherapist has found some great equipment to encourage James' independence around the classroom.

James had his annual hip X-ray in August and unfortunately, the results were not good. His hips have further migrated which means the hip bone is moving further away from the socket. We are to repeat this X-ray in 6 months and meet with Dr. Camp, an orthopaedic surgeon from Sick Kids who is monitoring James' hips. In the meantime, daily weight bearing activity (standing, walking, 4 point crawling) is incredibly important for James and his hip health. We are also trying out a hip brace for James to walk in (helps the scissoring or crossing of legs that James still has problems with) as well as a brace to wear each night. We hope that this can not only slow the migration of his hips but also help improve the percentage.

Trying out the SWASH brace with Eric, our Orthotist from Design Prosthetics and Orthotics

We saw a new therapist named Mariana from WeFlowTherapy last week. She made us an abdominal binder that James wears every night and periods of the day sometimes as well. The purpose of the binder is to provide tension to the fascia (connective tissue surrounding the muscles, organs and bones) and to help stimulate the productive of collagen to strengthen the fascia system. This is a whole new avenue of learning that I have just begun. It's very interesting. We were initially encouraged to get an abdominal binder by our Grandview speech therapist to help James vocalize more by providing support to his torso. There's many other benefits too. We hope it will make a difference with continued use over time.

Here's some photos & videos of some fun we've had this summer:

Reopening

Hello everyone! Thanks for checking in again with our journey with James Michael. It's felt like quite the grind during this covid-19 season of life we all find ourselves in. Doing James' therapy strictly at home has been hard to say the least but we've been managing okay and have tried to make the best of it.

Throughout the past month, I have had 4 phone conversations with Holland Bloorview (children's rehabilitation centre in Toronto) about augmented communication for James. We were referred by our local children's centre, Grandview, in January and just recently, have been officially accepted into the augmented communication program after submitting many videos in the hopes of meeting their screening criteria. It was a stressful process to say the least but we're very happy that James has been accepted to the program and look forward to their expertise to help us further develop James' communication skills in the form of an augmented device of some kind or possibly multiple types. We start next week to meet virtually on a weekly basis. A couple blog posts ago I described the PODD system that we're currently using to communicate with James, along with some low tech picture boards too. If you missed that post, you can get caught up here.

Here are some highlights of our therapy at home.

James using the Hypervibe vibration plate

The vibration plate has been wonderful to own especially as we're doing lots of home therapy. It helps strengthen muscles and bones as well as improves circulation. I've been using it in my workouts too - a bonus!

We try to get James in his creeper crawler once and awhile. We want him to increase the duration he can stay in the four point position.

Watching Peppa Pig while in the creeper crawler

James uses his stander at least once a day. It's definitely the most used piece of equipment we have for James.

We've incorporated some fun outdoor exercises too. Thanks to Tim and Lindsay Wadsworth for giving us a kids sized basketball net!

It's ideal when exercise can also be fun!

It was a true joy to take James to SMILE therapy for kids on June 1st when they reopened. Therapy is slowly starting back with lots of precautions in place. James goes to SMILE on Monday's and Tuesday's where he does physiotherapy (specifically Medek), strength training and occupational therapy. It has been so nice to see our team at SMILE again. Gradually, other therapy clinics will open again too. Grandview (our local children's centre) will likely be the last to offer therapy again.

James on his first day back with Kayla (left) & Jo-Anne (right)

Jo-Anne & Jamesy

Strength training with Nicole & Jamie:

James returned to see his massage therapist, Shannon, yesterday. It was so good to see her! James' body was in desperate need of a massage. He was very tight. We'll be seeing her again next week and then every other week after that.

We had a very exciting and much anticipated delivery 2 days ago - James' first adapted tricycle! We want to thank the Whitby Rotary for their donation a couple months ago to help us purchase this for James as well as our many donors throughout the last 12+ months. You have made this possible for us to provide for James and for that we are forever grateful. This increases James' freedom significantly and the therapy and fun it provides is an awesome 2 in 1! James LOVES it! The trike has the ability for him to pedal on his own and also for his feet to pedal while we push him. It'll be well used this summer! His smile says it all when he tried it out for the first time:

We've had some fun together during this interesting phase of life. Here are some photo and video highlights:

Walking on the waterfront trail

Daddy and Shae had fun recording Shae's Family Elmo Song.