SDR: Four Months In

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. Continue reading

Our SDR Experience, Part 1

Nothing could really prepare us for Solly’s Selective Dorsal Rhizotomy. That’s not to say that I totally unprepared: I’d read countless personal stories about the surgery, devoured anything the doctor’s office sent to us, and asked plenty of questions of fellow Mama’s whose babies had already had the surgery. Those Mamas were even kind enough to give me tips and tricks for the hardest part of the surgery: the recovery. I’ve said it before: the Special Needs community is awesome.

All that said and done, next to our time in the NICU, this surgery was the hardest thing we’ve been through to date with Solly. There were a lot of unhappy moments, quite a few tears, and many sleepless nights. Solly is one of the happiest kids I’ve ever met, so when I see him crying or in pain, I will do anything to stop it.

It was an exhausting few days.

There’s a lot to cover. Here’s what went down before and during surgery: Continue reading

A belated post. SDR: It’s On!

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. Continue reading

Solly and SDR

Screenshot 2019-02-10 at 8.34.32 PMIn two weeks from today, Solly and I will be in St. Louis to consult with world-renowned neurosurgeon Dr. T. S. Park to determine if Solly is a candidate for a procedure called Selective Dorsal Rhizotomy (SDR). This is a potentially life-changing surgery and while it is one that I’m not confident that Solly is a candidate for, there’s a part of me deep down inside that has all fingers and toes crossed that we’ll get a “yes” from Dr. Park and will be able to schedule surgery for the first half of this year.

What Is SDR?

If you’re interested in a medical explanation of SDR, I highly suggest heading over to the St. Louis Children’s Hospital’s SDR page. If you want the Camie explanation, read on. In short, it’s an invasive surgery where a surgeon cuts through the spinal nerves located in the lower back that cause spasticity. Spasticity, or muscle tightness, is a common side effect of cerebral palsy and it’s one of the main reasons that Solly struggles with things like four-point crawling, ground transitions, and walking. SDR would almost permanently eliminate spasticity. (If you’ve been following our journey for awhile, you might remember that we had a much less invasive procedure called SPML done back in 2017. The results would be similar, but permanent – the spasticity would not return.) Continue reading

Progress is Progress

Once upon a time when we were just getting our sea legs in the world of therapy and diagnoses, I envisioned a time when Solly would magically get up and start walking. It seemed that every day a new video would pop up on my Facebook or Instagram feed that said something to the effect of “this child was told he’d never walk or talk, but look at him now” showing a video of a child taking his first steps at age 2 or 3 or 4.

When Solly was between the ages of one and two, I simply followed the process – therapy once or twice a week, working on some exercises at home, going to all suggested doctors appointments – and I waited. I waited for that magical moment where I could celebrate my son taking his first steps – delayed, but not too delayed – despite the doom and gloom prognosis doctors gave us in the beginning.

We never got that magical moment. In fact, during this time, Solly hit a plateau in therapy and stopped making any progress. I began to feel hopeless.

2f6590e0de122cba00a1978fb954def7--sandwich-boards-zen-attitudeIf you’ve been following our story for a while, you know that we started focusing on intensive and alternative therapies about two years ago, when Solly was two and a half. As a result, Solly hasn’t magically started walking yet, but he has made measurable gains. It might not seem like much to the regular Joe, but those who are closest to Solly have noticed how much progress he’s made. As we started noticing new developments, I started noting them in my head as “inchstones”, a term I’ve borrowed from Moms of special needs kiddos to celebrate when a gain isn’t quite a milestone, but is moving in the direction of one. Continue reading