Save Our Sclerae!

Orion and #1 Big Brother Skyler share a happy moment in transit.
Feb. 1, 2013

Well, where have I been the last 3 weeks?

I was running around as the chauffer, chef, delivery lady; staying up with Orion when he goes N24SWD on us and spacing out on Facebook. Thomas had surgery 3 weeks ago and until earlier this week has been totally on his back. I’m glad to see him getting better (not just for him to take on some weight I’ve been carrying).  He and I are still recovering from this (insert your favorite noun).

Sleep deprivation was my curse the last 3 weeks. Well, all the time actually but it was really hard the last three weeks. I don’t know how to take naps but I probably couldn’t anyway with the appointments, taxiing, home visits (don’t feel bad if you’re reading this- it’s all about Orion!). I finally crashed Wednesday morning after some Tuesday night excitement/concerns resulting in Orion missing PIP but I feel so much better.

On Tuesday night, Orion, from standing on the carpet next to the bed, climbed onto the bed. His first successful one! He was so excited about his accomplishment. He was laughing! Laughing and trying again. Sure enough, he collapsed from standing into a split on the floor (head to right foot), cried and a lump on his head appeared. He recovered just fine but with him having 'mild' osteopetrosis, we brought him to Dell Children’s ER knowing they’ll do a CT scan which they did.  Once he woke up from sawing logs on my chest, Orion was so squirmy and wiggly on the gurney I was constantly holding onto him. Why can’t they just put him in a crib so he doesn’t have another accident in the ER?! (It’s the same at Children’s National in Washington, DC. No crib unless admitted.)  We got there 9 p.m., left after 1 a.m. with a clear head CT and $100 less.  At home Orion did not go to sleep until 4 a.m.

A snippet of the doctor's Q & A even after I already told her Orion was standing before he recruited that lump on his head. (I give her credit for it was so late into the night, too.)

Dr.: "How high was the bed?"

Me/however the interpreter presented it: "Orion is taller than the bed, he was standing on the carpet when he fell."

We realized that as Orion is able to do more with his body, the accidents will increase. ER co-pays are $100 each with our insurance coverage. If Skyler or Anastasia fell, I’d ice it and watch them; again with Orion this is not sufficient. My plan is to find an urgent care center that has a CT machine, our urgent care co-pays are $15. The dark irony of a Deafblind person having osteopetrosis shall go on. _x,,

As for Orion’s Dali-esque internal body clock, he usually sleeps through the night when I put some grounded melatonin in his yogurt just before bedtime. Some nights I’m so tired I don’t do this, soon enough miles of thin red lines creep all over our sclerae.

If anyone wants to get Orion a gift, a high-density (foam?) gymnastics mat would be wonderful for his room! Or a bubble wrap jumpsuit and hockey headgear...