One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Thursday, December 30, 2004

Oh my god. All those people. I simply cannot believe that the number of people believed killed by the earthquake and subsequent tsunami in the Indian Ocean keeps doubling every day. Tonight I heard 120,000 as the new number, and 400,000 as the new estimated final tally. And then the number of people without food, water, shelter, medicine... There's really nothing to be said about our sniffling colds right now, is there? Here and here are easy ways to donate to the relief effort, if you'd like.

Monday, December 27, 2004

Annika, trying to figure it all out

Last night in the bathtub Annika asked me in a very serious tone, "Mommy, where is my life?" "hmmmm. Well, your life is right here with me and daddy and Frankie." "Noooo, mom. My life is right here," and she gestures to the scar that stretches all the way across her midsection in a rainbow arc. "It's in my tummy right next to my heart...Where my Special Powers are." OK, first off: why, oh why, does she ask me questions she already knows the answers to? And, second: huh? I tried a few follow-up questions to try to follow her reasoning, but she was finished with the subject. We've been reading a book about transplants lately, and I always explain that she had a transplant, too, and she got a new liver and it saved her life. Then I always show her her scar. Is that where this came from? Anyway, for the 2 of you out there that might be interested in seeing Anni and Frankie open presents, here you go! This movie is pretty short (and dark and not very well shot, but hey I don't actually have a real videocamera!), but you can at least get an idea.

Sunday, December 26, 2004

O, Tannenbaum

Annika, running into the kitchen with a hanger from the coat closet: "Daddy, this hanger needs to be put away!" Joerg: "Just a minute, Anni, I'm busy." Anni: "OK" Joerg and I promptly forget about the hanger, until we notice the Christmas Tree is just a tad more festive: I started to write this entry last night, but when I came up to use the computer at 9pm, I found Anni still awake in her room. So we snuggled in the rocking chair by the computer and watched Sugarplum Mary and her friends, Shinny and Santa, approximately 100 times until she was finally feeling drowsy. By that time my brain was too numbed to write. We enjoyed our two days of Christmas (Germans celebrate Christmas on the 24th), runny noses, coughs, diarrhea, and all. On the 24th, I reached up to smooth back a stray hair, and found a huge glob of snot on my ear. I ran screaming to the store to buy 10 boxes of tissues. OK, I'm just kidding--about the screaming, I mean. I really did buy 10 boxes of tissues. It takes a lot more than snot to gross me out. A LOT MORE. [Edited to remove graphic content after realizing nobody really wants to hear about that stuff.] Actually, it's only Annika that is hit really hard--Frankie and I are just nasal congestion monsters. It would be completely insane of me to voice even the tiniest complaint, however. We are nearly 1 year past the beginning of our PTLD nightmare with Annika, and the ensuing looooong rejection episode. It's been about 6 months since Anni has had to be hospitalized, and so we couldn't be happier with simply fighting off viral bugs in the comfort of our own home. I finally unpacked all our "hospital bags" yesterday. The hospital bags are these little cotton totes that I keep filled with little bags of markers, crayons, scissors, glue, glitter, foam shapes, beads for necklaces, play-doh, new books, etc. They come in handy when you find yourself suddenly packing for a 2-hour drive up to Chicago for another hospital stay of indefinite length, and you need some quick, portable entertainment for a pre-schooler. I had 4 of these bags ready, with different stuff inside, all stored away in the top of our coat closet. I had moved them to the basement when I decided I needed that space to store Anni's growing collection of games and puzzles, and finally yesterday I decided it was time to give them a permanent home. On the one hand, the fact that it took me so long to unpack them is a sign of how busy we've been these past few months, but on the other hand it's also a sign of how long it takes to feel "safe" after a scary time. Not to feel like you need to be ready to leave for the hospital in 10 minutes time while caring for a vomiting child and a baby. So I finally put all the markers, glue, glitter, and other fun stuff in drawers where Anni can play with them here at home. I hope I haven't jinxed things now by doing this. Yes, there's a hefty amount of superstition involved here. Like our observation that whenever we come to clinic without any suitcases packed, those are always the times that they find something that they need to admit Annika for. She can seem to us just fine all the way up there, but if the trunk of our car is empty, that's when she will spike a fever completely out of the blue as Dr. Alonso examines her. So fill that trunk with at least 3 days of clothes, please, no matter whether it seems warranted or not. The beauty part is this: if we get sent back home again, then we say--"Yup, always gotta keep those bags packed if you want to get back home again!" But, now, if for some reason our Samsonite Good Luck charm doesn't work, and she has to be admitted despite our best packing efforts, well then we're still happy to have those suitcases in the trunk, because who wants a surprise admit on only 1 pair of underwear?? So, back to Christmas and Annika's contribution to the Christmas tree... Actually, the hanger was not her only contribution. She made several actual ornaments, which she proudly hung, too. We call the snowflake, "Mr. Demento Snow Guy" Her handiwork also adorns our fireplace mantel, including the stockings she decorated for herself and Frankie. You'll notice that googly eyes are all the rage in the preschool set. Also note that the Gingerbread boy is missing 2 cheerios where his feet should be. Appropriately enough, Frankie ate them (but we stopped her before she finished him off, obviously). Frankie is always on the hunt for any food source that she might happen upon. Frankie is getting more picky about her food. She's acquired a taste for steak and prime rib (our Christmas dinner), but throws broccoli right back at me when I put it on her plate. On the plus side, she's developing quite an arm. I have to be careful with her, though. If I put something on her plate that she really likes (steak or salmon, for example), she'll simply poke every single bit of it into her mouth at once, like a starving baby wolf. I don't have a picture of her doing this, for safety reasons, but here's a good approximation: After she gets her mouth stuffed, a look somewhere between terror and frustration crosses her face as she realizes her mouth is too full to chew. So then I have to hold out my hand for her to spit it out and try again (after I remove a good portion of it). So now I just cut off a piece designated for her, and then dole out tiny bits to her just a few at a time. As she finishes her 3 or 4 bits, she shoves her empty plate over to me with a little grunt, which is not hard to interpret. Annika has had to call a halt to her experiments for the time being. Two days ago an experiment commenced while Joerg and I were finishing lunch. Joerg: "What are doing in there, Anni?" Anni: "I'm not making a mess, Dad!" (does the girl know how to answer questions or what?) Joerg decided to accept this answer, but several minutes later his parental instincts led him to investigate. At which point he discovers Anni standing in the sink, carefully covering the entire wall mirror in Vaseline Intensive Care lotion. Joerg: "Anni, you are making a mess!" Anni (flustered and more than a bit surprised at this assessment): "Well, uuuuummmmm.... TA-DA!!!" Anyway, Christmas went very well. Both girls love their own toys, and also each other's. All Anni wanted for Christmas was a Baby Annabell, which she got along with a few other books and a new sled. Frankie and Anni both love Frankie's new Little People garage, and Frankie danced Christmas morning to her new Laurie Berkner CD. The girls also each got their own photo album with some of their favorite pictures from the past year. They both especially love the pictures of all of us wearing Anni's Mr. Potato Head glasses (her choice of prize after her dentist's visit). Those are the pictures featured on our Christmas letter. Even Joerg liked that particular photo concept, because, as he observed when he saw his own picture, "Nothing says 'Ph.D' like Mr. Potato Head Glasses." Annika's only disappointment has been the lack of snow to go use her new snow tube. Really, it's too cold for her to go out with her nasty cough. The wind is so cold it hurts to breathe it in right now. Instead of going outside, we decided today to make Anni's favorite muffins. Here's the recipe, in case you're feeling culinary:

Anni's Favorite Banana Chocolate-Chip Cinnamon Nut Muffins

(Adapted from Betty Crocker) 1 cup all-purpose flour 1 cup whole-wheat flour 1 1/2 cups sugar 1/2 teaspoon salt 1 1/2 teaspoons baking powder 3/4 teaspoon baking soda lots of cinnamon 1 cup mashed banana 1/2 cup plain yogurt 1/2 cup shortening 2 eggs 1 teaspoon vanilla 1 cup walnuts 1/2 cup milk-chocolate chips 1/2 cup semi-sweet chips (mini-morsels are the best) In a bowl combine flour, sugar, baking powder, baking soda, and salt. (Anni enjoys levelling the cups, and then pouring in). Add cinnamon. I can't tell you exactly how much cinnamon goes into these muffins, because this is strictly up to Annika. She just shakes the container until it feels right. I will tell you that there is usually an awful lot of cinnamon used. If it starts looking like you've got more cinnamon than flour, then you've gone too far. Mash the banana (Anni gets out the bananas and smashes by herself. Don't worry if it's still pretty lumpy. That's what mixers are for, I say.) Add banana, yogurt, shortening, eggs, and vanilla. (Yes, Anni cracks the eggs herself. I try to remember to have her do it in a separate bowl in case any shell gets in there, but even if I forget the extra bowl and the muffins are a bit eggshell "crunchy" I always just pass it off as extra nuts. I also let Anni measure the vanilla herself, because if a little extra spills in we just call it a "bonus".) Beat with an electric mixer on low speed until combined. Beat on medium speed for 3 minutes. (Anni now gets to handle the hand mixer by herself, with me right there of course. Is there any greater power rush for a 4-yr-old than eating up eggs and shortening with the whirring tines of a Braun mixer? I think not.) Add nuts and chocolate chips. The amounts given above are also approximate, increase or decrease depending upon how nutty/chippy you're feeling. Pour batter into greased muffin cups, or use paper liners, filling 2/3 full. We always use liners because peeling them off is half the fun of eating the muffin, right? Bake in a 350 degree oven for 22-25 minutes, or until nice and brown. Makes about 30 muffins.

Thursday, December 23, 2004

Triple Threat

Anni has pink-eye, some nameless respiratory infection that leaves her hacking like an old lumberjack (do they hack? wood, yes, but anyway...), and, as of this morning, "G.I. involvement" if you know what I mean and I think you do. Some crazy Christmas contagion seems to be sweeping the country, as it appears that fully half the kids on C.L.A.S.S. are somewhere on the Sicky Spectrum. Given how violently ill these kids can get, I'd put Anni somewhere pretty darn close to the healthy end, despite the non-stop drip from most orifices (too much there? probably right). OK, so here's a distraction: a new game called "Guess the Question!" I'll set up a real-life, yes-it-really-happened situation, and you guess what question Anni asked me at that point.
situation #1:
We are taking a walk just for the fun of it around downtown after mailing Christmas packages. Annika spies a half-eaten candy cane jammed into the soil of a potted evergreen outside a store. She points it out, and I am quick to tell her not to touch it.

OK, now you have to guess what question Anni asked at this point. You can email me your guesses, if you are feeling creative (email addy at end of post--my name is a link to my email). Give up?

Anni's query: "Is the plant going to eat it?"


situation #2:
Anni comes downstairs in her PJ's for breakfast. I've just made an appointment for her at the pediatrician, as she's clearly sick. She wants to wear her PJ's to the doctor's office, and I say, "No, you have to wear real clothes to see Dr. Weaver."

OK, guess again.

Anni's query: "Are my pajamas pretend clothes?


situation #3:
OK, that last one was kind of easy. But this one you will never, ever guess. Anni and I are again walking around downtown and we get to a wonderful little coffee house, which still has patio tables and chairs out front!! Mind you, midwestern winters are never mild and it is maybe 20 degrees tops outside (and don't ask why we were walking around voluntarily in that weather). Before I could stop her, Anni clambered up into one of the chairs. I had panicked visions of her sticking to the cold wrought-iron grillwork, but then remembered that she only had approximately 2 square inches of exposed skin and I'm pretty sure that she knows better than to get her tongue anywhere close to any surface that hasn't been disinfected, say 2 or 3 hundred times. So she perches on that chair and strikes a silly little pose that I guess is a 4-year-old's vision of elegant sophistication and asks...

Go for it!

Anni's query: "How much do you suppose the pinky punch costs?"

Wednesday, December 22, 2004

Sick Kid Insomnia

I'm having a little trouble going to sleep, what with Anni's breathing rattling the walls, punctuated by coughs that no kid should be able to sleep through, but she does, and it worries me. So what do I do? Modify my blog, of course. I have a feeling that I went overboard with the font changes, but I'll have to leave a review until I've had more sleep. So far only the archive index is looking funny (works, though), but that appears to be Blogger's fault. I'll have to try to find a workaround later on. Recently I read an update of another child who has also had 2 transplants and now has the same post-transplant complication as Annika (portal vein thrombosis), which just caused a major bleed for him. He's currently on a ventilator in the PICU. I'm worried for him, and worried that this could happen to Annika at any time, too. A bleed could have happened pre-transplant, too, and I knew it, but geez it is frustrating to have this be a threat to her after two transplants, for goodness' sake. Meanwhile, I'm thinking about this poor boy and his family and staying awake when I should be asleep, just to listen to Annika breathe. I'll be adding links to other liver kids pages, too, very soon, with their parents' permission.

Sick sick sick again

From running around with me downtown yesterday to 104 degree fever at 1 a.m. this morning, Annika sure does get sick fast. We took her to the doc this morning, and they did labs on her over at the hospital. With the fever, though, her veins were so shrivelly that they had the hardest time getting blood from her. She was fine until they decided that they would have to finish up with a finger stick. Ouch. So we're waiting to hear back her lab results, but suspecting that this just another common viral thingamajiggy that is hitting her hard, thanks to her immunosuppression. She felt good enough, though, to sing along to her Kim Possible CD in the car ("I'm your basic average girl, and I'm here to save the world. You can't stop me 'cause I'm Kim-Pos-si-ble") in her hoarse little voice. It's either heartbreaking or inspiring, depending on your mood, I guess.

Tuesday, December 21, 2004

Braking for squirrels, in the Holiday spirit

There's lots of Christmas cheer around these parts. Wow that sounded HOKEY! It's true, though. Joerg called me the Christmas Elf last night as I sewed and wrapped and packaged, and I admit I kind of liked it. But Annika is the real Christmas Elf. The girl is gung-ho for Christmas, or her birthday. She keeps getting the two confused. She knows it's good stuff, though. She's had a grand old time picking out gifts for classmates and cousins, and an even grander time helping to wrap them (ribbon! bows! tape! YES, TAPE!). Today we had the Christmas party at her preschool, including a gift exchange. And even though she liked the present she brought (a baby Belle doll) much better than the present she received (a surfer Barbie who smells strangely like a candle), she was still completely gracious. And she liked the Barbie much better once she got her naked and into some real water. Annika has lately been conducting "experiments" in the bathroom. These mainly consist of rubbing different objects around the house with a mixture of lotion, hand sanitizer, and soap. And then dunking them in water and also doing something with toilet paper. I don't know exactly, as she requires complete privacy in order to concentrate properly on the work at hand. Well, I do make her leave the bathroom door open. I value my plumbing too much to let her scientific bent go completely unsupervised. Frankie also shows a budding curiosity for the world around her. Tonight while nursing she popped off the breast and stared at it cross-eyed so intently for such a long time--"Why, hello there! 14 months of nutrition and comfort and I don't believe we've ever been properly introduced." Of course, I had to go and laugh at her sudden contemplation of my boob, and so of course now she keeps doing it for laughs, which is not exactly great, as a baby with a mouth full of teeth just suddenly popping off from complete latch-on position is not exactly comfortable. I wonder if this is the beginning of the end of nursing for her, as she finally stops taking the breast for granted, and somehow it hits her that they are part of me rather than somehow just there for her. Or am I reading too much into this? Oooo, it's so tempting to try to analyze baby-think. They're such strange little unknowable creatures. And then there's Hepburn, the old lady of the house. Have I mentioned that Anni calls her "The Old Lady" now, too? What a hoot. Lately that cat has been a total affection, love-me love-me machine. It's taken a while for Hepburn to pay any attention to me since we all returned from the hospital. Really, I lived with Anni away from home in the hospital for nearly a year, and Joerg was gone for a lot of that time, too. Thank goodness we adopted the second cat, Red, just before moving or Hepburn might have gone batty from loneliness. It looks like she has finally forgiven me for that long absence, and also there's the matter of bringing small children into her home. It's clear that she has accepted the kids with all their noise and sudden movements. Even Frankie gets to pet her, with me admonishing "Gentle, gentle" the whole time. Which one am I talking to? Not always entirely clear. But Hepburn purrs at Frankie's touch, and doesn't bring out her claws for her warning bats when Frankie finds her tail a bit too interesting. Recently, Frankie was playing with one of Annika's Magic Wands, waving it around in the air. Which was when Hepburn spotted it and pounced like the good hunter she used to be. As the wand smashed to the ground, with Frankie's hand still attached to the other end, Frankie freaked. But then Hepburn bounded back up again with her back arched and hair standing on end, just like a halloween cat silhouette, and that turned the situation right around for the baby, who decided to play a bit more. Then Annika said, "But does Frankie have to be careful? Because Hepburn has sharp claws?" And that's also classic Annika lately, who seems to feel that all her observations about the world, even the ones she knows to be absolutely true (from experience in this case), should be phrased in the form of a question. Yes, it's like living with a little junior Jeapardy contestant. "Mom, is it cold outside and do I have to wear my coat and my hat and boots in case it snows or rains? Are we going to the store to ride in a cart but only a cart that has one seat for Frankie and not for me because I have to walk? Are we going to the store to buy food to eat? And will there be lots of cars in the parking lot so I have to be careful and always hold your hand? Did you slow the car so you would not drive over a squirrel? Is that squirrel silly for walking in the road right in front of our car?") I am working on a revamp of the site, and once we get Christmas taken care of, I should be able to actually get it done--new spiffier design, links, and other fun stuff. Well, fun for me anyway.

Friday, December 17, 2004

More on Her Precocious Coolness

Tonight I tried to feed Frankie some baby food for dinner. Every time the spoon approached her, she jerked away with a little "uunnnhh!" of protest. I thought maybe it was just the usual "get away from me with that smooshed Gerber crap" attitude, but this time she kept pointing at Annika sitting next to her. So I said, "Frankie, do you want Anni to feed you?" Big nod, yes. So I gave the spoon to Anni, and lo and behold that baby emptied the jar. I'm not sure what to make of this. Hallelujah that they have a wonderful relationship this early, but what the heck?? Today we had two parties to go to--Anni's preschool open house, and then this evening a colleague of Joerg's from the university was having a housewarming party whose invitations bravely proclaimed, "Kids welcome." Just before we were supposed to leave for the adult function, I ran upstairs to get Frankie up from her nap, leaving Anni alone in the basement. When I returned 3 minutes later, Anni had once again covered herself in one of her famous ink designs. So we were off to the party with our little junior Maori warrior. When Anni was just a baby a friend of ours from the university had a running joke that involved discussing Anni's future tattoos. Are babies really that impressionable? How could she have understood? I hope she realizes that she's going to have to do some serious preventive antibiotics if she really wants to get some crazy body art. Actually, I don't even think her docs would approve it anyhow. Holy smokes, I am so freaked about her teen years and my imagination has another 9 years to run wild before she even gets there.

Thursday, December 16, 2004

Annika's coolness is fast outstripping her mommy's. For one thing, she doesn't say things like "outstripping." What she has decided to say, though, is "Mom, I'm not loving it." As in, I want something else. Her fave Kim Possible soundtrack CD has only a select few favored tracks, but does she simply say, "Mom, would you skip this song?" No. She says, "Mom, I'm not loving this song." I can just sooo hear her saying this while striking a fashionably nonchalant pose in some ultra-hip New York venue. Well, except for not the "Mom" part. Another example of her new verbal sophistication: today as we were driving home, I turned down flat her suggestion that we go to McDonald's for lunch. Her response? "Mom, you are totally ruining my special holiday mood!" And can there be any more useful place to try out all these great new turns of phrase than the toy store? "But, Mom, Baby Annabell wants me to buy her. Yes, look, she's stuck in that box. She's saying, 'Take me home and rescue me!' She really needs my help, Mom." But you have to be sure that when you read that last bit that you read it to yourself in a completely sincere, concerned tone of voice and you also have to picture Anni's big blue eyes gazing up at yours with a look that says she is seriously worried about Baby Annabell's welfare. Geez, no wonder I don't take her to toy stores so often anymore. How am I supposed to contend with that? But back to that whole coolness issue... Today while reading on Dooce.com, I came across a link to a site that translates any web page into Snoop Doggy Dog (Dogg?) speak. So of course I Snooped my own blog, with this result (from my Dec. 14 entry): And then there are times when they are just downright frightening, know what I'm sayin'? Like this afternoon when Anni 'n I wuz pretending has conversations on her play phone wit Grandma, her cousins, Riley 'n Shelby, 'n her cuz, Poleena, know what I'm sayin'? Frankie knows izzall 'bout phones, as I has given her da receiver a few times let her talk Grandma, know what I'm sayin'? Yes, Grandma 'n Grandpa are bomb diggity--they put up wit holding "conversations" wit da enchanting heavy-breather that is my youngest daughter n' shit. Anyway, Frankie became determined get hold of izzle play phone 'n join in da game, know what I'm sayin'? She yanked da phone from my ear, jammed that shiznit her own ear 'n began demanding in her sweet snuggly neanderthal fashion, " 'lo, know what I'm sayin'? ..'lo, know what I'm sayin'? ..'LO." ..'LO" At which point brizzle became quite disturbed at da phone's stubborn refusal respond, 'n began banging da hell out of that shiznit on da floor! Annika, always happy encourage destructive tendencies, laughed so hard brizzle nearly fell over, which prompted Frankie's instantaneous mood shift from frustrated raging baby bull gleeful jokester ("oh this is funny? well there's mo' where this came from, believe me!"), 'n da phone wuz not destroyed." Even after being put through Snoop's Shizzolator, my blog still sounds like it's written by a booooring midwestern white chick. I mean, come on, "enchanting"? "neanderthal"? "quite disturbed"? "gleeful jokester"? Even Snoop cannot transform that stuff into anything remotely cool. Fo' shizzle. (See? I just can't pull it off!)

Wednesday, December 15, 2004

Oh, how I love my kids

Tonight as I was laying Franking down for bed she reached out her arms for her little stuffed octopus (actually, it's Anni's, but Frankie loves it so much more and Anni doesn't mind sharing). I gave it to her and she hugged it up tight against her neck. I thought that was it, but no. She again protested ("uuuuuuhhhhhh!") and reached out for her teddy bear (same story as the octopus). Yes, she had to have 2 stuffed animals snuggled tight to her before she would lay down. And several others arrayed around her, at the ready for any necessary midnight noodling. And then she lay there in sweet bliss making her little contented "mmmmm, mmmmm" sounds as I rubbed her back to the sound of Enya, her beloved night-time music. And Annika was just the sweetest kid today. We went over to a friend's house, and she has a 2-yr-old girl, Lia. Annika played so gently with little Lia, following her lead in all her little 2-yr-old games. It helps that Lia does not mind Anni's constant show of affection, the dreaded head pat, which drives some babies insane. I was just so proud of her ability to enjoy playing with someone at a completely different stage of development, not to mention that it gave me some precious time to have some adult chat during the day. Annika also plays fairly frequently with a girl 2 years her senior, our neighbor Sabrina. It can be hard for Sabrina sometimes, as Anni doesn't always play by the rigid rulebook established by 6-yr-old girls, but all in all she does a great job, and Anni has matured quite a bit just being around Sabrina's example. Occasionally, though, Sabrina will ignore Annika or otherwise hurt her feelings while playing--again another lesson to be learned for Anni, but one parents always hate to witness. Yes, we all know how cruel kids can be and no need to belabor the point. But then there are times when you are just shocked to see how caring kids are for each other. The other day when the girls were playing downstairs in the basement, Annika had one of her huge leg cramps. She gets these sometimes, probably from an electrolyte imbalance (from her liver problems? from her medicines? who knows?), and they are so terribly painful for her. She kind of fell over and started crying her huge tears. I picked her up and put her on the sofa, and Sabrina dropped her play-doh project right away and came and threw her arms around Anni, with tears of her own in her eyes. Sabrina stayed there with her until the cramp went away and Anni could come back and play. Now it may not sound like such a big deal for Sabrina to have left her play-doh project to come to Anni's aid, but it really was because Frankie was at the play-doh table, too, and that Frankie baby can destroy any and all play-doh masterpieces in approximately 2 seconds. So you really have to guard your stuff well around her. When Anni was feeling better, they both came back to the table and repaired the Frankie damage, without even one complaint at having to start over.

Tuesday, December 14, 2004

'lo...'lo...'LO

Babies are so darned cute. Like when Joerg came home from work today and Frankie just could not stop saying, "Daaah-Deeeee, Daaaaaah-Deeeeeee, Daaaaaaaaaaah-Deeeeee." And when Joerg turned around and replied, "Fraaaaan-keeeee, Fraaaaaan-keeeeeeee, Fraaaaaaaan-keeeeeeeeee," I swear that girl nearly dislocated a cheek bone in her all-out delighted smile, followed of course by her take-your-heart-captive-right-now giggle. And then there are times when they are just downright frightening. Like this afternoon when Anni and I were pretending to have conversations on her play phone with Grandma, her cousins, Riley and Shelby, and her friend, Poleena. Frankie knows all about phones, as I have given her the receiver a few times to let her talk to Grandma. Yes, Grandma and Grandpa are great--they put up with holding "conversations" with the enchanting heavy-breather that is my youngest daughter. Anyway, Frankie became determined to get hold of our play phone and join in the game. She yanked the phone from my ear, jammed it to her own ear and began demanding in her sweet snuggly neanderthal fashion, " 'lo...'lo...'LO...'LO" At which point she became quite disturbed at the phone's stubborn refusal to respond, and began banging the hell out of it on the floor! Annika, always happy to encourage destructive tendencies, laughed so hard she nearly fell over, which prompted Frankie's instantaneous mood shift from frustrated raging baby bull to gleeful jokester ("oh this is funny? well there's more where this came from, believe me!"), and the phone was not destroyed.

Monday, December 13, 2004

First steps!

Frankie took 3 steps today. Oh, the look on her face as she Frankensteined her way to me. The flap-flap-flap of her little feet at the end of those stiff little fat legs. She knew it was a big moment--I could tell by that look of joy she gave us. She does know how to choose her moments: her first steps were taken when she had the whole family gathered in the living room to witness the occasion.

Friday, December 10, 2004

Lovey-dovey Frankie baby

Frankie loves to give kisses! Unfortunately, she hasn't yet learned the difference between kissing and great-big-open-mouth-slobbery eating. She gets this dopey, happy look on her face, and then leans in with her mouth all open and drooly, pressing wetly right into your cheek. And that's her kiss. Little love-bug that she is, she adores stuffed animals right now. She hugs them right into her neck and rocks them back and forth with her usual baby-intense love.

Thinking, again

As I mentioned previously, I have begun reading blogs of other moms--mostly moms of healthy kids. I haven't found too many blogs of moms with kids with major health issues. Perhaps that's because having one of those kids takes an enormous amount of time, money, and mental energy. When Anni was at her sickest, I just couldn't bring myself to write about the experience. It was just too horrible and living it was really hard enough without trying to write it down so that I could remember exactly how horrible it was for the rest of my life. Now that Anni's health no longer seems so perilous, I guess I am allowing myself this self-indulgence of reflecting on the whole experience. Self-indulgence might be the key phrase here, so brace yourself. A while ago, several of the moms wrote about an Oprah episode that featured a baby getting a liver transplant. Mostly the comments were of the "OMG! I cried and cried and then hugged my child!" nature. It was so strange to read about other moms reacting to this story, which of course parallels the story that we around here call "Life." Just a strange feeling--the wall between our family and "normal life" is still there, even though I feel like it shouldn't be anymore. For example, I can't meet a new person without telling them about Anni's transplants within the first 5 minutes. It's really not a good icebreaker, let me tell you. Somehow, I feel like my reactions are somehow "off." A few weeks ago Joerg and I were watching "The Day after Tomorrow"--that movie where New York and LA are destroyed by really bad weather. We had the baby monitor in Anni's room turned up pretty loud, though, as she had been complaining about her tummy hurting again. So we were trying to watch this movie, while simultaneously listening to every moan Anni made with concern. Ever since we found out that Annika has pretty bad varices in her esophagus, I have nightmares that she's going to have a major bleed in the night and we won't know it. The movie was just not working for us--there we were watching New York freezing over, but it was just so hard to worry about little Jake Gyllenhaal and his friends while experiencing the much more pressing worry about whether Anni's tummy pains were a sign of some serious problem. OK, so that was just a movie, but there was something similar going on during the real-life disaster of 9-11. We were hospitalized in Omaha at the time. We had been trying to get there for weeks to have her listed in Nebraska, too, but she was always too sick to leave the hospital in Chicago. Finally, they decided just to send her in an ambulance to Nebraska. We had gotten there and gone through all the tests to get her listed, but she had suffered some problems during one of the tests and seemed even worse off than when we left Chicago. It was around that time that it hit me that she was dying, really and truly. A transplant seemed so unlikely, as she had just not accumulated enough time on the list before she got so sick (the list has changed now so that sicker people have priority rather than just those with longest wait time). That morning the nurse told me that a plane had flown into a building, and so I turned on the TV to the news, just like everyone else. The doctors were making their rounds in our room when the first tower fell. We were all stunned and then I remember saying, "They surely had everyone out, though, before it fell." But even when I found out that they had not gotten everyone out, even when all the terrible details came out, it was still hard to break out of our own all-consuming disaster in front of us. Especially as the grounding of planes meant that many transplants were halted, since the organs couldn't get transported, which only made our situation worse. I'm not saying that I didn't feel sorrow for all those lives lost so swiftly in such an aggressively hostile fashion, but it was hard to feel the shock quite as deeply as it seemed everyone else did. Maybe we were just already full-up on our own personal shock meter, I don't know. I haven't talked to a lot of people that were in the midst of their own personal crises at the time of 9-11. I wonder if their feelings are the same as mine. Of course, the fact that our personal crisis had a happy ending, bringing our daughter home after 2 transplants and 10 months in the hospital, has meant that normal feeling is returning. Now reading accounts of that day has the emotional impact for me that was somehow lacking on the day itself, perversely. And for those whose crisis kept along its calamitous route? With no amazing gift of a last-minute donor? It's hard to think about.

Wednesday, December 08, 2004

another fine vocal performance

Annika's favorite Christmas songs right now are "Jingle Bells" and "Silent Night." She's still working on learning the words to "Silent Night," but here she is belting out "Jingle Bells" for your listening pleasure. OK, so in the excitement of performing into the telephone, she blanked out on the words a bit--happens to the best of us. The part where her voice gets all distorted like a good little indie rocker is where she decided to smash her mouth right up into the mouthpiece and do a little dance while singing. Clearly, she has seen too many of those videos on Disney channel. Click on the player below to listen in.
this is an audio post - click to play

Tuesday, December 07, 2004

Christmas stuff

Last week Anni went with her preschool class to go see Santa at the mall. I was kind of curious to see how she would respond, as we haven't really talked about Santa with her. Bad parents??? Maybe so. I just can't quite work out a way to sit down and say, "OK, here's what happens on Christmas. Listen up, kid, because this is the way it is." And then launch into this great exposition of all the Santa stuff. It seems to me so hard to figure out how the world works anyway, and then we go tossing out this stuff and pretending like it's real. Isn't a huge amount of growing up figuring out what's real and true, and what is not? Aren't we just complicating the issue?
OK, so I just watched Sex and the City, which always has Carrie tossing out those "big questions" that shape the episode. So that's probably where that just came from ("Isn't a huge amount of growing up figuring out what's real and true, and what is not?" I can even hear Sarah Jessica Parker saying this in a voiceover as it magically appears on her laptop screen in closeup. Geez Louise.)
Back to Anni's trip to Santa. And an excuse to post some photos of Anni walking through the Christmas Consumer wonderland that is the American mall: It took Annika several trys before she worked up the courage to actually sit on Santa's lap and discuss her Christmas wishes. She's set on a Baby Annabelle, because the 5 million dolls she already has are lonely, although somehow when she came off his lap she was asking about getting a horse. Thanks, Santa. I did try to put Frankie in his lap with Annika, but Frankie was having none of that. Just leaning down with her close to the Friendly Red Freak sent her into massive hysterics. This may have contributed to Anni's lack of enthusiasm, I guess. Frankie's just a baby, but obviously she was picking up some bad vibes from this guy. After the visit with Santa, the kids headed over to the food court for a cookie break. Anni somehow managed to negotiate 2 1/2 cookies for herself ("Look, mommy, Frankie wants to share her cookie with me!") The real story of the day, though, was the super baby bonanza that sent Anni into ecstasy--her own special mix of nurturing feelings combined with amused fascination at little beings who enjoy the feeling of rubbing cookies on their heads. There were 3 babies in strollers parked right beside Anni's table. Here she is playing with Kiley, her friend Jillian's baby sister. Frankie is luckily still not old enough, or else just too good-tempered, for jealousy. She did keep a close eye on Kiley's game with Anni, though. Jillian and Anni also had a good time hanging out at the mall, engaging in their usual hug and spin maneuver. Which usually ends with Anni on the floor giggling. Note that it looks like she is wearing some kind of 1920's-inspired dress here--fitted all the way down her thighs and then flaring out. Nope. Her skirt was actually falling down all day long, but she was wearing a leotard underneath so no biggie. The problem mainly is that she has a rather large belly as her liver and spleen are both still pretty huge, and she may have some fluid accumulating, too. And then she's got some (whispering) gas issues. So in order to find something that fits her belly I have to go up several sizes. Anyway. (On a tangent, some other liver moms and I have discussed the fact that most of those silly princess costumes are just impossible for our little liver girls to wear--no give around the waist. Niche business? Costumes for the little princess with liver problems or other major abdominal surgery experience?) The girls did their little happy dance all the way back to the car.
In our new efforts to introduce Anni to the German language and culture, we celebrated Nikolaus with her yesterday. On Sunday night, she left her shoe outside her bedroom door and the next morning we put a gift into it for her to find. I seem to remember that there was some business about the shoe needing to be super-clean in order to get a gift, but maybe I am just imposing my own German stereotypes here onto the holiday. I also seem to remember that the German version of Santa is not just content to leave a lump of coal in the stocking of the bad kiddies, but also carries a bundle of sticks to apply some brisk corporal punishment to the naughty. Holy smokes. Any German readers, feel free to enlighten me. Anyway, she got a new camera, which she tracked Hepburn with relentlessly for the rest of the morning. Actually, clean shoes are a bit of a sore spot with Annika lately. We went to the new children's museum here in town, and she loved it. Its new location is in downtown Normal, which means that after a few hours of playing with the kids we can walk down to the little coffee shop and grab a nice cup of coffee and a scone. Which we did, of course. We got back to the car, and I asked Anni to get into her car seat while I loaded in Frankie. Instead, she decided to go explore the melting snow over by the sidewalk, which was melting into a gigantic mud puddle. Seeing this, I yelled, "Anni get out of the mud!" At which point I noticed the panicky look on her face as she called back, "I can't! Mommy, I'm stuck!" Sure enough, she had sunk in the mud nearly up to her knees. After I pulled her out (with accompanying huge sucking sound), I freaked out when I saw the state of her cool suede boots. I have to confess that perhaps I love her shoes just a bit too much. They are just so darn cute, though. In medical news, our ped has decided that Anni needs to see a pediatric neurologist. If you remember, he had noticed that Anni's reflexes were off a bit. Evidently, the physical therapist did not find any heel cord tightness that could account for this, and so he wants a neurologist to check her out. It's a bit scary to think that perhaps there was some sort of brain damage, perhaps from the high ammonia levels she experienced while waiting for transplant, but her physical therapist pointed out that "lots of us are not neurologically perfect without any functional difficulties whatsoever." I had to quote her here because I love the euphemistic sound of that phrase, "lots of us are not neurologically perfect..." Frankie, at the tender age of 1, seems to have caught on to the fine art of stalling. Tonight I told her that nursing time was over and it was sleepy time, my cue to her that I am taking her to her crib. She shook her head adamantly, pointed to her butt and said, "Poo poo!" Her diaper was perfectly clean, so I thought that maybe she meant that she needed to make a poop. She has actually pooped on the potty a couple of times, which she thinks is super-cool. So I took her in and sat her down, thinking about how perfect it would be if she would decide to just go on ahead and potty train at a ridiculously young age. I could just see myself explaining loftily at playgroup, "Yes, my child still doesn't walk (she's really a snuggle bunny), but she uses the toilet just fine. Oh, yes, it's wonderful..." Of course, no poop came, although she had a great time pointing out all her favorite bath toys. So she played me. Totally.

Things I want to remember forever and ever and ever

...the feeling of holding a warm baby, who snuffles her nose into your neck as she makes those happy little mmmmmm, mmmmmmm, mmmmmmmm baby purrings.

Friday, December 03, 2004

And we all heave a sigh of relief

I gave my last lecture this week in my class. I still have a project to grade, and a final to write and give, but it's over for the most part. And not a moment too soon. Let me tell you I have not had enough sleep at all this semester, and I worship sleep. In my class I post my lecture notes on the class website, and accompany them with lots of examples. So when we recently covered JavaScript forms, I created a forms exercise page called formsex.html. Then, of course, I read the title aloud to the class, "OK, that says form sex. Not the topic, really. Remember this is a class that qualifies for formal reasoning, after all." As I said, Not A Moment Too Soon. What will those students have to say on their evaluations? I would be waiting with bated breath, but I'm still giggling over the whole formsex thing. I just wish it had happened while we were covering variables (variablesex snort!). Well, really it makes any topic we covered much more interesting sounding.

Anni, the pill popper

We did talk to our transplant coordinator about Anni's tummy troubles, and again no clear answer. Is there something going on there? Or is it just the fact that she's taking 13 different pills 5 times a day? The weird world of the highly medicated: you take pills with unfortunate side effects, and then have to take other pills to counteract those side effects, and so on. So, of course, the suggestion is to add another pill to the daily schedule--really just doubling of a current med. She does seem to be feeling better, though. She'll be going in for a CT, endoscopy, and liver biopsy the first week of January, so we'll know better the state of things then. Or not. Speaking of more med's: Shelby's back home, and not loving her new IV antibiotic ritual, or the fact that she now has a plastic tube inserted above her elbow, running up to her heart, and sutured into her arm. And she's still not feeling that great. Annika wants to go visit again soon, so that she can check out Shelby's PICC line. She's seen other kids with them before in the hospital, but never anyone that she knows. So she's been excited about looking at pictures of herself with her own PICC line from last year, and then gets this dreamy look on her face. Is she imagining what Shelby's PICC looks like? Is she imagining herself getting to wrap the PICC up in an Ace wrap for Shelby (always her favorite part, after the coolness of watching blood come through the line for her blood draws)? What???

Thursday, December 02, 2004

Life pre-transplant

Last weekend was our much anticipated trip to go see Shelby, Riley, Jennifer, and Scott (a 2-hour drive). We got there to discover that Shelby was going to the ER to have her sudden fever checked out. A call from Jennifer a few hours later let us know that Shelby was being admitted for suspected cholangitis (an infection of the liver). And that's life pre-transplant. One minute things are going fine, and 2 hours later you're in the hospital watching your child get an IV. It really messes with your head, the whole never being able to truly relax. It turns out that Shelby's liver has been doing really much better than I think anyone expected--she's made it to 2 staying relatively healthy without a transplant, despite the fact that her liver and spleen are huge with the ongoing damage to her liver. On the other hand, her liver problems have caused her to develop osteoporosis, and I can feel Jen's stress everytime she watches Shelby run to a playground. So Shelby's going home on some hard-core IV antibiotics, and we're all hoping that the cholangitis goes away and doesn't damage her already beleaguered liver. Riley and Annika still had a great time playing together, although Anni kept asking me where Shelby was, despite the fact that she knew the answer. I always answered matter-of-factly that Shelby was sick and needed to go to the hospital to get better because, you know, saying something like this to Anni doesn't freak her out. It's the life she's always known. I forgot, however, that this is all still relatively new to Riley, and that this news might be hard for her to understand. This fact hit me when Jen asked me on the phone (she called from the hospital) whether or not Scott had explained the situation to Riley yet, and I had to admit that I had told Anni over lunch in front of Riley. Sorry, Jennifer... Perhaps Riley seeing Anni's calm reaction to the news helped her to be calm, too. I hope, anyway.