Hope saw the two most important people yesterday: Santa and her cardiologist. She was ho-ho-hum about Santa, but kicked, giggled and waved her arms for the cardiologist. The girl's got some suspect priorities.
But maybe she was on to something. The cardiology appointment is a biggie. We've worried about it for weeks, in our familiar way. First, we deny and refuse to discuss. Then, as it approaches, we feel sick to our stomachs and paralyzed by dread until we're in the waiting room thinking, "Oh God, we're going to spend Christmas in the hospital."
It's not the ideal strategy, but so far, so good.
And it sort of works: Hope's appointment went well. Her heart is still a bit abnormal. She has a narrowing of her aorta, which could be suggestive of a mild coarctation. Some blood appears to be flowing a wee bit faster than it should, which could lead to other problems down the road. But not now. Her numbers are great. Her heart is working as it should. There's no change from seven months ago.
In short, good news. We don't have to see the cardiologist again for nine months.
Merry Christmas indeed. Phew.
Wednesday, December 24, 2008
Friday, December 19, 2008
Friday, December 12, 2008
The call came precisely at 4:50 p.m., EST, on Dec. 10.
"We have a breakthrough," Mo reported.
Cue the joyous exultation.
As if we needed a reminder, we learned again this week that all of life revolves around poop (except perhaps those pesky 65 years or so between toddler-dom and seniorhood.)
We had, plainly, a poop emergency. Hopesy hadn't taken care of the TCB since Saturday. Granted, there was one mere nugget on Monday. Beyond that: Lots of moaning and groaning and writhing and ughhing, but four days without satisfaction.
What had we wrought? We broke the cardinal rule of regularity: consistency. We switched Pediasure to Pediasure with fiber, and then fed her an organic chicken baby food she'd never eaten. We strayed from the routine of only switching one foodstuff at a time.
Bingo, bango: Disaster and restless nights. We tried prunes. We force-fed Milk of Magnesia. We begged and cajoled. But during stretches like these, bowel movements have a way of dominating life and conversation.
"Say ... do you think the tragedy in Mumbai is an outgrowth of failed colonialism or an inevitable flare-up of tribalism?"
"I can't believe she hasn't pooped."
"If I do say so myself, that $700 billion bailout sure seems like money well spent. Cheerio, Congress!"
"Smell her diaper. Has she pooped?"
"An army of aliens is swelling at the front door, singing Christmas carols that only Anne Heche can understand."
"Why won't she poop?"
On and on it went. Already saddled with a nasty cough, poor Hopesy would strain so hard tears streamed down her cheek. During a visit to the doctor, she made odd guttural sounds that vaguely replicated the mating call of a libidinous right whale.
Finally, relief came. Hope huffed, puffed and blew ... OK. Enough with the metaphors. We shared our plight with old friend Dr. Spitenup.
"Had you considered suppositories?"
We had one reaction: Duh. Thirteen months on, we're still slow on the uptake on this parenting thing.
Monday, December 8, 2008
This is the 100th post of 2008. I probably should write something profound, about the continual comfort of the community we've found through the blog or the cathartic effects of being able to occasionally unburden -- and perpetually make yahoos of -- ourselves.
All are true. No doubt. But I've got nothing. And that's great.
When we started the blog 13 months ago, we didn't know what we were in for. Hope's health seemed dodgy. We were astounded we got to take her home from the hospital, and then terrified by the prospect of taking care of her alone. We worried about surviving a winter of seclusion. Her heart issues seemed so grave we didn't dare verbalize them. We feared the future -- not only the prospect of life with CdLS, but getting so far ahead of ourselves, beyond the immediate crisis, that we could even have the luxury of far-flung fear.
In short: perfect material.
Good news for us, bad for the blog: As it always does, life seems to have rocked itself into an equilibrium. We have the same concerns and worries we always do. We still visit the same roster of doctors and have the same over-arching concerns. They just don't keep us awake like they once did. Sometimes -- coin over shoulder, pat Buddha on the belly -- life seems downright mellow.
It's been trending that way for a while, which is good. Hence three months of videos recreating Lulu eating hearing aids, mashups with Scooby Doo and imagined debates. It's caused no small amount of angst, chin-scratching over the direction of the blog and occasional publish-or-perish paralysis. During my most self-important moments, I've asked: "Oh no! Have I run out of things to say?" as though I'd once dispensed pearls of wisdom worthy of Mao's Little Red Book.
But then I remember what a kid told me once in high school detention: "Don't take yourself so damn seriously. Let's party."
Such encouragement sent me on a 12-year spiral of cigarettes, beer and video games, but the point remains: We have fun with the blog and are grateful we've found a small corner of the Internet. We're blessed to connect to so many CdLS families and honored so many folks still care. As Mr. T says, the rest is just jibber-jabber.
And of course, as Mo ruefully notes, I've probably jinxed us for life by proclaiming things to be easy as Sunday morning. As we've learned the hard way, there's a lot worse in life than a lack of material.
Sunday, December 7, 2008
My mother used to tell me we get sick when we can afford it. Forget germs. Forget hand-washing: Colds only strike when we let down our guards and -- uh oh, look out, sneak attack -- those nasty viruses sneak up and bop us in the nose.
I'm still not completely sure what she meant, but I've repeated the homey axiom for years and even believed it in a weird, kizmit-meets-karma kind of way.
Well, we let down our guards. The first snow has fallen and the whole house is sick. Hope has some serious snot and a cough worthy of a pack of Salems. I'm walking around the house with wads of toilet paper stuck up my nose. They cut down on tissues, and Mo thinks it looks sexy. She's feeling a bit better, but was blowing her nose like the Boogie Woogie Bugle Boy from Company C. Lulu is lying around, hound-doggedly, barely interested in Hope's soiled diapers.
Amazingly, this is the first time we've all been sick. Last year, when Hope's health was more precarious, we avoided any ailments. Going by my mother's standards, that's probably because we absolutely, positively couldn't afford to fall ill. Or it could be that we were germ-phobes worthy of Howard Hughes, rarely left the house and insisted or surgical masks and gloves at the first sign of a cold.
We've since slackened, of course, and this episode is a healthy reminder that we need to get back with the program. Thankfully, Hope seems to be in a good mood and only slightly cranky, but we're also aware that she's a 9+ pound 13 monther and our margin for error is slight. She's again getting a monthly Synagis shot, the super-expensive antidote to ward of the RSV infection.
So it's back to hand sanitizer, vigorously sterilizing toys after kids touch them, massive doses of Vitamin C and, for good measure, hot toddies for everyone.
Wednesday, December 3, 2008
Hands down, no question, ask us again and we'll roll our eyes and utter juvenile remarks, Thanksgiving is our favorite holiday. Some of the appeal is the simplicity, aw-shucks goodness of eating good food with loved ones and the lack of pretense about the day.
Much of it is comfort from the Groundhog Day-like sameness of it all, year-in, year-out.
Wake up late. Eat. Look at the circulars. Half-heartedly discussing shopping on Black Friday. Laugh at the nonsense of the prospect. Eat. Turn on the parade. Don't watch it. Eat. Watch the Lions humiliate themselves. Turn it off. Dress. Head to dinner. Sit around. Yum-yum, turkey. Mmmm. Seconds. "Oh no, I shouldn't." OK, thirds. Pie. Coffee. Sit around. Give thanks. Let's play a game. No, honest, we won't argue this year. Keep promise for 10 minutes. Argue. Laugh. Huggy-huggy. Happy happy. "This was the best Thanksgiving ever." Sleep. Wake up. Uh Oh. Everyone is sick.
So it was once again this year, and perfectly so. This time, there was a twist: Hope didn't get sick. (Knock on wood, rub rabbit's foot, toss salt behind shoulder, Beetlejuice, Beetlejuice, Beetlejuice) Everyone else did, at least for a little bit. And we extended Thanksgiving with a long weekend up north, hence the blog break and .... introducing ... snow girl.
We think she dug it.