Vision Update – 2 years 3 months

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. In the mean time, they said it was okay for Lyra to wear her old glasses…just until the appointment.
The day before Lyra’s appointment…the missing lens to her other glasses magically appeared. There it was, just sitting on the end table in the living room. I don’t know how it got there. We asked Rebekah and Dominick and neither of them knew how it got there. I suspect Lyra may have found it on the floor somewhere and just picked it up and put it on the table, but as much as I GRILLED her…she just wouldn’t confess…lol. 😛 Maybe it was the dog.

Lyra’s check-up went really well. They dilated her eyes and all that fun stuff. Her refractive error didn’t change, so her prescription remained the same. So much for my reasoning for Lyra needing a sooner appointment. 😛 Dr. Grin did note that Lyra was focusing on objects/noisy toys at a further distance. She was looking at and paying attention to the wiggling barking stuffed dog on the shelf across the room. …well okay then. 😛
Regarding Lyra’s nystagmus, Dr. Grin said that when she is focusing on something close up, her nystagmus REALLY slows down. Since the appointment, I’ve been paying attention to that more, and I agree. I’ve even noticed that for very brief moments when she’s focusing on something, her nystagmus stops completely. Her next appointment will be in 6 months.

Dr. Grin did not, nor does she ever give us any type of visual acuity numbers for Lyra. I’m okay with that. She said she’s seen children have a visual acuity of 20/200 and then at an appointment 6 months later that same child see at 20/80. Those numbers fluctuate and they are not a definitive or complete indication of what Lyra sees. However…just for the sake of numbers, we do now have a number. Last month at the NOAH conference, we had the opportunity to get those visual acuity numbers. Doctors from the University of Minnesota were seeking volunteers to participate in a research study. It consisted of some basic information forms and a questionnaire and also included a vision test. They used a preferential looking test, specifically Teller cards, and based on that test, at that time Lyra’s acuity was 20/130. Those numbers mean more to other people than the do to me really. When people ask us, “So what IS Lyra’s vision like?”…that number is really what they’re asking for. So now I have a number I can give them…instead of just a range. I know her acuity may be better or worse than that on any given day depending on the environment and situation, but knowing whether its 20/100 or 20/360 doesn’t make any difference or serve any purpose. For those people who ask and just HAVE TO know… 20/130 is what I’m goin’ with. 🙂

Just over the last month I’ve actually had a more than a few opportunities to respond to those people, asking how well Lyra sees. After talking to those people and just thinking about comments people have made in the past, I’ve come to a conclusion… I think Lyra’s glasses are misleading. I think a lot of people assume that with her glasses on, she has 20/20 vision. When I’ve told people that Lyra’s vision is 20/130 WITH her glasses ON, many of them are shocked. These are people who have known Lyra since birth. A common response is, “Really! I had no idea her vision was that bad.” People knew Lyra had vision problems but apparently thought her glasses “fixed” all of those problems. It just really makes me wonder now, how many other people in Lyra’s life think this.

I can understand how easy it would be to think Lyra sees better than she does. She does function very well and puts on quite an act, fooling people into thinking she has perfect vision. I admit, sometimes she has me fooled, forgetting that she has any visual impairment. Then one day, Lyra walks up to a pile of laundry sitting on the couch and says, “Hi Daddy!”…and I’m reminded, oh yeah, she can’t see perfectly. 🙁 Fortunately those sad moments are rare. Honestly, MOST moments are happy moments, when the focus is on silly, beautiful, sweet Lyra…and not on her visual impairment.

How Lyra Sees- Link Updated

I have updated the link in the sidebar, “How Lyra Sees” with the new longer version of the presentation.
Dr. Brian Evan’s updated presentation includes more than double the number of slides as the previous one. This has always been very helpful to share with friends and family members to explain to them how albinism affects Lyra’s vision.

🙂

How We See

Light box

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. Because she doesn’t have to work so hard to SEE the objects, she is able to focus more of her energy on learning the actual colors and shapes, i.e. cognitive learning.

Here is some useful information I found on the website for the Texas School for the Blind & Visually Impaired.

50 WAYS TO USE A LIGHT BOX

By: Michelle Clyne

Please take care to incorporate the use of the light box into some sort of routine…..teach parents, caregivers and other teachers how important this is, otherwise, it’s just “VI time”, and that is only good for the VI teacher, not the students we serve. No offense to anyone, please!

50 WAYS TO USE A LIGHT BOX (Lyrics with apologies to Paul Simon)

For eating, use the light box as a table:

Juice in a clear cup or bottle will glow and encourage reaching.
Scatter m&ms on the surface (know your audience!)
Scatter cheerios on the surface
Scatter small or large crackers on the surface.
Set a table by having child match place, cup and spoon with a transparent outline of these objects on the light box.
Set plate with slice of bread, container of light colored jelly on a light box, (apricot suggested), help child shift gaze from jelly jar to bread as he or your takes jelly to spread on bread.
Jello in clear container will glow.
Help child mix colored soft drink mix into a clear glass of water and watch the color develop.

Art, using light box (covered in clear plastic as easel or table:

Finger paint onto parchment paper with foam paint.
Paint with dark colored pudding
Paint with whipped topping on red or blue transparency.
Use watercolors on parchment paper.
Sprinkle powdered tempera paint on parchment paper; help child spray on water and watch color spread and swirl.
Roll clay into strings and lay out in interesting shapes on light box.
Use Wikki Sticks to make raised line outlines.
Use “Smelly” markers on tissue paper.
Make a necklace using beads and string (APH)

Simple reaching:

APH “Spinner” motivates reaching to start or stop the spinner.
Slinky (connected to handle and hanging over lighted surface, wrap other end onto student’s wrist to encourage arm movement.
Stack up blocks so that simple arm or leg movement knocks them down.
Leave a koosh ball on the light box
On a large light box, put pressure switch attached to a vibrating pillow. Position the child so that slight pressure on the switch makes the pillow vibrate. Help the child shift gaze between the pillow and light box.

Movement difficulties:

Adult helps with any of the activities here when the child signals the adult to continue
Student uses adaptive switch to turn on the light box.
Small infants can be positioned prone on the light box for Tummy Time.
In supported 90 degree sitting, a small child can crinkle mylar paper under their foot or feet while they rest on a light box.
Have child eye point to choose 1 of 2 items lined up on light box.

During class:

Make transparencies of circle/calendar time pictures and show on the light box.
Make transparent digital pictures of classmates and familiar adults, show them using light box, asking child to identify “so and so”.
Have child construct daily schedule on light box using pictures made into transparencies.
Count manipulatives lined up on light box.
Tracing letters onto light box. Bold marker on lightweight paper taped to light box.
“Sense of Science” (APH) overlays can encourage gaze shift, recognition, etc.
Do sorting activities on the light box
Choose rhythm instruments by the outline they make on the light box.
Use light box to highlight dark lines that need to be cut for scissor projects.

Daily Living Routines

To get dressed, put sock and shoe on light box, have child eye point to item needed next.
Put wash cloth and tooth brush on box, ask child to choose which they want to do first. Choose with eye pointing, finger pointing, naming, switches……
Before going to doctor, store, etc, show child transparencies of those activities on light box.

Make believe play

Put dress up items on light box. Have child identify items and choose how they want to dress up; i.e. baseball cap vs. construction hat.
Put play hammer or similar object next to play area so that child can choose to play house or play construction.
Trace outlines of make believe characters/action figures to make pictures of them, then use picture to write a story.
Tell stories with pictures by using real objects on light box to create a “shadow Puppet” type of performance (for example, twigs make trees and a “Barbie” type doll becomes Goldilocks).

Other activities

With and adapter, look at a “Discovery Light Book” on the light box.
Play “Break the Ice” on a large light box.
Play hands only “Twister” with a transparent color circle overlay on the big light box.
Play table top hockey (quarter with fingers) on the large light box.
Make a woven pot holder putting the loom and loops on a dimmed light box.
Thumb wrestle with a friend on the light box
ASK THE CHILD WHAT THEY WANT TO DO!

Vision Update

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.

Bubbles Bubbles…Pop!

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 is also a challenge. Playing with and popping bubbles in the air is an activity that requires BOTH! It is something I could have never imagined Lyra being able to do. It was one of the many things I’ve thought about in the past….things I’ve worried about…worried that Lyra would never get to see and experience. They’re the little things we take for granted.

Well Lyra CAN pop bubbles…and chase them and point to them and stomp on them and even try to eat them! 😀 She was even able to follow and point to bubbles I’d blown when we were playing outside…in less than optimal lighting conditions.

I am thrilled that Lyra is doing so well, but I’m still always on guard. I’m not going to hold her back, but at the same time I don’t want to expect too much because I don’t want to be disappointed. I get so excited when I see her able to really see things that I wouldn’t expect. I’m definitely more hopeful for the future. With that hope and my prayers, someday, maybe she’ll get to see that shooting star after all. 🙂

Early Session with TVI and OT

This is an older video, but it’s a good one to have on here for everyone to see. This is of one of Lyra’s first few sessions, either 3rd or 4th, with her Teacher of the Visually Impaired (TVI) and Occupational Therapist (OT). She is 5 and a half months old. Her TVI and OT always came together for Lyra’s sessions for about the first 6 weeks.

Vision Update

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 to do better at leaving her glasses on. As long as no one draws attention to them, she really just forgets about them and leaves them alone. Although, at the rate she’s growing, she’ll need a new pair before too long. Uhhhhggg…

A couple of months ago when Lyra had her functional vision update, her vision was assessed using the Teller grating acuity cards. These were used to get a “crude estimate” of near vision acuity. I had heard of these cards before, but I had never seen them and Lyra had never been evaluated using them. The results of this test put Lyra’s near vision acuity somewhere between 20/89 and 20/180. She was able to point to the stripes on the 20/180 card, but not the stripes on the 20/89 card.

It’s hard to know how well she can see at a distance. I know that if she is more than 5-6 feet away from me in a room with other adults, its difficult for her to recognize me unless she hears my voice. This is hard for me to deal with at times…especially when I’m picking her up from the nursery at church. I’ll be standing there next to a couple of other moms and I’ll see Lyra there squinting trying to see if maybe one of those tall mom like figures standing in the doorway might be her mommy. 🙁
I should focus on the positive. Lyra is doing AMAZINGLY well functionally. If not for the glasses, your average person on the street would not know she had a visual impairment. 🙂

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Lyra the Pinball!

Lyra is walking pretty much all the time. I rarely see her crawl anymore. This is AWESOME…except that she is like a pinball when she walks. I keep the toys, books, blankets and sippy cups picked up as much as possible, but Lyra drags everything out all over the place. Then she walks around the room tripping on this, bumping into that, and sideswiping everything else. I know toddlers fall a lot when learning to walk, but I think its more than just being a toddler. The only identifiable issue that we can try to correct, is that Lyra doesn’t look down, as she walks across a room. She just PLOWS right on through. Her TVI says this (not looking down) is fairly typical of kids with visual impairments. Also contributing to her frequent bumps and bruises is her poor depth perception. She’ll misjudge how close she is to the wall or climbing gym and clip the side of her head on it.
We are working with her and trying to use some sound cues to get her to stop and look down. And lots of kisses for the bumps and bruises. She will be having an evaluation with an Orientation and Mobility specialist in a month or two. This is a standard evaluation done once a child starts walking. The O&M specialist will be able to help us recognize/identify which trips and falls are a result of her low vision and which are just typical toddler falls.

She’s been doing so good… I had started to forget she had any visual impairment for a while.

It just makes me sad…

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Getting Glasses

Lyra has developed enough of a refractive error to need glasses. They are for farsightedness and the strength is +2.5 in one eye and +2.75 in the other. Her PO was going to wait another 6 months. I asked if we could go ahead and get them, as long as there was not HARM in it, so that Lyra could get more “practice” wearing them. The doctor agreed and told us to try and get Lyra to wear them 25% to 50% of the time. We are excited and nervous at the same time. We are still trying to figure out a way to get our insurance to pay for them, so we haven’t actually GOT the glasses yet.

One thing I worry is that friends and family might assume that her vision is 20/20 once she has the glasses. These glasses will only correct her vision to a point, and do nothing for her distance vision.

I’ll be sure to post some pics when we get her glasses.

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What Can Lyra See?

What Can Lyra See?
A lot…but just not as clearly as everyone else. Her vision now is about 20/200, which is legally blind, but this doesn’t mean she lives in a world of darkness. My vision without my glasses or contacts is 20/200. Very early on, we knew she could see something…we just weren’t sure what. She would look at toys, books, or objects that had very high contrast. We have a dark navy blue border along the top edge of the white walls in our bedroom. We would take Lyra in there, and she would look up at it and laugh hysterically. Of course so would we, it was so cute. This was as early as one or two months.
As her vision progressed, we could judge how well she could see based on how far away she could track or follow a lighted or unlighted object. Her field of vision is expanding more and more every day, but more slowly than a baby without a visual impairment.
Lyra’s vision is also affected by the nystagmus and strabismus. They affect her ability to focus on detail as well as her depth perception.
Because of the photophobia, it is also harder for Lyra to see things in rooms with very bright light or outside on a sunny day. Its like coming out of a movie theater into the bright sun. The glare can be almost painful. She see better in dim light. The bright light is very irritating on her eyes. Just the other day, we spent several hours at a mall. The mall had typical bright florescent lighting. Lyra would not leave her hat on no matter how many times I put it back on her head. By the time we left the mall, her eyes were red and watering.

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