Keeping Busy

We certainly kept ourselves busy this weekend. I started off on Saturday morning with errands at 7 stores, and was back home in 1hour 28minutes -- all done. Then we went to nana Noma's to help her out with some of the tougher yard work she needed done: pick up the last of the soggy wet leaves, rototill the garden, and put up the pea fence, all in the soaking rain (okay I admit, Devon did all the outside work at her house).

And after such a speedy start to the weekend, we got to do all kinds of household projects at our home while Avery had a Saturday night sleep-over at nana Noma's. Devon primed the ceiling downstairs for painting, installed all new light fixtures, installed new shelving in the mudroom, and limbed the tree we were considering cutting down to create our new grassy, enclosed area to the side of the house. Although I was on Jordan duty most of the time, I helped out when possible, including getting a bunch of stuff moved out to the duck barn and/or ready to go to Goodwill. We're definitely into "spring cleaning" mode, even though spring definitely isn't here yet. (Actually, the bug hit me a couple of weekends ago, but I swear, by the time we get all this stuff done it'll be time to start over.) We also watched 2 movies on Saturday night -- amazing (The Last Kiss -- LOVE Zach Braff!, and Kiss Kiss Bang Bang -- despite all, still love Robert Downey Jr, too -- who doesn't?).

Unlike this weekend, I often get to the end of the day and wonder "Where has the day gone, I don't feel like I've done a thing." Then I realize that just keeping Jordan going is a full time job, but there's not much to show for it. For example, her feeding, medicine, and dietary supplement schedule would put any administrative assistant to the test for memory, organization, and scheduling. I've had a few different systems over the last year, and now I'm on to my new one. I sit down for ~15 each night and measure out everything for the next day. This helps to make sure no one gives her a dose twice, and no one has to remembr to write it all down. If it's not there, she's had it. If it is there, she needs it.

0600: Zantac
0800: Tranxene, Flowvent, Formula with Miralax added
1200: Formula with protein powder added
1400: Zantac, zinc chloride, poly-vi-flor vitamin
1600: Formula with Tribasic (calcium phosphate supplement) added
2000: Formula, Tranxene, Flowvent
2200: Zantac
2300: Formula for overnight slow feed, with protein powder added

On other fronts, Devon has been working with Jordan over the last few days to start bottle feeding again. So far he's had great luck! On Friday night she drank an ounce of water, and on Saturday night she drank a half of an ounce. Okay, okay, reading that it's not very impressive, but if you could see how orally defensive she is (she gags over anything that gets near her mouth usually), you'd know this is big stuff. She hasn't drank from a bottle since March -- almost a year. She won't even suck on my thumb any more, but recently she's been getting better at letting me rub her gums, and she even tries to chew on my finger a bit when we do this (which hurts if it's lined up with her 4 teeth!).

In terms of mobility, we're about to get some equipment to help us out. On Wednesday she's getting a "stander" that will help her stand up for part of the day and allow her spine to stretch & straighten. I haven't seen it yet, we're getting it on loan from from our early intervention program (PRIDE), but looking at the pics on the web, I think its going to be big. And next Monday (not tomorrow), she's getting fitted (by 2 physical therapists) for a KidKart, also on loan from PRIDE. Again, I haven't seen it, but I've heard that there's a wheelchair base, and a smaller indoor base, so we'll just have to wait and see how all this equipment fits in this house. [PRIDE is able to "recycle" a lot of equipment as kids grow out of things, and considering the cost of this equipment, it's a godsend to almost everyone -- with or without insurance].

On a totally different note, I can't recommend enough Strange Piece of Paradise by Terri Jentz. It's her story of discovering the truth about her attempted murder in 1977 near Bend/Redmond, Oregon. It's not a quick, easy read, but it's worth it (whether or not you're familiar with central Oregon).

After dumping herself on her bum, Avery helped Devon with the annual 'scrubbing of the deck'. You can't see it, but it gets slippery with virtually invisible moss/algae.

New shelves in the mudroom. Play clay: that's what Avery calls modelling clay. We were playing with it on Friday night, and realized why Play Doh is so popular (it's soooooo soft in comparison to the clay). If you were wondering, I made the flower, and Avery made the toothpick bug that was attacking the flower. I'm not sure what the yellowish ball on the leaf is supposed to be, but Avery insisted it be there. Jordan joined right in, squeezing the blue clay into a worm (or snake, depending on what mood Avery's in).

A rare pose from Avery on Friday night (this time she actually asked to be photographed, and sat down to pose for it).