Wednesday we had a follow-up with his neurologist to check in on his Dysport injections received in May. Dysport is similar to Botox and can be used to help treat lower limb spasticity in children. We’re hoping this will help Parker stand straighter and have greater range of motion in his legs. So far, it seems to be helping Parker lift his legs when taking steps or going up stairs (with assistance, of course). Dysport typically wears off after 3-4 months, but it affects everyone differently. We’ll be watching Parker for signs of increased tone and expect to have our second set of injections done around September.
Thursday we had our weekly physical therapy session with Miss L. Parker absolutely adores Miss L and is usually screeching in the car with excitement on the way to our sessions. One of the things we did this week was work on the Pedalo (pictured). This contraption can be difficult for Parker to use as his knees turn in and he has a hard time keeping his feet in place, but it’s good for coordination and balance. As much as we try to make PT fun, sometimes Parker just isn’t having it. His face says it all.
Thursday afternoon we drove to St. Louis for a Friday morning appointment with Shriners Hospital. Here, I got to re-experience an odd situation that happens when your kid has an ultra-rare disease: having to explain to nurses and doctors what exactly “KIF1A-Related Disorder” is. But having to “school” healthcare providers about KIF1A is so much better than before we had our diagnosis. Before, I would stumble through some variation of “Ummm… I’m not sure what’s ‘wrong’ with him. He can’t walk, he can’t stand, he barely talks, his ankles are pronated in a way that makes me cringe, and he falls. A LOT.”
After getting x-rays done of Parker’s legs and hips, we learned that his left hip is coming out of socket. Apparently this is rather common for people with lower limb spasticity. The good news: we caught this pretty early. The bad news: it requires surgery. We have a consultation scheduled with an orthopedic surgeon this week to discuss further.
KIF1A sucks. There’s no better way to say it. I hate that routine sedated procedures and surgery are becoming Parker's normal. But at least for now, Parker is oblivious to these worries. He seemed to quite enjoy his first long distance adventure!