A Tisket, a Tasket, a Baby in a Basket

These are the kinds of things that Daddies teach their babies… You can never have too many videos of Lyra. : ) This is her showing off her new trick; and then later, just plain showing off. Here are the lyrics to the song she is attempting to sing. It is our special version of ‘Row, Row, Row Your Boat’ that we learned from Lyra’s teacher, Miss Kim.

Row row row your boat
Gently to the shore
If you see a lion
Don’t forget to roar…ROARRR!

Row row row your boat
Gently down the stream
If you see an alligator
Don’t forget to scream…AHHHH!

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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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Orientation and Mobility Assessment



Lyra had her first Orientation and Mobility assessment on October 16th. She was 17 months old. I had been and still am doing a lot of research on Orientation and Mobility, and the benefits of the services to infants, toddlers, and preschoolers. Orientation and mobility(O&M) is 3 things: knowing where you are, knowing where you want to go, and knowing how to get there.

Do kids with albinism need these services? Maybe…maybe not. It depends on a lot of things. It can’t be determined based on visual acuity alone. It depends on how they are using the vision they have, how they are moving in their environment, and if they are doing this safely and independently. It’s important to know that many children with low vision will figure out how to move around safely and independently in familiar places like home or daycare, without difficulty. However, behavior in unfamiliar environments can be surprisingly unpredictable. Regardless of your child’s visual acuity, it is very important that your child receive a thorough assessment by a certified orientation and mobility specialist. If a child is moving around in his/her environment, whether that’s rolling, scooting, crawling, pulling up, or walking, he or she could potentially benefit from O&M services. Continue reading “Orientation and Mobility Assessment”



Lyra finally has her glasses. The first time we put them on, they were off in less than 30 seconds. Every time we tried to put them back on her, she would shake her head “no” and scream.

Now, 2 weeks later, she’s kept them on for up to 20 minutes at a time and she LETS us put them back on her. I’ve noticed they start to slide off her nose after a while, giving her the NERD look. I’m going to take them in to be adjusted to fit better. They also have to order new lenses, because these were supposed to be transition lenses…which we paid for…but they’re not.
I can’t decide if she looks cuter with them on or off.

I think they’re helping her see better, but it’s hard to tell. She seems to have more precision with fine motor skills when she is wearing them…putting a small ball in a cup, putting puzzle pieces in, reaching for objects. So the glasses are improving her close/near vision, but what if it screws up her distance vision? I guess my glasses for nearsightedness don’t screw up my close-up vision. These are the kinds of stupid things I worry about.

Her prescription isn’t very strong…+2.5 in one eye and +2.75 in the other eye, but when I look through them, they look really wacky. She’s leaving them on longer, so it can’t look too wacky from her perspective.

She has her next appointment with her pediatric ophthalmologist on Dec. 5th.

It’s going to be a long month and a half for impatient mommy.

Poor Dominick is so sad…he’s the only one in our family who “doesn’t get to have glasses”…other than the dog. 🙂Glasses2

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O & M Patrol


On Saturday March 31st, my husband Troy and I participated in a training session through the Children’s Center for the Visually Impaired called O&M(orientation and mobility) Patrol. The goals were to get an idea of what its like to live with low vision and to gain a better understanding of various ways to improve orientation and mobility for our daughter. There were a total of 48 parents and grandparents of children with visual impairments. First, we listened to/watched a presentation covering the basics of orientation and mobility. Orientation is knowing where you are in space and where you want to go and mobility is being able to carry out a plan to get there. We learned a lot of great techniques, activities, and tools to help at all the various ages and stages of our child’s development. We even got to look at and play with a few “mobility tools” like a white cane and this electronic sensor thingy that vibrated in your hand when you walked too close to an obstacle. Honestly, before this training, the idea of Lyra ever using a white cane to get around gave me a huge lump in my stomach. It’s not such a scary thought anymore.
After our classroom instruction it was on to the field training. We were all grouped into pairs and then assigned a coach. Troy and I were together. Each group was given a pair of simulator goggles that simulated as closely as possible, the vision of their child. Our goggles simulated 20/400 vision. They also gave us money…$3.25…wooohoooo! I wore the goggles first. All 48+ of us had the same assignment. We had to walk out of the building to the bus stop on the corner, take the city bus to Crown Center Plaza (DON’T FORGET TO ASK FOR A TRANSFER), walk around the shopping center and buy something for less than $2.00. Then we switched, and Troy basically did the same thing and then took the bus back.
At first, wearing the goggles was a little nauseating. Even just walking was weird feeling. One difference that I noticed right away was my depth perception. Its hard to sit down on a bench when you aren’t exactly sure how far away it is or knowing where to put your foot to step onto an escalator. I couldn’t read street signs from the bus and when we went into a coffee shop to buy something I couldn’t read the menu. Thank goodness I had my “sighted guide” Troy there to help me order my coffee. I also frequently found myself putting my face really close to things. I doubt someone would want to buy any of the bagels after watching me with my nose an inch away from them trying to see what kind they were. That kind of made me sad…worrying about what onlookers might think of my child. Overall, my vision wasn’t THAT bad, which was comforting. I would have liked to take the goggles home to wear longer and see what it would be like to do all the stuff I normally do with low vision.
This program was a wonderful learning experience. We each received our own little award certificate in recognition of completing the O&M training. We were also sent home with a huge packet of information and resources for orientation and mobility. And even though it only lasted a short time, I was very grateful that I had the opportunity to take a look at the world through my daughter’s eyes…kind of.

Here are some articles/links for more information:

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Occupational Therapy Goals

Today at Lyra’s OT session, we began updating her IFSP goals/outcomes for the next 6 months. These are what we want Lyra to be doing somewhere between now and when she is 16 months old. We really just got started with updating these today. We may add some goals in these areas and we still need to set some for cognitive skills and self-help skills. These are not necessarily in any order and we will check them off as she reaches the goals.

Motor Skills
-lower self from furniture
-stand independently momentarily
-walks forward, 2 hands held
-walks, 1 hand held
-stand alone well
-walking 2-3 steps independently
-creeps upstairs
-roll ball back and forth
-pick up small object with neat pincer grasp
-isolate/point with index finger
-put objects into container (voluntary release)
-builds 2 cube tower

Social Skills
-waves/responds to bye bye
-babbles with inflection
-imitates familiar gesture

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.

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