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 →

Lyra’s hair is getting sooooo long! She has a TON of hair. She’s got a second set of bangs growing under her bangs. That new hair is almost to her eyebrows. The thought of cutting it makes me sad. She’s my last baby and I’m in no hurry for her to grow up. I’m not ready for her first haircut. :(( I love her hair. I can’t put it in twisties anymore. The other day she pulled one out and was chewing on it like a piece of bubble gum. She’s not real fond of headbands or clips either.  As in the first photo above,Read 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 →

What Can Lyra See? A lot…but just not as clearly as everyone else. Her vision now is about 20/200, which is legally blind, but this doesn’t mean she lives in a world of darkness. My vision without my glasses or contacts is 20/200. Very early on, we knew she could see something…we just weren’t sure what. She would look at toys, books, or objects that had very high contrast. We have a dark navy blue border along the top edge of the white walls in our bedroom. We would take Lyra in there, and she would look up at it and laugh hysterically. Of courseRead More →

Early Intervention Services-4 months-present Vision Specialist and Occupational Therapist come once a week for an hour, one on Tuesday, the other on Thursday. Work on vision skills- tracking, following, depth perception Work on motor skills, reaching, grasping, holding head up, rolling over Work on using vision and motor skills together- opening mouth when spoon is coming. Prebraille (kids with albinism might use braille, might read print, or both for a while) Tests/Assessments used -HELP (Hawaii Early Learning Profile) -OREGON Skills Inventory -Parent/team report IFSP Outcomes for Vision (9/19/06) -Fixate on a variety of toys and faces -Localize sounds and voices -Follow in all directions -TrackRead More →

Visits to the Pediatric Ophthalmologist-Dr. Trudi Grin- 1 month old- low pigment in eyes, nystagmus, strabismus, and photophobia. I’m told her vision will likely be anywhere from 20/60 to 20/2200 corrected. 3 months old- doctor still seeing the nystagmus and strabismus in both eyes, now seeing a little bit of farsightedness, but not enough for glasses. We are told that eventually Lyra will need strabismus surgery. 6 months old- At home we were seeing Lyra’s right eye turning in more. Dr. prescribes patching the left eye, 1 hr a day, everyday. 7 months- We call the doctor to tell her we are now seeing bothRead More →