Day 90 (Nov 20)

Saturday has fewer therapy sessions than the weekdays so we had more time with Tobias today.  He was responsive in word and deed in the morning.  He answered most of the question from the OT with one word answers, but he was quick to answer most of the time.  His range of motion was as good as it ever has been today.  He lifts his right arm by bending his elbow (flexing) and can get to within six inches of his chin.  He is good as giving "fist bumps" by pushing his hand forward by extending his elbow.  He can move his hand about six inches in five seconds, so he isn't fast, but it used to take him three times as long.  He can extend his knee and move his foot 12 inches in a kicking motion that takes him a second to execute, but for the past few days he hasn't been able to activate his leg.  We've been advised to use "tactile reinforcement" when speaking with Tobias to help him reconnect his muscles to his brain.  This means that it is helpful to touch Tobias gently when speaking to him, much like one would touch a baby to reassure the baby that everything is okay.  We've been doing that naturally, but it's nice to hear that it may actually help him.

We took Tobias for a long walk and went to another one of the hospitals in the university complex where there is a large terrace that we wanted to try out as a walking path.  It still wasn't much of a walk, but at least we had a change of scenery for one day.  It was proper cold today, but we were all dressed warmly and Tobias had the double layer of warmed blanket so he was comfortable.

Tobias' eyes are open for much of the time now.  He sleeps for some of the day, but his distinction between sleep and wakefulness is getting clearer.  Even when he closes his eyes during the day, he is often still aware and can response by moving his hand or opening his fist.  His ability to speak is determined by conditions that we don't understand.  The hot washcloth still works about half of the time, but it takes a long time for the water to run before it gets hot so I don't always commit to the effort of using the washcloth trick.  I wonder, as well, that I might overdo a good thing and annoy Tobias or allow him to build up a tolerance against super comforting hot washcloth face washes.  In any event, most of the attempts to ask Tobias a question are met with a blank stare at the wall or an inquisitive look at the questioner with no indication that anything was understood.

Katja had some success with Tobias today.  She is torn about the decision to return to Germany on Monday.  She needs to be there in advance so that she can be ready to support Tobias when he arrives, but she feels badly about leaving him in the US.  This maternal guilt has caused Katja to double her efforts in working with Tobias.  I often feed Tobias and then Katja takes over for teeth brushing and oral care.  Today after she brushed his teeth, she put the toothbrush in his hand and asked him to brush his teeth.  He showed tenacity in getting the toothbrush to his mouth and sawing in slow, miniature toothbrushing motions.  It took him several minutes and he didn't get the toothbrush inside his mouth, but he still attempted moving the toothbrush back and forth.  He wasn't successful in christening today as "Toothbrushing Day", but he did prove that he is ambitious about regaining his abilities.  Given the paralysis that he has had to endure over the past three months, it was inspiring and moving to see him working so hard.  His task to regain the control of his hands, legs, mouth etc is colossal.  I've never faced a burden so comprehensive and opposing, and I'm proud of his clear efforts to make use of his paralyzed body.  He is starting from nothing and trying to come back to us.

Hope over fear.