Tag: cerebral palsy

Roanoke, Week 2: I Did It!

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img_2162During one of Solly’s therapy sessions this week, his therapists got really excited when he used his right hand to move a bead across a track, so they cheered, “Solly, you did it!”

And Solly replied, “I did it!”

Now, I haven’t heard him say this exact phrase yet, but I completely believe that he said it. I’ve long thought that Solly understands everything we say to him and part of his sensory issues (i.e., excessive biting, throwing his head back, flailing his arms) is simply him expressing frustration that he can’t find the words to respond to us. It’s like the words are in his head, but he struggles with which word to choose and how to get it out. Continue reading →

Roanoke: One Week In

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Hello from Roanoke!

One week ago, we packed up a U-Haul and drove 6.5 hours (well, 8 hours, really, thanks to Bea’s insistence that we stop every hour to get out of the car and run around) to scenic Roanoke, Virginia. No, we didn’t move here – at least, not permanently. We’re continuing our nomad lifestyle and have uprooted our family – dogs included – for 4 weeks so Solly can participate in a constraint intensive therapy at the Virginia Tech Carilion Research Institute (VTCRI).  Continue reading →

Quick Update: The Hip Situation

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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 →

Taking A Pause

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It’s been a rough couple of weeks.

Bea’s been whiny. She hasn’t been sleeping, eating, or wanting to do anything other than hold my hand. Solly has been cheerful as always, yet somehow not acting himself – running a little warm, not eating great, just a little off. I’ve been exhausted. More so than usual. We’ve been struggling to get anything done other than keeping ourselves fed, staying cool in the summer humidity, and getting in bed at a reasonable hour.

Something just hasn’t been right.

Then, last Monday, Bea started sticking her fingers in her ears. She was jumpy at any noise, crying unusually hard when Solly spoke too loudly or when the dogs barked. She threw a fit – a full-on two year-old’s meltdown at only 16 months old – immediately when she didn’t get her way.

Something wasn’t right. Continue reading →

SPML: One Year Later

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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 →