I want to preface this post with a little bit of information about me and why I haven’t been writing as much lately.   A little over a year ago I started graduate school, pursuing a Masters of Science in Special Education degree and certification as a Teacher of the Visually Impaired.  Although very time consuming, my first 2 semesters went really well.  Then this past spring, during my 3rd semester, I became very sick and ended up having 2 surgeries and spending nearly 8 weeks in the hospital.   I will be having surgery again this fall, but I hope to be able toRead More →

Below is a link to a copy of the written report from Lyra’s latest Functional Vision Assessment.  We really got a lot of useful information from this assessment.  It was very thorough.  I will write about this in more detail when I have a bit more time, but I wanted to go ahead and at least post the report. 🙂 lyra-fve-shareRead More →

Lyra had a check-up with her pediatric ophthalmologist last month.  They didn’t dialate her eyes at this visit. The health of her eyes is good, normal. Her nystagmus hasn’t changed…it remains minimal, in both the speed and the distance of the eye movements. The alignment of her eyes is still good…no crossing. I’m really trying to prepare myself mentally/emotionally just in case her eyes start crossing in again.  Her doctor told us that even after strabismus surgery, sometimes kids’ eyes will start crossing again.  Dr. Grin also said that typically if that happens, it’s usually during the preschool years when they start learning letters andRead More →

I’ve mentioned a lot of different types of assessments in my last few posts.  Knowing what they are and how they differ can be really confusing.  Also, I tend to use the words “evaluation” “assessment” and “examination” interchangeably, which probably adds to the confusion.   Here are some links to information that define them and provide a much better explanation than I could.  😛 Overview of Assessments Functional Vision Assessment Low Vision Evaluation &  Low Vision Examination Learning Media Assessment This next assessment is one that I have only recently heard about.  It seems to be similar to a Low Vision Evaluation, but completed by anRead More →

Lyra had an appointment with her pediatric ophthalmologist this month, a check-up that was originally scheduled for the end of September. Several weeks ago, we lost one of the lenses from Lyra’s glasses. After over a week of searching, I gave up. We knew we had to get her a new pair. I didn’t want to buy her a new pair of glasses right then, knowing there was a chance that her prescription might change in September.  So, I called Lyra’s PO to see if they could get her in sooner. Luckily, they were able to schedule her an appointment later the next week. InRead 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 beforeRead More →

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 sheRead More →

Lyra has been exceeding all of my expectations with her vision. She has seen things or done things I thought would never happen. Like all kids with albinism, Lyra has multiple eye problems that contribute to her overall low vision. One of those is nystagmus which is an involuntary rhythmic shaking of the eyes. Lyra’s nystagmus is very mild most of the time, but it gets worse when she is concentrating hard or tired or not feeling well. Tracking or following moving objects can be very challenging for someone with nystagmus. Seeing something that is clear or “see through” when you have low vision isRead More →

Lyra wears her glasses now all the time, rarely taking them off except for at night. This is wonderful, however now they are nearly too small for her. They are beginning to leave marks on her nose where they are too tight, and they barely reach over her ears. This STINKS! I can’t believe we are already going to have to spend another $200+ for a new pair of glasses. Eventually, thank goodness, she won’t be growing so fast and her glasses won’t need to be replaced as often. At close distances, those less than 6 feet or so, she seems to be doing great.Read More →

Lyra had another appointment with her pediatric ophthalmologist a few weeks ago. Her vision continues to improve, however the best estimate we can get as far as accuity is still 20/200. She is too young to obtain visual acuities with standard measures. Dr. Grin is not seeing any recurrence of the strabismus and her nystagmus is less apparent. Lyra hasn’t developed any noticable head tilt that is sometimes associated with nystagmus. Her prescription for her glasses remains the same at +2.75 and +2.5. They didn’t dilate her eyes this time. They will do that at her next appointment in about 4 months. Lyra continues toRead More →