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.


Albinism Information

  • NOAH (The National Organization for Albinism and Hypopigmentation)- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.
  • International Albinism Center
  • Albinism International– An online support community for people with albinism, parents of children with albinism, and people related persons with albinism.
  • Albinism Fellowship UK– An organization that aims to provide information, advice, and support for people with albinism and their families.
  • SARA Foundation (Supporting Albinism Research and Awareness)- A site created to help parents who have children who are diagnosed with albinism.
  • Positive Exposure– Positive Exposure is a not-for-profit, 501(c)(3) organization whose innovative programs challenge the stigma associated with difference and celebrate the richness of genetic variation with positive images and powerful life stories.
  • The Hermansky-Pudlak Syndrome Network Inc.– The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.

Vision Related

  • American Nystagmus Network– A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.
  • Vision for Tomorrow Foundation
  • Hadley School for the Blind– Offers free courses to parents and grandparents of children who are blind or visually impaired on a variety of vision related subjects.
  • The Low Vision Gateway– A comprehensive list of low vision resources from around the world.
  • Vision of Children– Information about current medical research, outreach, and education.
  • NAPVI (National Association for Parents of the Visually Impaired)- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.

Websites/Blogs of parents of children with albinism

Websites/Blogs of adults with albinism

Commercial Websites

  • Solar Eclipse– Sun protective clothing
  • UV Sungear– Large selection of sun protective swimwear, clothing, sunglasses and hats for the whole family. Also have sunshades for car seats and strollers.
  • Baby Ride– Not the most organized site, but they have a lot of really unique products in the accessories section, including a great sunshade by Jolly Jumper for full size car seat.
  • Sun Togs– Sun protective clothing for all ages and cool kids sunglasses.
  • North Solar Screen– Various types of window tinting and window shades.
  • Llumar Window Film and Window Tint– Professional glass film/tinting for home or auto.
  • Industrial Shadeports– Custom build shade structures.
  • Protect-a-Bub– Sun protective clothing and accessories.
  • One Step Ahead– They have a variety of products for babies and children, including many for sun protection. Shop through iGive.

Other Resources

  • SENSwitcher– Free computer application/game to promote vision development. You can run the program online or you can download it onto your computer.
  • Seedlings– A non-profit organization providing a wonderful selection of high quality, low cost braille books for children. They have many popular titles and the books include both print text and the braille.
  • Library Reproduction Service– Large print books for children and adults and Large Print reproductions of educational materials for special needs students.
  • Perky Duck – A six-key braille emulator computer program for creating braille files. Uses a regular computer keyboard. Good for parents to practice on when learning braille.


Homemade Flashcard Activity

This was an idea I got from Lyra’s TVI.  I took pictures of a variety of toys and objects that Lyra was familiar with or played with regularly.  To make them more durable, I taped them to poster board a cut them out.  Then I put them into the plastic sleeves of some old photo albums I had, cut them out and then taped the end.  They were those free photo albums they used to give me when I’d have film developed at Wal-mart.   Continue reading “Homemade Flashcard Activity”

Milestones 1-2 years

These are some of the milestones Lyra met over this past year. They are not in any particular order. There have been so many! I don’t want to forget them. These are all I could remember. I’ll add more as I think of them. 🙂

pulls string to move toy along

open cabinets and drawers

kick a ball

throw a ball

climb a ladder

slide down a slide

push self forwards and backwards on riding toy

walk forwards, backwards, and sideways
Continue reading “Milestones 1-2 years”

She Can’t be 2 ALREADY!

In approximately 12.5 hours, my baby will be TWO!!!

I am just not ready. 🙁 It’s just awful for me really. All of my babies are growing up too quickly, but Lyra is my last baby. Even thinking about her not being a baby anymore makes me cry.

Ahhhh… I’m just a big sap.

Even though this past year has FLOWN by, it has been a great year. Lyra has really developed her personality. She is happy and fearless and determined and opinionated and usually a total ham. Oh…and she LOVES her Daddy…I think more than she loves me. 😛

It seems that after the first year, all of the little milestones seem to blur together. I know she’s learned a lot and done a lot of new things, but it’s hard to put dates on anything. Her field of vision continues to expand. A couple of weeks ago at church, Lyra was in the nursery and she saw a picture on the wall of a baby and she pointed to it and said “a baby.” She was TEN feet away from the picture. It was so awesome. 🙂 Obviously she has overcome her difficulties with pointing. Oh yeah, and she recently got her second pair of glasses. She is wearing them in the picture above.

She has done so well over the last year with her gross and fine motor skills, that as of this month, we are changing her Occupational Therapy to only once per month. Lyra can point, put, pinch, pick, throw a ball (and many other things), scribble, and eat with a spoon! (why do so many of the fine motor skills start with P) Lyra can walk forwards and backwards, run, walk upstairs using the wall or hand rail, walk downstairs holding a hand, kick a ball, twist and wiggle, jump with both feet off the ground, and climb EVERYTHING! 😛

Overall this year, she has been successful in mastering her environments…at least all of her inside environments. The only time I ever see her struggle is when she is outside. It’s funny though…she LOVES going outside! She will bang on the sliding glass door if her brother or sister go out without her. She says “outside” a lot too, which is cute because she says it with such yearning. Whenever we get ready to leave or just go outside, she always says “hat” to remind us that she needs her hat to go outside. I love it! It’s only been over the last couple of months that her language development has just EXPLODED. We’re still working on the communication aspect of it, but she definitely knows a lot of words now.

So starting tomorrow, (I guess it’s already tomorrow) Lyra will be off to master her outside world. I suppose mommy will just have to loosen those ropes a bit.

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. 😛

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.

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.