SDR Surgery Update

We are so thrilled to update you all that we have been bumped up on the St. Louis SDR wait list to February 2020! We are so thankful for this! We’re still on the wait list so there’s a chance we could get an even earlier date. We’ll see! But for now, we are feeling the blessing of the many prayers that have been focused for this specific request.

James has been at Conductive Education camp each morning for the last couple weeks and loving it! Last week was a pirate theme. He’s been in a group of about 8 kids ranging in age. It’s been cool to see him with older kids (10 years old) to look up to.

We enjoyed some time on Lake Vernon with my grandparents and cousins, Emma and Jake, on Canada Day. The kids enjoyed boating with Grandpa and swimming! And Shae was very interesting in Annie the dog but didn’t want to get too close to her!

We will be trying out some new standers for James at the end of this month. The one we are using now isn’t the best for James. We’re looking for one that keeps James more upright and legs wide apart (abducted is the physio term) for his hip health. James is on hip surveillance as his hip X-ray last year showed 30% subluxation on both sides (meaning his hip bone is 30% out of the socket). Of course this is concerning and a reason to get as much weight bearing activity as possible (why the stander is very needed for his hip development). We will keep you posted as to what the X-ray results are next month. We hope that nothing has changed from a year ago.

Thanks for reading! We encourage you to subscribe to our blog if you haven't already to not miss an update! You can do so in the menu options above.

The next phase

If you've checked our GoFundMe page lately, you've seen that we are doing very well in our fundraising efforts! In fact, we've met our goal of $140, 000 in just over 4 months! Wow! We are incredibly grateful and amazed by our community both locally and abroad that have contributed to this total. Thank you so much everyone!

So, where does this leave us now? We want to update you all about that. The projected costs we shared here included the funds needed to cover James' surgery, pre-surgery physiotherapy for a year and post-surgery therapy for a year. As we look into the future, there certainly will be other costs that we can foresee - the big one being regular physiotherapy for years to come. Beyond the intensive year of post-SDR therapy, James will require regular physiotherapy to maintain his mobility including Conductive Education at the March of Dimes, SMILE therapy for kids in Vaughan, osteopathy in Whitby, and horseback riding at WindReach Farms to name a few. We also know there will be equipment costs in our future beyond the one year timeframe we've budgeted for in the breakdown we shared. For this reason, we are going to continue with our fundraising events we have already planned for the fall. We want to celebrate all that we've accomplished as a community to raise for James and to look beyond to his future needs in the years to come. If you have any questions about this, please don't hesitate to talk to Mike or I.

With that said, our next fundraiser will be a concert at the Whitby Courthouse Theatre on Sunday, September 8th, 2019 - Step onto the Road. Come enjoy a concert featuring 13 original folk/country/blues songs written by Michael Wilson and performed with a full band exploring what it means to live committed to the values of family, walking the Christian path and celebrating what is local. The concert will be followed by a reception of drinks and appetizers with CD's available for purchase. Visit our website to purchase tickets.

We want to highlight some caring individuals who have done awesome things to raise money for our journey with James Michael. You'll remember the Bracebridge Birthday Carnival all in support of James (if you haven't read about it yet, you can here). The same kids, Phenix and Journey, decided they weren't done fundraising for James! They had a yard sale and gave all the proceeds to James. They set up a table with baked goods and a variety of other snacks to sell all in support of James! Their hearts are so big and we're so thankful for their kindness and generosity (and of course modelled by their amazing mother, Katie Peleikis).

Our friend, Deborah Nash has also initiated a way to raise funds at her high school. She is in a parenting class where her and a friend have been sewing quilts. They decided to sell tickets at their school for the quilts all in support of James! Thanks so much Deb!

The kids are loving their matching tricycles this summer!

Journey with James Michael Pub Night Fundraiser

Just over a week ago on June 1st, we had our first local fundraiser - Journey with James Michael Pub Night Fundraiser at Fionn MacCool's in Ajax. It was a blast! A lot of planning went into the evening with our hard working committee. We couldn't have done it without them (Jim and Donna Wilson, James and Heather Ann Penner, Pam Ronson and Kevin May, Mike and Darlene Costas and Pete Sellenkowitsch). All of these people brought their unique skillsets, expertise and time to the table and we couldn't have been happier with the result on June 1st!

Here are some details of the evening:

- Each guest received a bracelet with the initials JWJM on it which stands for Journey with James Michael when they arrived to Fionn's. Pam Ronson and Kevin May sourced out where to get the custom made guitar picks, Caleb Petke drilled holes in the picks and Donna Wilson got the black string to make the bracelet. A real team effort! The bracelets, we hope, will be a reminder for each guest that they're partnering with us in this journey with James (and Mike and I). Caleb also made an amazing sign - #journeywithjamesmichael that we hung above the band to draw attention to the amazing community that has rallied beside us to cheer on James and our family.

- We put together a band that we called "The Journey with James Michael Band" ! It was an honour to play and sing with such talented musicians from our friends and family`! We played a great mix of genres (Country, Rock and Motown) to keep the energy for the evening going strong. It was extra special to have a 3 piece horn section join us. We're so thankful for all of their musical talent, their friendships and their part in making the evening really fun.

A Huge thank to our all star band!

Tim Wadsworth - vocals, acoustic guitar; Jeff Knight - vocals, bass; Mike Wilson - vocals, electric guitar; Liz Clark - vocals, Alison Wilson - vocals; Jeff Teed - keyboard; Ryan Jerome - drums; Jordan Wilson - percussion; Ken Janes - trumpet; Brandon McMackin - trumpet; Marcus Baskie - saxophone; Kevin May and Pete Sellenkowitsch - sound engineering

- Signature drinks - there were 2 specialized drinks of the evening - $1 of each drink was donated to James. They were called "the James Michael Mule" and "CP Warrior"

Jamie Holbrook enjoyed the signature drinks :)

- Custom-made Key chains/Magnets - these were made by Donna's coworker, Sharon. I have one on my key chain now! They also have a magnet on the back to put it on your fridge instead.

- Amazing Raffle and Silent Auction Items - we sure didn't have a short supply of items for our raffle and silent auction. There was lots of variety - original artwork by a variety of artists, Raptors tickets, sports jerseys, coffee table, gas BBQ, photography session, VIA rail tickets - the list goes on! A major thank you to all who donated items! We truly felt blessed by our community through all of these gifts. A special thank you to James Ruddle who also performed a live painting for the evening.

- The night was MC'd by our friend, Pam Ronson - and she did a great job of getting 200+ people's attention, giving the much needed direction and announcements throughout the evening and doing it all with an entertaining playfulness. She interviewed Mike and I and gave us the opportunity to tell a little more about our journey, both the present and the future. She also took the time to give a prayer of blessing over us which was so special.

- DJ music by Graydon Ronson got everyone in the pub dancing! He did a great job of continuing the fun atmosphere.

All in all, we exceeded our expectations for the evening. Our grand total of funds raised on June 1st was $37, 012! What a huge success! It certainly does take a village to raise a child and our village showed up with generosity and support of James Michael in a big way. Thank you so much everyone for your incredible support!