Jim and I continue to be impressed by the diligent and specific care Ben is receiving at the current neurorecovery center. One year ago Ben was just starting to specifically response to commands, could only stand with help and was on tube feedings. Last Thursday Ben went to the grocery store with others from the treatment center. He had to locate 4 items on a list which were important for the evening meal. HE DID IT! Ben is walking with very little help for balance. The wheelchair is gathering dust. The therapy team has Ben folding laundry, sweeping floors, and taking out trash. He loves sanding and painting signs for the garden that the facility is installing. Ben also helps care for the garden plants.
The physical therapy team reports that his endurance and balance have improved. He remembers the strategies taught for balance, but thinks they are silly and won't utilize them. (This sounds a bit like the old Ben). His attention and duration on the exercise bike has moved from 5 minutes to 30 minutes. The intensity is much higher during the activity. Cognitively Ben still has the struggles I have previously mentioned but this week he did much better in speech therapy. He is cooperating with learning strategies which help with memory and completed 70% of the memory points successfully on one assessment. He worked on an activity for following written directions for 25 minutes and scored 90% correct on an assessment for reading and listening comprehension. Struggles continue to involve distractibility, fixating on certain things over and over again, and difficult behaviors (every few days, not daily). He often doesn't remember the year and his speech patterns can reflect past present and future events all at the same time. The aphasia/paraphasia (difficulties with using the correct word) still occur as well. We talk often on the phone. I thank God for miracles every time he calls.
It seemed appropriate that my devotional today talked about the road to Emmaus where Jesus was walking with his disciples after the resurrection. The disciples were declaring their "shattered faith. They had no hope. As they walked, where was Jesus?.......Right by their side! God is with us!
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.