October

It's going to be a long month. Detroit is over, but OHSU & UCLA still loom, and I can't imagine either of those visits will be any more fun than Detroit was. Good Jordan news is hard to come by these days. The days get noticably shorter & for the third (out of four) Octobers that we've been in this house, renovations are looming. Not finalized, but probable. There are a couple of things I like about October -- the pumpkin patch, carving pumpkins, and roasting & eating pumpkin seeds, with lots of salt.

I'm torn between "giving up" -- taking a permanent position on the sofa, feeding and snuggling with Jordan for as long as I can -- and keeping the fight alive. Just today I received a few doctor suggestions from some fellow "undiagnosed" families. Of course they are all on the eastern seaboard. I do appreciate the help & suggestions, but I wish we could teleport there if need be. I will follow up on them, but I am really getting tired of the battle. It's exhausting, and I'm so tired. I'm tired & sad to the core.

Tomorrow Jordan will have her PRIDE evaluation. It's part of Washington state's early intervention program, to keep kids aged 0 to 3 on track for school. Seem's a bit superfluous at this point, since we already have teams of doctors working on her, and school is waaayyyyyyyyyy far off at this point, but hey, I guess I'll take help where I can. I'm actually more interested in the social & cultural link than the actual therapies Jordan will qualify for.

One thing I can't shake lately is how much of an "only child" Avery is. It seriously bums me out. I've said and thought it before, but it just breaks my heart. She wants so much to play with Jordan & develop their relationship, but of course time stands still for Jordan, and Avery has to settle for kisses & hugs here and there. It just wasn't supposed to be this way. At this rate Avery is only going to associate sisterhood with doctors, nurses, hospitals, and illness. "I have a sister Jordan, and she's sick" is usually how Avery discusses her. Avery is always pretending to take Jordan's blood pressure, listen to her heart, and give her shots. She even knows how to hook up Jordan's feeding tube, and wants to do it "all by myself" whenever we're about to feed her. Then, of course, she has to compete for time Jordan, and Jordan takes alot of time each & every day. She never complains about it, but sometimes she does get crabby & irrational when she's being "ignored" for Jordan care -- and rightly so.

I guess I've decided that It's a good night if I make it to bed before Conan comes on, especially since he annoys me. Leno's on now, so I guess I better head off to bed soon.

Silliness from Oregon today: Record Rubber Band Ball

Famousness for today: Our kitchen lights were featured in an episode of Law & Order: Criminal Intent tonight -- they were decorating a gay bar! Now we have famous kitchen lights!