By now you’re wondering what I’ve been up to.
Our family has been getting into the routine of going to school. Some of our school routines have changed with O and B going to my school with me. They have different times than I do, so it makes for crazy mornings. Although I give my usual arguments for not going to school and sometimes resort to faking an illness, in the end, I’m doing well there.
The first week was a little rough. I started just a couple hours a day, but Mom and Dad quickly saw that I had the energy to keep going. So, with some help from my amazing teacher Ms. L, I’m making it through. I have to get extra rest times and lay down in the “break” room with the lights off for a little bit. I’m sensitive to noises still, so they are taking care not to get too loud for me and I sometimes wear my funky ear covers. Dad calls them shooting range phones or something… headphones maybe? Doesn’t make sense to me since they go on your ears and you don’t shoot them. All I know is they keep the noise quieter, are comfy and funky. Here’s a picture of me with them a long time ago:
Okay, so… where was I. Oh, school…. the lunchroom is too hard for me (as it was before the surgery), so they’re mostly keeping me away from there. I give them lots of challenges on the playground because I’m still not allowed to run, jump, fall down, etc. because it will wiggle my head – but I try to anyway; it’s kinda fun to keep my teachers and helpers always on the ready. I keep asking for the “bouncy house”. Mom and Dad say the doctors have to say it’s okay first.
But guess what! I go see the doctors TOMORROW!!! Maybe I’ll be able to finally jump on the trampoline.
I’m having a lot of problems with my vision. I still run into things if I’m unfamiliar with where I am or something is moved out of place. Like when the basement door is open, I walk right into it. I even ran into the house once because I didn’t see the right corner. I actually hit the wall (outside the garage), bounced onto the hood of Mommy’s car, and was going down! Luckily, Dad was there to catch me and I just had a huge scrape on my right shoulder.
I also have a wandering eye now; it’s actually called exotropia strambismus. My right one. Every now and again, my left. But usually my right. When I get tired, my eye slips sideways, away from my nose. It’s pretty consistent now, every day. It started about the same time I started school. The eye doctor said that it’s because I’m too tired to work at holding it in its place. I’ve never had to think about keeping my eyes in one place or another before. In 3-6 months, the doctor will tell if I need surgery. Mom and Dad are looking to talk to another doc – a specialist in this. For now, wearing my glasses (which I don’t like) will help.
So, that’s a really, really, really short version of me right now. I’ll try to do a better job letting you know what’s happening… sometimes though, at the end of the day, we’re all too tired.