Oh bloggy, blog, blog. Did you miss me? It's been too long! Having this blog has not only helped me to connect with amazing moms of children with nystagmus and ocular albinism, but it helps me feel like I'm partaking in adult conversation when I'm locked in the house with toddlers for 12+ hours a day. There is only so much, "ew, stinky poopies!" a thoughtful and intelligent person can take! But...over the past two weeks, our normal routine was shaken up by a new, almost non-existent nap schedule, and I'm having a hard time figuring out where blogging fits back in.
Today, we spent all of our morning and most of the early afternoon out of the house, so they are pretty happy to be home and chasing after the dog, for now. And so, I write!
What took all morning was a visit to UC Berkeley. Almost a year ago, Makayla's vision therapist helped us get into a research study at UC Berkley, in which they are studying how children with visual impairments learn about, and understand, the world around them. For our participation in the study, the optometrist overseeing the study provides annual eye exams.
Makayla had her first when she was 9 months old, and we learned that she has only a very slight astigmatism, and that at that point glasses would not be beneficial. The optometrist also preformed a VEP during that visit, which Dr. Hertle was able to use, since Makayla did not cooperate in Ohio. The optometrist also predicted that, as her nystagmus improves (as it often does up until age 6), her vision may improve to be as good as 20/50 or 20/40. To give an idea of how good that is, my "bad eye" was 20/40 at my last eye appointment, thanks to astigmatism, but I can still drive without any required correction.
Today, I got to share with the optometrist all about our trip to Ohio, and that we'll be going back soon for surgery. I also shared with her that Dr. Hertle diagnosed her with a very mild form or ocular albinism. She was very excited to hear all the news and updates on Makayla but had her doubts about the ocular albinism diagnosis... She said that Makayla's ability to see contrast has greatly improved and that she is in the normal range for kids her age. She said that the VEP test showed that Makayla sees quite well, but noted a new nearsightedness. Part of Dr. Hertle's after surgery plan is to get Makayla in contacts as early as possible to help with light sensitivity and to slow her nystagmus, but since she now has a nearsightedness the optometrist predicts that by the time she is in the contacts, she will likely need a prescription.
We also did a new VEP test today, which Makayla was very cooperative and happy throughout. The VEP test is a strange looking test where they put several leads on Makayla's head for measuring her brain waves, as she watches a monitor with various moving and flickering lines. The optometrist explained that they are measuring her brain's response to various details and contrasts in the lines to determine how well she sees. They did the test with both eyes, then just with the left eye (since the left eye is currently dilated in preparation for her upcoming surgery), then they did both eyes at a further distance. They will be sending the results of the exam and the VEP test to Dr. Hertle before her surgery.
The optometrist says that Makayla sees very well. She said that her vision is "reduced by 2". Normal would be 0 and she explained that most the kids she sees with nystagmus and ocular albinism are reduced by 6 to 10. That being said, her depth perception will likely always remain very poor and she will always be sensitive to light, and obviously both of these things will effect her vision outdoors and in new places. The surgery that Dr. Hertle will be doing will still help her vision.