Part One of this story can be read HERE.
I’ve been meaning to sit down and write an update since we’ve been back but it’s been difficult to find the time! Man, we’re in a really busy spot of our lives right now! But I suppose that’s to be expected when you have a young family… there’s always stuff going on and things to do.
Anyways, we traveled to St. Louis last weekend with Caleb to meet with Dr. Park from St. Louis Children’s Hospital. Thanks to an informative Facebook group, we had a good idea of what to expect, as well as recommendations on where to stay and what to do while in St. Louis. I think I’ll recap the rest of the trip, aside from the appointment in my next post, to include lots of pictures.
On Monday morning, we walked over to the hospital (our hotel is actually connected to several local hospitals via a skybridge) and checked in to see the doctor. Our first stop was to view a slideshow that fully describes the SDR process, possible complications and statistics. It was very informative and this presentation is actually available on YouTube for anyone interested in learning more.
Next we met with the head physical therapist who got some baseline measurements related to Caleb’s flexibility. I’m not familiar with the technical jargon, but she essentially measured how many degrees past neutral that she could bend Caleb’s joints. She also answered a ton of questions that we had. Caleb’s therapists here in Maryland haven’t worked with a child who’s had SDR recently, so they had a lot of questions that I was able to get answered for them. After meeting with the physical therapist, we finally met Dr. Park. What I liked best about him is that he didn’t sugarcoat anything for us and he was very honest. After watching Caleb walk and feeling his muscle tone, the doctor told us that he felt that Caleb is an excellent candidate for this procedure. Dr. Park anticipates that Caleb will be an independent walker (in all environments) by 1-2 years after this surgery. Even writing these words gives me goosebumps. Having Caleb be completely independent is something we’ve wanted for him for so long. We were also told that if Caleb gets this surgery while he’s three, he only has a 20% chance of needing additional orthopedic surgery in the future.
With all this information, we felt comfortable moving forward with this process and have booked Caleb’s surgery for August 28. We look forward to going back to St. Louis, this time with Wyatt and a new baby in tow. We’ll be there for about a week and anticipate a very rigorous physical therapy schedule for at least a year post-op. It’s going to be a crazy and difficult year, but I’m anxious to work hard alongside Caleb and keep focused on his goal of independence!