|Working on sitting up, all by himself.|
So anyway, no news is good news? Maybe?
The powers that be (who is that anyway??) have put in place a new feeding system. It was supposed to be implemented a couple years ago, but there was the whole "manufacture enough for the whole country/world" complication, and some other things that hadn't been quite thought through at the time. Now, most of that has been figured out and the rest, well, us special needs moms are pretty much used to improvising and we share our hacks so it's working okay.
|Port on the new feeding system|
And just in case you really think I'm on top of everything and have it all together, let me share a funny with you. Our old feeding system had two ports: a larger one for the feedings or large syringes, and a smaller one for meds. (Those also had a tendency to open at the least opportune moment.) Because all the syringes now have the exact same tip, we don't really have a need for two ports. That's the back story:
|Shake it up, baby!|
|8 pm meds|
Evenings are always crazy busy around here. Because I'm working, I try to do all his prep work at night. I was thinking about how this really shouldn't be taking so long to get everything done, and then I started looking at exactly what has to happen.
|Prepping up his heart med|
After that, we do two MDI inhalers and a nebulizer, along with a nasal spray. He also gets a feeding and six medications or supplements in the evening.
|Ultimate Green Smoothie!|
|Our silly boy getting his inhaled heart med.|
And there's Aaron himself. Not only do we need to do his trach and g-tube cares where we clean the sites and make sure they're doing well, but he seems to think it's fun to set off alarms, pulse/ox or ventilator, it doesn't really matter. He's usually just fine, no issue at all, but we always have to check.
So there's a whole lot that goes into our evening routines here. Throw in a soccer game or practice, another activity, kids being run to and fro, and well, I'm afraid you can see how I misread "feed, meds" into "feed me." But seriously, wouldn't "feed me" be a whole lot more fun?
|Our mountain. 90* one day, snow more than|
halfway down the next. Crazy!