Checking In: Solly and Medical Cannabis

The other day, a video popped up on my Facebook memories. It was from a year ago, capturing the first time Solly said, “no!” It may not seem like much, but we were so thrilled that, at age 5, he was finally (finally!!!!!) saying “no” appropriately and unprompted.

This video was taken roughly a month and a half before we began our trial with medical cannabis. Since then, Solly has been communicating – both speaking and using augmentative and alternative communication (AAC) – so much that it seems hard for us to remember the time when we ached for him to be able to tell us what he was thinking or what he wants, so when these memories pop up on social media, it helps us to recognize how far he has come in such a short time. While he had a handful of words before medical cannabis, we still struggled to really understand his preferences, what he wanted to do, and what he wanted to eat.

In mid-March of 2020, we had our first appointment with Dr. Bonni Goldstein, which kickstarted our trial with cannabis. I wrote a bit about our experience with CBD and THCa a few months later, when we first saw an unbelievable explosion of expressive speech. Shortly after writing the blog post, keeping up with our experimentation flew off my plate as I became hyper-focused on Solly trying to get an IEP before the start of school, deciding to pull him from public school, feeling like I was thrown in the deep end of the pool without knowing how to swim as I navigated putting together and teaching a homeschooling curriculum while being the primary caregiver, home therapist, medical coordinator, Mom to both Solly and Bea, and so much more.

Once I got my feet back under me and got into the groove of homeschooling and more organized with our day-to-day, we jumped back into our trial-and-error adventure with medical cannabis.

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Let’s Talk About EEGs

 

This is the face of a 5 year-old stinker who, the moment his Mama finally fell asleep around 4am during his 24-hour EEG, expertly removed his gauze cap and several of his EEG leads and proceeded to whoop and holler as he twirled it above his head, lasso-style. I wasn’t sure if I should laugh at his crazy antics or cry over the fact that this likely split-second movement could result in a second night at the hospital. I chose the former, threw on my mask, and ran out into the hallway to see if the on-duty nurses could help me re-wrap his head to preserve whichever leads were still remaining. We laughed as they tried to recreate the wrap while Solly batted his eyes at me and said, “Hiiii Mama.”

Let me back up a second.

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Getting Started with Medical Cannabis

This is one of those posts that took me approximately one million years to write. It’s a post about starting Solly on medical cannabis, a subject that I’m still on the cusp of beginning to understand even though I’ve researched it for years. Before I begin the post, it’s important for me to note that, despite the stigma around marijuana, cannabis is a powerful medicine for many ailments, especially some of the challenges associated with pediatric stroke and cerebral palsy. Because each compound produced by the plant, or cannabinoid, can be used medically and in conjunction with other cannabinoids, and treatment for each person can vary widely, I highly recommend teaming with a doctor who understands how each cannabinoid can be used within a specific population. This is our story of how we’re getting started with medical cannabis under the guidance of a well-respected, very experienced doctor.  

If you follow me on Instagram or Facebook, chances are you’ve seen a few recent posts about Solly’s rapidly emerging expressive speech. After struggling to communicate with him for 5 years, I can’t even begin to put into words the impact this development has on our lives and how beyond excited we are that we’re starting to better understand Solly’s wants and needs.

Here’s one of the videos I shared earlier this year:

Most of Solly’s bilateral brain damage is in the left hemisphere where, in a typical brain, much of the speech center is located. There is quite a bit of research that indicates that if one side of the brain is impacted by stroke in childhood, the other side of the brain will rewire to take over these capabilities (here’s one publication with more details), but because Solly’s brain damage is extensive and widespread on both sides of the brain, we weren’t sure that would ever be the case.

As we’ve tried alternative therapies and procedures over the years – mainly hyperbaric oxygen therapy and stem cell therapy – in combination with traditional speech therapy, we’ve seen big gains in cognition and receptive speech and some small gains in expressive speech. While we’ve always been adamant that Solly’s cognition is right on track, his expressive speech has lagged significantly and everything we’ve done in the past has helped him in little spurts, but no huge gains. That is, not until lately. Continue reading

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

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