Tomorrow’s EUA?

Tomorrow my daughter goes back to Duke for another Evaluation Under Anesthesia (EUA).    We don’t know what they eye doctors will find (several will be in her procedure) but we’re hoping for some good news.

I would like to tell you we’re seeing great signs of improvement, but what we see from day to day, hour to hour even will cause our story to change.   Today, my daughter didn’t know I was standing in front of her.   She couldn’t find any of the group of people she came with to the park because we weren’t talking to let her know which of us were standing where, removing sound from the equation. We watched her as she wandered around, checking where we had been standing before, checking out other people and then moving on.  

Then, other times during the afternoon’s buddy walk event we saw her come right up to us and act like she knew we were there all along.     Coming home she knew we were in our neighborhood.   Did she recognize the turns of the car or could she tell the houses from far away?     I can’t tell you other than to say her vision is a mystery right now.

What I can say is it hasn’t improved markedly or even measurably from what I can tell.   This may be the course of healing that needs to take place, but it’s hard to take some days.    Tomorrow we hope to know more.

The Big Boy Update:  My son got his face painted today.  He was a werwolf or a tarantula or something that involved all black paint on his face.   I wasn’t there when it got done and I couldn’t understand him when he told me what he was (replete with mouth noises and arm action) and I figured if he was happy, then I didn’t really need to know.  

The Tiny Girl Chronicles:  My daughter has been making these strange faces lately.   She puts her fingers in her mouth and stretches out her mouth with her tongue out sometimes, other times she just pulls her mouth in strange configurations.   It is not attractive.   I think today we figured out it’s a stress response though because we saw her do it when she realized she didn’t know where we were in a crowd.    She’s also been twirling her hair a lot as well.   We’ve been working on getting some occupational therapy and guidance for her given the length this is taking to resolve so we should have some advice soon.