Day 33 (Sep 27)

Do you remember what you were doing 25 years ago today?  In 1996 on September 27th on a day very similar to today, Katja and I married.  For the first time in 25 years we are celebrating our union in the same area where we tied the knot.  We would wish for different circumstances for our silver anniversary, but despite the difficulties facing Tobias, we are grateful for each other, for our children and for the joy we have experienced together.  25 years of marriage has taught me that love can grow through happiness and heartache alike and that everyone gets chances to go through both.  Our love now isn't greater than it was 25 years ago, but it is wiser, humbler and more understanding.  We know how lucky we are.

Tobias had a better day than over the weekend.  He still stormed quite a bit and his occupational therapy in the morning had to be broken off because he was storming with his heart rate was in the 140s.  The poor lady wasn't used to her patients sweating like a wet sponge and his vital signs had her visibly concerned.  We were in the gym so we hoisted him back into his wheel chair and brought him back to his room.  The afternoon session was aborted before he even got into his wheel chair for the trip to the gym.  He was storming and his limbs were too stiff to be of any use to therapy.  His blood pressure has taken off today.  It climbed during the day and his systolic BP hit 187 on the high end.  We met with the main rehab doctor and he was looking into how Tobias has reacted to the changes in medication.  He and his team will be looking into finding the right mix of storming inhibitors and stimulants to get Tobias fitter for the daily therapy.

Typical sweat during storming

There were good moments today for Tobias.  He is awake for longer stretches during the day and his eyes are tracking better.  He can't track regularly, but he locks on to objects with his eyes occasionally and can track them for a few inches.  He also responded better with his lips during his therapy with the speech therapist.  He appears to be attempting to chew or open his mouth when the therapist offers him ice.  There were long stretches during the morning when he rested peacefully with his eyes looking around the room.  We welcomed the positive developments after seeing setbacks over the past two days.

Just a short blog post today.  It's our anniversary and I'm taking my wife to dinner.

Hope over fear