School's Out!

Memorial Day 2006. We made it to summer! Because we're hosting some of our family for a cook-out today, we get up early to start cleaning the house. Then R_Dub, our 9-year-old, comes in the kitchen, holding his right arm at a funny angle.

"My arm hurts."

B_Dub and I take a look, and yep, it looks like a bleed. The bicep's swollen. It's not huge; it's not hot. It is swollen, though, and since our h/o nurse told us to be wary of any changes, I call the hospital. Because of the holiday, our hematologist isn't on call. The doctor who does speak to us tells us to go ahead with today's scheduled infusion and call the clinic in the morning. Gee, thanks. Why didn't I think to treat a bleed with factor? Ugh. We'd been told to notify them if we had any problems, but when I do, I feel stupid.

So R gets his factor and spends the rest of the day swimming, eating, playing with cousins, performing for grandparents. His arm isn't bugging him, and except for the time when K_Dub, his 8-year-old sister, socks him in the pool, the bleed is forgotten for the day. But tomorrow looms, and I'll have to call and follow up on this scary development.

The blasted inhibitor that turned our lives upside down in October of 2004 returned this March. This time around we aggressively attacked it with high doses of factor 8, and the level (which was never too terribly high) returned to zero within a few weeks. Part of our aggressive attack was to do infusions daily instead of every other day, but we were told that would be for just one month. After 10 weeks of the daily routine, we FINALLY got the go-ahead to drop back down to every other day. Just in time for summer, we thought.

We've been on our every-other-day routine for a week and a half, and R gets a bleed.

So what? Why does this matter? Why get bummed about an added 20 minutes of procedure on alternating days? We are so very grateful to have factor in the first place. Our kid is in great health, active as he wants to be. Still, the thought of returning to daily factor haunts me. The best I can figure, it boils down to this:

• Having a day off from factor helps to ward off the drudgery of the routine.
• To get the super-high dose of factor, R has to get four boxes' worth of factor. Each box is 2"x2"x1". When we have a month's supply of factor in our house, about a third of our fridge is consumed by those boxes.
• When R goes to camp later in June, I may have to be there every morning to oversee his infusions (as opposed to two mornings in the middle of the week). It wouldn't be such a big deal if K had a place to be that week. I can't bear the thought of leaving her here with B (who'll be working from home) while big brother's having fun with all of his church friends.
• When we take our big vacation in July, we're looking at transporting gobs of factor, which has to stay refrigerated. I've already been trying to wrap my head around those logistics, and now we may have to double the amount of factor we'll have with us.

So maybe everything's fine. Maybe the swollen arm is nothing. Or maybe we just need to give up the hope that we can go one day in a row without factor.

K_Dub: Basketball Superstar

Once again, K_Dub scored all of her team's points: 12 today. So far for the season, she has scored all but 2 of her team's points! Now that the season is nearing an end, we're wishing we had kept track of her point totals from each game. We recall that her team won their first game 12-6, with K scoring all 12. Their second game, she scored an amazing 20 points, and her teammate added another 2--to no avail. It was a barn-burner. After that, the point totals get fuzzy. I was sick and missed one game, and other games have been so frustrating, that the numbers just fall out of our heads. We think she had 8 points last week, so we know she has at least 52 points with two games to go.

Anyway, she is a joy to watch on the court. Her ball control, her tenacious defense, her ability to make some really tough shots while being guarded by a girl who's a foot taller than she is--WOW! Other parents compliment her mad skills each week, and we've noticed that the opposing team goes on a scoring tear during the two quarters when she's on the bench.

Our outing to the game and to the 99-cent Store complete, we're back at home, ready to snuggle up and stay cozy. The temperature's dipping below freezing for one of the few times this winter, and freezing rain is falling. Not much is sticking yet, except for on our deck where B narrowly avoided becoming the first casualty of the storm while he was getting firewood ready. It's been too hot lately for coffee, so I'm off to brew some for this chilly day. Speaking of chilly/chili, we're having Frito pie tonight.

Resolution kept

Start blog. Check.

Maybe the resolution should've been to maintain a blog.

I read blogs all the time, and I'm always inspired by the way the "rock star" bloggers eloquently describe their goings-on. And my, what they have going on! They make me feel like I'm not going at all. But that's not true. My world can be just as exciting or tumultuous or comedic or tragic as anyone's.

So here goes nothing...