the hidden gem in this post: "Crisco chic"

Back home again, after a fun-filled weekend away visiting Riley and Shelby (and Jennifer and Scott, too). The girls both came home thrumming with excitement, and Frankie had to take a 4-hour nap today to regain her equilibrium, while Annika mainly lounged about on the sofa negotiating when our next trip might be ("How about if I take one more sleep before we go to Riley and Shelby's house again?"). This trip worked out particularly nicely since Frankie is now old enough to be a truly interactive human being, which meant that we are finally getting out of that awkward 3 kid dynamic that the Riley-Annika-Shelby trio sometimes created. Whenever tensions mounted, we could always just say, "Hey! What's Frankie doing over there?", and Frankie never minded being a walking diversionary tactic. As usual, Annika's favorite game at their house was dress-up, as the girls have an impressive collection of dresses, jewelry, gloves, and wigs. We got to see what Annika would look like with black hair, and I have to say that it is a good look for her. Riley dubbed her "Princess Maria Catia" (pronounced "Kuh-TEE-uh") and they spent quite a bit of time preparing their various appearances at the ball and their weddings and all that royal stuff, but in the end they just ended up dancing with each other to the Grease soundtrack. It's like watching my high school years all over again.

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It seems that everyone I know who has just moved into a new house has already done more decorating than we have. Jennifer and Scott are no exception, with their rooms all painted cool colors and wonderful photo collages framed and hung. And I have already decided that they have to accompany us when we finally replace our furniture. They have this chair that is just wonderful beyond words. It's one of those chairs that feels great in any sitting position that you might care to assume. It's one of those chairs that you can sit in with 3 kids piled on top of you, and somehow you're all 3 comfortable. It's one of those chairs that can keep you sitting and chatting long after you should have gone to bed, until you finally have to say, "I'm so tired that I'm nauseous." I can tell you (and so can Jennifer and Scott) that that is a real conversation stopper. I've got the mad social skills. Jennifer, if she doesn't mind me going on and on here, has created a household environment that ought to be featured on one of those bad-ass boot camp reorganize your home reality shows. Or else maybe a commercial for lidded plastic bins. One of the two, though, for sure. Seriously, every single thing in that house had a bin, a labelled bin, where it belonged. It was a stunning model of organization and efficiency. On Sunday Riley decided that she wanted to put on some lip balm, and she brought me right to the closet and pointed to the exact bin among the 20 or so bins on the shelves where her lip balm was to be found. I was trying to imagine this same scenario playing out in my house with Annika. Anni: Mom, I want to have some lipstick. Me: No, we're going out in public in a bit and you know that you always get a bit carried away... Anni: No, I mean MY lipstick. Me: Oh, that lip balm? Sure... Anni: Where is it, Mom? Me: I don't know. Where did you put it? Anni (trying hard to look like she is thinking, although we both know that she has absolutely no more clue than I do): I think I put it in a very special place. Me: A very special place? Where is that very special place? Anni: It's the most special place... Me: Can you get any more specific? Anni: There is a very special place upstairs. In my play room. Me (picturing the pile of toys on the floor up there, all of which could be concealing the very special place): I have a great idea! Let's get some new lip stuff! (opening tin of Crisco) It's very punk rock. OK, I haven't really smeared Crisco on my daughter's face. Not yet, at least. But I can safely say we need more plastic bins in our lives. With labels.

because I can't finish any of my "real" entries

I have 3 entries that I'm currently working on, and can't seem to finish any of them. I think it's because I'm thinking of them as "essays" on "issues." But someday soon I'll actually get them all worked up. Meanwhile, I think I'll turn on commenting again on this site. My last template didn't allow me to use blogger comments and I was just too lazy to set up Haloscan. Plus, I've been having so much fun commenting on other sites for the first time these past couple of weeks. A long string of 0 comments is rather sad to look at, though, so we'll see if I have the stamina. Speaking of sad...(but obviously not really sad, but just in a kind "huh. OK, then" kind of way.) I was contacted by the American Liver Foundation about a local news crew looking for a child who was a transplant recipient to use for some story they were working on, and they wanted to know if they (ALF) could give them (the news station) our phone number. Of course I said, "yes," (I try to be active in the local organ donor awareness events) and I also gave her the URL of this website. 15 minutes later, someone from the station looked at this site for 1 minute and 30 seconds. And I never heard from them. Hoo, boy! Am I really that scary? Actually, I would kind of like to think that I am a little scary, a little too on-the-edge of things for this small midwestern town, but who am I kidding? I even think twice (or three times) before pecking out any profanity, and I can't even bring on the strong stuff. Anyway, I hope the story did actually get run. I'm always shocked to hear how many people have serious misgivings about being organ donors. Annika's health update: Last week her main immunosuppressant was doubled, and we had labs again this week, which showed that finally her liver enzymes dropped a bit, so I guess that more prograf was what she needed. However, increasing the prograf means increasing the side effects--so she has had a bit of diarrhea and the whole sleeping thing is still difficult for her. Sometimes it completely freaks me out to think about all the drugs we are pumping into her, with all their nasty side effects. Best not to think about it, I suppose. Or better only to think about all the great things these drugs do for her.

my kids are getting too smart for me, part 127

Annika hopes every night that I will forget to turn off the bath water and just let that tub fill on up to the top so she can dive and frolic like a proper dolphin. And every night when I reach out to turn the taps she pleads, "Just a little deeper!" and I let it run for 5 more seconds, just to give her that little bit of satisfaction at having postponed the inevitable for just a moment at least. Tonight she tried a new tack. As I was moving to shut off the water she told me, "You don't have to do that, mommy. This bath tub thing will shut off all by its self when the water is deep enough." She said this in the serious tone of a documentary narrator explaining the life cycle of amoeba, while nodding her head in agreement with herself. And, yes, she really said "bath tub thing." Still, she wasn't upset when I told her that we had disabled the automatic turn-off feature, and then stopped the water with the tub disappointingly only half full. Or half empty, might be her description. And then there's Frankie, only 16 months and already working the system. The main problem between the girls lately is that Frankie's all-out idolatry of Annika has led her to believe that whatever toy is in Annika's hand must be the absolutely most fun toy, ever. This conviction, combined with her general grabbiness, has led to some noisy scenes. So I've instituted the beep rule: whoever has the toy that is wanted by both parties gets to play with it until I say "beeeeep!", indicating time to switch posession. Obviously not an original approach, and one that works better with an actual timer, but, hey, I don't have access to a timer when we're all piled into the shower together with the little ones playing with fascinating plastic crap at my feet. So this morning, both girls wanted the ketchup bottle (no, not an actual ketchup bottle), and I told Frankie she could have it when I beeped. And she looked satisfied at this answer, reached out her hand again, and with her most adorable baby smile, said, "BEEEEEEEEEEEEEP!"

tonight is not the night

The unfinished entry for this journal that I currently have sitting on my desktop will be unfinished for a while. It's not a bad entry as entries go, perhaps a tad heavy on the sarcasm. But today another little one lost her battle with the dreadful liver disease that haunted Annika's first year of life. A transplant came for this little girl, but she was just too sick to make it through the grueling surgery. I didn't know this little girl at all, but followed her progress through her mom's updates on her website, and through our on-line support group. I didn't know her at all, but I knew that feeling her parents had every time they posted that she was getting sicker. I didn't know her at all, but it was plain to see that her parents loved her with all their might and I knew that feeling, too. I didn't know her at all, and now I will never have the chance to. And her parents have gone to a place I know nothing of, either. That place you live when someone you have loved and cared for and fought for so hard is no longer there for you to hold and hug and whisper to in the dark night. So tonight I cannot write about that stuff I was going to write about. That stuff not even worth mentioning right now. All my little complaints are just signs that life is continuing on here, in all its sometimes maddening glory. And I hate that her parents will never have a chance to complain about how hard it is to get a toddler to do _________ (fill in the blank, the possibilities are endless). A few hours after reading the sad news, I was rocking Frankie to sleep and perusing my usual blog reading. On the incredibly popular and highly addictive dooce.com, the entry today found Heather bemoaning her daughter's blood draw, not a regular part of her daughter's life. And there was that part of me shaking my head and saying, "Geez, a lousy blood draw. Is that really so terrible?" And then two seconds later I was kicking myself, and picturing Heather, dooce's author, flipping me off for my judgmental thoughts, as I suspect she would very well do had she been privy to them. If we aren't doing our damnedest to help our children avoid suffering, and hating it with every fiber of our being when we can't keep them from pain, no matter how large or small, well then we just aren't doing our jobs as parents. That's what we do. But still. Today a little one who had to struggle so hard for every single day lost her struggle, and the enormity of that fact dwarfs anything else I might have to say today. Maybe tomorrow, maybe the next day... But tonight is not the night.

Annika taking charge: for good and bad

We had to have another blood draw this week, as the last labs showed that Annika's main immunosuppressant had dropped a bit too low. At the same time, her liver numbers made a sizeable jump (up about 100 from last time). I won't blather on about lab values, but suffice it to say that in most people this would be a signal of some serious goings-on. At this point, it has happened too frequently with Annika to set off any alarms, so we got off with just rechecking labs this week. Annika has been carrying on as her usual self, meaning that she is still engaging in the grand experiment of testing the limits around here, and once the limits have been made clear she is back to being her lovely self again. Case in point: When it came time to us to leave for the lab (the blood draw has to be timed at 12 hours after her last dose of prograf), she began to throw a fit. Well, not really a fit as in the fit she threw during the recent horrendous trip to Chicago, but running away and crossing her arms on her chest petulantly while declaring that no way was she going to get a blood draw kind of fit. I have a new counting technique that I've been using with her, and before I finally convinced her that it was time to cooperate she had lost a) the car-music-choosing privilege and b) the pushing-the-garage-door-opener-button-once-she-is-safely-strapped-in-the-car-seat privilege (and never-ever any other time, lest you were worried about garage door mishaps), but not c) the help-mommy-carry-the-recycling-to-the-giant-recycling-bins-on-the-way-to-the-hospital privilege or d) the splash-in-puddles-in-hospital-parking-lot privilege. Once we were actually en-route, Annika was remarkably cheerful. She had a great time chatting with the women in admitting, who all know her by name and don't mind listening to her blow by blow account of her preschool valentine's day party. (Unable to resist the temptation to explain all detail no matter how boringly banal, where does she get that from?) She was still all sweetness and light when we got to the lab. Although there was only one other woman waiting, we ended up having to wait some time. Since that woman seemed to be actually watching CNN, I turned down Annika's request to change the channel to something featuring animated characters and a kickin' soundtrack. And we waited...Are you sensing that there is about to be some explosion of gigantic proportions? Well, THERE ISN'T! I found a little mini-pot of hot pink playdough in my bag, although I can't for the life of me remember how it got there. When I say mini-pot, I really mean microscopic, so I wasn't quite sure what she was going to be able to make of it. Not to worry. She took out a glob, flattened it a bit, and then stuck it on her thumb. Having done the same for the other thumb, the two thumbs began a friendly conversation, mainly consisting of falling all over each other with compliments on how stunning their "wiggity-wigs" were. By this time, the woman was clearly no longer watching CNN, but instead was caught up in the drama of the two thumbs and their fabulous wiggity-wigs. Annika, noticing her attention and really being a ham at heart, decided to up the ante by continuing her little thumb show while simultaneously twirling around and around. That girl must have bionic inner-ears--she could probably rub her tummy, pat her head, sing the alphabet song backwards, and twirl around without ever losing her balance. So when the lab tech began questioning me about Annika's labs, and then for some reason asked me where Annika's transplant had been done, I think the woman about fell out of her chair. I guess it can be a bit surprising to see Annika looking the picture of radiant health while the lab tech reads off an impressive list of tests and the words "liver" and "transplant" are being bandied about. I'm pretty sure that that scene was in violation of pretty much every medical privacy act, but on the other hand I view it as a sort of indirect organ donor activism to make sure people see what transplants can do for kids like Annika. Anyway, it turns out that the big wait was for the lab tech to call in reinforcements, which I guess is standard procedure for blood draws on kids (to help hold them still). That's one of the problems with going in at an unusual time for her draw--this new tech had no idea that Annika would, of course, be the best patient she had all day, and no brute force would be necessary. I am really pleased to see signs that Annika is beginning to take responsibility for her own care, since she is going to have quite a job to learn as she gets older. When the tech began to use the latex tourniquet, Annika stopped her and said, "No, that one gives me a rash. I need the blue one." What's insane is that the tech wasn't even listening to her, and kept coming at her with the latex tourniquet. So Anni just yelled "Stop!" At which point the tech gave me a puzzled look, like WTF? I'm still not sure why exactly she was so puzzled--Annika was perfectly clear in explaining the situation. But I was forced to add, "She's got a sensitivity to latex." Silly that kids are sometimes just not listened to when it comes to taking care of themselves. So some of the results are back already and again her liver enzymes have jumped by another 100 points each. But since her bilirubin is stable, we're still cool around here.

we're getting edgier all the time around here

Kim Possible has finally been replaced in my car c.d. player, and not a moment too soon. Annika finally has all the words to her favorite songs memorized; I don't even want to think about how many repetitions occurred before she finally got them all down, including the "clearing throat" sounds on the Naked Mole Rap. So who finally succeeded in ousting K.P. and her crime-fighting pals after all these months? The blessed Chrissie Hynde and The Pretenders. Now that's what I'm talking about! Annika has entered her Bizarro World phase of childhood--the one in which she insists that she does not want ("no sir! not me! no way!" is the catch phrase) what we all know she actually does want (going to the park to play, for instance). And the converse, that she does want what we all know she does not want (going upstairs for a time-out, for instance). If this is some sort of ingenious plot designed to drive mommy absolutely bonkers, then it is working like a charm. Joerg and I have simply taken to not questioning her pronouncements, and simply following through on them (not going to the zoo, for instance) hoping that this would call a halt to the whole experiment on her part. Evidently, she feels that she needs a larger sample in order to draw any accurate conclusions. On the up side, you will soon be able to pick me out of any crowd. I'll be the one with ragged patches of hair missing where I have tugged a bit too hard in sheer exasperation. This week I dressed Frankie in her red velvet overalls, so soft I want to cuddle cuddle cuddle with them, even without the cute cuddly baby in them. Alas, they are size 12 months, and way too small for her. Still, I had her wear them all day in one last wistful moment. Sure, there is the wistfulness of seeing my baby growing up, but what I was really getting all teary about was the fact that she would never again be able to wear that ace outfit. The fact of the matter is that I think I actually want to wear my kids clothes. This would be really weird if my kids wore frilly little-kid stuff, but for the most part their fashion statements are much more cutting-edge than mine at this point. Witness Annika's recent Valentine's Day Party get-up: OK, maybe it's still a little weird, but seriously, those tights? Who wouldn't want to wear those?

I jotted down all sorts of reminders to myself this week of things to post about, but I fear that I accidentally put the list in the recycling bin while in the grip of a mad urge to simplify our living environment by reducing the paper flurry that turns our house into a sort of mouse nest writ large. Meanwhile, another of the liver kids I have linked on this page is having difficulties. Natalie received a portion of her mother's liver this past Wednesday, but she has suffered a clot (in the same place that caused Annika to need her second transplant) and has been relisted. If you would like to send well wishes to Natalie and her mom, Becca, click on over there to sign her guestbook.

something new to occupy what little free time I have

I have a new project--a group blog for families of children with chronic illness or any physical/mental disability. I'm looking forward to reading the essays, journal entries, poems, and thoughts of other parents. Writing can just be so wonderfully therapeutic, and I'm hoping to get a good group of writers to contribute on a regular basis. Here's a link to the site (which I'll also add to the side bar): Postcards from Holland Send me an email or pass on the URL if you know someone who might enjoy participating.

Happy Noodle, Mr. Dude!

Ah, the weather was lovely today. Come on, Spring. You know you want to come on over and stay with us for a while. Annika is loving all the mud left as the snow melts into the bare ground. She's just fascinated by the sucking sound of her shoe (usually a very cute pair that I let her wear in a fit of really bad mothering judgment) lifting up out of the muck. Somehow, she's also transferred her new obsession with this consistency into the kitchen. When I ask her what she wants to eat, she'll cock her head and place one finger on her chin thoughtfully. "Hmmmmmmmm. How about something icky-sticky-ooey-gooey?" Of course, it's also true that most foods fitting this bill send preschoolers into sugar-induced flights of noisy craziness. Luckily, peanut butter also does the trick and has some redeeming nutritional value. Yes, she uses her fingers to eat it. We went altogether to the zoo in Peoria today, which also gave us a chance to return the films of Anni's MRI to the hospital there. Glad to have those out of my trunk! After the zoo and a little rest, the girls and I went outside to wander around in the freakishly warm weather. Frankie, just getting used to walking in shoes on a nice even surface, was none too thrilled about trying to walk around in the grass, which was made even more difficult by my lackadaisical approach to lawncare. If the grass weren't all smooshed down by the weight of the recently departed snow, I'm sure it would be pretty near her knees in some places. But, remember, she's still pretty short. Annika saw the window well by the basement window and launched into this monologue: "Mommy, is that the basement window? And do I have to not get too close so I don't fall in? And if I fall in, then I would say Aaaaaaaaahhhhhhhhh! HELP ME! But then I would flap flap flap my arms and then WHOOOOOOOOAAAAA! I would go up up UP so high!" And then she commenced to flap her arms wildly and run around making some sort of sound like a drunk eagle with heartburn (we have very noisy eagles at our local zoo). So I said, "Oh, you're a bird now?" With an eagle's version of "Yes" she flew off to the backyard. As Frankie was not exactly speeding through the grass, it took us five minutes or so to catch up with Anni. When I finally spied her again, she was still flying around enthusiastically, but now shoeless. OK, yes the weather was warmer than it had been for days, but the ground was still freezing. Plus there was the issue of the mud. So I called out a "Freeze!" order (Frankie now obeys that one, too), and came over to put on her shoes again. "But, Mom!" she wailed, "birds don't wear shoes!" Another good argument that she was destined to lose. Glad to see that she's honing those debating skills, though. So when will I get to explaining the title of this post? It's what Annika said to her daddy tonight when he came into the bathroom to help her brush her teeth. I couldn't build much of a story around that particular event, but it was such a funny thing to say I thought it deserved title status.

good news all around

Haley is doing much better. I hope everyone had a chance to visit her page and wish her well. She could use a few words of encouragement now. We had our appointment with the neurologist in Chicago, and he has given Annika a clean bill of neurological health. Concerning her symptoms, he said that some of it could still be lingering delays from her rough first 18 months or perhaps side effects from her meds, and would only be concerned if any of her symptoms worsen. As it is, it seems that she has been getting better lately, although her left foot really does turn in quite a bit sometimes. Perhaps we will consider trying the orthotic approach again this summer to see if that will help her. We are now turning our attention to try to help Annika with some of the fears she is developing about doctors and the hospital. I told Annika a few days before we went to the neurologist that we were going back to Chicago, but just to talk to the doctors. No tests. By the night before we were to leave, she was a mess of nerves and was awake from 1a.m. to 4a.m. A few days before that, she was playing downstairs with her dolls narrating some imaginary life scenario that they were all involved in, when somehow going to the hospital came up, she burst into tears. Concerned, I went and picked her up. She told me, sobbing those sudden tears, that next time she had to go to the "picture room" (CT or MRI suite) that she was going to run away. I told her, trying to be comforting, that I would be there with her and wouldn't leave. This, apparently, was of no comfort as she simply amended her plan to "run away from you AND the picture room." I hate it that she is beginning to fear these things so much. I guess we were lucky to make it for so long with her mainly going along with everything, but I know that it must just screw with these kids' heads that they have strangers doing scary and sometimes painful things to them, while their parents are RIGHT THERE helping to HOLD THEM DOWN. It kills me, because it completely subverts my parental role as protector for her. It's hard to make a kid understand the whole reasoning that we, as parents, make rules to help keep them safe from harm when it seems that we are sometimes bringing them right to the harm itself. And I hate it that it's hard for her to believe me when I tell her that we are not going for any tests, as evidenced by her sleepless night. I've always tried to be very straight with her, so I'm not sure where the suspicion comes from. I guess from being 4 and trying to figure out how the hell all this works. In any case, we have another 3 months to go before another round of CT's, so we have some time to develop a strategy. I've contacted the child life people at Children's for any tips, and hoping for some great advice. Thank goodness that blood draws are no big deal for her anymore, as those come considerably more often.

Frankie, loveable syncophant

I haven't mentioned Frankie much lately, so here's her story. She had her first day of independence when Annika had her MRI. I dropped her off with Joerg, who kept her for much of the time, but he had an important lunch meeting so he had our usual sitter, Maribeth, take her for that time. From what I hear, she did very well, despite needing a nap. I think that she was being fed the whole time, and food goes a long way towards keeping her mood cheery. She did come down with a cold a few days after traipsing about the university, which I only mention for the amazing fact that Annika did not catch it!! Despite sharing cups, food, and rubbing noses with her! Frankie would super-glue herself to Annika if she could just track down a bottle. Everything that Annika does, Frankie's doing it a few nanoseconds later. Annika's main goal throughout the day is to somehow work it out so that she gets Frankie to do something naughty that Anni can sit back and laugh at. Yes, she's using Frankie for her own entertainment, and Frankie is loving it. Frankie firmly believes that Annika has never had a bad idea in her life. Oh, and she's the coolest human being on the face of the planet. But Annika, despite sometimes using Frankie as her own personal entertainment monkey, does truly love her baby sister. She still shares her stuff with her so much better than I would have ever thought possible, and she's often the first person there to help Frankie up when she falls. The best thing that Frankie's been doing lately is chase down Hepburn the cat, and then get down on her hands and knees and try to rub her head and cheek on her. That's, of course, exactly what Hepburn does when she's enjoying a good petting, and Frankie's eager to show her affection in the appropriate cat fashion.