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, May 12, 2013

Hello everyone. Todays update on Benjamin is full of victories and challenges. Benjamin moved from Touchstone Neurorecovery Center on 4/23/2013. The decision to move him at that time had to do with insurance coverage. Jim and I tried to admit Ben to a different facility for care and recovery. This facility didn't work out. After 2 days, we picked Ben up with few options. For the last 2 weeks, we have hit road block after road block looking for the right choice for rehabilitative care. I know that the answer is coming soon. God has been directing this from the beginning. For some reason Ben needed to be out of Touchstone. something better is on the horizon.
I have been reading a book about Elijah. Two amazing quotes,"If you are where God has sent you, you are invincible" and "If we follow God's lead, he will always take care of us. The manna always accompanies the pillar of cloud". In the midst of the mess, God is providing. Expert physicians in brain trauma have provided the letters and opinions for an organized insurance appeal. An amazing physician with 45 years of expertise in the area of brain trauma, Dr. Ralph Lilly, is providing guidance, instruction, and support to me through this phase. I am crazy about him. Funding through a program called DARS may become available soon. A district manager for DARS has become personally interested in Ben's case and contacts me often. A program which I would love Ben to be in is working to help Jim and I find a solution.
The victory I have save for last. Ben is better: amazingly better. He is no longer somnolent and sedated. Ben was tested 3 days ago and had a borderline performance. Today Ben was tested and he "blew" them away. One test for language retrieval showed a score of 50 out of a possible 58 points. He read well, was able to write sentences, interpret pictures, knew demographic data etc. Although still having some mild behavioral outbursts, they are so diminished at this point to be considered "annoying" and infrequent. The new medications are working. Prayer is working. Not all is perfect; Ben thinks it is 2009, although he knows it is Wednesday. His balance is improving. He took a shower by himself and walked back and forth to the bathroom today with little help. We have a tremendous amount of recovery ahead of us. Ben just called me on the phone. He was excited about the testing today. He wants get in the car with me so we can go somewhere to celebrate. Soon, Ben, soon!
Please pray that resources and opportunity for continued care present themselves soon. Ben is ready to "get in the car".