Day 68 (Nov 1)

Following the pattern of the last couple of days, Tobias reversed course from the prior day, which happily means that today was a good day for Tobias.  I was anxious to apply the hot washcloth to Tobias during one of his therapy sessions to validate if the impact extends beyond helping him find his words.  His first session was at 9:45 and was a joint PT/OT therapy.  The regular OT was out today, but the PT knows us well and she was game to try the "wake up wash" liberally during the session.  Tobias was indeed much more awake that he has ever been during a session and his face has never been cleaner.  He responded well to the exercises, none of which were new for him.  They had him sitting at the edge of the padded table with his feet resting on the ground.  The PT positioned herself standing on the table behind him supporting herself against a large exercise ball.  She held Tobias steady on the table, but allowed him to hold as much of his weight as he could bear.  They would have Tobias hold his head as steady as possible for as long as possible.  He did well and was able to hold his head steady for 15 to 20 seconds.  They also bent Tobias to the right and the left, and let him hold his weight by placing an elbow as support.  He was supposed to push up off of his elbow with his arm to sit up straight again, but this too much for him.  The OT believed that Tobias was trying to push off, but his ability to bring strength to bear anywhere is far too low to help with such a big move.  Tobias was able to move his right arm more than he has before.  He lifted his hand three or four inches off of his lap and pushed out to reach my hand.  The OT took one of the wet washcloths and asked Tobias to wash his left arm with his right hand.  He was able to move his right arm along his left arm for a few inches and back.

After the morning session, I took Tobias outside to enjoy the first day of November's mild sunshine.  Katja saw us from the window and joined us after 15 minutes.  I had been walking Tobias around the garden and when I grew tired of the repetition, I sat on a bench and pulled Tobias' wheelchair back toward me so that I could give him a gentle message on his neck and back.  I found a spot on the left side of his upper neck where the muscles and tendons were as tight as a tennis string, but I wasn't able to loosen him up much, I'm afraid.  I'm taking the approach that "every little bit helps" even if it just helpful for me to learn what doesn't work.  I'm not adventurous in my massage therapy because I worry that I might be hurting Tobias or making his situation worse.

Katja and I put Tobias back into his bed so that he could rest for an hour before the next therapy session and to give us a chance to nip away for some lunch.  We arrived back 15 minutes before the scheduled therapy in order to move Tobias back into his chair so that he would get as much therapy time as possible.  We got some good news and some bad news.  The good news is that he doesn't seem to be retaining urine anymore.  The bad news is that the non-retained fluid has to go somewhere and his brief is no match for his ability to not retain.  We sometimes have to give him a new change of clothes three times a day and we worry that we should be checking his brief more frequently so that he doesn't have to sit in the unpleasant stuff any longer than necessary.  I joined the OT for Tobias' afternoon session and she kept him in the wheelchair.  She used the washcloth anytime that Tobias seemed to be drifting off and it kept him alert and active for the therapy.  He continued to move his right arm and even said "bye" at the end of the session.

Katja joined the PT for Tobias' afternoon PT session, while I caught up on work in the room.  The general feedback from the therapist is that Tobias has never had such an alert day and he seems further in the exercises that were asked of him.  He kicked a ball with his left foot during the afternoon session.  "Kicked" is the wrong term.  He moved his foot in slow motion until it made contact with a ball, but these are all things that we can practice with him in order for him to decrease his response time, increase his speed and extend his range of motion.  I practiced his arm movement later in the day while he was fully reclined in the wheelchair.  I supported his elbow so that he only had to flex and extend his elbow, but he didn't have to support the weight of his arm.  He was able to move his right hand several inches in the direction of his knees and then back to touch his left arm.  He also opened his hand by extending his fingers two inches from their fist posture and then gave me a weak squeeze when I put my hand in his.  Katja got some of the success on video so that we can show him later how far he has come.

The resident doctor dropped in to check on us and I asked about the medications that Tobias is still receiving.  He isn't storming much and I was interested in knowing if his alertness would increase if the storming medication was reduced.  We have a "family meeting" this week with the doctors and therapist and we'll get to ask questions like this.  The resident confirmed that they have been discussing reducing his gabapentin, bromocriptine and propranonol doses.

Hope over fear.