An Upcoming Surgery

I hate writing this. I hate saying this. I hate even thinking about this. 

The “this” I’m referring to is Solly’s upcoming hip surgery. 

I’m almost in tears even writing these words, though I’ve known it was coming for many months now.

Solly is having bilateral Varus Derotational Osteotomy (VDRO) and a left-side Pelvic Osteotomy surgery in mid-November. 

And I’m having trouble coming to terms with it. Or, maybe more appropriately, I’m having huge amounts of anxiety over it.

This is the highly invasive surgery that we did everything in our power to postpone or avoid altogether by undergoing SPML when Solly was 2 and a half and later SDR and adductor lengthening surgeries when he was 5. We knew it was a likely event, but like everything else when parenting a child with a disability, we hoped and prayed that he would be the one exception that could avoid it.

That wish turned out to be a big fat “nope”.

The background: Why do kids with cerebral palsy often face this surgery?

In short, Solly needs to have this surgery because he has hip dysplasia. His hip sockets are super shallow and the head of his femur, or thigh bone, doesn’t fit properly inside his hip sockets. His right leg is about 30% out of the socket and his left is over 50% out.

Oftentimes, when kids have diplegic (involving both legs), triplegic (in particular, those involving two legs and an arm), or quadraplegic (involving all four limbs) cerebral palsy, the tight muscles of the legs pull the legs out of the hip socket. For Solly, this started occurring when he was around 2 years old, but SPML plus alcohol blocks, which relaxed his legs, allowed for his hips to go back in the socket. Once the alcohol blocks from that procedure began to wear off, his hips began to slowly sublux again. Solly had SDR once we understood that his hips were beginning to dislocate again, however because his cerebral palsy is spastic and dystonic, and SDR only solves for spasticity, this only slowed the dislocation. It was not an effective solution. 

What does the surgery entail?

VDRO and the pelvic osteotomy are essentially hip reconstructive surgeries. The St. Louis Children’s Hospital’s website provides a much better explanation of the surgery than I could ever describe, and that can be found here: https://www.ortho.wustl.edu/content/Patient-Care/3201/Services/Pediatric-and-Adolescent-Orthopedic-Surgery/Overview/Hip-Education-Overview/Femoral-Varus-Derotational-Osteotomy.aspx 

Some doctors will do a lower body cast after the surgery to protect the hips, however we opted to go with a doctor who provides removable leg braces and an adductor pillow wedge post-surgery. Solly will wear these for about 6 weeks after surgery and will not be able to bear weight for that amount of time.

Will the surgery help Solly?

Yes. The first orthopedic surgeon in Los Angeles who told us we needed to consider surgery said the procedure was primarily to minimize pain, particularly as Solly grew. However, as I read through that particular doctor’s clinical notes I realized that he did not listen to my accounts of Solly’s progress and ability and noted that he had not made any progress throughout the prior year and, for example, only walks in a gait trainer while at therapy. His plan was to just do the bilateral VDRO and place Solly’s hips at a severe angle to keep them from dislocating again and requiring repeat surgeries. The “severe angle” piece did not sit well with me and I read his plan as an action that could hinder Solly’s physical development. Those notes prompted me to seek out a second opinion, particularly at the suggestion of an adult with cerebral palsy who went through this surgery twice.

According to the doctor who gave us our second opinion and who is the doctor that will perform the surgery, the combination of VDRO and pelvic osteotomy will not only help minimize any hip pain as Solly gets older, but the addition of the pelvic osteotomy should help stabilize his pelvis so that he can walk without scissoring and hopefully get stronger in all of his ground and weight-bearing abilities. As with all things related to cerebral palsy, we remain realistic that this surgery will minimize any joint pain he might have as he grows up and are hopeful that it will help our goals of allowing Solly to become as independent as possible.

So, what’s next?

Solly has to get a number of sign offs in order to proceed with the surgery, most notably from a hematologist. Our worry with an orthopedic surgery that requires six weeks of immobility is the formation of blood clots, particularly since Solly is a stroke survivor and has several blood clotting disorders. We’re hopeful that the hematologist will sign off on the surgery and provide guidance so we can mitigate any risks associated with blood clots. 

Once this happens, we’ll go through the surgery in mid-November and plan to celebrate by removing the leg immobilizers and adductor wedge on Christmas Eve, which is exactly 6 weeks post-surgery. I’m planning to take Solly to his weekly speech and occupational therapy appointments starting about 10 days after surgery rather than break from all therapy. Solly’s NAPA Center therapists are his favorite people and wheeling into the clinic, for Solly, is like going into “Cheers!” – we simply couldn’t keep him away for 6 whole weeks! However, he will be taking about 6 weeks off from physical therapy and will start up again at least once per week as soon as we get the “ok” from his surgeon. We’ve already set up intensive therapy at NAPA for February 2022 so we can hit the ground running and start working on building up his strength post-surgery.

As I indicated when I started this post, the news of this surgery is devastating to us. This surgery is known as one of the tougher surgeries in the CP world and one that is particularly painful and rather difficult to bounce back after. I try to remain positive, but it’s really hard to not imagine the worst-case scenario. I think, as parents of a disabled child, whenever something is going well, we’re all consciously – or subconsciously – waiting for the other shoe to drop. So, with that, I’ll close out with a promise to either post an update or two here on Solly’s blog or on my Instagram account as we go through the surgery and recovery.

Wish us luck.



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.

Continue reading

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