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.

Thursday, March 7, 2013

Hello everyone. Lots of new things have happened in Ben's life since my last update. As we settle into this new phase of recovery, the ups and downs experienced from week to week have become the norm. Because Ben is 9 months into his recovery period and he still has not recovered from post injury amnesia, his prognosis for long term functional recovery is guarded. Ben has good days and bad. He will be social and charming, eager to please and learn, only to be followed by extreme oppositional behavior accompanied by inappropriate language when faced with the smallest frustration. He simply can't remember what he has learned and the distractibility he exhibits requires constant redirection. Because of this, his doctor has reduced traditional therapies and is focusing on the classroom based cognitive interventions and home based activities. Benjamin still receives traditional physical therapy and walks often with the staff in-between sessions.
Ben's medications continue to be a struggle. I have had many "doctor mom" moments of extreme frustration with the medications that he has been on. Waiting on the effectiveness of psychiatric medications takes a long time, however there SHOULD be evidence along the way that the choice is a correct one. Finally, a blessing in disguise occurred last Saturday when Ben had to be given an injectable medication for sustained inappropriate verbal behavior. This medication is an old one, used for mood. It should have "zonked' him. To my surprise when I went into his room, Ben was happy, easily redirected, conversant and compliant. I emailed his doctor and said "LETS TRY THIS ONE". I am not sure that you can shout in an email, but I sure tried. Ben started the new medication yesterday and the old one (that I hate) is going away. Please pray for Ben's mood and behavior. His "joy" is still there, but I see less of it. Behavior is the major obstacle to Ben rejoining us in activities outside the neurorecovery center. As traditional therapies are deemed useless for Ben, I believe that moving into new areas of stimulation for him is key to improvement. There are other programs available to Benjamin if this "mountain" can be moved.
I spent all morning with Ben yesterday. We walked the beautiful campus, including the on campus greenhouse in our tour. Ben was interested in the plants and spent time looking at all the varieties cared for there. I still see "flickers" of self awareness. When I firmly told him to alter an observed behavior, he looked at me as said, "Mom, I want to straighten up. I don't want to be like this". It was a fleeting moment. I needed to see that Ben knows what he needs to do even though the damage in the reasoning part of his brain keeps it from happening consistently.
I have reread notes written at the beginning of this faith journey. Nehemiah 9:19 says,"You in Your great mercy forsook them not in the wilderness: the pillar of cloud departed not from them by day to lead them in the way, nor the pillar of fire by night to light the way they should go". i have had to move into a new way of thinking with Ben's recovery. If memory and behavior issues are moving him toward more "home based" interventions, perhaps I should augment this instead of fighting it. Yesterday a friend gave me a large planter, sturdy enough to stand next to. Ben and I are going to grow things at his house. I am praying for new ideas. I am praying that the medications will improve his mood. I am praying for attention and memory.
I have added pictures from Ben's 24th birthday party. It was a special time with family and friends. He loved every minute of it. Ben is still a miracle. God is working. It will be good.