I love your brain

The past few days kind of took the wind out of my sails.

We were scheduled to have a neurology appointment last Friday, which was confirmed by robocall from CHLA on Wednesday. We arrived on time, checked in, sat for a while, and then Cole was called for the usual weigh in, temperature, blood pressure intake and we were then led into an exam room. We again sat for a bit until someone came in to inform us that our doctor doesn’t work on Fridays anymore. She changed her day. They had left a message at our home mid-Friday morning. Not particularly useful since my husband and I both work, and neither one of us checks the home messages until we arrive back at home at the end of a weekday. Why do all of the forms ask for alternative phone numbers if they don’t use them? Mind blowing…

So they kindly gave us the first open appointment, Tuesday, her new day, at 12:15. We accepted the appointment. Sadly, having missed half of a day at work Friday, I couldn’t attend this time. We also had a morning orthopedist appointment, which I did attend. So no school or work for the boys. Frustrating but both necessary appointments.

The orthopedist appointment left us with hip repair/replacement surgery on the books for June, along with some other smaller surgical procedures that will leave Cole stronger and better able to bear weight, walk and sit more comfortably. This endgame the most important thing to remember during the six or so weeks of full leg casts with a bar between the ankles during the summer. This will be the second “bummer summer” Cole’s had in four years. He had similar surgery the summer before 4th grade.

Oh how I wish I could spare him the surgery and recovery. The first couple of weeks are the worse in terms of managing pain and finding the best ways to maneuver the boy with his casts and bar around the house and keeping him comfortable. Then the boredom starts to set in. Once he’s feeling better and off pain meds, the trick then becomes to find ways to keep a sedentary him entertained.

The neurology appointment happened, and despite videoing some of his seizure activity, it turns out that there’s not much that can be done. We can change medication to something that has more significant side effects, including potential liver and pancreas damage (so regular blood work) or contemplate an implant device that can be effective at calming seizure activity, but takes up to two years to get there, or leave him on his current medication. Given the now upcoming surgery, my vote goes to status quo. It doesn’t sound like the other options are better at the moment so my instinct is to wait until the orthopedic event is over and then get more into the brain activity.

Can someone just tell me when enough is enough for this boy? He’s been through so much, and takes it all in stride. It would be nice if something just went easily for him sometimes.