Monday, November 15, 2010

Standing frames and label makers

The standing frame came three days ago. I was so afraid of this thing. I thought for sure he would hate it. I thought he would fuss from the minute we tried to strap him in until I finally let him free 5 minutes later.
I was wrong. Really wrong.
The first time the PT was here and set all the measurements and heights. We laid him down on it, affixed all the straps, and then inclined him. Not a peep. We put toys on the tray for him to chuck off (his favorite game) and he just chucked away. No fussing. 10 minutes go by, 15, 20. Really, who is this child? He won't bear weight on his legs for more than 5 seconds, usually less, at any other time. At the 25 minute mark he started to rest his head so we took him out. All in all almost half an hour without one complaint.
It has been 4 days now and he's gone for half an hour every day without a peep of complaint. This morning he actually smiled and laughed. I am so shocked. Granted there is not much weight on his feet, most of it is distributed throughout the frame, BUT his feet are touching the plates, and he is strapped in and can only move his arms and his head. My mother in law thinks it is because he likes the view. She may be on to something. usually he sees the world from 6" off the ground. There is no hint of weight bearing without the frame, just as before, but way I am so thrilled to have a way to work with him that he doesn't complain about!
As usual he has a few medical things going on, most of it just ongoing issues. He is intermittently bleeding from his G port though, and that is new (at least in the recent months). It is not just the "tube irritation" blood that I sometimes find, but actual bleeding from inside the stoma. Just very faint though. I was collecting gastric acid (as exhibit A) to bring to the doctors with me later this week when The Maniac struck.
He had been away on a business trip for a week. On Friday evening I purposefully cleaned and shined the bathroom counter tops and put my graduated cylinder of bloody goo in the back corner by my sink so the maniac would not pay any attention to it. He got home after midnight, and Saturday morning I got up to make breakfast. He got up to clean the bathroom. I don't call him a maniac for nothing. Really, pancakes and bacon are cooking? - great he's got time to scrub a toilet! Usually, this is a good thing as scrubbing toilets is not high on my "like" list.
A while later I went to do Tomas' morning stuff. I had his acid in the syringe and went into my bathroom to add it to what was already there. The cylinder was (any one guessed it yet?) empty!!! Really? I cleaned the counter tops the night before to prevent this exact thing! What was he thinking, that I keep medical bottles around with bloody goo just for fun? Did he even ask before he dumped it? And the kicker is do you know what he said when I was like "what the hell were you thinking?"

"Well, you should have put a lid on it and labeled it SAMPLE"


  1. First of all if he wants to scrub toliets send him my way. Secondly, of course it should have a label with name, date, time and your initals missy what are you thinking. Third, bloody gastric goo is just gross and I'm a pediatric nurse....