In preparation for the appointment we gave my daughter some Benadryl so she would be a little groggy. The procedure is easy for an adult: close your eye and sit still while a one-inch thick wand covered in ultrasound gel is rubbed around on your eyelid. How does a four-year-old handle that though? She was doing fine, lying on the floor looking at her iPad and then when the doctor came in she went nuts, screaming and struggling, not wanting to sit up in the chair or in my husband’s lap. And then, in that special way doctor’s have, Dr. Trese calmly asked her if she was ticklish and she calmed down. She sat completely still for five minutes while he looked at each eye in detail.
I was behind the ultrasound machine they’d rolled in and the medical student and I were trying to get some glimpses of what he was seeing. He printed out four pictures in black and white, two of each eye. My husband who had a clear view of the screen the whole time told me later, “I could see you were trying to watch, if I could have I would have told you not to bother.”
He was right, when Dr. Trese showed us the four pictures I had no idea what we were looking at. With the pregnancy ultrasounds you sometimes get a glimpse of a spine or head and you’ve got a clue. This was just black with a little white “noise” interspersed. Dr. Trese showed us the left eye and some squiggles which he said were the retinal folds which still persisted. Then he showed us the picture of the right eye and said it looked like the folds were absent. Again, not definitive, but signs look potentially positive.
We go back to Detroit for surgery in her right eye on March 7th. He plans on creating an opening in her lens capsule so she can see clearly though the eye. Hopefully the retinal folds will be gone and the pressure will remain stable and if so, he’ll replace the heavy PFO substance with more Silicone Oil. Then…we wait to see if she can see.
It’s that waiting to see if she can see that’s tough. One of the things Dr. Trese suggested we do is shine bright lights into her right eye to stimulate the rods and cones. There is some research in the field of Pleoptics that suggests light stimulation might encourage vision and help prevent amblyopia.
So what have I been doing today since we left? I’ve been shining the brightest light I have directly into my daughter’s eyes per his recommendation. That little LED cell phone light is so bright I can’t even begin to look into without discomfort. But here’s the thing…is she seeing? I’m going to step off the positive platform and climb down into the negative pit for a minute, so bear with me.
I’ve taken my cell phone light and snuck it around her head and gotten it right in front of her right eye and she hasn’t flinched. The first time that happened I nearly cried. But as I’ve done it more, including having her help me hold the light up near her eye, it seems like she knows it’s there, but it’s just not that bothersome. Perhaps that’s because there’s a yellow-colored curtain in the form of a clouded lens blocking the piercing characteristic of the light. She’s told me the light is white, but she can tell that from the left eye that’s getting some of the light rays.
I’ve done this light “work” as I’ve told my daughter it’s called, about fifteen times since we’ve gotten in the car today, including when we were out at lunch. It’s hard to tell what she’s seeing, how bright it is and if things are more difficult to see since last month when the lens capsule wasn’t nearly as opacified.
Okay, update as of twenty seconds ago. I decided to do the same test on my eyes: here’s what it’s like. When the light is near your eye it’s bright, yes, but not uncomfortably so if it’s shining in the periphery of your vision. It’s only when it’s in the direct line of sight that it becomes painfully bright. I’m feeling better about this. I’m getting back on my positive platform now as I think about this because my daughter doesn’t have a central focal point in her right eye that can see anything clearly right now. She just reacted in a similar way when I shined the light in the area of her left eye. She said that yes, she knew the light was there and what did I keep shining that light in her eyes? So maybe things really are moving in a positive direction.
The Big Boy Update: My son has been with my mother, Mimi while we’ve been in Detroit. He was riding to school this morning in Mimi’s older model car. He looked around her dash and then asked, , “Mimi, where’s your screen?”
The Tiny Girl Chronicles: We wanted to do something/get something for my daughter for being so understanding about everything going on with her eyes, the trips, the procedures, etc. After her EUA yesterday we decided to take her to Build-a-Bear at the shopping mall. She selected a white bear with rainbow hearts and dots on it, a dress with black sequins and a rainbow skirt. She picked out the Teenage Mutant Ninja Turtles theme song for the button on the bear’s hand. She did a “heart ceremony” and put a tiny red heart into the bear. Then the lady at the store with the assistance of my daughter stuffed the bear. My daughter is quite fond of her bear, brushing her fur and cleaning it with wet wipes, feeding her teddy graham cookies and singing to her. She named her “Blastoff”.
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