strabismus Archives - Parent of a Child with Albinism

Vision Update

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 to do better at leaving her glasses on. As long as no one draws attention to them, she really just forgets about them and leaves them alone. Although, at the rate she’s growing, she’ll need a new pair before too long. Uhhhhggg…

A couple of months ago when Lyra had her functional vision update, her vision was assessed using the Teller grating acuity cards. These were used to get a “crude estimate” of near vision acuity. I had heard of these cards before, but I had never seen them and Lyra had never been evaluated using them. The results of this test put Lyra’s near vision acuity somewhere between 20/89 and 20/180. She was able to point to the stripes on the 20/180 card, but not the stripes on the 20/89 card.

It’s hard to know how well she can see at a distance. I know that if she is more than 5-6 feet away from me in a room with other adults, its difficult for her to recognize me unless she hears my voice. This is hard for me to deal with at times…especially when I’m picking her up from the nursery at church. I’ll be standing there next to a couple of other moms and I’ll see Lyra there squinting trying to see if maybe one of those tall mom like figures standing in the doorway might be her mommy. 🙁
I should focus on the positive. Lyra is doing AMAZINGLY well functionally. If not for the glasses, your average person on the street would not know she had a visual impairment. 🙂

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Strabismus Surgery Success


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 never got so crusty that they were matted shut. Her recovery and healing has been fairly easy. The pictures above are from a week before her surgery and then 2 days post surgery. They look pretty straight to me, at least for now. I hope they stay straight. I am constantly checking to see if they start to cross again.

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Her post-op check up with her pediatric ophthalmologist was a week ago. Dr. Grin said Lyra’s eyes looked good and were healing properly. She will go back in about a month for another check-up.

It’s A Go For Strabismus Surgery

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. It is similar to releasing the tension upon reins to a horse’s head in order to control the horse. Muscles are attached to each eye to pull the eyes up, down, left, or right. Surgery to these muscles strengthens or weakens their functioning in order to straighten the eyes. This is done by putting a suture into the muscle, then cutting the muscle off of the eye and re-sewing the muscle at the appropriate position, which in turn strengthens or weakens that particular muscle.”This surgery was originally scheduled for February 27th. We chose to reschedule the surgery after we decided to have some blood testing completed first.
We did not take Lyra to have genetic testing after she was born to determine which type of albinism she had. At the time it wasn’t a priority. We knew we weren’t planning on having anymore children and it wouldn’t have affected how we cared for Lyra. During our planning and preparation for her surgery, we remembered there was one type of albinism, Hermansky-Pudlak Syndrome (HPS), that included bleeding tendencies. We hadn’t seen any symptoms such as easy bruising or prolonged bleeding that would give us reason to suspect HPS, but because we didn’t have the genetic testing, we couldn’t know for sure.
We still don’t know the answer to that question, but we do know that Lyra doesn’t have a bleeding disorder. Because of the time frame necessary to get an appointment and complete genetic testing, we decided to take her to a hematology clinic to test specifically for any bleeding tendencies. A genetic test alone would tell us if she had HPS, but we would still had to of had the blood testing to determine if the platelet dysfunction was present. Similarly, just because all of her blood tests came back normal, this does not tell us she doesn’t have HPS. Because of the risks involved with surgery, obviously testing for the bleeding tendencies was the priority. We plan to schedule the genetic testing after her surgery, hopefully within the next 6 months.

This surgery is an outpatient procedure. We have to be at the hospital by 6:45AM and the surgery will begin approximately an hour after we arrive. They said the surgery should last 45 to 60 minutes. After the surgery, she’ll need to stay in the recovery area anywhere between 30 and 60 minutes, hopefully no longer. After that she will be able to go into a “post-op” room where we can finally be with her again. They told us that assuming everything goes well, we could expect to leave the hospital before noon. Pain after this surgery is usually mild, but we may need to give her Tylenol or ibuprofen for the first day or so. Eye care following the surgery is fairly simple…basically just keeping them clean and free of crusty gunk. “Blood-tinged fluid will ooze from the eyes for a day or so following surgery.” Yipee! Doesn’t that sound like fun.
Yuck!!!
I’m not really even too worried about the actual surgery. I’m worried about her being put under general anesthetic. That’s what scares me. I know I’m going to be crying my eyes out when I have to hand her over to the nurse. It’s going to be an agonizing 1-2 hour wait. I can barely type this without crying. All I can do is pray and know that I’ll be leaving her in God’s hands.
She’ll be safe.

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Visits to Pediatric Ophthamologist

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 both eyes turning in equally. Dr. prescribes patching each eye, alternating every other day, for an hour.

8 months old- Strabismus surgery is scheduled for February 27th. Lyra does not need glasses for farsightedness yet, but doctor says she will prescribe tinted glasses for the photophobia in the spring.

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