|Last week, Aaron won a contest|
from Neotech. Here are the goodies
they sent him.
- I found myself having to think to make sure I was giving out the right kid's birthday when I called about some of his supplies. (And his didn't roll off my tongue when calling about another kid!)
- I had to go look at a calendar to try to remember when he was last seen, and by which doctor.
- I don't respond to the first, or even second alarm anymore. And if there's anyone else around, I often ask them to check on subsequent ones if I'm busy.
- He's not the one that's woke me up in the night the last few times "mom" has been needed.
- I haven't updated his medical history since mid-July (right before our trip).
- When I went to update it today, I had to put in a few communications with doctors, no actual visits, and some feeding changes. Oh, and a WHOLE LOT of therapy appointments. It's telling that he hasn't been to the doctor, and he has been around for therapy.
- When he's out of his bed (so he can lie flat) he rolls over to his tummy on a regular basis. He does get stuck because he doesn't have the muscle strength yet to push himself back with his arm and leg. Kinda funny because it's the opposite of his siblings. They used to roll from tummy to back and then lie there like turtles, waving arms and legs but not knowing how to go the other way.
- The biggest change to his regimen has been the up and down and up again of his calories as we try to balance his weight gain with his height.
- He's up to 2 1/2 hours, three times a day, off the ventilator! YEA!!!! This is a HUGE thing. Most people think it's pretty amazing, and it is. But the medical professionals, those who understand how 24/7 ventilation actually causes problems for the lungs, they are floored. Because what he's doing is very rare indeed.