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! ThisRead More →

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 toRead More →

  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 movingRead More →

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 beRead More →

  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 isRead More →

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 -cruising -stand independently momentarily -walks forward, 2 hands held -walks, 1 hand held -stand alone wellRead More →

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 theRead More →