Category: New Posts

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”

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.

New Sun-Protective Clothing

I was browsing through the catalog I received yesterday and found that One Step Ahead has some new sun-protection items.

I am definitely going to get the outfit in the first picture below. We bought last year’s version, which was actually a one piece, but still similar. I’m pretty sure it is made out of the same material. It is VERY light weight and breathable. It doesn’t get hot and sweaty and sticky like t-shirts do during the hot summer months in our extreme Kansas humidity. One Step Ahead describes the clothing as “cool and comfortable, breathable, quick-drying, and antimicrobial. It is UPF 50+ protection.

UPF stands for Ultraviolet Protection Factor and is used to measure the protection factor of clothing like SPF is used to measure the protection factor of sunscreen and make-up.

The outfit in the second picture is really more of a wetsuit. It has the same UPF protection and is also salt, and chlorine resistant. They have a lot of other sun-protection clothing items in their Sun Smarties collection which I LOVE.

I also found a really neat outdoor sunshade/tent. That is the 3rd picture below.

You can find all of these online at One Step Ahead. Just do a search for “Sun Smarties” to find the clothing and “shade” to find the tent.
If you go to the One Step Ahead online store through I-Give, then 4% of your purchases is donated to NOAH and it doesn’t cost you anymore. You can get to the I-Give website from the link below.

NOAH I-Give

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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.

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