My mind started to wander after receiving the news. My doctor recommended a particular doctor up at the Moran Eye Center and encouraged me to contact them on Monday. I started asking Dr. Lloyd to write things down on post-its since my brain was still processing. As he watched me, Dr. Lloyd gave me a post-it with his personal cell phone number on it.
"I'll meet you here night or day," he said. "Please call me if you have questions or if I can place a call to the Moran Eye Center for you. I can't guarantee that my call will do anything, but I'll be willing to do anything I can to help."
From what Dr. Lloyd understood, the Moran Eye Center can't do anything more for my children than the retinal specialists that we're currently seeing. The advantage, in his mind, is that they are a cutting edge facility and will have the newest treatments available.
"You need to get all of you in," Dr. Lloyd instructed. "You need to get the baby tested, but Jenna, I think this disease is dominant not recessive."
I blinked. My brain was working so slowly--there was simply so much to take in.
"What I mean," Dr. Lloyd explained, "is that I think one of you has this. There are simply too many kids effected for this to be a recessive trait. Perhaps the blind spot for you or Wendell is way in your peripheral vision so you don't notice it. But when you call the Eye Center, tell them that you have 4 kids and 2 adults who need to be tested. You'll need to make a day of it. Treat it like you would a day in the car. Bring the snacks, games, the DVD player. Just expect to spend a day there."
He went on to explain how much hope there was in the future. Not just for the current treatments which were unavailable as recently as 7 years ago, but also for treatments that were yet to come. There is current and future research. There is hope.
I nodded. In addition to all of the other thoughts running through my brain was, hold it together--just hold it together.
Mike looked at me and around the room. The boys were climbing on the furniture and Annika was pulling on my arm and whining. Since the kids weren't paying attention, Mike gave me the worst case scenario, too.
"It's possible that everyone's eyes could end up like Emma's right eye," he said.
The code is, it is possible that Emma, Nathan and Annika could go blind. But we've caught it early. And we'll be able to give it a good fight.