Day 96 (Nov 26)

As is par for the course in Tobias' recovery, today was a mix of successes and, well not successes.  Tobias was able to stand with less assistance than ever before.  He was still being supported at the knees, back and head, but he would have folded only a few weeks earlier in the same exercise.  We are very excited about this advance in his recovery.  The less than success is that he hardly speaks now.  He has to drink in order to speak.  Our theory is that the cold liquid passing over his vocal chords "wakes them up" and triggers his brain to remember how to activate them for speech.  It's similar with his right hand.  Sometimes he won't be able to move it, but if we touch it, he can start moving it again.

I took Tobias outside for a walk today and he was awake during most of it.  Today was cold, but the sun was out and we were dressed appropriately.  Tobias could talk at all during the walk, but he was quick to respond with his hand to questions.  He also nodded his head yes and shook his head no.  The movements are tiny, but definitely perceptible.  The first time he responded with a nod I wasn't sure if I had seen him correctly.  It was fun to see Tobias respond instinctively with a nod.  

Because it was cold I wanted to dress Tobias warmly.  He was only wearing short and a short-sleeve t-shirt.  I kept him in his wheel chair after the morning therapies because I wanted to go outside with him today.  The last two days the universe has conspired against our daily walk and won.  I was determined today to take Tobias outside for a long walk.  I knew that his lunch would arrive and I planned to go for a walk with him after I fed him.  He had been in the wheel chair for several hours at this point and I was concerned that he would wet himself and make me change him before we could go on a walk.  Through hand gestures, however, Tobias promised that he did NOT have to go to the bathroom and he would inform me if he needed to by raising his hand.  He also confirmed via hand-raise that he can tell when he needs to go.  It felt like a break-through and a great plan.  And it was right up to the point when I grabbed his hips to shift him in the wheel chair before embarking on the walk.  Turns out that he can't actually tell when he needs to go to the bathroom or when he has gone to the bathroom.  I guess the other option is that he didn't understand my questions, but that's unlikely given the other questions that he has answered for us and that his answers around Mother Nature were all consistent.  It was a little disappointing to determine that he wasn't aware that he had wet himself.

I called the nurse's aide and we got Tobias back in his bed to exchange his wet clothes for dry, much more weather appropriate clothes.  Once we had him back in the wheelchair, I used my two warm blankets trick as a heat source for him and covered him in his fleece blanket.  I put his down jacket on him from the front by putting his arms in the sleeves and pulling the jacket tight so that the back of the jacket is flat against his chest.  It seems to do a good job to keep him warm.  I ask him frequently whether is is comfortable, warm etc and he does seem to know when he is in pain or cold.  The cherry on the top of his winter wheelchair outfitting is the bluetooth speaker on his lap.  It's now past Thanksgiving and I promised his sister that I would play him some Christmas music.

We walked up and down the same stretch of sunny sidewalk for almost an hour.  I checked with him every ten minutes and he consistently wanted to stay outside.  I only returned in time for his shower.  I requested two people to help with the shower and it was a good idea.  The extra set of hands made it much less stressful and Tobias was clean in short order.  After he was back in bed I used the new Mach 3 razor that I bought for him and gave him an imperfect shave.  Imperfect because I am worried that I'll nick him if I shave too closely.  He has some random small moles that vex me and the angle isn't great since I don't try to lay his head back like a barber would.  It leaves a poor working angle to shave the part of his neck just below his Adam's apple.  The result is a pretty good shave, but not a smooth as a baby's bottom.  I'm just happy that I haven't nicked him.

I worked on his ankles in the morning and in the afternoon.  I massage his stiff ankle joints and feet and I give him the old calf stretch by removing the footboard on the bed and placing his feet flat on my chest.  Then I lean forward so that my weight presses his ankle away from the "en pointe" ballet position closer to a 90 degree angle relative to his shin.  The combination of these stretches and the more frequent standing exercises in PT/OT are bringing back more flexibility to his ankles.  His feet are still turning unnaturally inward like a strained ankle, but they used to be stiff and it was hard to move them to a normal posture.  Now it's fairly easy to move them and it's getting easier to stretch his calves.

Katja facetimed from Germany and spoke at him for 30 - 45 minutes.  He watched the phone for a lot of the talking, but he fell asleep occasionally and he isn't able to show facial expressions well.  I can only tell if he is feeling pain stress.  His face doesn't respond at all to my messages and he didn't respond to Katja today.  Tobias and I got to see a lot of Eloise and Emily as well as Katja.

Didn't hear anything regarding the flight home today or it's preparations.  It's Black Friday today, however, and we didn't expect to hear anything.  The last thing I did before leaving is to ask Tobias what he wanted to watch on TV.  He was alert with both eyes open.  Apparently we've watched too many Psych episodes because he didn't want to watch another one.  He unfortunately couldn't tell me clearly what he wanted to watch.  I played the game of 20 questions with him to figure out what he wanted, but it was a difficult task.  He finally told me through yes/no hand gestures that he wanted to watch a movie on Disney Plus.  There were too many to narrow down this way so I washed his face with a hot water wash cloth and gave him a drink of water.  I would have given him some juice, but I've already brushed his teeth and we are worried about him needing dental work with his current lack of jaw movement.  Luckily it did the trick and he was able to say the first syllable of the Disney movie he wanted to watch, "star".  Through more trial and error I figured out that he actually wanted to watch Star Trek, which is on Netflix.  I'm not sure where one of us went wrong, but this is a minor example of how difficult it is to communicate with Tobias.

Hope over fear.