This is a new post, but old information. Originally I had posted a complete copy of Lyra’s original IFSP. However, because of privacy concerns, I removed that link. From this point on, rather than posting the complete file, I will just copy and paste the relevant information from the IFSPs. I will be updating a few other similar posts over the next few weeks. Lyra’s first IFSP -September 2007 Age- 4 1/2 months Time frame for goals- 6 months Service Providers: Teacher of the Visually Impaired (TVI)- 1 visit/week Occupational Therapist- 1 visit every other week Goals for Vision Skills Fixate on a variety ofRead More →

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 room tripping on this, bumping into that, and sideswiping everything else. I know toddlers fall a lot when learning to walk, but I think its more than just being a toddler. The only identifiable issue that we can try to correct, is that Lyra doesn’t look down, as she walksRead More →

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 it, so that Lyra could get more “practice” wearing them. The doctor agreed and told us to try and get Lyra to wear them 25% to 50% of the time. We are excited and nervous at the same time. We are still trying to figure out a way to getRead More →

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 it wasn’t until 2 days after birth when she was examined by the Pediatric Ophthalmologist, that the diagnosis was confirmed. Lyra had Oculocutaneous Albinism. It was unbelievably hard to deal with at first. During the first couple of weeks, there was always that little bit of hope, that maybe theyRead More →

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 over and over again and decided to make bookmarks with information about albinism to give to people. Then I saw NOAH’s cards and knew I had to make our own. I am a strong believer in educating anyone who has questions or anyone who only knows the myths regarding albinism.Read More →

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 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 whoseRead 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 →

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 wake up. We were home before noon. It’s amazing what they can do with outpatient surgery these days. Her eyes weren’t as gross looking after surgery as I expected. The inner whites of her eyes were bloody, but it wasn’t constantly dripping or oozing blood or goop. Her eyes neverRead More →

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 improve the likelihood of developing equal vision in both eyes. The following is from an information sheet given to us by Lyra’s pediatric ophthamologist, Dr. Trudi R. Grin called “Understanding Eye Muscle Surgery.” This explains the surgery: ” Eye muscle surgery involves re-positioning the muscles that attach to the eyeball.Read More →