Slow News Week

As the days passed this week it didn't really seem like there was much to report -- hence the silence here. And, the weather was nice, so we were keeping busy outside in the evenings -- finally. Devon was shoveling himself out of his vacation hole by working ~16 hours a day all week, and reports that now, after working for a good chunk of the day today, he is almost caught up. . . .

As reported earlier, Avery started pre-school on Monday and is doing very well adjusting to that. She's not always excited to go there in the morning, but has a good time while she is there, and by dinner time is anxious to back the next day. This has forced me into a morning schedule for the first time in over 1.5 years, so I'm adjusting, too. It's admittedly nice to have a couple quiet hours in the morning to think, make phone calls (doctors, insurance companies, medical equipment companies), catch up on e-mail, and sometimes even take a nap before Avery gets home.

It's been hot here, so we've been running the air conditioner during the days all week. Imagine my surprise last night when I took the last step on my way downstairs and felt my socks soak through. After pulling up the carpet in the hallway we traced the leak to the air conditioner, in the furnace room under the stairway. The condenser seemed to be working just fine, but pouring water all over the electrical wiring, which was then leaking onto the floor. The carpet will have to go (woo-hoo), but luckily the floor is concrete, and the walls aren't wet, so I think we averted a flood disaster. Devon and our neighbor Galen were able to fix the leak themselves today! Yippee!! So, it was only a minor annoyance in the end (knock on wood that I don't jinx it!).

I was been busy painting this week, whenever I had a free hand. I finally finished the outside of the house, and, at ~7:00pm tonight proudly hung up the 1309 against a red background, and near the white trim of the door and window. The side is all done, too, and all of the moulding inside the house that needed to be primed has now been primed & is waiting for color! Tedious, but very rewarding work. I really appreciate looking at what I've done at the end of the day, and I've alway kind of liked painting.

As for Jordan, she has not had a great week. She's on some low dose seizure medicines, but over the last week we've noticed a dramatic increase in the number and frequency of her seizures (myoclonics). And now they are falling into a pattern as well: screaming, seizure, postictal (calm). So, when the screaming gets high pitched (and not teary), there's surely a seizure to follow. We see the pediatric neurologist next week and will have to discuss some more serious seizure treatments, one of which is the Ketogenic Diet. I have been busy this week trying to learn a little more about it, but it seems like a no-brainer for Jordan, since she is fed through a tube anyway. That makes the diet part easy, but keeping her in Ketosis & healthy requires strict medical supervision, frequent blood tests, and invariable takes about 5 days in the hospital to start. So, we won't be doing this lightly, but I'm feeling partial to it because so many of the seizure medicines are very rough on the body & the brain, and have many brutal side effects that go with them.

Otherwise I spent a good 8 hours on the phone this week, and a few more off the phone, trying to get her durable medical equipment account sorted out (feeding pump, supplies, suction machine, etc). We're very thankful to have good insurance through Devon's work, but are frustrated to find that the limit on DME for the year is very small for Jordan. I also spent a few hours trying to track down a doctor to get another diagnostic test sorted out for Jordan. I'm sure it'll be normal like all the rest, but we'll never know if we don't try.

Avery was finally able to catch up with Kate on Friday -- between our vacation and their's it had been awhile since the girls had been able to hang out. She also played at Kate's house this evening for a couple of hours, then Kate & Kelly joined us for some smores in the fire pit. We were hoping to get a camping trip in at the beach soon, but since we haven't sorted that out soon we put the tent up in the yard & did smores here. I don't know if they'd ever sleep in the tent since they seem to have too much fun playing in it. . . . We opted for beds tonight, but maybe tomorrow night.

So I guess that's our Slow News Week in a nutshell.