I returned this evening from a weekend with Ben. He is in an amazing, restful, beautiful place. I know this is exactly where he needs to be. The progress he is making is slow and steady and SIGNIFICANT! Conferences on Wednesday with Ben's care team lasted about an hour. Each therapist gave an accurate assessment of Ben's current status, plus concrete goals and a plan to achieve those goals. Physical therapy described Ben's walking gait as "unsteady, wide based, with not enough heel contact". She followed with specific strategies to improve his gait and mentioned that Ben's tolerance of the exercise bike has increased from 30 seconds to 10 minutes.
Occupational therapy discussed self care issues and Ben's limited motor planning. Ben needs to figure out the steps involved to shower, dress, etc. He can do the self care, but needs constant verbal prompting. His attention span remains extremely short. She also mentioned that Ben's visual processing is off and that his fine motor skills need work as well. Each additional therapist presented their clinical findings. It was detailed and accurate. Identifying the deficits with a plan is extremely encouraging. One staff member told me Ben likes to know his schedule stating, " I like knowing what I am going to do next. It makes me feel better." He is interested in his day and seems to be enjoying the challenges.
It's hard to describe the unbelievable difference in the Ben today compared to a month ago. He is joyful. He no longer uses a wheel chair. He calls Jim and I everyday to see how we are doing. He is interested in life. He loves visitors and yearns to be able to "hang out" with friends again. Ben is enjoying outside projects that involve sanding and painting. He stays outside as much as he can and walks all over the property. He requires a helper for balance, but it doesn't slow him down. He can concentrate on board games with family and friends a little longer each time we play them.When Ben drives me crazy asking the same questions over and over again, I remind myself that it is a miracle that he is speaking at all. A young friend visited Ben today with me. I asked Ben to pray for this young friend who is looking for a job. Ben said to him, "I'll do that. I'll put my foot in the door." Although the wording is an example of Ben's paraphasia (inability to come up with the correct word), I love the picture of "putting our foot in the door" for someone when we pray for them. Holding the door open for God to work. God is working on Ben. It will be good!
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.