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  • Alison Wilson

A much needed update!

Updated: Jan 1, 2022

Look who's on the Grandview Kid's home page!

Hi everyone! It has been a long time since we posted an update. In fact, this is my first post of 2021 - is it too late to say happy new year?! Probably! I will try my best to write about all the happenings throughout the last number of months but keep in mind - if you like the day-to-day chronicles of the Wilson's, follow Ali on Instagram at @alisonlorene to see my [almost] daily stories and occassional posts.

After spring break, Campbell's was closed like all schools across the province so we took the opportunity to do our first ever intensive at SMILE (sensory motor integrated learning experience) therapy for kids in Vaughan. An intensive just means going every day for multiple hours. We did 2 hours a day for 4 days in a row last week and James rocked it! He worked so hard. The last day they gave him a superhero cape and a t-shirt that says "I can do hard things". Boy is that ever true of our warrior.

James has really grown up this past year in so many ways. School has really contributed to this. I posted a little about Campbell's Children's school in our September 2020 post. We have felt so thankful that James was accepted to Campbell's and he was recently accepted to attend next school year as well! Kids typically get a 1 year acceptance; only some get 2 years. His therapists really believed (as well as Mike and I) that another year would really help him achieve the goals we have set to make the transition to a mainstream classroom at Whitby Shores Public School more successful for grade 1. James gets weekly physiotherapy, occupational therapy, and speech therapy built into his school day which has been fantastic. This is all publicly funded. James connects so well with his therapists, teachers, ECEs and kids in his classroom. There were certainly some adjustments in the early weeks of school but overall, he has done really well.

In the first couple months, I often heard that he needed a little snooze mid day!

They are such great encouragers!

James loves taking the bus to and from school! Our bus driver, Roger, is the best!

We've been really impressed with James' learning throughout the school year. He recognizes 32 sight words right now!

I take James out of school every Wednesday afternoon to go to SMILE for 2 hours (one hour of physiotherapy and one hour of occupational therapy). It is so beneficial for James and if you've been a regular follower of the blog you'll know that we are frequent attenders of the clinic and big believers in the SMILE team. They are such fantastic therapists who love James and believe in him big time! Check out the large variety of exercises they do with him with lots of neat equipment:

In the last post I updated about James' hips and the S.W.A.S.H brace that we tried out. Since then, James has had another hip x-ray and we settled on the Maple Leaf brace that James sleeps in every night. The brace is used to help with proper alignment for his hip joint. We hope that it will improve the migration percentage of his hips (the percentage of which the head of the femur is outside of the hip socket or the acetabulum). As it stands now, James' right hip is at 58 degrees and his left is at 49 degrees. James will continue to be monitored yearly by Dr. Camp, an orthopaedic surgeon at Sick Kids. We really hope James will not need hip surgery in the future although having a higher level of CP like he does (level 4), puts him at a higher risk. The good news is he is not in any pain. X-rays are necessary to monitor the migration percentage because kids don't always show any signs of pain even with extreme hip dysplasia.

Eric trying out the maple leaf brace with James
Getting fitted for new AFOs

In September's update we explained the steps we've undergone with Holland Bloorview's augmented communication program. After we were unsuccessful with the high tech device we tried with James, he started school using the first system we started with in May 2020 - the core board. A couple months later, a communication book arrived which was the low tech version of the Unity system we had tried in the high tech form. The regular and repetitive use of "James' words" as we say has really helped develop James' expressive language. He's learned the motor plan of the communication system (knowing where to find the icons/words). In late February, our speech therapist with Grandview (who James sees during his school day) and our speech therapist at Holland Bloorview both agreed that James was ready to try the high tech device again. After nearly 2 months of regular use, submitting videos & many meetings with our speech team, we're happy to say he has been approved for the high tech Unity device! This has felt very satisfying since it's been nearly a year since we first started with the Holland Bloorview's augmented communication program. Here's a photo of the device. This is with vocabulary builder on which means that not all of the icons are displayed - Just the ones that we're working on currently with James. As you can see there is a specific placement for each icon. This is the main page. Each icon is like a file folder that has other icons and pathways to chose from. James has really gotten the hang of it!

Here's some videos to show you how James uses the device. These are 2 of many others that we submitted to Holland Bloorview to show his successful use of the device during the trial period.

Here's a compilation of other photos over the last number of months - birthdays, Halloween, Christmas, Easter first trip to the dentist, etc! There's a lot to catch you up on :) Some highlights:

We tried a walker called the "kidwalk" for a number of weeks. We learned it's not the best for James. We're still looking for one that James can use more independently.

The nimbo walker is what we use at home the most. We're continuing to practice regularly and work on his endurance.

It doesn't feel right to end without an update about Shae. She and I spend a lot of time together since the Wilson boys are at school. Shae loves going to preschool two mornings a week. She's full of energy and spunk and we have no concerns of her starting JK in September - she will love it! She loves wearing dresses, singing Frozen & Daniel Tiger songs (she knows all the little jingles!), dancing and going to the park. She has a lot of love for her brother.

She has a big love of birthdays so celebrating her 3rd birthday in November was a blast! I love this video of her so enjoying her family sing her happy birthday!

Thanks for reading :)

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