Category: albinism

Lyra the Pinball!

| July 26, 2007

Lyra is walking pretty much all the time. I rarely see her crawl anymore. This is AWESOME…except that she is like a pinball when she walks. I keep the toys, books, blankets and sippy cups picked up as much as possible, but Lyra drags everything out all over the place. Then she walks around the […]

Getting Glasses

| July 19, 2007

Lyra has developed enough of a refractive error to need glasses. They are for farsightedness and the strength is +2.5 in one eye and +2.75 in the other. Her PO was going to wait another 6 months. I asked if we could go ahead and get them, as long as there was not HARM in […]

Our First Year

| July 9, 2007

My daughter Lyra was born on May 11th 2006. She had white, almost clear hair at birth. Even though our older two kids were born with dark hair, we weren’t terribly shocked since I had a brother and a niece who were both born with white hair. Albinism was suspected immediately by the doctors, but […]

Here’s My Card

| May 20, 2007

Here is an idea. Maybe I’m a little obsessive, but oh well. For anyone who has seen NOAH’s albinism info. “business card, you’ll notice I modeled ours after it. I first got the idea to make something like this after Lyra’s TVI told me about a parent who got sick of answering the same questions […]

Resources

| May 11, 2007

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. Albinism International– An online support community for people with albinism, parents of children with albinism, and people related persons with albinism. Albinism […]

O & M Patrol

| April 30, 2007

  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 […]

Strabismus Surgery Success

| March 24, 2007

Before After Lyra’s surgery went very well. I think she did better than I did. The surgery itself only took about 40 minutes and then she stayed in the recovery room about an hour. That was a really long hour for me to wait. I didn’t think it would take so long for her to […]

It’s A Go For Strabismus Surgery

| March 8, 2007

Lyra will be having bilateral strabismus surgery next Tuesday, March 13th. Both of Lyra’s eyes cross inward. The purpose of this surgery is to straighten her eyes. By improving the appearance of her eyes it will hopefully improve her psychological and emotional development. The realignment of her eyes may also improve her depth perception and […]

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