Day 0

A whole gamut of emotions occurs when your child is needing surgery. You cannot avoid the feelings of fear, doubt, and anxiety that simply come with navigating the terrain. Yet, you also experience a sincere hope, trust and peace knowing that the long-term benefits far outweigh the short-term strain. James was a champ today. We woke him up nice and early at 5:00 to get him to the hospital for 5:45.

Left to Right: Lamb, James, Walrus

Today, being surgery day, Day 0, we found ourselves wanting to write specifically about the expression of gratitude that flows through us toward all those that have been a source of life for our family.

SDR surgery is a life-long gift to James. He will now live without spasticity pulling at his muscles, stiffening his movements, scissoring his legs, initiating pain and “fighting against him” as he works towards his goals.

Before Surgery

This gift of SDR was channelled first through the tireless efforts of his mother who has researched, made numerous connections to a variety of therapists and medical practitioners and has sparked new heart warming friendships within the beautiful community of people that have CP or are parents of kiddos that have CP.

Alison has truly devoted all of herself into the pursuit of seeking “the good” for James. She is truly deserving of the title “warrior”. If love can be summarized as ‘the gift of self for another’, I can wholeheartedly attest to the fact that she frequently has James and his well-being on her mind before her own. She has shown James in his young life the gift of trust, love, and safety, alongside the values of grit, perseverance and tenacity - all of which James will need to draw from in his lifetime.

This gift of SDR for James is also largely channelled through the love of our family, friends and community. Literally, hundreds of people have given of their time, effort, money, prayer, and concern for James. As a family, we have been on the receiving end of a wave of generosity to raise money for the surgery and rehabilitation costs including:

• donations through our GoFundMe campaign and Handi-Care Int.

• Kaylea Beveridge’s “Share the Love” photography event

• the Bracebridge Birthday Carnival and Yard Sale hosted by Phenix and Journey

• Deb Nash’s High School Quilt Sale

• Lennox and the Potter family birthday donations

• Hannah Wright's triathlon in "Long Course Weekend" in Wales for James

• Emily Penner's Bake Sale at Oxford University Press

• Caleb Petke's charcuterie/cutting boards sales

• the Journey with James Michael Pub Night Fundraiser at Fionn MacCool’s

• the Step Onto The Road Concert

• the Mike Gregoire Memorial Golf Tournament

• the Hope Cup Charity Golf Tournament

This kind of generosity flows out of the goodness in people simply wanting to give, wanting to bless a little child who is on a different path. Alison and I are truly moved at what happens when we share in the journey of our lives with each other. When we lift one another up in prayer and when we choose to not close ourselves off from the world, but to open yourself up in willingness to travel alongside one another throughout life's adventures.

You have shown James that instead of being pushed to the margins of society, which has historically been the place for people with disabilities, he has instead been valued, worthy of your time and affection. You have revealed to him that he matters and that his well being is important, as he too, is a part of humanity, in all its diversity, that we share together. The care of so many has gone into blessing our little boy and we are eternally grateful.

Before Surgery

It's surgery time

Waiting...

Post-Surgery Consult with Dr. Park

Recovery

James has already woken up feeling quite agitated and uncomfortable. We have been told by nurses and other parents that this is normal and to be expected over the next few days. We are here in the hospital for five days not including today (Day 0).

Physical Therapy Assessment

James did so well at his physical therapy assessment appointment this afternoon. The entire appointment was videotaped so that Dr. Park can refer to it to compare when we send him in videos of his progress months later. I love seeing James in therapy. I'm reminded of how far we've come - both in terms of mobility and his overall attitude and tolerance to therapy. He was smiling the entire appointment today! The therapists were so impressed by his happy and agreeable attitude. It made me proud.

James and Shae had some down time this morning together. Our apartment style room has been really nice to hang out in.

My parents arrived this afternoon! We're so happy they're here to be with us and help out with Shae. James will be an inpatient from Thursday - Tuesday.

Tomorrow is the big day! The surgery is at 7:15am St. Louis time (8:15am Ontario time). It'll last approximately 4 hours. We so appreciate your prayers. We have an incredible village backing us in prayer. Thank you!

Pre-op Appointment

Today, Mike received a great birthday present - our pre-op appointment with Dr. Park! It was so good to see him again (we met him in August when he came to our annual Ontario SDR picnic). We had a great appointment! In addition to SDR, Dr. Park will perform PVR (partial ventral rhizotomy) during the same operation using the same incision location. This will specifically help James’ scissoring (the crossing of his legs when he tries to take steps). He spoke about this possibility with us when we met him in August too. We’re very excited about what this means for his ease of movement in the future. With the addition of PVR, his recovery will take longer at the start but will be well worth it. For a refresher of what the surgery is, check out our SDR post.

The hospital is beautiful! We were there for the majority of the afternoon seeing a variety of staff and ending with seeing "Sir Dr Park" who defeats the dragon of spasticity! We've been reading a book written by a fellow SDR parent (can be bought on Amazon) about the SDR surgery. He is such a nice man and is very positive about James' outcomes post surgery.

As you can see from the pictures, Shae was rather tired and spirited during our pre-op appointment today which made for a difficult time juggling managing Shae's behaviour while listening to the details of James' surgery (appointments during nap time are not ideal which Shae made very clear to us!) It was so fun to see Dr. Park's office with the walls covered with photos of kids (and some adults) who have had SDR - some of which we know! Here are some from Ontario:

Aidan, Dr. Park's first Ontario patient in February 2014:

Evi, who had SDR March 2018:

There were some group photos of our Annual SDR picnics too:

We also got to meet up for lunch with Virginia, a friend from Ontario who also has had SDR as an adult. She is here with her aunt as she had PERCS (muscle lengthening surgery) with Dr. Dobbs last week. It was so nice to see her! She's been a great encouragement to James and our family. Her blog is very much worth checking out.

We have a physical therapy assessment and filming appointment on Wednesday afternoon and then surgery is scheduled for 7:15am on Thursday. We're to be at the hospital at 5:45am! Thank you for your prayers and encouragement everyone.