Let me let you in on a little secret: when I take a little break from Solly’s blog, it’s usually because I’m so anxious about something that I am struggling to put an experience into words. While we’re currently in the hospital with Solly recovering from SDR (spoiler!), I wanted to document our entire experience with this potentially life-changing surgery. So before I write about the actually surgery, this post, which I started writing over a month ago but never finished, picks up where the last post left off – our SDR consultation.

When Solly and I walked into Dr. Park’s office at the end of February, I was convinced that the appointment would be short, that, on the negative, we’d quick a quick “no” that would allow me to cross SDR off our list of possible interventions, and, on the positive, we’d finally – finally! – get some clarity around the type of cerebral palsy Solly has.

Well, folks, I was wrong. Way wrong.

Solly IS a candidate for SDR and Dr. Park saw zero red flags when assessing him for the surgery. In fact, he’ll not only have SDR to relieve (hopefully permanently) the spasticity he has in both legs, Dr. Park recommended doing a second procedure on his called PVR – partial ventral rhizotomy, which will stop his legs from scissoring when walking. I’ve not had the opportunity to do research on the specifics of PVR: according to Dr. Park, it has a 90% success rate – and if it doesn’t work, he’s got another idea that could help. (I’ll fill y’all in on the specifics if we get to that point.)

Dr. Park confirmed what I always suspected but never got a straight answer on: Solly has triplegic cerebral palsy, meaning that his legs and right arm are affected. He and his PT also spoke about what some doctors are calling “dystonia”. Solly’s legs tend to tighten when he moves his body around and he often has trouble bending them when they’re so tight. Instead of this being dystonia, however, both Dr. Park and his head physical therapist believe his legs tighten to compensate for areas of weakness elsewhere. It’s still possible that dystonia might present itself after spasticity is removed, however there is enough spasticity present that it’s worth taking that risk to remove it and get Solly more comfortable.

Our surgery date is May 2nd. We have a pre-op appointment on May 1st and can expect to be in the hospital for a total of 5 days. I’m nervous as hell for this procedure but am so hopeful about what it could mean for Solly.

Anxiously waiting to meet Dr. Park

Exhausted after a 3 hour consultation