vision Archives - Parent of a Child with Albinism

Update on Vision and Motor Skills

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. I don’t notice her putting books right up to her nose anymore. She does stand/sit fairly close to the TV, but then again, so do many fully sighted toddlers. 🙂 I’m anxious to see how she’ll do this spring when she can play outside. How far away can she see a tree, or a car driving by, or a cow, or a flower, or all the other outside things that she hasn’t learned about? 🙁

Her next appointment with her pediatric ophthalmologist is in March. (YES! I finally learned how to spell that word correctly) Anyway, we’ll probably try to wait until then to get her new glasses, in case her prescription changes. Everything else looks good. I rarely see the nystagmus anymore and we have not seen her strabismus coming back.

It is much easier to tell you how Lyra is doing with her vision, fine motor, and gross motor skills by showing you. Here are 3 different videos demonstrating Lyra’s various abilities and quirks. You’ll see in the first video, based on the appearance of the floor, that there’s definitely a reason why the nursery workers at church have nicknamed her the Platinum Tornado. 😀
Notice in the second video how inconsistent her O&M skills can be. She uses her vision and weaves through a room full of toys perfectly one time and then a minute later walk through the exact same path and fall all over the place. It’s hard not to laugh. She is too cute!

This
work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Rotting Her Teeth & Rotting Her Brain

Lyra had her first candy sucker this week. It was quite an interesting and entertaining event. She first got a “taste” of the sucker earlier that day during a visit to the doctor. We had to put it away shortly after the taste, when the doctor came in the room. Later that evening Lyra was digging around in her diaper bag when she FOUND it! You would have thought she stole someones wallet the way she ran off with it . She was sooo excited! She knew EXACTLY what she has found. It was too cute though, we couldn’t take it away…at least not at first. 😛

First we had to get it all on camera. 😀 I apologize for Lyra’s “camouflage” in the video. With her white shirt and white hair against my white(dirty white) wall, occasionally it seems the camera can’t find her… lol. You also get to see a little bit of Lyra’s personality coming out in this video. Near the end, you get to her attempt at saying “Doodlebop.”

Which brings me to the “rotting her brain” part. YES, we’ve started letting her watch TV…but only a little, 30 minutes-1 hr, 3-4 days/week. At first she showed a little interest in watching the Wiggles…until she caught a glimpse of the DOODLEBOPS!!! I can’t stand them, which is probably why she loves them. Actually it’s more likely because of the lively music and dancing and the bright colored characters. And YES, when she watches TV, she stands with her face about 12 inches from the screen…..but it’s not going to “make her go blind” or “ruin her eyesight”. That’s a myth. In Lyra’s case, watching TV may even be good for her vision. She is actively using/learning how to use her vision. If it were uncomfortable or not enjoyable, she wouldn’t attend to it for 30+ minutes. I’m sure jury is still out on this teaching tool, but I’m willing to go with it for now. She’s nowhere near couch-potato.

Also near the end of the video you get to see Lyra use her sign for “help.” Lyra has 5-7 sign-language signs which she uses on a regular basis. Most of them are Lyra adapted signs, definitely not ASL compliant. 😛 Lyra’s language development is a little behind and we are in the process of getting her speech therapy started. This is all worthy of another blog post at another time. 😀

This
work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Seeing the spoon.

How does a baby know to open her mouth for a spoonful of food? They see the spoon coming.
In Lyra’s case, at 4 months, she couldn’t see the spoon coming. This made feeding her more difficult. We tried different sound cues to get her to open up. One that was more successful was tapping the spoon on the bowl just before bringing it to her mouth. It didn’t consistently work though and eventually gave up on the sound cue. Maybe not the best decision on our part as parents. We decided to wait a bit longer for solid foods. Now Lyra can see the spoon coming and opens her mouth. She sometimes tries to grab the spoon. A lot of babies do this, but in Lyra’s case I think it also has to do with her visual ability, specifically her depth perception. She isn’t sure how far away the spoon is and wants to guide it to her mouth using her hand.

The strabismus surgery she is having in a couple of weeks could improve her depth perception. We’ll see if it helps with feeding.

This
work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Visits to Pediatric Ophthamologist

Visits to the Pediatric Ophthalmologist-Dr. Trudi Grin-

1 month old- low pigment in eyes, nystagmus, strabismus, and photophobia. I’m told her vision will likely be anywhere from 20/60 to 20/2200 corrected.

3 months old- doctor still seeing the nystagmus and strabismus in both eyes, now seeing a little bit of farsightedness, but not enough for glasses. We are told that eventually Lyra will need strabismus surgery.

6 months old- At home we were seeing Lyra’s right eye turning in more. Dr. prescribes patching the left eye, 1 hr a day, everyday.

7 months- We call the doctor to tell her we are now seeing both eyes turning in equally. Dr. prescribes patching each eye, alternating every other day, for an hour.

8 months old- Strabismus surgery is scheduled for February 27th. Lyra does not need glasses for farsightedness yet, but doctor says she will prescribe tinted glasses for the photophobia in the spring.

This
work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.