Super Z update

Well, I’m not gonna lie. Today was hard. Harder than most. We headed in at 6am this morning and ran into traffic so bad we were 45 min late. Putting him down for the MRI was one of the worst experiences. As they put in the propophal it burns, and all though they put lidocane in the IV before to try and numb it, sometimes it doesn’t have enough time to work. So I had to hold Zayne while he was screaming that it burned. I could feel his tears on my arm as I prayed for the medicine to kick in and he would drift off to dream land. It felt like eternity but finally I felt his little body stop fighting. I laid his head down with tears on my cheeks. Kissed his sweet lips and left that room I know all too well. That never gets easier.


Then when he woke up he was exceptionally grouchy. To the point of yelling. We FINALLY were discharged after about an hour of recovery. Down to the cafeteria we went. We ate super fast and walked over to the next hospital for the eye exam. We were 30 early and hoping to get in right on our appointment time to avoid traffic on the way home. I will never get used to a 5 lane highway being stopped for traffic. I mean there are 5 lanes…seriously. Just doesn’t happen up north. I walked up to the counter to be greeted with the news that the eye doctor was an hour behind. We waited for an hour and a half before going in with the technician. She told me we had to dialate his eyes. Oh boy. Not fun. We were already exhausted. I was already emotional, and he was adamant that he was NOT getting drops. I held his body and my mother-in law-held his flailing legs while the tech pried each eyeball open and put four different drops of four different meds. He just screamed. Screamed while I held him still. We got done and had to wait another hour. Finally we were called to see the doctor. After a quick exam his right eye has gotten worse. Not much…it went from 300 to 400. When they patched his good eye and asked him to say the letters with his bad eye no matter how big they put the letter he could never guess it. He kept telling her “I can’t see….you can’t cover this eye up or I won’t get it right.” Wow. He also kept telling the doc that he could see NO black letters (no matter how big they made them) on that white screen, he could only see white. She positioned herself about 3 feet in front of him and covered up his good eye and said “ok…look at my nose.” He said “I can’t see your face.” She moved to about 1 foot away…”Oh now I see you.” He said. He didn’t pass the color test as well as last time. His peripheral has gone down as well. She said he can basically only see what is right in front of him hence the running into walls and other kids. His vessels are as pale as they come. There are no more levels to go down to. It’s as pale as it can get. Not the best news but I have to say whenever they uncovered his good eye, he would look at that screen and say “Oh it’s a letter H.” He was so proud when they took that patch off and he could get it right. And you could tell he wanted to let them know that He knew his letters  Next we had take a picture of his nerves in his eye. And then finally we were able to leave.


Got stuck in traffic on the way home for an extra 40 min. but we made it. I’m sorry this blog isn’t as story form as I would like but we are all exhausted. I will have no news on the MRI til Thursday afternoon. I CANNOT say thankyou enough to all the posts on FB  All the Z shirts!!!! Seriously you all have no idea how it felt this morning putting on my old ratty Z shirt knowing hundreds more people would be wearing their’s….so empowering!!! I knew we had an army with us…and even if I don’t get to push the “Like” button on everything please know how special each post is to me!!! I hope to fill everyone in Thursday night!! Til then 