http://www.youtube.com/watch?v=qnfv0oRicxs]]>Tatianahttp://lilyharper.org/index.php?itemid=92Tue, 29 Apr 2008 22:31:52 -0700Our Gift - Update
http://lilyharper.org/index.php?itemid=91
this is actually their box!) Would you like fries with that? How about Crocs?]]>Generalhttp://lilyharper.org/index.php?itemid=91Fri, 11 Apr 2008 20:31:55 -0700Our Gift to the World
http://lilyharper.org/index.php?itemid=90
The ULTIMATE Gift Certificate!
(Note: The word "babysit" is lined out in the original. I couldn't figure out how to get PowerPoint to use strikethrough, so I'm doing it by hand...)]]>Generalhttp://lilyharper.org/index.php?itemid=90Fri, 11 Apr 2008 17:51:23 -0700Foreshadowing?
http://lilyharper.org/index.php?itemid=89
Click here for the video]]>Generalhttp://lilyharper.org/index.php?itemid=89Tue, 8 Apr 2008 22:12:56 -0700Why We Don't Get Out Much
http://lilyharper.org/index.php?itemid=88
November 2007. We are driving to Mesa for Thanksgiving. Once again, we expect to take the good car. This time, on our way out of town, we stop at a gas station to check the air pressure and make sure everything is where it should be. It wasn’t. One of our tires had gone from 32 p.s.i. to 10 in less than 24 hours. Not wanting to repeat July’s adventure (except maybe in the middle of the desert), we decide to go home and bring the other car. No more than 30 minutes after our departure, our car is totaled.
December 2007. We arrive in Phoenix unscathed, but that’s only because it wasn’t our destination, just a layover so we could fly to Salt Lake City for less.
March 2008. Katharine (MB’s sister) had a baby, and MB was driving up to visit her. MB wanted to take the old car (a ’97 Corolla borrowed from her sister), but our mechanic recommended that we get new tires. So, she decided to take the Mazda instead, leaving me with the kids for the night.
About 45 minutes after she left, I got a phone call from her. “Does the CD player run off the battery?”
“Ummm… I think it’s really powered by the alternator when you’re driving. Why do you ask?”
“Well, it just stopped working”
“That’s weird. Do your lights work?”
“I don’t know. I can’t see them”
“Well, turn them on and see if your dashboard lights get dimmer. If they do…”
“I gotta go. I’M STOPPING!” Click.
About two minutes later, she called me back and told me that the car had died so suddenly that she couldn’t get over to the right lane (there are only two on the freeway there). She had to pull into the median, but she couldn’t even get all the way off the road – her passenger-side mirror was actually in the roadway, she thought. “Every time a car passes, I feel the entire car shake”. To make matters worse, the battery was so dead that the hazard lights wouldn’t come on.
So, I left to pick her up. The tow truck arrived and carried the car to a dealership about halfway between Sierra Vista and Tucson
In the end, it turned out that our alternator was overheating. Once it reached a certain point, it would die altogether, leaving the battery to power everything from the spark plugs to the CD player. Not so good.
But now, $400 later, our car works just fine. And it probably will stay that way, at least until we decide to drive to Phoenix. So, if you live there and you want to see us, either come down here to visit, or have a tow truck on your speed dial. ]]>Generalhttp://lilyharper.org/index.php?itemid=88Sun, 6 Apr 2008 21:00:04 -0700The O.T.
http://lilyharper.org/index.php?itemid=87
It would be nice if the problems were just in his legs, but they’re not. The problems moved to his fingers, hands and wrists, as well. In addition to the muscle weakness, however, some of his muscles and tendons have calcified somewhat in that area, making him much less flexible than he should be. Where most of us can bend our wrists up and down about 90 degrees, Aren is lucky to get 15 degrees in either direction. He also has a tough time making tight fists; between inflexibility and atrophy, he can’t get his fist much smaller than about ½ inch diameter on the inside. He likely wouldn’t be able to completely crush a toilet paper tube.
OT is basically Physical Therapy, but rather than focus on large muscle groups (legs, arms, etc), it focuses on fine motor skills involving the hands and fingers. So he has several stretches that he does, some alone and some assisted. For example, one exercise is to put his hands above his head, palms together, then bring them down in front of him as low as he can while keeping his palms together. (Think The Karate Kid preparing to chop through a bunch of ice, practicing his breathing.)
He’s only been going for a few weeks, so it’s too early to tell if there has been a lot of progress. But we’re very hopeful. So, wish us luck!]]>Arenhttp://lilyharper.org/index.php?itemid=87Wed, 26 Mar 2008 20:18:59 -0700Update
http://lilyharper.org/index.php?itemid=86
She’s also very loud. She babbles sometimes, but her signature noises are yells and grunts. I’ll see if I can get some footage of her doing her thing and post it; it’s pretty funny. It’s even better when you can keep her going by grunting and yelling back at her.
Tania: “ABAAAABAAABBAAAA!”
Me: “ZHZZZHHZHHZHZHAAAAAAZHZHA!”
Tania: “DADADADAAAAAAAAADAAA! AAAYYYYYAAAYYAA!”
Me: “GAAAAAHAAAHVZZZHHAAA!”
Tania: [Low hissing sound formed by exhaling while constricting the throat. It sounds like Napoleon Dynamite’s exasperated “Ahhhhhhhhhhhhhhhhhhhhhhhhhh”, but more threatening] “GAAA!”
We have such high hopes for her – maybe she’ll be picked up for a GEICO ad. "So easy a BABY caveman could do it!" She'll be the one trying to chew on rocks.
Aren is as funny as ever. Last month we got tickets through Make-A-Wish for Monster Jam, and he loved every minute of it. Well, once we sat down he loved it. He got pretty tired of waiting in lines for food and souveneirs. He also started occupational therapy last month, so he does his hand exercises and stretches every day. He complains about it, but we’re hoping that he’ll eventually gain most of the mobility in his hands and wrists back.
I think that’s about it… And I think I feel some sleep coming on, so I’m going to try to go to bed again. Wish me luck…
]]>Generalhttp://lilyharper.org/index.php?itemid=86Tue, 25 Mar 2008 21:59:12 -0700Ports
http://lilyharper.org/index.php?itemid=85
In other, more exciting news, last Friday Aren had his port-a-cath removed. For those who don’t know, a port is basically a device implanted under the skin to make it easier for doctors to draw blood (for labs) and deliver IV medications. (To read more about ports, click here)
So now, for the first time in five years, Aren has no medical devices implanted in his body. Even though there are still issues that he’s going to have to work through (mostly muscle and bone issues resulting from four years of prednisone – see the broken leg stories), it feels like we’re finally done with all of his medical problems.
To celebrate, I’ve posted an all-new video of Aren on YouTube. Actually, it’s not new. I finished it last Christmas, and it’s made up of video that we took of Aren on his Make-A-Wish trip. And it has nothing whatsoever to do with medical stuff. But it’s fun to watch, anyway. So, enjoy. Watch the video.
]]>Arenhttp://lilyharper.org/index.php?itemid=85Sat, 22 Dec 2007 10:35:27 -0800
