I am still in denial that she is actually going to be starting kindergarten this fall.  She’s too LITTLE for kindergarten! 🙁 I tell her I don’t want her to grow up, but then she tells me, “it’s okay mommy, I’ll still be your baby.” 🙁Read More →

I post a lot of videos of Lyra. 😀 I do this not just to entertain, but also to support my overall purpose of starting this site. I’m not sure if they really HELP other parents of children with albinism.  I hope that for NEW parents of a child with albinism, watching these videos gives them comfort.  I want encourage them and show them that everything is going to be okay.  By seeing how happy, and NORMAL, and silly, and beautiful Lyra is, maybe they will worry a little less, smile a little more and have hope for their child’s future. Plus…I’m her Mommy…and IRead More →

Over the last couple of weeks I’ve been borrowing a friend’s Sony Digital SLR camera.  It’s AMAZING how easy it is to take good pictures when you have a good camera.  It’s been so much fun!  I’ve been taking pictures like crazy.   Lyra really knows how to ham it up for the camera. 😛Read More →

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. InRead More →

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.  Read More →

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 run walk up and down stairs with hand or rail scribble in circular motion and side to side motion beginning to hold crayon/marker correctlyRead More →

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 theRead More →

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 beforeRead More →

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 sheRead More →

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.Read More →