Dancing Eyes

Yesterday we took Lily to a very long-awaited eye appointment at Seattle Children's. She goes to an opthamologist every year to check for tumors; however, we wanted a more specialized doctor to look into her (what we call) dancing eyes....like nystagmus. Other eye doctors have seen it, but we wanted to go to a doctor that knows more about the condition and to verify whether something could be done etc. We first saw a student doctor and a resident, they asked a million questions regarding Lily's history, which they had a copy of but they were verifying. Then did a few visual tests, which Lily passed. Then we saw the doctor who then had us go through the entire history again, but that's ok, it's a teaching hospital, so I understand the process. But it is just an eye appointment. He looked at her eyes and diagnosed the shaking as ocular flutter, a very rare and understudied condition. It can blur her vision by a few lines, but there is not a treatment. He did say that her flutter is very fast (between 5-8 Hz). It's faster than the human eye can voluntarily move, and, as suspected, it's most likely caused by a tumor. Then they dilated her eyes and left us to sit for hours...seriously, we sat in the hospital for 5 hours waiting for him, and we still had an hour drive home. Lily was pissed, and we were right there with her. This is an eye appointment not a pre-surgery workup!!!  Nevertheless, he checks her eyes and no tumors. Yay!!! We're happy to get a positive result and were grabbing our bags and headed for the door, but oh no....he wants to go through the medical history AGAIN. And in explicit detail...obviously he is completely oblivious to not only our current state of exhaustion but the emotional wounds that are connected to all of these seizures, surgeries, and diagnoses. I was in no mood to relive the 5 weeks in the NICU, or the infantile spasms, the five hour ambulance rides to Texas, and on and on. But I carried on reiterating for the 3rd time, the long and exhausting journey from whence we came. He was also pretty insensitive...when he said that the flutter could cause blurriness, he then said "but at her developmental pace it doesn't matter if her vision is somewhat blurry." Really? I disagree. Lily's vision matters. She has just as much value as anyone else. Grrr.......   So the bad news is, Lily's flutter has no treatment. The good news is, she has no tumors. And I now need a spa day!!