Very Merry CVI friendly Christmas!

It was a very merry, CVI friendly Christmas at the Ellis home this year! Brady was born with healthy eyes and seemingly appropriate vision. To this day his eyes are still seeing everything any typically developing child would be. Due to his anoxic injury, however, his brain is no longer able to make sense of the messages his eyes are sending to his brain. His loss of vision is considered CVI...cortical or cerebral vision impairment. Since it is a brain issue and not related to the eye itself, common remedies such as glasses or eye surgeries will not assist in improving vision.When Brady was in ICU back in November 2015 testing show that there was no connectivity between the eye in the brain at all, although in-person exams by a neurologist suggested that maybe there was a glimmer of something. Fast forward to May 2016, Brady's sight had improved to about 20/330, indicating that some pathways had been created. We do believe that his vision is inconsistent so it is hard to say whether or not Brady sees at this level all the time or only when his brain is in it's most alert state. This test was readministered the day before Thanksgiving this year and Brady had improved to about 20/270. The same questions remain: Is this Brady at his best? Is this Brady on his worst day? And how consistent is this vision? While we don't know the answers to these question, as his family we are very pleased that he is making some progress. Unfortunately, the neuro-opthamologist did not have as positive a reaction as the average child Brady's age should have 20/60-20/80 vision. Of course this is a vast difference but we have not ever expected that he would be "cured" overnight and know that vision will always be a challenge. A year ago he had no vision, so it stands to reason in our minds that progress of any sort is a step in the right direction. He continues to struggle with infantile spasms that are still not responsive to treatment. Because this form of epilepsy can actually cause regression and further damage we are so pleased that Brady's brain is creating some connections, no matter how small the progress. We see the fact that there has been no regression in his vision as a miracle in and of itself. Early Intervention (EI) has been an important part of Brady's weekly routine since early summer. One integral service provided by EI is through Perkins School for the Blind. We have learned from Brady's wonderful Perkins therapist that red or yellow things on a dark or black background, metallic items and movement create the best scenario for Brady to recognize objects with his eyes.

We tried to integrate as many CVI strategies into the Christmas season as possible this year. We bought red Christmas lights for the tree and used mostly sparkly ornaments that would reflect the light and create a sense of movement. Brady helped decorate by painting his very own snowflake tree topper in one of his therapies! We also found a small holiday projector that gives off a red glow and projects bits of moving light. With all of these strategies in mind, Brady's extended family got him some wonderful toys that will be perfect to help him continue his progress. He got a "galaxy wand" that creates spinning bright colored lights in the dark and lots of items that make music with bright lights to draw in his attention.

Brady also spent an afternoon at Jordan's Furniture in Avon to see the LITE show. Bright colorful lazers accompany cheerful holiday music in a dark movie theater setting... What better way for someone with CVI to take in some holiday fun?!

There are so many questions about Brady's vision and much is unknown about the type of progress he will make in the future. Even though we don't know what Brady can see, we hope that he caught just a glimpse of all of the Christmas magic around him!