Update from Tyler - April 10th 2022

 It’s been a few weeks since I posted and Tobias has made more progress in that time than in any three week period since August.  It’s been a relief to see him pick up the pace of his recovery.  He’s been on a steady rise since January, but each week lately he’s been showcasing material improvements rather than the  incremental changes that had to be documented to be noticed.  He is awake and alert most of the day during my weekend visits.  He gets tired quickly and has periods of sleepiness and inattentiveness.  His attention span/engagement endurance is also still very limited.  He’ll start some promising activity and then stop mid motion like an electric motor when the plug is pulled out.  He’s often able to pick back up right where he left off, but we have to directly engage him again and verbally ask him to continue.  Strange.  For the most part, however, he is awake and can be engaged.  He can communicate and has shown us that our son Tobias is still with us.  It's been a great few weeks.

His increased consciousness has been accompanied by a newfound success with language.  The quality of his speech is somewhat hit and miss, but he’s almost always generates some level of sound, however whispery, and sometimes his speech is audible and clear.  This is an abrupt change to the pre-mid March period where we were happy to get a yes, no or three word response a few times a day.  Two weeks ago on the weekend, he was especially well conditioned for speech, for whatever reason, and I was able to have a real, but simple conversation with him.  This is one of the key moments that I have been yearning for since shortly after the injury.  It was painful to see Tobias imprisoned in his own body, in obvious duress without having the ability to express himself.  It rendered us incapable of fulfilling our parental duty to protect our child and that was a constant source of discomfort.  No control.  No ability to help.  Tobias’ speech is often garbled and incomprehensible, but more frequently now he is able to piece together his sounds so that he can be understood and his messages are more than yes and no.  I estimate that can speak 90% of the times we query him and that 30% of his verbalization is intelligible.

Now that Tobias can speak more regularly, we don’t have to resort to the game of 20 questions to narrow down what he wants to say (“move your hand for yes, move your leg for no”).  It often is as simple as asking him a question and getting a short answer.  Tobias’ dexterity with his right arm is so good now that he can type one-handed on his laptop.  It’s interesting that his brain has no problems spelling complex words, but he never remembers to put a space between words.  He types like we talk without specifying a space between words.  He never had this peculiarity before the injury, so it must be due to damage to the part of the brain that allows us to imagine spaces in our written communication that aren’t necessarily part of our audible speech.  There have been many instances like this that I find intriguing.  Tobias’ injury is helping me recognize functions in the human brain that I took for granted or never realized were separate.  It’s notable that Tobias has no problem with spelling, but fails to add spaces.  I’ll set up the computer for him and he hammers aways, sometimes astonishing quickly with his right hand hunting down the keys in front of him.  Most letters come easily, but occasionally he’ll forget where the “g” or the “a” keys are and he has to find them through the process of elimination.  When I recognize that he has finished a word, I call out “space” and he diverts his hand from the first letter of the next word he was about to type to swoop down to the space bar and give it a smart tap with his middle finger or thumb.  Unfortunately his endurance with writing is limited.  He often stops mid-sentence and his outputs goes downhill quickly after a few messages.  He also has a restricted ability to think of what to write.  He wrote one friend four different versions of “hello” in a row until I helped him figure out a more interesting topic by asking him questions about what might be interesting to his buddy.  I don’t tell Tobias what to write, but I sometimes have to ask him questions so that he can frame the conversation.

One of the deficits that frequently accompanies injuries like Tobias’ is referred to as a lack of “motivation”.  I don’t really like this term because my preconception of the meaning of motivation is different than the deficit that I see in Tobias.  It isn’t that he wants to sit on the couch all day and watch YouTube, it’s more that he doesn’t think to engage with his surroundings.  He doesn't have a preference to not engage.  It's just that he doesn't think to do it.  This is another part of his damaged brain that I never knew existed.  For example, I visit Tobias on Saturday and Sunday each week and when I arrive, I announce myself at the door and show my interest in seeing Tobias with a friendly greeting.  Last Saturday, however, I tried something different.  I didn’t say anything when I walked in.  Tobias was alone in the room watching some German television that the nurses had turned on for him.  I walked up to his bed silently, but in full view.  I stood right next to him in the middle of his peripheral vision and Tobias never looked at me or said hello.  Finally I patted his shoulder and told him that I had arrived.  Tobias turned his head slowly toward me and said “wow.”  This same phenomenon is evident when he needs to relieve himself.  He can pretty faithfully feel when Mother Nature is calling, but he doesn’t think to tell us.  However, if we ask him, he’ll give us a reliable answer.  If he is in pain, he usually doesn’t tell us unless we ask.  I call this a lack of voluntary engagement, but happily Tobias shows signs of becoming more actively engaged.  In the past week, he has volunteered that he needed to use the restroom and has actively expressed thoughts and impressions that were withheld a few weeks ago.  He still has to be queried for most engagement, but this part of the brain appears to be capable of recovery as well.  There is still a long way to go.

Physically Tobias has made measurable progress.  His right leg is strong and faster each week and he can make step-like motions when his left side is supported.  Katja and I have walked with Tobias around the room each week for three weeks and this week I was able to confidently walk with him before Katja arrived.  His right leg is strong enough to support his weight so I buddy up to his left side and put my right arm under his left armpit and around his back.  Tobias wears braces on both legs that strap on below the knee and extend down to his feet.  The braces force his feet into a position that protects the feet from pointing and are gradually pulling them back to a normal angle relative to his ankles.  Because Tobias still has a severe case of pointed feet, the braces support the weight distribution so that he can stand without overstretching his muscles and tendons.  The result is that he is several inches taller in his braces so that I fit conveniently under his left arm and can support his weight with my shoulder easily.  Tobias has lost so much mass that his weight is easy to manage.  I hold his left side with my arm and hip while he takes a genuine step with his right foot.  Then I place my right foot under his left foot and pick it up and move it forward as well.  The motion is clumsy and plodding, but it is a bona-fide step and it’s a joy to watch.  He can’t move his left leg yet, but we always challenge him to move it.  Transitioning between bed and wheelchair, adjusting position in bed or wheel chair, lifting his bottom off the bed to aid in pulling up his warm-ups are all opportunities to train his brain to find his leg again.  I have no idea if that is scientifically proven, but I tell Tobias that his brain needs to find his leg again.  It knows how to move the leg, but it needs to build a reliable pathway back to controlling the muscles on his left side and every attempt will help his brain make the necessary repairs to get his life back again.  I remember how astonished I was in Salt Lake when the therapist asked Tobias to move his inert leg and nothing happened.  At the time I though they might as well have been trying to teach a dog to speak Spanish, but one day he started barely moving his right leg.  Thanks Shannon, Casey and Tyler!  We are continuing in the same vein and Tobias is beginning to show slight movements in his left leg and arm.  He can’t control them yet, but his right side used to be less responsive than his left side now is.  In the past, my optimism for Tobias’ recover has been a choice based on my desire for him to recover and the acknowledgement that until I was sure that he couldn’t recover, I was going to be positive.  Now my optimism has a foundation built on his demonstrated improvements.

Tobias still requires the feeding tube that enters his stomach just below his sternum.  He gets most of his calories through the same flexible hose that was installed months ago in Utah.  We have been focusing Tobias on improving his oral food intake because we would be happy to see the tube go and for Tobias to return to a normal process of taking his calories through the mouth.  Tobias hasn’t made much progress in this area.  His ability to eat is only marginally better than it was in December when we left Salt Lake for Germany.  Tobias has to be fed, which requires inserting the spoon into his mouth and usually helping to pry his teeth apart and depositing the contents of the spoon inside his mouth.  For some reason, he has a hard time opening his mouth for eating.  He also chews poorly and swallows worse.  He just can’t get the food from his mouth to his stomach so feeding takes 60 – 90 minutes and much of the food has to be fished out later when brushing his teeth.  Katja figured out a brilliant trick, however, and Tobias made a quantum step in feeding this weekend.  The trick that Katja discovered is that since Tobias now speaks reliably, when he needs to open his mouth to eat, you just need to ask him to say the word “Pow”.  The mysterious brain willingly opens the mouth for speaking, but refuses to cooperate for food.  Once the mouth is open, however, Tobias can keep it open and usually can even open it wider for food.  This worked well on Saturday and Tobias ate 75% of a large bowl of soup, which is a record for him.  The soup was quite fluid and easy to swallow so I didn’t have to clean soup remnants out of his mouth during dental care either.  Win!  On Sunday morning, I gave Tobias a spoon with Musli and he was able to bring it to his mouth, but his lips remained stubbornly closed.  I told him to say “Pow” and for this first time that I can remember since his injury, he deposited a spoonful of food in his mouth by himself.  I loaded the spoon with more Musli for him, but it must have not impressed him because he put the spoon back into the bowl of Musli and yogurt and it emerged again with an enormous payload of calories headed for “Pow”.  This led to many experiments at the end of which Tobias had successfully taken several spoonfuls of Musli, drank from sippy cup that he picked up from the table and moved four segments of a Clementine from the table to inside his mouth in a fashion that can best be described as ravenous.  It must be incredibly satisfying to finally eat food of your own choosing after seven months of feeding tube and force feeding.  I still had to challenge Tobias to say “Pow” to unlock the muscles holding his lips together, but later this afternoon, Tobias was able to open his mouth when feeding himself without the magic incantation.  I think that his brain was able to make the connection to open his mouth better because he was the one handling the food.  Unfortunately it didn’t help his ability to chew and swallow and I later fished out four pulpy Clementine segments that he wasn’t able to swallow.  It is also interesting to me that he fed himself four or five spoonfuls of Musli before we switched to Clementines.  I later asked him if he wanted more Musli and he said No and that he hated the Musli.  He wasn’t able to speak when I asked him so I switched the question to “Touch you chin if you want more Musli.”  Rather than raise his hand from the arm rest of the wheelchair to touch his chin, he dropped it down from the arm rest and pushed it as low to the ground as he could reach.  This action somehow unlocked his vocalization he clearly said, “I hate it.”  I didn’t respond, but it did make me wonder why he kept spooning it in.

Tobias has lost the ability to create memories, or at least the ability is severely impaired.  He doesn’t remember that I come to visit him on the weekend or that his mother stayed with him the day before.  Another peculiarity is that he has specific phrases that he tends to use almost all the time.  Instead of saying “yes”, Tobias says “Yes, but of course.”  Instead of “no”, Tobias says “No, not at all.”  Because of his lack of memory, he frequently answers with “I have no idea.”  It is interesting because he uses these phrases almost all the time.  Even placid situations get these answers, which seem extreme in many situations.  “Tobias, would you like to watch Netflix?”  “Yes, but of course.”  “Did you like lunch?” “Yes, but of course.”  I think this tendency is due to his injuries, but I don’t know if the injury caused the responses because it is easier for his brain to lock in on one answer and stick with it, or if he sees things in more extremes than one normally would.  But I digress, I was talking about his inability to remember things.  Every week I ask if he know what day it is and he always answers “I have no idea.”  I then tell him that I visit him on the weekends and he knows then that the day is Saturday.  He used to not make the connection between me visiting on the weekend and that creating a logical flow to concluded that the day was Saturday.  Now he is able to make the connection.  Progress! 

Today happens to be my birthday so I asked Tobias several times if he knew what today was.  He answered “I have no idea.”  I responded that it was “April 10^th” and he always responded in a way consistent with his recognition that it was my birthday.  “Wow”, “Happy Birthday”, “Congratulations” etc.  Tobias has never wished me Happy Birthday as many times as he did today, because he forgot so quickly that I could repeat the experiment every 30-60 minutes.  I was trying to discover if he would eventually remember that it was my birthday, and at the end of the afternoon, he remembered that it was my birthday, even though I hadn’t brought it up for an hour or so.  This is a positive sign that he can still commit things to memory and that his brain will be able to restore its ability to process and retrieve short-term memories.

I think that’s everything I wanted to document about Tobias’ recovery over the past several weeks.  He has made so much progress that it was hard to fit everything in and I may have forgotten some cool ability that Tobias has relearned recently.  I’m going to end with the recognition that I am healing from the trauma of Tobias’ injury as well.  I don’t know if it’s because time has lessened the pain or whether his recent improvements have changed my perspective.  In any event I feel better now that I have since August.  As you can imagine, I am gutted with grief and heartache about losing my healthy son.  I’ve been emotional many times and I found it impossible to look at pictures of Tobias from before the injury because it was too heavy of a reminder of what he has lost and what Katja and I have lost.  I noticed the other day that a screensaver on the TV was a healthy, strong, full head of hair Tobias and that I could look at him with appreciation of what he was and what he is becoming without tearing up.  Tobias is on the road to recovery and so am I.

Hope over fear.