Whole Lot of Shakin’ Goin’ On

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. 😛

5 thoughts on “Whole Lot of Shakin’ Goin’ On”

  1. Hi,Lyra is so beautiful. my name is Karen and I have 7month old daughter who has Albinism, your site is so informative, I learned a lot. Lyra’s Nystagmus is not noticable to me , was it the same when she was born or it just keeps improving, my daughter’s is noticable now. I am wondring if it could improve with time. PS ;looks Lyra has developed some pigment, her hair gets some yellow hue.


  2. Hers is not nearly as severe as mine. The cool thing is, she almost certainly does not notice. My brain, and presumably hers, just corrects for it. Cool eh? (Had to throw the eh in there, I am Canadian after all…)

  3. This is a great video! I am going to show Madison because she always asks me why Kaetlyn’s eyes shake, little does she know hers do also. Lyra’s nystagmus doesn’t seem as noticeable as Madison’s but for some reason Madison’s has seem to gotten worse the past few months.

  4. Wow, Lyra’s nystagmus is MUCH better than Emerson’s. I think Emerson has gotten better since he was born, but it really comes out when he’s tired. It really isn’t that noticeable with her at all.

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