1 year ago James had SDR surgery at St. Louis Children's Hospital performed by Dr. T.S Park. What a year it's been! We certainly didn't expect what this year has placed before us with a global pandemic impacting James' intense therapy schedule but we've tried to make the best of it.
SDR has given James a great foundation to build from. What do I mean by that? Decreasing the level of spasticity has helped James experience a level of flexibility that wasn't possible before SDR. His transitions (laying down to many forms of sitting or standing) have really improved as we look back to where he was a year ago. He has also improved in getting into a 4-point crawling position regularly. From lying on his stomach he can use his core and shoulder muscles to lift up onto his elbows, brace, bend and pull his knees in and then push into the four point position. It's been difficult for James to use his walker, but with time and practice, he's becoming more confident. These are "inch stones" we celebrate today. We have a long way to go to achieve milestones but we keep on keeping on. One step at a time (and sometimes even some steps back before we learn a new way to move forward). Each of these gains mentioned would be so much more difficult without SDR for James. It's also important for us to remember that SDR may reveal other possibilities in years to come, given James (and we) work hard continuing to build from the reduction of spasticity he now experiences.
Our post-SDR journey hasn't been one that blows people away with the sudden before and after difference in gait or mobility and this has been something Mike and I have had to adjust to with time. We know that our experience is unique; James is unique and our experience will be different from others. There are so many factors at play that contribute to this. That is okay.
We feel SO thankful that James had SDR before this pandemic started. Our fundraising events in the year leading up to his surgery would've looked incredibly different (or even delayed) if his surgery had been scheduled in 2020 (which it originally was before we got a cancellation date - praise God!) We are so thankful for our many donors (friends and family as well as many kind acquaintances or even strangers) who made it possible for James to get SDR and the many hours of private therapy that have followed. If you are new to our blog and want to learn more about what SDR is and our experience before and after the surgery (or would like a refresher) I've linked a number of blog posts below:
Happy 1st SDR Anniversary James! We are so proud of you and how hard you work each and every day!