It was a beautiful day at the Texas ranch where Ben lives and receives the necessary therapy for his traumatic brain injury. The day was cool and pleasant after the summer rain and Ben and I took a walk to pet the horses in an adjacent field. Even though Ben walks unaided with excellent balance, an attendant is close by at all times for assistance and therapeutic companionship. After the walk, Ben and I played a game of "Sonic the Hedgehog, Unhinged" on the X Box for the first time. He loved it and amazingly remembered the control maneuvers with little instruction. We played about an hour. It may seem like a small thing, but to learn, retain, perform the motor skills, and remain attentive for this length of time is a huge victory.Afterward Ben worked on applying a wood stain to a birdhouse that I purchased for him. Cognitively, he is struggling. Ben has to be reminded that he is not at camp or school and that the therapeutic staff members are not counselors. Often what he says is nonsense. Often what he says is true. Ben is getting better and better. It was a good day.
The challenges in maintaining Ben in an appropriate therapeutic environment remain. Insurance discontinued his care again last Monday and then extended his stay in the neurorecovery center at the last minute till Tuesday of this week. We have no monetary limits on our policy for long term rehabilitative care. The insurance company requires frequent updates to insure that Ben is making progress. They are eagerly looking for a "plateau" to justify disallowing care. Quantitative clinical reports and a verbal report by Ben's doctor to the insurance company document the marked improvements. The insurance company gets to ignore all the evidence if they choose and decide that Ben has "plateaued". We had a step down facility evaluate Ben last week for admission. the facility turned him down. Ben lasted only two days in a similar step down facility 2 months ago. Ben has Medicaid as well as insurance, but there are no neurorehabilitation facilities that take Medicaid. There are no group homes for victims of traumatic brain injury if the injury happened after the age of 18. The average daily cost of the essential therapy that Ben needs is $500-$1000 per day. DARS is a state agency that may cover this cost for 6 months........starting in September. Ben is not ready to come home. It wouldn't be good for him and it wouldn't be good for us.
I spent a quiet morning reading stories of victory in 2 Chronicles. When Judah in the days of King Rehoboam was surrounded by an ambush, God fought the battle and won. God "smote the Ethiopians" for King Asa (2 Chronicles 14:12). The Ethiopians had a "host of a million" soldiers ready to attack. The Amplified Bible says that a "host" is too many to be numbered. Sometimes I think that the problems Jim and I face when caring for Ben are "too many to be numbered". Impossible odds mean nothing to God. I have faith that God will show us the way in this battle. Thanks friends, for your prayers!
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.