Day 49 (Oct 13)

Another calm day for Tobias.  Without the brain stimulant, Tobias is rarely storming and when he does, they are mild episodes.  His heart rate may have worked itself up to the mid-one-teens today, but I didn't see it.  The highest bpm that I saw was 106.  His face sometimes looks flushed and red, but it hasn't been accompanied by the heavy sweating or the rigid shakes that are terrifying to watch.  I almost feel giddy thinking about the last few days of not having to deal with storming.

The physical therapist put a cast on Tobias' shin and foot to keep his foot in the proper position.  Today the cast came off to see how his skin was faring around the boundaries between cast and skin.  Everything looked really good so he may get another cast soon.

The rehab doctor told us today that Tobias may have a cranioplasty tomorrow.  Cranioplasty, I have learned, is the term used to describe the procedure of putting the cranium back in place.  The operation is apparently one of the simpler neurosurgical procedures.  There is always a risk of infection or the brain not liking what's being done to it, but the risks are low and the surgery isn't elective.  Currently the top right side of Tobias' skull is sitting in a freezer somewhere in the university.  It surprised me that in other areas, the bone is sometimes put back in the patient's body for preservation.  I don't understand how keeping the bone in someone's hip or stomach is safer than putting the bone in a freezer.  It's all a miracle to me.

Tobias continues to surprise us with some progress and disappointing us by not repeating past successes.  Today he opened his hand enough to let the ball drop from it and he opened his mouth wide enough for the speech therapist to brush his tongue with the thrush medicine.  These small victories are still rare and surprising enough that each one kindles a happy little fire in my heart.  Tobias' eyes were open for much of the day and his face makes small adjustments that reveal his efforts to communicate with us.  His lips were moving at times and it seemed like he was trying to speak.  These developments are exciting, but then the moment passes and Tobias sinks back into his former stupor and loses his magic.  His stamina is short-lived still, but he has been building more strength and his endurance is trending in the right direction.  I can imagine him making more progress, which, up to this point, was only possible through an exercise in positive thinking.

Hope over fear.