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 →

Putting sunscreen on Lyra so much is a big pain in the butt. Only because I’ve been lazy and careless in the past. I have never been real consistent in putting sunscreen on my oldest two children or myself. I should have been. If I had put sunscreen on them more regularly, it wouldn’t seem like I was constantly putting it on Lyra now. I would never take her out without sunscreen. I know I just need to make it a habit. Right now its still an annoyance and I’m being selfish. This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 UnitedRead 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 →

Dominick is 5 years old. Dominick is my sweet baby boy, definitely a mama’s boy. He is laid back and untroubled, witty and random. Until recently he hasn’t really asked questions related to Lyra’s albinism. When she was born, we talked to him about it, but not in great detail. He was 4, so he didn’t really understand what it all meant. He knows to help keep the sun out of Lyra’s eyes and that she has teachers come work with her at home and she doesn’t see as well as he does, but he’s never asked why. I’m sure everything has affected him andRead 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 →

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 →

Milestones- Focuses on faces- 4 months Laughs out loud- 3 months Rolls front to back- 3 months Rolls back to front- 6 months Sits unsupported- 7 months Says “Da Da”- 7 months Says “Ma Ma”- 8 months Crawls- army crawl- 1/7/07 First teeth- 1/7/07- two lower central incisors came in together (this was a big day) Claps hands- Feb 4th, 2007 Pulls up to standing position- Feb 11th Goes from sitting to crawling and back to sitting without help- Feb 13th Crawls-on hands and knees- 10 months Cruises-side to side only, along sofa or coffee table- 10 1/2 months Stands alone- 3/25/07 (maybe 3 seconds-tops)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 →