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.

Monday, January 31, 2005

a rough time

The inspiring Haley (see link to her page on right, and also the link to her singing her self-written song, "The Dirty Rotten Liver Blues") has suffered a massive brain bleed. All of us liver families are hurting for her so much right now. If you'd like, you can sign her guestbook to leave her a message of encouragement for her and her family. Her page also has an address to send her a card.

withdrawal symptoms

Annika suffers from Grandma Withdrawal every time my mom goes home after a visit. To say that Annika loves and adores her Grandma and Grandpa B. is to understate the case. My mom is a retired grade-school teacher, and it seems reasonable that all those years as a teacher have made her especially attuned to the world of little ones. Annika loves how her Grandma really listens to her, and happily joins in whatever made-up game is currently running through her little brain, even suggesting enhancements that make Anni wiggle with pleasure. But then every time my parents leave, a little black cloud descends over Annika for several days. It took me quite a while to identify the cause of her foul moods, until I noticed that they occur with unfailing regularity after a grandparents' visit. Now, this is not to say that my mom spoils her. Not at all (well, maybe she does a bit, but that's what grandparents are for). She misses that attention, though. It's more than one person can give, day in and day out. So we'll just wait for her next Grandma fix. It will be great for her to finally get to hang out with her grandparents on the other side of the family. Annika is so excited about our upcoming trip to Germany that I had to get her a calendar to mark off the days until we leave. Meanwhile, I am suffering from my own withdrawal. Over the past couple of weeks, I rediscovered the magic of caffeine. How a steady supply throughout the day seems to easily make up for a complete sleep deficit. Since I am still breastfeeding, I started slow. Just one cup of tea in the morning. Then I added one in the afternoon. Then I brewed an entire pot of coffee (but half decaf to soften the blow) that I managed to finish off single-handedly throughout the day. Suddenly, Mysteriously, Unexpectedly...Frankie began to become a total grouch. Hungry? A little scream-fest until the food appears. Tired? A big scream-fest until (and a few minutes after) she's in her crib. Sister taking your toys? A gigantic scream-fest accompanied by throwing yourself on the floor dramatically. I told Joerg, "Wow, it's really difficult during the day when Frankie's a grump. I was so used to her being such an easy-going baby." Joerg took one look at the coffee mug in my hand, and raised his eyebrows. "Hey, you think that caffeine has anything to do with it?" I protested, of course. She's barely nursing anymore--maybe 4 times a day. But a few more days of baby-induced headache convinced me that cutting out the caffeine again was worth a try. One day of looking longingly at the coffee pot, and an afternoon of where's-the-caffeine-headache, and my sweet baby returned to me. I can't decide if this means that it's time to wean her so I can return to my habit, or to be happy that she is forcing me to live a healthier lifestyle.

Saturday, January 29, 2005

Lots has been happening here, but rather than write about all the interesting stuff in the present, I decided to update Annika's transplant story. The old story was rather short on details and long on unexplained medical terminology. So I've rewritten the whole darn thing. However, I've not yet really proofread it, so it may still change. Meanwhile, the link on the right-hand side now takes you to the new write-up.

Saturday, January 22, 2005

Of course she’s listening, too.

A few days ago, I wrote about how useful it can be to listen to Annika’s constant voice-over for her own life. But, obviously, it’s also important to keep in mind how carefully she is listening to us, too. We are in the waiting room getting ready for Annika to go breathe in the gas to put her out before the MRI. Anni, understandably, is a bit nervous, and shuns all attempts by the friendly nurse to win her confidence, although Anni is certainly not being rude. The nurse gives up and we’re down to business with all the intake questions (“Has she had seizures? Any brain surgery? Any bits of metal removed from her eye?”) Most of these questions should be easily answered (“Brain surgery? Hmmm, let me think a minute. Just want to make sure I’m not forgetting anything… NOT.”), but somehow they just add up and add up and suddenly you start to doubt yourself. Here you are about to send your child off to be put under (a thought which makes me even more nervous after reading that New Yorker article that I still haven’t written about) and suddenly it occurs to you that if you forget about anything that you should be mentioning, that maybe bits of metal will come flying out of your child’s eyes. Eek. So it was that when we come to the question about any stents or shunts being placed in your child, I had to stop and think about it. Really. (But keep in mind that I had gotten up at 4 a.m. and had not eaten since then so as not to eat in front of a starving 4-yr-old. So don’t judge me too harshly). Unfortunately, rather than just thinking to myself, I had to go through my chain of thoughts out loud. I guess so that the nurse would know that there was actually some thought process being put into that question, rather than presenting her with just dumb silence. Anyway, I started talking about bile drains, but, no, those were removed after the second transplant, and then I thought of the portal vein thing, which may need shunting at some time, but then that reminded me that her portal vein had been clotted off before her first transplant, too, and thus already needed one repair. Was that a shunt? No, some vessels from the donor had been used, so that was OK. My final assessment? “No, just grafts were used.” Meanwhile, Anni had been over by the lockers, nudging a toy on the floor with her toe. It hadn’t occurred to me that she had been listening hungrily, with the natural curiosity of a child to know how she had come to be and all that had happened to her. Once the nurse took a break to place i.d. stickers on the forms, Anni crawled up into my lap and put her hands on her belly. With obvious concern she asked, “Mommy, I have giraffes in my tummy?” Perhaps you are quicker than me, and have already caught what in the world she was talking about. Sleep-deprived and starving me took quite a bit longer to figure out that it was my talk of “graft” that she was trying to figure out. I’m not even sure why I used that term, medical talk for an organ or tissue used in a transplant, except that somehow the whole medical environment brings out this sudden urge to use all my newly-learned lingo. But it was the first time she had heard that term used in connection with her transplant, and of course misunderstood. So much for a little one to try to grasp. At least once a week I realize how very weird this life must be for a 4-yr-old. Annika just started a new gymnastics class this week, and part of her getting to know her new teacher involves showing off all her owies. She had one doozy of a bruise from the IV she got for her endoscopy, which she couldn’t wait to explain to her new teacher. Her teacher’s response to hearing her bruise was from an IV? “Ouch. Those hurt a lot, don’t they?” Aaaaaarrrrrrrgggggggghhhhhhh!!!!!!!!!!! I don’t think I can put enough exclamation points up there to really convey my sense of “Oh, crappity crap, please don’t say that to her.” IV’s and blood draws are, at present, one thing that she does not fear, thanks to generous use of numbing cream. In fact, she is now so comfortable with needles that we don’t even have to use the numbing cream for regular blood draws. But now Anni, impressionable Anni, has heard that IV’s are something that hurt. And not just “hurt”, but “hurt a lot.” Obviously, I don’t blame the new teacher. I mean, sympathizing with kids about these things is a very natural reaction. But when you have a kid that gets IV’s on a regular basis, well then perhaps letting them know that you are afraid of them might not be the best idea, even if it is true. Most especially when they don’t currently have any fear of them themselves. But how in the world would that teacher know all that? First off, how often she gets IV’s and then, more amazingly, how she thinks they are actually kind of cool? And then there was the time last spring when Anni went to play in a park while she still had her PICC line in. Because the weather was warm, she had on short-sleeves, but the line itself was completely covered with an Ace bandage. Still, one curious little girl asked me about it. I took my time to think up an answer, trying to be matter-of-fact but also non-scary. Finally, I told her that Anni had a little tube that went in her arm and right up by her heart. She didn’t seem too wigged out by that explanation, and asked why in the world would she have something like that? That seemed like an easy one, so I confidently replied that she we sometimes need to give her medicine through that little tube. I guess something about the word “medicine” triggered some sort of unpleasant association, and thus I caused a 6-yr-old to burst out in tears on a fine spring day. Did Annika notice the little girl crying about her PICC line? Does she pick up how exotic our neighbor, Sabrina, thinks it is that Anni takes medicine so frequently just to “stay healthy”? (Sabrina, still trying to wrap her mind around that conundrum, asks about it regularly) When will she notice that other kids don’t talk about their IV bruises in gymnastics? Oh, sweet Anni, I hope we are able to make you value being special, rather than resent being different.

Friday, January 21, 2005

Annika had her MRI today. It went relatively well, considering that this is the first we've used the hospital in Peoria (OSF, Children's Hospital of Illinois). That hospital does both adult and pediatric patients, and Joerg noted that sometimes there are advantages in taking your child someplace that also does adults, as it seems that the waits for the equipment are not so long (just you try scheduling an MRI at Children's in Chicago--ha!), and then also the kids seem to get extra special treatment, you know, because they are kids (obviously at Children's in Chicago nearly all the patients are kids). I read an article lately about how medicine is often geared towards adults (the "reverse life-boat phenomenon"--kids last), and that's just begging for a write-up soon. I have been doing a little reading up on neurological conditions, and it sounds more and more to me like Annika might have something called dyskinetic Cerebral Palsy, but a very mild case. This all started because the pediatrician first noted that her reflexes were a bit fast, and her muscle tone a bit tight at her 4-year check-up. Upon checking with her Physical Therapist, Jane, we discovered that this is just the opposite of her evaluation a few years back (then she was slow, and a bit loose). This reversal, from what I understand, is pretty typical of CP. She also exhibits lots of other symptoms, such as early hand preference (which I had attributed to the PICC line being in place), general awkwardness (I believe I have mentioned her astounding fall record), toe-walking, facial grimacing, and speech that is somewhat more difficult to understand than that of others her age. And then there's her fidgeting. Some days I'm just constantly saying, "Hey, Annika, go use the potty, please!" thinking that surely anyone who has to wiggle that much must be working mighty hard to keep the bladder in check. She insists that she doesn't have to go, and then if I insist that she just try, it turns out that she really didn't have to go. But off the potty she comes and back to hop, hop, squeeze legs, and hop and turn. Still, this is not so outlandish given her age and steroid levels. Makes me wonder, though. Finally adding to my suspicions, she experienced one of the known causes of this kind of CP--high bilirubin levels as a young baby. On the other hand, all these symptoms are really very mild and could be attributable to other causes. We'll wait and see what the MRI tells us, and also to hear an opinion from an actual doctor.

Monday, January 17, 2005

sedation, postponed

Anni did not get her MRI last Friday as planned. Somebody forgot that she was supposed to be NPO (nothing by mouth) for 8 hours before anesthesia, and gave her morning meds with yogurt. So we had to reschedule the MRI for this coming Friday. However, we all decided that it was probably a fortuitous mistake, as the sedation seemed to be hitting Annika harder than usual. My mom pointed out that all of Annika’s big tantrums were shortly after coming off sedation, and I’m supposing that that might be one hell of a hangover to deal with at just four years old. So we’re all happy that her body has been given over a week to rest before another hit.

listen carefully

Annika has always had the habit of narrating her course of action just before she actually does it. This habit came in very handy during her "remove the poopy diaper and smear" phase, which I suppose was when I learned to listen to her every word very carefully at all times. Today after I put Frankie down for her nap, I took Anni downstairs to her new basement playroom, hoping she would start playing independently with her blocks or her dolls and let me snooze a bit on the floor. I floated in and out of consciousness, coming up just long enough to discover that I had a jump rope taped to my back (“cool”), and then that a piece of the rubber mat had been affixed to my head (“ok”). Not exactly sure what Anni was up to, it was clear that my immobile body had become a part of her imaginary games. I soon had a marker rolled up in my hair like a curler (“not going to work, little one. I don’t know where your curls came from, but they’re fighting an uphill battle with my genes.”). Anyway, I was feeling fortunate that the marker was only going in my hair, as one of Anni’s favorite books, Purple, Green, and Yellow, features a scene in which the little girl covers her napping daddy in a rainbow design drawn with permanent marker. I decided I might as well listen in to see if I could get a clue as to what she was up to. Still groggy, this is what I heard, “OK, now choose two thumbs. Good! Now stick those two thumbs in mommy’s eyes.” Lucky for me, I was still wearing my glasses, which gave me just enough time to pop up and propose a game of Candyland.

Wednesday, January 12, 2005

What fresh hell is this...

Ok, so for all you Dorothy Parker fans out there--I exaggerate, I admit it. (But, hey, so did she, although, obviously, much better than I do.) However, the trip to Chicago was not pleasant. Here's how it went: Monday, January 10 4 a.m. Wake up (at the crap of dawn, as the saying goes, although the actual crapping was still 3 hours away) to load the car, give Annika her last meal until after her procedure, and do all the last-minute stuff before leaving at 5:30. Joerg and I were waking up every two hours or so through the night, checking the clock to make sure we weren't missing the alarm, set at such an unreasonable hour. Annika seemed to be awake at 3a.m. herself, and so was pretty happy when I came to get her at 4 a.m. 5:45 a.m. Pull out of the driveway, 15 minutes late. 5:48 a.m. Return home for Frankie's shoes. Freaked out by the fact that I forgot my child's shoes, I had to do a quick check of all the luggage to make sure I hadn't forgotten anything else. 5:55 a.m. Finally on the road to Chicago. 6 a.m. Realize that the entertainment I had brought for Annika in the car could not be used until the sun was up and she could actually see what she was doing. Improvise by initiating mass "Kim Possible" cd sing-along. 6:05 a.m. Shocked when Frankie joins in the singing, matching pitch in a way that belies her usual tone-deaf speaking style. 6:35 a.m. Kim Possible getting a bit old. Annika starts complaining loudly that she is hungry and why can't she eat, anyway, because she doesn't want any old stinkin' test. 6:37 a.m. Pull off highway to fill gas tank, race Annika into the store to use potty and let her pick out a bottle of "special water." 6:45 a.m. Back on the road, Annika, mollified and distracted from marathon complaint session, sips from her bottle as the blessed sun rises. 6:50 a.m. Light enough to break out the Leapster, with all of its glorious "educational" games. Frankly, I don't give a damn if the games are educational or not. I really don't need that kind of conscience-soothing to allow her to play to her heart's content, and I couldn't care less if all the parenting magazines in the world proclaim that "educational video games" are just TV brain-mushing in smaller form. They obviously have never taken a small child on a long car trip with nothing more exciting at the destination than drinking way too much nasty-ass contrast after getting an IV placed, most likely followed by a fun-filled vomiting session after coming off the sedation. But I'm getting ahead of myself. 7:45 a.m. Anni falls asleep. Relieved, I break out some food for Frankie, who didn't wake up early enough for more breakfast than just a quick nursing session. Obviously, I didn't want to offer food to Frankie in front of Annika. 8:00 a.m. We hit rush-hour traffic jam. With Annika asleep and Frankie happily stuffing graham crackers in her mouth, I don't really mind. But, geez, Chicago traffic sucks. 8:40 a.m. Turning onto Lincoln just down the street from the hospital, Annika awakes. "Mom, what does that sign say?" "I don't know, which sign?" "The one that says, 'Hospital' but we can't get there because there's too many people in the way." I look around, and sure enough there is a sign that says "Hospital," although it's not a sign for Children's Memorial, and of course there are a ton of people crossing the street in front of us. I have no idea how she knew what that sign said. 9:30 a.m. Blood draw down in the lab is uneventful. Annika has no fear of needles whatsoever. 9:35 a.m. Drop off plate of treats and card (Annika's 3-year transplant anniversary) to the nurses and docs on 6W. Lots of ooooo's and aaaaaah's over Annika's growth spurt in the last year. Annika is sorely disappointed that Beata, her favorite nurse is not there. 9:50 a.m. Check in to medical imaging. Annika getting nervous. "Do I have to drink that test?" ("test": what she calls the oral contrast she needs to drink for the CT) "Yes, Annika, you will." 10:15 a.m. Up to the CT/MRI sedation suite. Frankie's getting tired and a bit grumpy, so I send her off with Grandma to walk the halls. We had hoped for a room at the Kohl's house in order for them to have a place to go to wait (and for Frankie to catch a nap in peace), but Kohl's was all full up. 11:00 a.m. The dreaded contrast arrives, in a huge styrofoam cup. Annika is already wrinkling her nose before she has even tasted it. 11:05 a.m. approximately 8 tiny sips in, Annika declares herself "done." 11:45 a.m. My efforts to coax one more sip from Anni are becoming pretty much useless, and she is way behind schedule to actually finish in the allotted one hour. Again, I tell her, "Anni, you have to drink this or you need to get a tube in your nose." In a suspiciously cheerful voice Annika says, "I want a tube!" I remind her, "But you hate getting a tube!" "I want a tuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuube!" she wails. So I let the nurse know, who shakes her head in disbelief, but gets everything out to place the NG-tube. I tell them that they should place the IV before putting the tube in, as I know that after they get the NG-tube that she is not going to be in any condition to hold still for an IV. The IV is no problem, and she tells them repeatedly how much she wants a tube so she doesn't have to drink "the test." It's becoming pretty clear that she has forgotten what getting an NG placed is like. However, once they start coming at her nose with the tube, she suddenly remembers and quickly decides that maybe she will drink, after all. 11:55 a.m. Annika once again refuses to drink anymore, not even close to halfway through the amount she has to drink. "I want a tuuuuuuuuuuuuuuuuuuuuuuuuuuube!" I sense a pattern developing, and a familiar one, at that. I tell her, "OK, but this time there's no changing your mind." So back again come the nurses ("She wants an NG-tube. All the cool kids are getting them, I guess.") They give her an oral dose of versed, the happy juice, to take the edge off, and they wrap her up in sheets, papoose-style. I see that there are only 2 nurses, and I wonder to myself if that's going to be enough. I should have wondered that out loud, I realized as two minutes later the three of us were straining to control her, unsuccessfully despite her slightly drugged-up state. I am just not a good enough writer to get across how very terrifyingly enraged she was. She was red-faced, veins bulging, and with every bellow she pushed so hard that the tube moved back out several inches. Seeing that, one of the nurses grabbed some of the extra-super-duper-sticky-never-ever-come-off-ever-ever tape that they don't usually use on sensitive facial areas and smashed it down over the tube on her cheek. I managed to brush away her hair before the tape came down over it. Yay, mommy! Annika, however, was in no mood to be grateful. Exhausted, she finally stopped her thrashing long enough to turn to me and say in her best Linda Blair in the Exorcist voice, "Mommy. Get. This. Tube. Out. NOW!" Then back to her insane workout (scream. thrash. kick. repeat.) Frankly, the nurses seemed a bit shocked at her sudden transformation from engaging curly-haired charmer to obviously possessed demonic spawn. You would think that after the tube was placed that all would be well, but no, we move on to... 12:10 p.m. The nurse begins to push the contrast through the tube using a syringe. It would seem that this would be unobjectionable, as Anni clearly could no longer taste the vile stuff. It doesn't work that way, though. Somehow, the stuff going into her stomach causes her to gag and semi-wretch. I absolutely do not understand how this works, but one of the doctors told me once that there are lots of nerves in the stomach, and so perhaps she feels it, despite skipping the taste buds altogether. 1:15 p.m. Anni is taken to the CT suite, where she is fine until I try to lay her down on the table with her head in the restraint. She begins yet another freak-out, until a quick-thinking nurse gets her talking about her plans to go roller-skating (This, by the way, is all in her head. We plan on putting off roller-skating with her for as long as possible. I mean, she currently cannot walk without falling down at least 4 or 5 times a day, and she wants to put wheels on her feet???) This keeps her distracted until the IV sedation kicks in. 1:25 p.m. She wakes from the short-acting sedation to see me standing above her. In her drunk little girl voice, "Maaaaaaaaaa Maaaaaaaaaa! You have TWO eyes!" Astonishment at the number of my eyes lasts for a good five minutes. Frankly, I'm impressed that she's only seeing two, given the fact that she sounds a bit like Barney Fife after an all-night bender. 2:05 p.m. The sedation has worn off enough for her to be released. The nurses let her choose a beanie baby, and she picks the skunk. She promptly lifts its tail and aims it around the room, "Spray! Spray!" Yes, she's a real class act. 2:06 p.m. I finally reach Meylin, the assistant to one of Annika's transplant coordinators, to let her know that we have brought treats and a card I made to commemorate Anni's 3-year transplant anniversary. She says she is coming right away to pick them up, so we wait in the hall outside of CT. 2:18 p.m. I call back Meylin, who explains that she got distracted and is now really heading over to meet us. We decided to move down to the lobby. Because Anni's legs are still not so steady, she has to ride in Frankie's stroller, which is also loaded up with coats and other miscellaneous stuff. My mom carries Frankie, and I push Anni while simultaneously balancing the box full of treats. This was actually a lot harder than it sounds now that I write it down. Trust me. 2:25 p.m. Food, at long last. I hadn't eaten since a quick breakfast at 4 a.m., not wanting to eat in front of Annika. Somehow, I had also managed to not drink anything since 4 also, although Anni was at least drinking until 7:45. The McDonald's in the basement of the hospital, not normally a welcoming sight to me, had never looked better. But as we crossed the threshold, Annika, completely without warning, vomited with impressive force. I felt terrible for the people eating lunch right there. On the other hand, I'm guessing that hospital McDonald's employees are pretty experienced with this type of thing. So I let an employee know and we headed back out to clean up. Anni's clothes were soaked, as was her skunk (unsalvageable). I ran upstairs to get her a hospital gown and pants after cleaning her hands and face. Annika was holding my mom's purse on her lap when she vomited, and we all agreed that it was lucky that her purse was zipped up at the time. 2:40 p.m. Clean once more, we try to enter McDonald's again. This time, I see Annika's cheeks bulge as she loses all color in her face. I hustle her out of the stroller and we run for the restroom, but only make it as far as the door before she is at it again. After the second round, Anni smiles and proclaims that she is "better now." 2:50 p.m. Warily, we try again. I am fearful, but really just too hungry to not give it another try. Annika insists she is fine and that fries are just the thing she needs. Too weak from hunger to argue, I simply eat while never taking my eyes off her. 3:05 p.m. I remember that I have no idea where we are staying that night, as Michelle from the Kohl's house was making arrangements for us and said to call her for the details. Worried that she had already left for the day, I dashed upstairs. Michelle was not in, but Pam, who knew nothing of the arrangements, said she should be back any minute. 3:15 p.m. Back to the lobby, with the kids and my mom this time. Michelle is still not in, try again later. 3:19 p.m. Michelle still not in. 3:22 p.m. Michelle still not in. 3:31 p.m. Michelle still not in and the kids are growing restless at waiting in the lobby, despite the fact that my mom took Annika over to the gift shop to pick out a toy. 3:33 p.m. Michelle still not in. I see that, dark dreary Chicago Winter day that it is, we are fast losing sunlight, and I dread driving to an unfamiliar location in downtown Chicago in the dark. 3:35 p.m. Michelle still not in. Pam growing testy. Getting too panicked to really care whether or not Pam is growing testy. 3:37 p.m. Remember that, although Pam does not know any of the specifics of the arrangements that Michelle has made, she has said that it would probably be at the Marriot Residence Inn downtown. Finally have the bright idea of calling the hotel directly to see if they know about any arrangements that might have been made for us. 3:40 p.m. Woman at front desk has no idea, but transfers me to someone in sales who "might know." 3:42 p.m. Woman in sales picks me up from hold, and, hallelujah, she knows something about the whole setup. However, she needs a few minutes to deal with something else first. Could she call me back? Sitting in the middle of the lobby holding the house phone, I tell her that I have no idea what my phone number here is, and that I really have nothing better to do than wait on hold anyway. 3:50 p.m. Woman in sales gives me directions (faulty, as it turns out) to get to the hotel, and says all is ready for us. 4:00 p.m. We are pulling out of the parking garage in record time, and I'm beginning to relax a bit. Somewhere on Lake Shore Drive, I begin to suspect that our directions are a bit off, and so I pull onto Michigan Avenue on a hunch. Somehow, I manage to drive straight to the hotel, although I don't see any parking. I decide to just drop the kids and my mom off at the hotel and then go find a place, but when I open the trunk I realize that I have left Frankie's stroller in the parking garage. Somehow, this happens to me all the time. I load the baby into the car out of the stroller, and then just forget to put the stroller in the trunk. This time, however, the basket of the stroller contained my digital camera and Annika's medicines. Anni's meds were the real emergency, but I wouldn't be too happy about losing my camera, either. So off again to the hospital parking garage. 4:20 p.m. Amazingly, the stroller is still there, with all contents intact. And the parking garage lady doesn't even charge me for going in and back out again to recover the stuff. 4:30 p.m. Back at the hotel, and this time the valet comes over to ask me about parking. I ask if there is anyplace to park myself, and he gives me a sheet. The cheapest place is several blocks away, and it is $24. The valet service is $35, and I get to head right in and forget about it. Valet it is, although I confess I am still shocked at those prices. Who the hell can afford to live in the city, anyway? Thank goodness the hotel is free. 8:00 p.m. Dinner has been eaten, Daddy has been called, baths have been taken, and it's time for bed. I try nursing Frankie, but she refuses to fall asleep at the breast, as I had hoped she would. So I try just laying her down in the port-a-crib, but she sees Annika and me laying in the bed together and cries and cries. So I try getting up and walking her on my shoulder, but every time she starts to settle down, Annika whispers to her Grandma, "She's getting quiet. I think she's sleeping!" Annika's whispers are only slightly louder than her normal talking voice, but oh so much more hissy sounding, which never fails to perk Frankie right back up. I was losing patience with them both, I confess. Finally, I put Frankie down with some familiar lullaby music playing and told her night-night, and we all went and hid in the huge closet. Sure enough, Frankie settled down after a few minutes' protest, but Anni's whispers ensured that she couldn't fall completely asleep. So finally my mom snuck into bed and I took Anni out to walk the halls until Frankie was asleep. 9:50 p.m. Both Annika and Frankie are asleep, but I have contracted stress hiccups and can't fall asleep. Tuesday, January 11 1 a.m. I wake up just at the moment that Anni starts to roll out of bed, and manage to catch her. Wondering at my super-mom powers, I fall back asleep. 2 a.m. Super-mom sleeps through Annika falling out of bed, hitting her chin on the night stand on the way down. 6 a.m. Alarm, which both girls sleep through, which means I get to eat and have coffee. Annika is again forbidden to have food, and also drink this time since she will be having actual anesthesia today. 7:30 a.m. Annika awakes, and throws fit when told she cannot eat or drink. Fit threatens to become full-blown tantrum when told we need to leave for the hospital soon. 8:00 a.m. Discover that I have been billed for the night's stay to the tune of $139. Run downstairs trailing luggage to try to correct it, although we need to leave immediately in order to be on time to the hospital. I leave the clerk at the desk to correct the problem, while I run back upstairs to gather kids and the rest of the luggage. Annika throws herself on the floor and refuses to budge. Threatened tantrum emerges in all its glory. OK, I can't say as I blame the girl. She didn't exactly have fun at the hospital the day before, but I don't have time to try any reasonable parent tactics to get her going. In the end I simply pick up her thrashing (again) little body and wrestle her into the elevator. Am I stressed? You bet! Should I have had that extra-large cup of coffee at breakfast? My racing heart and jittery hands say "no!" 8:30 a.m. Arrive at hospital 15 minutes late. However, no one seems to mind. The tantrum seems to have passed, although she is obviously still nervous. 9:00 a.m. We arrive at the new outpatient procedures sedation suite, and Annika is super impressed that she has her own little TV. When I find out that they won't be placing the IV until she is under, the morning really begins to look better. Then the nurse tells me that an extra blood test has been ordered, which they will also draw when she is under. This sends me into a little panic, as the only thing that I can think that they might want to draw is an EBV-PCR (monitoring viral loads for virus which caused PTLD episode last winter) due to some problem with her CT scan yesterday. Yes, the nurse tells me that it is an EBV-PCR that they are drawing and I began to panic a bit and hold Annika very tightly. Annika snuggles right in, and I wait for someone to show up who can tell me what in the world they saw on her CT yesterday. 9:45 a.m. Dr. Alonso stops by to talk about the scope that she's doing, and why they decided to cancel the liver biopsy (liver numbers look better, and Anni has bleeding issues which makes a biopsy more risky for her in general). And, yes, the CT from yesterday showed that Anni's lymph nodes were more numerous and bigger than her last scan. 9:55 a.m. I walk Anni back to the procedure room, where they give her the mask. She fights it a bit, but not so much as they have again given her a little versed to take the edge off before starting. 10:45 a.m. Dr. Alonso stops by to let me know that Annika's varices look better, in particular the one large varix that Dr. Brown observed last time is down to a grade 1-2 (on a scale of 1-4, 4 being the most severe). However, they have taken biopsies of her stomach and intestine, in areas that didn't look quite normal. She also tells me that the CT results show that she needs to be monitored, but are nothing to panic over. Whew. 11:10 a.m. Annika wakes up. Her recovery nurse is George, one of our favorites. He was Annika's nurse for one of her CT's nearly 3 years ago, when Annika had one of her most spectacular diaper blowouts of all time, which covered her, me, the gurney, the floor, and a bit on George himself. George was quite happy to see that Annika is now potty-trained. 11:30 a.m. Anni is discharged, although she is still wondering when they are going to do "the test." Versed has pretty strong amnesiac effects. 12:35 p.m. Lunch is done, and we're ready to hit the road. My mom suggests one last stop at the gift shop to celebrate the end of a stressful two days. Annika quickly finds three toys that she loves. I tell her to choose one. "No! I want three toys!" You can imagine the conversation that we have for the next five minutes or so, so I won't repeat it verbatim here. Finally I told her to choose one or choose none. In the most annoying spoiled child voice I have ever heard from her she says, "I choose three!" So I put all the toys back and hauled her out of the store. And...cue tantrum. This was one amazing tantrum, though. I really should say at this point that Annika is not really a temper tantrum throwing kind of girl. She has a friend that throws tantrums on a regular basis, and so Annika tried that out earlier this year. I told her that she could just go throw her tantrums upstairs in her room so that we didn't have to listen to it (carrying her upstairs myself), and that took care of it. But now here she was, all out of control in the main lobby of Children's Memorial. I could just see all the social workers and child psychologists walking by, taking note of the bad mommy in the lobby, checking to make sure that the howling child was not howling because bad mommy was really abusive mommy. I won't go into all the details of the tantrum here, but finally I was able to get her shoes off and get her into the sling so that we could leave (she wouldn't allow me to buckle her into the stroller, and she surely was not going to walk out of there on her own). 1:05 p.m. Somehow we managed to get to the car, despite the fact that Annika was screaming and trying to wriggle out of the sling the entire time. Both kids buckled in, we headed for the hotel again, as mom had left her cell phone in the room and I had forgotten to leave the room keys. 1:25 p.m. After getting lost, briefly, in the maze of downtown streets, we were back on the highway. Annika was still mad at me. Everytime I responded to something she said she would reply, "I was talking to Grandma!" 2:50 p.m. Annika, speaking to me again finally, says, "Mom, you know what? I'm sorry about the toys. How about if next time I just choose one?" I was so proud of her for that, despite the horrible day we had had. Really, I understood why it was that she had thrown that horrendous tantrum. Talk about two days of having absolutely no say in what was happening, and having to do some very unpleasant and even painful stuff. All that frustration had to get released somehow, and I'm guessing that she just doesn't know how to release it in more appropriate ways just yet. I am seriously looking into teaching her self-hypnosis to help her refocus her energy and attention away from her fear. I will say that, despite understanding her fit of rage, I had no intention of letting that kind of behavior pass. Hence, the no toy policy. And now she was apologizing! Despite the embarrassment of the hospital lobby, I really felt like a good mother right then. So that was our trip--not really in a nutshell, unless you're talking a pretty big nut. Dr. Alonso told me that, if she had to hazard a guess, that she would think that Annika will have to be retransplanted in 5-7 years. But she also said that, given how sick Annika was one year ago, when PTLD and portal vein thrombosis was diagnosed, that she never would have guessed how well Annika is now doing one year later. So maybe Annika will surprise her again, and she can hold on to this liver, given her so generously by my cousin, which has served her well these past three years.

Thursday, January 06, 2005

single no more

Joerg's been in Indiana working on some research since Tuesday morning. The girls and I made it through OK, although with a bit less sleep. Anni woke up this morning at 2 a.m. and crawled into bed with me. "Is daddy coming home today?" Assurances given, and then back into her own snuggly bed, because I swear the girl punches in her sleep. Yesterday we had a windy ice storm, and with every shuddery house noise Frankie looked up hopefully, "Daaa-deee?" Then she took to toddling in a circle around the house calling, "Daaa-deee! Daaaa-deeeeee!" Frankie's learned a new word, "puppy" or rather "buuuhh-pweeee," drawn out in her adorable tone-deaf slavic-accent baby speak. Her new favorite loveys are 2 little puppies (again, generously passed down from Annika), and a red octopus, which is also resolutely categorized as canine. She cannot go to sleep until she has kissed them, and made sure that I have kissed them, too. It's amazing how clearly she makes her will known with a vocabulary mainly consisting of grunts and gestures. We are gearing up for a long and busy month of doctor's visits. We head to Chicago next week for Anni's regular check-up procedures: CT, liver biopsy, endoscopy to monitor her varices, liver scarring, and lymph nodes. We have to stay overnight there because it can't all be done in one day. The following day we have to go see her regular pediatrician at the request of the pediatric neurologist (in Chicago, again) that we'll be seeing the first of February. It looks like the neurologist will be evaluating Annika for cerebral palsy, which would explain a number of things, like her persistent toe-walking, her facial grimaces, her clumsiness. Even if it turns out that she has CP, though, she cannot have a severe case of it, and a quick search of the internet revealed that CP is not a progressive disease, and that many kids simply outgrow it. So we're not overly worried. Anni will also have an MRI of her head in a few weeks prior to the neurology visit. So she'll be having 3 sedations in one week. Not that she hasn't had that many (and more) in one week before, but this is the first time that she's having that many on a non-emergency basis. Cliff, Anni's second liver donor, had a birthday on Sunday. We called him, and Anni enjoyed chatting with him. Thankfully, she did not make him talk to her dolls or any stuffed animals, as she often does with Grandma. However, she was full of helpful life advice for him. Example: "Cliff, you need to stay inside and keep your feet on the floor. Because it's cold and also you need to be sure that you don't fly away up up up into the sky." Whoa, Dude. That's Deep. I think the thing about keeping feet on the floor is coming from some rule at the preschool instituted to protect the furniture. Of course, she doesn't know that Texas (where Cliff lives) is not currently the ass-freezer that Illinois is. The flying away part, well, that's just your typical conversation with a 4-yr-old psychedelia. I designed a t-shirt on that I sent to him and also his brother, Eric, who also volunteered to donate, but was disqualified after his artery collapsed during an arteriogram We owe the Snell family sooo much. .I’ll post a picture of the t-shirt when my photo server is back up. Annika and I went out today to walk around in the freezing cold during Frankie's naptime. Ice covered every surface with a light dusting of snow on top. Anni enjoyed collecting "grass-cicles" and stomping around in the crackle-fest of our frozen lawn. Our grass really needed to be mowed one more time before winter, but I just never got around to it, unlike all our neighbors, with their damned perfectly shorn perfectly maintained lawns. So now our spiky lawn, with each stiff blade of grass encased in ice, looks like the landscape equivalent of a punk rocker at a John Tesh concert. It's been but a scant few weeks since my job teaching at IWU ended, and already the celebrating has ended. My unending urge to attach myself to a job has again resurfaced. I prepared my resume and letters of application for two part-time teaching jobs here in town while Joerg was in Indiana. Joerg went to get the mail today just as the truck arrived. Here's how it went: Me: "Oh, did she take the letters I put in the mailbox?" Joerg: "Um, I guess. They weren't there anymore. What were they?" Me: "My resume for those two jobs I told you about. But I guess I forgot to put stamps on them." Joerg rolls eyes, but just a little bit. Yup, I am a winner! The server that hosts my pics is still down. I miss them. Will I ever see them again? I'll keep hitting reload and holding my breath.

Tuesday, January 04, 2005

Server down! Server down!

The server where I store my pictures (and the music clips for the next post) is down for maintenance until the 6th. So all those broken links and missing pics will be back then. I hope.

Sunday, January 02, 2005

OK, now I get it

This morning Joerg and Frankie slept in, so Anni and I were having a quiet breakfast together. Out of the blue she says, "Do I have to be a bit older to go to The Land of Florida?" "The Land of Florida?" I ask. "Yes, The Land of Florida." "That sounds like a great idea, Anni," I said, amused at her charmingly archaic turn of phrase. Later on Joerg asked me, "Have you heard? Annika wants to go to Orlando." Oooohhhhh.

Saturday, January 01, 2005


note: throughout this post I have links to hear short clips of the music, and also links to the music on Amazon. I don't have any affiliation with Amazon, it was just the easiest way for me to link to a place to buy the music, thinking I should have such links when offering up clips.
The CLASS discussion boards recently had a thread asking about favorite lyrics of songs, which has gotten me thinking about the music around our house. We have music playing nearly all of the time around here, and it's great to see Anni developing her own tastes as she chooses her own favorites. (Really, all the things kids do to show that they are developing into their own little people are amazing to me. I hope I never get over that feeling.) It's also just downright hilarious to hear her singing along to her favorite songs in the car, as she enthusiastically sings all those poppy interjections ("Hey!", "Oooo-ooo-ooo!"). So here's a brief history of Anni's music: The CD that still conjures up the most memories and emotions for me is Sara Hickman's Newborn . It's an absolutely gorgeous CD, with a nice mix of humor along with the smooshy "I love you little one" songs that are the perfect expression of a new parent's unbelievable, unexpected, and indescribable feeling of complete and utter devotion to their vulnerable little poop machines. The two songs that still get me all teary are "It's Alright" and her version of "You Are My Sunshine." They are the simplest songs, lyrically speaking, and are both sung a capella. But they have an immediacy to them, like she recorded exactly what she was singing to her own baby, that make them just perfect. Annika and I listened to this CD probably thousands (millions?) of times as I rocked her in my arms in the hospital, during all those long days and nights when she would only sleep if she were in my arms, snuggled in to a bare breast, ready for nursing at all times. "You Are My Sunshine" is such a simple song; I remember singing it even as a very young child, and Anni loves to sing it now, too. But that first verse is such a perfect expression of how a parent feels holding a critically ill child in the hospital: You are my sunshine My only sunshine You make me happy when skies are gray You'll never know, dear, how much I love you Please don't take my sunshine away I left that CD playing on repeat while she was on the ventilator in the PICU and we had to leave her to go catch a few hours sleep down the hall, as parents couldn't sleep in the PICU rooms. We hated leaving her sooo much, even just to go down the hall, and we hoped that at least if she awoke she would have that familiar and comforting sound of her favorite CD. We both still love that CD, even after listening to it so many times and during such unhappy times. In fact, she chose it tonight as her "night-night" music. Here's a clip of Sara Hickman's version. The next CD that Annika really got into was Ralph's World . She particularly loved the first song, "Freddy Bear, the Teddy Bear" (who lives on top of a mountain made of CHOC-o-late cake!), and also his fun rendition of "The Tigger Song." It was around this time that she started trying to sing songs herself, so I will always have lovely memories of her trying to sing "The wonderful thing about tiggers is tigger's a wonderful thing" but not being able to get her tongue to move just quite fast enough so singing instead, "The wun-ner-fuh TIGGERS! a wun-ner-fuh DING!" For several shining months, Annika was in love with Bruce Springsteen. This was due in no small part, to her daddy's influence. But he never, in his wildest happiest dreams, expected her to really really enjoy The Boss as much as she did at such a young age. We listened to The Greatest Hits CD in the car, and she particularly liked the '80s stuff. Joerg proudly brought out his DVD of The Springsteen Complete Video Anthology , and showed her the one that Daddy was in--he was an audience member in a small club for a video of Hungry Heart shot in Berlin in 1995. He would slow it down, and then pause it, and point to the TV, "There I am, Anni! Do you see me?" "Yes! Yes!" she would exclaim, and then turn to me, "Mommy, there is Daddy there on the TV with Bruce!!" Everytime the camera would pan the audience, she would shout, "There's my Daddy! Right there!", even when Joerg was nowhere to be seen. Truth be told, the video was shot nearly 10 years ago now, and Joerg and I both look a bit different. For one thing, Joerg's hair is about 10 inches shorter and his ear has about 4 less studs. But eventually, Joerg played a few too many of those long, live concert jams, completely taxing her little attention span. The next CD she really fell in love with was All Wound Up! by Cathy Fink, Marcy Marxer, and Brave Combo. This one features a super-fast klezmer variation of "Hush Little Baby" (hence Mockingbird Polka), that she could not get enough of. I sang "Hush Little Baby" to her a lot as a baby and toddler, so she was thrilled to already know the words, and just fascinated to hear such a familiar song reinterpreted. It also helped, I guess, that the title "All Wound Up!" was a perfect description of the general mood of the music, and she was on relatively high doses of steroids at the time (yes, head-exploding energy. thank you, prednisone.) Over the summer the girls and I frequented garage sales and thrift stores for fun. Often I would let Anni pick out an item of clothing or a book or a toy for herself. The clothes were really great, because I could just let her little fashion sense run wild and allow her to choose something that did not (and never would) match anything else in her wardrobe, a luxury not indulged when paying even just Target prices. One day I had the bright idea of letting her pick out a CD at the thrift store, since they were just 25 cents each. Of course, she was just picking by cover art, but I thought it would be fun for to choose it and then get to listen right away in the car. She picked out Red Hot + Dance . How could she not, with all those little happy Keith Haring people boogying on the front? The very first track, "Too Funky" by George Michael, tickled her fancy and we played that one over and over all the way home and for several days thereafter. Then we all went together to the store that weekend, and Joerg gave me the most shocked look as Annika belted out "Wontcha rock wit me ONE TAAAAYYM!" as she bounced in her car seat. OK, there was plenty of sexual innuendo in that song, I admit. It was GEORGE MICHAEL, after all. But unless we are planning on keeping her away from the radio at all times, that innuendo is going to pop up. It was agreed, though, that we have plenty of fun music with zero innuendo (I know, I'm writing "innuendo" a lot, but isn't that just the funnest word? Bless those Latin wordsmiths.) and so decided to subtly guide her back in that direction. Having gotten a taste for the mad clubby beats, she discovered the joys of the Kim Possible soundtrack , which is where we are now.

As with Annika, Frankie showed definite musical preferences at a very young age. Her musical taste as a wee infant was for Tracy Chapman, especially Matters of the Heart . Now at 14 months she is a total music glutton. She cannot hear even a few bars of a song, any song, without having to stand up and shake her booty. Theme song to Dora the Explorer? Shakin' her booty. Blondie's Greatest Hits while mommy cleans house? Shakin' her booty. Any random song that happens to come on the radio? Shakin' her booty. Tinny electronic music from Annika's Friendship Ponies' Stable? Shakin' her booty. And when I say "Shakin' her booty" I hope you know that I do mean literally shaking her caboose. Yes, she wiggles that little popo and waves her arms in a beat usually somewhat close to the actual rhythm of the song. While Annika always loved music, it took me forever to get her to dance, and she still looks a bit uncomfortable doing it. She's her daddy's girl, I guess. Here's proof (yes, again it is very dark. our little camera does not perform well in indoor lighting situations. yes, I know that this little movie is shot sideways. yes, I am a complete idiot. but look at Joerg dancing!)