Another MRI and Another Visit

On Wednesday we received a phone call from Lola’s new neurologist, Dr. Jennifer Zimmer. She personally called herself to tell us the MRI CD from Costa Rica was simply too hard for the radiologists to read. This means Lola will indeed have to have another MRI as Dr. Zimmer doesn’t want to give Lola an official diagnosis without it. While we had hoped the MRI was readable as another MRI means Lola will be going under general anesthesia, it will be good to have images from a much more advanced MRI machine. But what I found simply astonishing was that Dr. Zimmer called herself to relay this news to us. I am so glad we sought out another neurologist as Dr. Zimmer is exactly who we were looking for. Our parental instincts are there for a reason and when it comes to something important like my child’s health, well…she deserve nothing but the best.

Yesterday morning we were lucky to have another visit with Ann Hughes from VIPS-Bloomington. The session started out with Ann singing the “Hello” song for Lola which she so beautifully plays on her ukulele. For some strange reason, I can’t help but hold back the tears every time she plays it. I think I am just thrilled to have found someone that can help us understand our daughters vision impairment. Ann explained the session would be a lot of paperwork as she needed to do an assessment of Lola’s vision. She put out several toys to keep Lola occupied while we began to score Lola’s vision capabilities on Dr. Christine Roman-Lantzy’s Range Rating Scale. The scale ranges from 0 (nearly blind) to 10 (normal functioning vision). Based on the answers of function-ability from the three of us, Lola is currently at about a high 4 to low 5 on the CVI scale. Considering we once thought Lola was nearly blind, I think this is a remarkably high number for Lola. In about three months, we will do another assessment to see where Lola falls again. This will help us understand where Lola’s strengths and weaknesses are and what areas we need to work on with her. I must say it was rather comforting to have a better understanding about Lola’s use of her vision. Nobody has been able to tell us what Lola actually sees and while the CVI scale isn’t a clear cut answer, it at least provides us with some insight on Lola’s vision. We are currently working on permission to publish the scale to give you all a better idea as to how the number system works.

Along with the CVI scale, Ann applied a few other vision tests on Lola. She first wanted to distinguish if Lola had a preferential color. Lola did quite well with greens and of course yellow and reds. We found blues were hard for Lola to focus on so Ann suggested we bombard Lola’s visual cortex with a plethora of blue items. We are to simply look around the house for anything blue and set it on Lola’s black blanket. This overload will help stimulate that cortex so that blues are easier to recognize. Ann also tested other areas such as ability to recognize contrast, latency and a couple of blink tests. There was no right or wrong way for Lola to respond to these tests, but Lola did quite well. Latency or a delayed reaction at grabbing objects was there, but the number of seconds it took Lola to reach at the object was quite small. Lola was able to recognize higher contrast pictures than lower. And while Lola did not respond to a visual threat such as a hand in her face, she did respond with a blink when a finger was put on her nose. It brought such joy to Rob and me as we watched all that Lola was able to do with her vision. It has been a hard struggle for our girl, but she has worked hard to get where she is today. Ann offered us many great ideas to help Lola understand her own world. She closed the session with a brief biography in how she began as a visually impaired teacher. Again, I can’t say enough good things about Ann and the VIPS program. My only regret from the session is that I didn’t take any pictures!