This weekend was a huge treat for our family. Ray’s company had a retreat for their board members, physician leaders and managment leaders at Ihilani, a beautiful resort on the leeward coast.
My highest hopes were for two consecutive nights of sleep in a bed! (Usually I sleep on a futon on the floor next to Abbie’s bed.) Well, I did enjoy the comfy king bed, lots of pillows, and QUIET. But, God had much, MUCH more in store for me.
Last month, while flying to Chicago, I read an article about a new brain imaging technique called Diffusion Tensor Imaging (DTI). The unique thing about DTI is that it produces images of the white matter of the brain, which have never been available before. In reading the article I was sure that only top-flight research centers would have this technology.
I did not know that Ray’s company has a joint venture with an imaging company, whose owner was at the retreat to give some presentations. I missed those, but was fortunate to run into him at the pool. I asked him if he’d heard of DTI, and if anyone in Hawaii was doing it. He grinned and said, “We just started using it for a large study that the University is doing. Call me next week and we’ll run Abbie through.”
Just like that.
All I’d wanted to know is if anyone had it, and now we are going to be able to do it very soon with Abbie! We will be able to see exactly where her areas of injury are in the white matter, but even more intriguing to me, DTI can perform “tractography” within white matter, which means it can follow one fiber its entire length. This will let us see which parts of Abbie’s brain are connected. The picture below is a tractographic study.
Also attending the conference was a pediatric neurologist I’ve heard great things about. I felt as if I were stalking him the entire weekend, but finally got a few minutes to talk with him today. In that brief time he introducing an entirely new idea about Abbie.
He’s found that with the CP kids he treats, often, putting them on anti-spasticity drugs reveals an additional challenge they are facing, dystonia. He defined this as when both oppositional muscles fire at the same time, instead of one contracting and one loosening to let the body move. So, instead of fluid movement produced by teamwork, the body is locked as the muscles fight each other. I had never, ever considered that Abbie may be dealing this. He said there are medications that are effective in helping this, so more time at PubMed is in my immediate future. (For my fellow Brain Geeks, the drug he likes is an anticholinergic called Artane.)
When speaking to the group today, Ray said that the weekend was successful if we all laughed a little, cried a little, and learned a little. Watching a DVD of a little boy laughing after his cochlear implants were turned on for the first time brought tears and laughter simultaneously. A widow sharing the story of her critically-ill husband wanting to die in the sunshine, and the staff finding a way to allow that to happen reminded me that our most profound legacies may come through what initially looks like defeat. The hospital is now designing a healing garden in his honor, that will allow so many more patients to feel the sun on their skin when they need it the most.
On Friday I was excited to spend time with my husband, getting a glimpse of his world. On Sunday I am typing this overwhelmed at the veracity of God’s Word and His faithfulness to it. With so many things lately, we are receiving more than we ever could have thought or known to pray for.
“Before they call, I will answer, while they are still speaking, I will hear.” — Isaiah 65:24