The neurodevelopment appointment led to an orthopedic appointment. This is happening today. There will be talk of surgery involving Cody’s Achilles tendon. Hopefully a very-in-the-future surgery.
The neurology appointment led to scary conversations about epilepsy (we found out they stop classifying seizures, even with a fever, as fibril after the age of six and start viewing them as a possible life long thing: epilepsy) and a goal of keeping Cody’s seizures at two or less a year. Oh and they must be associated with fever. As if we have any control over any of this. There are whispers of daily anti-seizure medication. These whispers turn my stomach and make my palms sweat.
The neurosurgery appointment led to a urology appointment to discuss if there is subtle tethering of his spinal cord. Talks will follow regarding urodynamic studies. Scarier even, are the talks that have already occurred about a surgery to remove two small fatty growths on his filum, the connective tissue at the end of Cody’s spinal cord.
At least his shunt looks find.
Husband and I have lots of decisions to make, lots of medical pathways to untangle, stare down, and hopefully pick the right one to walk towards. We don’t want to overwhelm Cody and his live with nitpicky medical procedures that may or may not improve his quality of life. His quality of life is pretty darn good as it is. At the same time we do not want to overlook or misunderstand an opportunity that can provide him with more.
So as all this rumbles through my head, what do I hear the boys doing in the hallway with their blocks and stuffed animals? Cody is currently giving his stuffed rooster an MRI because something in Rooster’s tummy is not quite right and his stuffed Phineas is waiting in line behind Zebra for his turn at the x-ray machine.