I missed the fact that we were supposed to be there an hour early. And I missed the paper work to look at - there were 15 attachments in the scheduler's email that I did not preview on my phone when I received it in January. Then I forgot.
They missed the fact that I was scheduled for today. But made room for us. Last night between 9-11pm, Dr. Brooks and his nurse were emailing me. It was in all my emails, but not on the actual schedule.
It snowed 6-8 inches yesterday. Which is how we figured out all that other mess.
Of course, I spent 2 frantic hours in the middle of the night worrying about this. As if I needed to. It all worked out. We were only a few minutes late to the appointment. And we returned before Nana's evening engagement. I guess I should just trust God with the little things next time too. :)
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| Getting ready for the VEP. Electrodes are attached, band is holding the wires in place. Reminded us of Zachary's sleep study last year... |
Back to Anna's Eyes... At her last ophthalmology appointment, she saw Dr. Brooks at National Children's Hospital in downtown DC. He is a pediatric ophtho with a sub-specialty in genetic eye disorders. To recap: our 1st PO (peds ophtho) had diagnosed Anna with Ocular Abinism based on her eye exam which showed transillumination. An iris (the colored part of her eye) should not do this, but when there's not enough pigment, light won't be properly filtered and the iris transilluminates. The 2nd PO only saw "slivers" of transillumination and wasn't convinced of the albinism diagnosis so he sent us onto Dr. Brooks. When we saw Dr. Brooks at Thanksgiving, he wasn't able to see any transillumination and referred us to his research office at the NIH to do a test called a Video Evoked Potential (VEP). If the test is abnormal, then it confirms the Albinism diagnosis. However, on his eye exam today, he readily saw the transillumination and feels confident that she has albinism. Hers is "incomplete" and mild meaning that the albinism doesn't affect her hair or skin.
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| Anna the Pirate: Distracted and not crying for the moment. But when they placed the strobe light in front of her unpatched eye, she started crying again. |
We went ahead and attempted the VEP, but the results were inconclusive. Probably because she wailed through it. We tried. They were very patient with us. We saw Dr. Brooks, then I nursed her and got her to nap. For 2 hours. Then she woke up and we fed her lunch. But when we put the electrodes on her head and the eye patch bandage, she was very unhappy. We tried. And tried again. But really couldn't convince her to cooperate. What the VEP was supposed to do is to look at how her eyes and brain communicate. If your right eye sees something, it sends a message to the right side of the brain and vice versa. Frequently in albinism the message crosses over to the opposite side of the brain. (I don't think that's significant to her vision, though). But if so many signals are crossed in the VEP, then it's abnormal. We didn't get enough info from this test on her, but thankfully it wasn't essential to her diagnosis today.
The other thing Dr. Brooks did was estimate her visual acuity using these Teller Acuity Cards. Roughly she's 20/100 which is normal for her age. He looking at her through a pin hole in the card to see if she watches those lines. As those lines narrow, they become harder to see.
He double-checked her refraction and she still doesn't need glasses at this time. We will follow up with our regular PO in 6 months to check for strabismus (crossing of the eyes) or a head tilt (helps some kids see better when their head is at a certain angle).
Some of you have asked more about what albinism is. This video is really helpful is understanding what it is and what her world looks like. http://www.youtube.com/watch?v=tRM8WPrl8aI
Thank you all for your prayers and loving support! Anna really is doing great! Right now we notice that she is sensitive to sunlight and that her eyes always have a slight movement to them. When she become mobile, we'll probably start to notice more with her vision impairment. But all is good for now!
1 comment:
Look at our little Anna sitting there all by herself like such a big girl. Thank you for sharing the link to the video about OA...it was extremely informative as to what Anna's world might look like to her.
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