Parent of a Child with Albinism

Lyra has been been working on activities using a light box during her last few sessions with her TVI. Specifically she has been working on shapes and color sorting. Using the light box really motivates her to sustain her attention to an activity for a longer period of time. It makes the learning activity more fun and visually stimulating.

Illuminating the colors and shapes makes them easier to see. (more…)

Okay so I found some time to make this video.

This is my attempt at zooming in on Lyra’s eyes so that you can see the degree/severity of her nystagmus. I apologize for my crappy camcorder skills. Between me not holding the camera steady and Lyra’s wiggling, it’s hard to know what shaking is actually her nystagmus. Every once in a while I was able to catch her holding still with her eyes wide open. Look for those moments and then you should see her nystagmus.

The first part of the video was filmed in the early afternoon and the second half was right before her bedtime. Sometimes her nystagmus is more noticeable when she is tired. See if you can tell a difference. I couldn’t.

Nevermind my singing…LOL… I promise I really do have a degree in music education.

I have been meaning to post this for several weeks. Lyra visited her pediatric ophthalmologist for a check-up last month.

They dialated her eyes this time to see if her refractive error had changed, and it did. Her prescription changed from +2.50 to +3.25 in her left eye and from +2.75 to +3.75 in her right eye. It’s not a huge jump or anything, but to change that much in only 6 months freaks me out just a little. Dr. Grin said her biggest issue is her astigmatism. She said it is fairly common for people with albinism to have a significant astigmatism.
So she is getting new glasses. We decided not to get her the transition lenses this time. With Lyra becoming more comfortable outside, I worried that the transition lenses just wouldn’t be dark enough. Instead we are getting her a pair with clear lenses and also a pair of prescription sunglasses. Hopefully we will have them in a week or so.

The health of her eyes is good, no problems there. Dr. Grin said the alignment of her eyes still looks great and her nystagmus is very minimal. I’ve said this before, but I rarely notice her nystagmus at all. I often wonder how this compares to other kids with albinism. I say her nystagmus isn’t that bad, but what does that mean really? As soon as I have some time (Ha Ha), I am going to get a close up video of her eyes and her nystagmus and post it on here so you all can see exactly how bad or not bad it is.

As far has her functional vision progress goes, I have just one thing I want to mention while I’m thinking about it. She is doing really good with walking up and down steps inside on her own. When walking up or down steps outside, she is extremely hesitant and ALWAYS needs help. She clutches my finger tightly and I have to say “step” for EVERY step so she knows to feel for it with her foot and then go up or down. I really don’t think she has a clue where the next step is. It just tells me how much her sensitivity to those bright lighting conditions can affect her overall visual abilities.