Sunday, May 15, 2011

Back to ER and Corneal Issues.

Our nights are usually of fussy kid.
Usually it takes Raquel an hour once up in the morning after she really opens her eyes.  For a few days we've figured it was that she was still asleep considering no one in our house less Cordelia actually gets a full nights rest.
Today, she didn't open her eyes till 9pm.
Renata took her off to Childrens to find out what was up while I was off enjoying the rain and placid waters of a regatta that was barely able to finish one shortened race. 

Since you don't pry open the eyes of a baby with EB to see what is going on, nothing happened, nothing was resolved.  And again we had a Dr who looked blankly at Ren and could only offer he's heard of EB.  I love the honestly at least.   It was only suggested we use some drops once she opened her eyes. 
Renata had a tough day keeping her calm and in darker rooms and basically dealt with the emotionally draining day of wondering what was going on.

Once home and seeing the note about her eyes and no one to greet me, I was quickly able to catch up in draining stress about our daughters eyes while I waited for my crew to come back home.

Again I'm freaked out about her sight and having continuous corneal abrasions scar her sight to nothing but shadows and light.  Or worse....
It's one thing that I've barely gotten over, the fact I'll never be able to chuck her in aerial somersaults into mass pillow cushions Cordelia and I set up or take her skiing/mountain biking off into the deep back country and roughing it, in typical jumping, crashing fun. 
It would be tragic not to at least spend some quiet and just as fulfilling time next to the paintings of Goya deep in the Prado, or the texture, sculpted shapes and volumes of the Guggenheim in Bilbao. 
We all have our strengths and passions and sharing them with your child should be goal one.
It is mine anyway.  Of course we'll have to adapt to what comes should this continue in the worst possible avenue.

We still don't actually know if she's scratched her eye yet or not.  It's only occurred to me now that it could be something else. 
Really, EB sucks. 
 "'Excuse me, but someone forgot to give my daughter her Collagen 7, it's kind of important, can we have it - now!"


  1. Hi guys..just catching up on you guys...Those eye abrasions hurt..Just keep them lubricated. When casey hurts his eye we sit in a dim room, and put lots of lubricating ointment on it. It helps to keep it moist. If it gets dry it hurts again. Casey turns four this week. Time flies. Don't focus too much on what you THINK she won't be able to do.... She will surprise you with what she CAN do. I hope you get some sleep soon. My little one does the same thing..fine all day and during the night she whines and whines and I don't know we're up most of the nigt too..and she doesn't have EB....If you need a partner to sing the praises of EB Sucks with you, I'd be happy to join you antime...Just call.. :) Hugs to you all...

  2. I may do more then that, I may show up in your state and sing in person, of course if $ and care permit.