Nearly four months ago, we went into the Selective Dorsal Rhizotomy surgery with the mindset that it could have great benefits for Solly, but the most likely case is that he’d simply be more comfortable.  Dr. Park, the surgeon at the Saint Louis Children’s Hospital who performed Solly’s SDR in May, requires all US-based patients to come back 4 months after SDR so he can review progress and make any suggestions on physical therapy, bracing, equipment, and additional surgeries to support his patients. We had this appointment this week, so I thought now would be a good time to check in and report back on how Solly is doing post-SDR.

The Good

• Solly’s range of motion has increased exponentially. We can now stretch his legs in all directions and with ease. He no longer has to sleep with the night braces he’d worn to stretch out his heel cords since he was 12 months old. We are supporting this new range of motion with daily stretching and massage with a CBD-infused massage oil.
• Solly’s sitting has improved. Before surgery, he could easily get into sitting from laying down, but his posture was often slouched. Now his posture is much straighter and he can even raise both arms off the ground while seated, holding the position for 5 – 10 seconds.
• Solly is kicking butt while walking in his gait trainer. He was pretty weak for a few weeks after the surgery and I was disheartened when he couldn’t move his gait trainer on his own or even take consistent steps. However, about 2 months into his recovery, he walked in the gait trainer all on his own again and just a few days ago, he practically started running in it (when the motivation was just right).
• Solly’s speech continues to improve by leaps and bounds. He’s starting to string words together, forming short sentences like “I go up” and “I love you”. We’re still working on using sentences and words appropriately, but we’re thrilled that he’s continuing to find more words and sounds after SDR.

The not-s0-good

• Immediately after SDR, Solly’s muscles were floppy. Another Mom whose son went through SDR about 6 months before Solly had prepped me for this, so I wasn’t terribly concerned though I still sent her many texts in the days following his surgery – “was your son THIS loose?” “will Solly’s strength come back?” “did I make the wrong decision!?” – looking for reassurance. While Solly has regained most of his strength, he still has some residual weakness in the right side of his trunk. This continues to improve each day and is really only noticeable when Solly is resting in his adaptive stroller or in his car seat.
• A somewhat confusing side effect of the surgery is that Solly’s legs seem tight when he’s walking, particularly in the hips, he still scissors, and he hyperextends his legs. None of these observations are new, we’d simply thought he’d stop doing these things after surgery.

The 4 month follow up

This past Sunday, Solly and I made the 5 hour drive to Saint Louis for Solly’s follow up appointment. We made it into a fun,Mom and kiddo slumber-party-kind-of-night. As soon as we got there, we hit up the Saint Louis Science Center where we shared a slice of pizza, checked out fossils, dinosaurs, depictions of the moon and Mars, and played with legos and other types of blocks. Afterwards, we checked into our hotel, strolled around the area, grabbed dinner, and snuggled in for the night.

Solly’s appointment went by quickly. We first met with Dr. Park where we discussed Solly’s progress: Dr. Park watched the video above of Solly walking in his gait trainer at home, observed him crawling, transitioning from laying down to sitting up, and had him raise his arms above his head while sitting (which he could do!). When he examined him, he made two suggestions. For one, some of the residual tightness in his legs was due to dystonia, a movement disorder that is the result of damage to the basal ganglia. Because Solly’s left basal ganglia was destroyed by one of his strokes, this diagnosis really wasn’t a surprise, nor was Dr. Park’s opinion that medication really wouldn’t do much. His other thought was that the scissoring and tightness in his hips could be reduced by an orthopedic procedure called PERCS – percutaneous tendon lengthening – targeting the tendons along the adductor muscles.

After meeting with Dr. Park, we had a quick evaluation by his PT team. A PT watched Solly walk and then took measurements of his range of motion. She discussed some stretches we could add to our routine as well as some ideas to help combat the hyperextension, like adding wedges to Solly’s shoes and looking into hinged AFOs so Solly can start bending his leg at the ankle.

moving foward

Once Solly and I got back to Nashville, Mike and I sat down to talk through the next steps to help Solly and we agreed that we’d move forward with the PERCS procedure. Dr. Park will put in a referral to Dr. Matthew Dobbs, an orthopedic surgeon also based in Saint Louis, so we’ll work to get the consultation and surgery scheduled with him.

While SDR was not an immediately miraculous procedure for Solly, we’ve seen it help him in so many little ways so far because of it and we’re excited to see him continue to thrive and grow.