Day 77 (Nov 10)

Tobias' days are starting to trend toward the average of the last weeks.  His vital signs are all in safe regions, he spends a couple of hours a day with his eyes open, but his speaking is getting rarer.  His swallowing has continued to improve and the speech therapist approved him to move from thick liquids to puréed foods.  Otherwise there were few changes in his behavior.

On the medicine front, we don't see a dramatic change from the increased brain stimulant, Modafinil.  It's possible that his eyes are open more often, but not enough to be immediately noticeable and his responses haven't improved measurably.  The doctor is reducing the amount of gabapentin, which is a drug used to make patients less anxious and, in Tobias' case, is helpful to reduce the effects of storming.  Once Tobias has gone off of the gabapentin, the doctor wants to add Ritalin to help calm the errant brain signaling and give Tobias a better chance to voluntarily control his body.  The botox injections will probably take three days to start showing real impact, but it appeared already that his arm and wrist are less rigid and troublesome than yesterday.  It's easier to move his arm at the elbow and his fingers and hand weren't contorted into a claw like many of the days past.

Katja and I continue to work with Tobias when he isn't in therapy and we attend almost all of his therapies.  They are helpful to us as much as Tobias because we are learning what to do and what not to do when we are alone with Tobias.  Our extra practice has helped him improve his swallowing and we hope to find similar successes with his motor skill improvement.  We are reminded daily that his recovery will be a slow process.  It often doesn't make sense that he can do one thing, but not another, or that he is speaking one day and not the next.  I'm reminded and buoyed by the example that my friend suggested of a boat crossing a large ocean.  You can't see the progress that your boat is making on the water, but as long as you keep to your plans day after day, you eventually reach the other side.

Hope over fear.