Day 64 (Oct 28)

Tobias had higher storming symptoms today.  As usual, we aren't sure what the root cause for the symptoms are.  Tobias' heart rate was over 100 most of the day, but stayed below 110 for the most part.  We saw a spike to 120 and the aide recorded a heart rate of 150 at 7am before we arrived.  His muscles were more rigid and his fever ran slightly high.  He didn't sweat much though and I don't remember the last time he had the shakes due to storming.  His eyes were frequently open and his demeanor didn't indicate that he was uncomfortable or in pain.  The reason for his storming may be the increase of the brain stimulant.  Since yesterday the dosage has been doubled to 200 mg.  We spoke with the resident doctor in the afternoon and he suggested that there may be some underlying pain caused by the cast on Tobias' leg that resulted in the storm-like reactions.  Once the nurse administered a Tylenol dose, Tobias' heart rate settled down.  It could also be residual pain from his cranioplasty surgery.  We don't know.

On a positive note, Tobias has been more alert today and he spoke more than any day since the injury.  His eyes were wide open when we arrived this morning and he was only exhausted to sleep for 30 minutes following his physically demanding therapies.  He recovered quicker than before and seems to be gaining endurance.  The changes are minute, but they are all going in the right direction at this point.

For some reason his head has been turning to the left more than ever since yesterday.  I had a more difficult time turning his head back to "neutral" because it felt like his muscles are stuck in the "look left" position and he was incapable of holding a neutral position.  This has been the case for two days and yesterday we asked for a massage therapist to work on the neck and back muscles that are pulling his head left.  Today was the first massage.  It didn't have an immediate impact, but the therapist walked me through the process to work on Tobias' muscles and encouraged me to give Tobias' muscles some extra attention.  He recognized that Tobias' muscles are extremely tight and that they will require more massage time than the process will allow him to supply.  I tried my hand at massage after the therapist left and it felt to me like his muscles relaxed and became more fluid, but his head is still cranked to the left.  I feel positive about working with his neck, back and arms and believe that I can make a positive difference for him overtime.  It's nice to have a productive outlet for the good I want to impart to Tobias.

Most people's three favorite words in the English language are probably "I love you" and today we heard them from Tobias.  Katja and I were working with Tobias and had just sat him back to rest on his bed when he and I met eyes.  I am proud of the effort that Tobias is putting in and gratified by the progress he is making.  The way he looked at me I knew that he was in the moment and knew that Katja and I were behind him and doing everything we can to help him.  I felt a surge of fatherly love for him and it felt natural to smile and say "I love you, Tobias."  He hesitated and his lips quivered for a moment before he whispered a clear "I love you too."  We will be celebrating October 28th as "I love you too" day for many years to come.

Hope over fear.