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  • Alison Wilson

Half way to our goal!

Updated: Nov 7, 2019

Thank you to Kevin May for reformatting our blog! You’ll notice the new look and a very exciting feature - you can subscribe finally! Don’t miss a post in this journey we’re on and you are on too as you support us in so many ways. What an incredible village we have! We have raised half of our goal already! We are thrilled about this and SO thankful for all of YOU for helping us achieve this!

Thank you to Kaylea Beveridge for raising over $1000 through the “Share the Love” photoshoot (photo credit goes to her in the beautiful photos above). It was so generous of you to share your time and expertise to support us. Many others are donating items in our silent auction for the June 1st pub night - we will be sure to post some of these items on our website ( closer to the event so you’ll know what to expect! Tickets for the pub night are selling quick so be sure to get yours on the website or with us in person. Tickets can also be purchased now for the Step onto the Road concert on September 8th.

James continues to work hard daily in our busy therapy schedule.

Monday’s we have back to back physiotherapy with Jo-Anne and Kayla, followed by occupational therapy with Kali. It’s hard work which as the pictures show he doesn’t always like. Building strength is so important as he prepares for SDR surgery.

Tuesday’s we have Grandview every other week and Conductive Education on the off weeks.

Wednesday’s James has a massage every other week and we’re also adding speech at Grandview with Christine.

Thursday’s he has speech therapy with Sarah. She comes weekly to our house and we love her! She’s been using LAMP (language acquisition motor planning) with James sometimes (a program where he can select words on our iPad). She uses pictures to help James communicate as well as working on his sounds and lip and tongue movements - all necessary pieces for language development. A common question we get is what words does James say? He uses yes and no quite often as well as more and again. Many other sounds are developing and is encouraging to hear. Sarah sees and hears things that I don’t so I’m very thankful for her weekly involvement and work with James! She’s very encouraged by his progress. It’s also important to note James’ therapists are all very encouraged (as are we) by his cognition and understanding of language. We trust and pray that the expressive language will develop more. He can get quite frustrated when he‘s having difficulty expressing what he’s wanting. I don’t blame him.

Friday’s we have Conductive Education at the March of Dimes again. James loves this program! While he’s there, Shae and I have time to hang out which has been fun to spend some one on one time with my girl!

Two Saturdays a month we swim at Grandview’s pool in Oshawa. The kids love it! It’s a salt water therapeutic pool (it’s warm!) and good for relaxing James’ muscles after a busy week.

And that doesn’t include the random other appointments (paediatrician check ups, Shae still has check ups at Sick Kids to make sure the hemangioma on her eyelid is not returning, and James has regular opthamology appointments there as well. We’ll be due for another hip x-ray soon to be sure his hips are not subluxed any further than the 30 degrees they both were last year).

We continue to use many pieces of adaptive equipment at home (stander, walker, crawler, and leg gaitors for stretching and standing practice). We’ve also started researching options for a more supportive chair for James to eat. He still needs support in his core and trunk to remain upright for long periods of time and of course eating is a time you want to be sure to be upright. We’ve also started looking into wheelchair options for James as well. There’s lots of options out there and we’re having to decide if we go with a stroller that he can grow into for a couple years (he’s a long kid and is already growing out of the stroller we have) or whether we make a decision about what kind of wheelchair to get. That is seeming difficult as we don’t know what James will require after SDR.

That gives you a little glimpse of our day to day. Feel free to follow me on Instagram or add me on Facebook as I post in the stories daily about James’ therapy and what the kids are up to - photos like this!

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