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

Quick Update: The Hip Situation

A bit of good news for hump day

Hip health is a major concern for many people with cerebral palsy. The reason behind this is largely because spastic (tight) leg muscles can pull the hip out of the socket, causing hip dysplasia where the ball of the hip joint isn’t fully covered by the hip socket. The surgery to correct this is a major one with a long, painful recovery.

In other words: this is something you want to avoid if at all possible.

This is why, against our local doctors’ recommendations, we decided to have Solly undergo selective percutaneous myofascial lengthening (SPML) last year to give his tight muscles a release along with alcohol blocks to help loosen them up. If you’re new to our blog, I wrote a couple of updates on SPML at 2 months and at one year post-op, and also gave an update on Solly’s hip health at 6 months post-op. This surgery was a game changer for Solly’s gross motor development, giving him the opportunity to move his legs more freely so he can now walk in a gait trainer and independently propel his tricycle. Continue reading

SPML: One Year Later

It’s a celebration

This week marked our one year anniversary of Solly’s selective percutaneous myofascial lengthening (SPML) surgery with Dr. Nuzzo in Summit, New Jersey. Our decision to move forward with this surgery was a pivotal point in Solly’s journey towards independent movement. In the weeks leading up to this anniversary, I’ve been reminiscing on the past year and celebrating all of the gains Solly has had and changes he’s gone through because of this surgery.

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Solly just moments before SPML

One year ago, my stomach was in knots during this optional surgery to help Sol’s spasticity (muscle tightness). I felt like I was the worst Mom ever for choosing to put my son under general anesthesia for a procedure that would be painful for him, at least initially. But as Dr. Nuzzo pointed out when we exchanged emails in a virtual consultation, Solly was living in “paralytic jail”. He wanted to move so badly, but his body fought every impulse to move. If we did nothing, it was inevitable that Sol would never be able to move on his own and his independence would be extremely limited. Because of his spasticity (muscle tightness), his bones would deform and he’d likely have to have a series of painful, invasive surgeries to secure his leg joints. Spasticity doesn’t go away on its own: medical intervention is the only way to help manage it. I’d spoken with parents whose children had SPML and after the surgery, their only complaint was that they hadn’t done it sooner. I knew I had to push past my fears and move forward with the surgery. Continue reading

Shake Your Hips

Ever since we flew home from New Jersey where Solly had the minimally invasive SPML surgery last June, I have been worrying non-stop about the health of his hips. Hip issues are common in children with cerebral palsy: tight, spastic leg muscles compounded with less time spent weight-bearing not only cause the hips to pull out of the socket, but also make it difficult for the hip sockets to form completely.

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Sister, Solly, and the big ol’ brace

After SPML, we were sent home with the instructions to keep Solly in a brace as much as possible to keep his legs from scissoring and then do another set of X-rays after six months to see if the surgery was a success. For the first six weeks, we had him in a custom hip abduction brace 24/7. Once he had recovered from the surgery, we changed up our routine so he would sleep in his custom brace and wear a SWASH brace during the day or be brace-less under a watchful eye. Even though we were sticking to the plan and our physical therapist assured me we were doing everything possible, I still worried that his left hip would begin to dislocate again, resulting in a very invasive surgery to stabilize both hips.

Continue reading

Word of the Day: Apraxia

Definition: Apraxia is a motor disorder caused by damage to the brain (specifically the posterior parietal cortex), in which the individual has difficulty with the motor planning to perform tasks or movements when asked. (Source)

I remember the first time I heard the word “Apraxia” mentioned as it applies to Solly. It was back in D.C. and Marie, our vision therapist, was holding a teeny tiny baby Solly. She placed him on her left side, trying to get him to move his eyes to look at her. It was difficult. When Solly was born, his eyes were stuck staring to the left side, and for the longest time, I worried this would always be the case. As she continued speaking to him, he started to dart his eyes over to the right side to check her out. It was progress. “It’s almost as if he has visual apraxia,” she said, meaning that he could see, he knew he needed to look to the right to see her, but his ocular muscles weren’t understanding what his brain was telling them to do.

Over the weeks that followed this particular appointment, we continued to work with Solly and his visual control began to improve. Today, if you were to meet Solly, you might see his eyes dance around as he focuses on you, but for the most part, he has good control over his eye movement. We know he sees (his Nana might tell you that he doesn’t miss anything!) and other than some possible peripheral visual field loss, the only thing he struggles with visually is this control over his eye muscles. In my book, since his control has gotten much, much better since those initial days, it’s not that big of a deal. He compensates quite well and it’s just something we’ll continue to watch and find ways to support as he grows up.

While the idea of difficulty with motor planning was often mentioned, especially with our new physical therapist, the term “apraxia” didn’t come up again until we were in Florida for our intensive therapy. While there, the physical therapist working with us watched Solly and suggested we have an evaluation with one of the speech therapists at Lampert’s who has years and years of experience with kids just like Sol.

She was amazing. If I could have packed her up and brought her back to Nashville with us, I would have.

She took tons of notes about Sol’s medical history, watched him eat, and asked him to move his mouth and tongue in certain ways. She explained that he has some apraxia, making it difficult for him to manipulate food in his mouth and move his mouth and hard and soft palettes to make different noises – or, to talk. She gave us a handful of exercises and stretches for Sol’s cheeks, lips, and tongue that will help bring awareness to each part of his mouth to help improve feeding and speaking. After just a couple of days, Sol was eating new textures, comfortably and easily. He’s also gained some weight since we met with her!

Difficulty with motor control affects almost everything Solly does – walk, talk, and grab for and look at objects. But that doesn’t mean that he can’t do them. We just need to teach him how and be patient with him as he figures out how to do what his brain is telling his muscles.

Years ago, I would have freaked out when I heard apraxia as a possible diagnosis. (Yes, it’s still a “possible” diagnosis as it’s not officially on his medical records, yet.) I probably would have jumped in bed, pulled the covers over my head, and cried non-stop. Now, I look at it as a blessing. It helps me understand how he’s processing – and not processing – what we’re teaching him, it tells me what types of people we need on his medical team, and it also reassures me that progress IS possible.

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Peekaboo!