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 effects 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

Adding It Up: Appointments in 2018

The other day, I was listening to a podcast by Rachel Hollis about goal setting as it relates to running a business. In it, she walked the listener through how, at the end of year, she sits down with her calendar and goes through it day-by-day to tally up how she spends her time so she can use that information to set goals for the next year.

Now, I realize this concept really is totally unrelated to raising a differently-abled child, BUT as I listened to the podcast, the nerd inside me came out and thought: gosh, wouldn’t it be interesting if I could see how we spend our time over the course of a year supporting Solly’s medical and therapy needs? Fortunately, Solly is the son of a Mama who is a type A, project-manager-in-a-previous-life, geek who lives by and documents everything on a Google calendar. In my opinion, there is really no other way to keep track of the craziness that is Solly’s life.

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Nerds of the World: Unite!

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The Last Six Weeks

I find it’s always hard to come back to the blog after taking a bit of a break: where do I pick up? Do I skip everything we’ve done since our last post or do I go back and cover every single little thing?

I’ve decided this time around to do a quick recap of the end of the year as we did some noteworthy things that I want to mention.

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Enjoying Nashville in the late Fall

In short, the last six weeks were a blur. Here’s what we did: Continue reading