Tuesday, June 11, 2013

Bring it.

My son, the athlete. That's the largest takeaway piece from three hours of back to back appointments with various specialists last Friday. His affected hand bends in an unnatural way because of the spasticity of his muscle, the pinky side is so tight that it has pulled the entire wrist at at an angle. He has a brace that *may* help (they aren't really sure) but he won't wear it because with it, he can't throw a ball or hold onto his bike. And the neoprene material doesn't breathe, so it's hot.

His gait is worsening, as is evidenced by the constantly scraped knees. They want to refit him with an AFO, a brace that spans the length of his right calf, and continue with a new orthotic for his left foot as well. The braces he has now are made of a rigid plastic that prevent him from running or riding his bike, and aren't the most ideal summer footwear.

So here we are. We're working with our orthoticist who has been testing a new brace designed for athletes. It's smaller, more light weight, and should still provide the support that will help Henry support himself when he tires. And, more importantly, it will allow him to move the way four year old boys need to move. We have a referral to meet with a hand specialist, to assess Henry's ulnar deviation (fancy language for super-stubborn pinky finger muscle). They will fit him with a hand brace designed to prevent him from pulling his wrist, with the goal of treating him as an athlete. Whatever splint or brace we end up with will be designed to throw a ball, grip a bicycle, all in the heat of summer.

He's an athlete, and his doctors are treating him as such. I'm still wrapping my head around that one.

The developmental piece is trickier. His teacher talks about not being able to identify numbers or letters the way a typical four year old can, and the disconnect between shapes and language she's noticed in countless different scenarios. After speaking at length with our physiatrist, she is convinced that it's not a global delay, but instead a form of aphasia common in kids with cerebral palsy. He sees the square, knows it's a square, but can't get his brain to say the word "square". He excels at sequencing images in a story, but when it comes to describing the images he's silent. He knows the answer but can't find the words.

Our next specialist visit is with a neuropsychologist who'll study the way Henry learns concepts, and then how he expresses his knowledge. Everyone seems to think that intensive speech therapy that focuses not on pronunciation of words but on general language concepts is the place to start. We have four appointments already set up for the summer.

So that's where we are now. Four speech appointments, a neuropsych eval, a hand specialist, and an orthotics appointment (and follow ups). All to take place sometime between now and September 1, which also means it's the same time as opening seven shows at the theatre, hosting six appreciation events and two open houses, two concerts in the park for the local library and balancing summer baseball and violin lessons for Charlotte while training for a half marathon.

Bring it.

Hug your kids/partner/pet and don't forget to breathe,