Colton VS. Cerebral Palsy

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Colton VS. Cerebral Palsy

Our journey through a Cerebral Palsy diagnosis to Selective Dorsal Rhizotomy in St. Louis with world renowned neurosurgeon, Dr. Park.

30/07/2022

Some sunshine after the storm. After three years of dark pandemic days these two finally got to hang out again. It was a good day. 💜

24/05/2022

This weekend, Colton had a big win. He finally learned the mechanics of riding a bike unassisted.

We weren't sure when or how he would do it, but here we are.

03/03/2021

Colton turned six last week! We are approaching the two year anniversary of his SDR surgery (April 2019) and he still surprises us often with new skills. Here he is, managing a 16 inch mid-stride jump and box jump with ease. His gross motor skills are so far beyond what we imagined possible even post-op. Thank you all for your support and encouragement, and for following along with his journey. ❤️

02/08/2020

We've been extra quiet for a really long time. As you can imagine, this year hasn't been what we pictured, but Colton continues to surprise us with his progress. Today I challenged him to go beyond sticking his landing from up to down, and try a box jump up that admittedly I thought was probably too high for him. But here he is getting it done. 😮❤️

07/04/2020

April 2nd was our one year post-SDR anniversary. We are still thankful every single day. At a year down, Colton is further along in his progress than we'd ever dreamed.

08/03/2020

Leading up to Colton's SDR surgery, just like his NICU journey, I was always looking for a window. A window looking into what life would be like post-op. What would he look like in six months? In one year? In six years? This is our window, at 11 months post op. 💪❤️ Looking forward to all the windows in our future.

29/01/2020

Inch by inch. Dreams do come true. 😍 In just a couple lessons, Colton has gone from tears and frustration to excitement and pride. He stays on his feet the whole lesson, he stands up without assistance when he falls, his legs and ankles are good and straight (as an ex coach, this makes me proud) and slowly but surely he's learning to move his blades forward.

09/01/2020

Colton has been asking for years now to learn how to skate. Before his surgery, we tried. He could barely lift and manage his legs just standing in skates - nevermind on the ice. We pulled him from the program and told him maybe it was something he could do when he got bigger and stronger. I (me, mom 👋) wasn't sure that was true but I've always wanted to encourage hope in him.

If any of you know my history, you know that I played hockey growing up and then coached hockey for years (long before Colton). Hockey has forever been part of my life and my family.

But I wasn't sure it could be for Colton.

I wasn't sure his legs would give him that chance.

He's been rocking his post-op recovery and our new winter schedule is pretty amazing. It's much less physio and more typical sports for his age group. He's skiing (seriously! and loving it), swimming, doing gymnastics, dancing and training in Brazilian jiu-jitsu. He loves every second his activities and we love watching him!

Monday, we let him take the ice for a second time.

He hasn't stopping asking and I haven't stopped hoping. There were tears (there's almost always tears when little ones start!), it was really tough for him, but he absolutely rocked the hell out of it.

I cried ugly tears and all the parents in the rink certainly thought I was crazy, but I was so proud of the little man and how hard he fights for his progress and what he wants. Determination isn't a strong enough word for what lives inside him.

And all this, because of yes his hard work - but first and foremost, because of SDR. ❤️

27/11/2019

Colton is back in Toronto this week for a four day physiotherapy intensive. He's doing so well! Eight months post-op.

21/10/2019

A LONG OVERDUE UPDATE // Colton is almost seven months post op and his progress has been nothing short of amazing. We used to watch him struggle with his balance as his gait deteriorated through every growth spurt, no matter how hard he worked with physiotherapy. We watch in awe now, as his run and walk continue to improve. Typical sports have started taking the place of physio in his routine, and he continues to make progress every day. Here's a video that might not look like much, but shows how good he is now at managing his body and his balance.

21/08/2019

BLOWING OUR MINDS // Here's today's report from our physiotherapist. We are in the process of having Colton's treatment and file transfered to a different CTC in Ontario, as we are about to move to a more rural area. Today was his last day with his current physiotherapist, the one he's worked with since coming home from the NICU.

The GMFCS is a 5 level clinical classification system that describes gross motor function of people with cerebral palsy on the basis of self-initiated movement abilities. For the most part, people with cerebral palsy - whatever the level - stay on their curve as they develop and grow.

The first point on the graph was mapped just before his surgery, the second was mapped one month post-op, the third was marked today - only coming up on five months post-op.

In six months, because of this surgery, Colton has moved from a score below 75 to a score of 90. How crazy is that? He's technically not even half way through his rehab journey and already this is the improvement he's made. It gives us so much hope for his future.

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