The purpose of this blog is to show how faith, my professional training and a healthy sense of humor taught me and continues to teach me that Jesus Christ is always in control. I am a fellow learner as this journey for my child unfolds. My wish is that Ben's legacy gives others hope where there seems to be none. It is also my desire that the information I have assimilated with my medical mind and filtered through a mother's heart gives practical ways to deal with this ever-changing chronic disease. Finally, for the many friends and family members who continue to follow Ben's life change after the injury, the story continues.

Sunday, February 17, 2013

Benjamin remains in treatment at the neurorecovery center. He continues in cognitive therapy for brain function and memory, physical therapy, occupational therapy, and speech therapy. The difficulties involve balancing Ben's medications to optimize his brain function. With medications that improve his initiation and attention, we often dealt with unacceptable behaviors. With medications for mood, he is more sedated and participation isn't optimal. Ben had a rough day Friday. I spent 5 hours with him on Saturday. Although he started down the path of unacceptable speech a few times, the episodes were short and aborted quickly. It is encouraging to me in the midst of the "mess". I watched his face. It is easy to see what will be about to trigger an unacceptable response. Timing of a question of how he wants something done or identifying that he is about to be asked to do something he doesn't like minimized the bad behavior. Distraction is also helpful. Ben's brain is moving.....changing, learning. It isn't fast, but change means HOPE.
Ben's walking is improving. He is becoming more independent in his personal care. He loves visitors. He loves his family. Ben has frequent moments of clarity. I was speaking with Ben about how he should ask God to help him stop the behaviors that do not reflect HIM to the world. Ben is trying. He said, " I heard it from you and it stuck with my heart". He looked at a staff member and remarked, "My mom isn't happy and that makes me sad." Ben knows what he needs to do. He is battling himself. Please pray for this battle to be won. Ben's doctor needs wisdom. Ben needs a renewed mind. Thanks everyone.

Tuesday, February 5, 2013

Dear Friends, Ben is still receiving treatment at the neurorecovery center. He is showing slow, steady progress, although there are remaining significant impairments. Ben is walking more and more. I am seeing "flickers' of a returning sense of humor. His memory for events, both recent and in the past, is unpredictable. The blessing is the periods of clarity that occur here and there. Ben was looking at the scar from his tracheostomy, (the opening in his neck used for breathing in the intensive care unit), in the mirror last evening. I saw a bit of vanity as he gazed at the healed incision. He said, "look at this...It's a burn." I replied, "No, Ben, it was from the breathing tube". Ben quickly told me he didn't want to think about it. It was a flicker of recognition/memory. Dr. Cassidy tells me that remembering would be a good sign. Dr. Cassidy is still adjusting medications.The challenge is keeping his temper even, reducing impulsivity, increasing attention span without sedation or overactivity.
Ben is more alert and able to participate in games, puzzles, and activities. His remarks can be inappropriate at times because of the damage in the right frontal lobe area of his brain. It is important for me to remember that even though the positive changes that I see are small and SLOW, (slow is tough for me) , the changes show that Ben's brain is still changing.....healing. Neuroplasticity is the ability of undamaged parts of the brain to take over for the damaged areas. Research shows that most of the recovery from traumatic brain is within the first 6 months. What I am seeing doesn't reflect this statistic. Ben's injury was 8 months ago. His youth will help beat the odds. Prayer will help beat the odds. God isn't finished with him yet.
I visited the neurorecovery center Monday evening with Alex, a young friend who played youth hockey with Ben. Ben was happy to see us. The love he has for family lights up his face at every visit. He definitely wants something be a part of the outside world again. I believe this will happen. We walked around the house. We walked outside. He stood alone for a long time. When I asked him to tell me one thing he prayed for today, Ben said,"mood stabilization". It blew me away. He knows. Please keep Ben in your prayers.