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.

Sunday, December 28, 2003

Happy Holidays! We've had a pleasant Christmas around here, although we were disappointed to have to cancel our trip to Kansas City due to illness there (get well, soon, Cochrans!). Actually, Anni now also seems to be brewing something, and we have no idea where she picked it up, as we've been mainly keeping her at home. Ever the traditionalists, we had stir-fry for Christmas dinner! (We had chicken burritos for Thanksgiving--I guess we'll get a bit more conformist when the girls get old enough to know how weird we are sometimes!) Annika and I made 3 different batches of Christmas cookies, so now I know what my favorite sugar cookie recipe is. Anni had a great time cutting out the cookies and decorating them (what a mess, but a really fun mess!). Other things she's discovered this season: her favorite Christmas song is "Jingle Bells" and Christmas lights are really really cool. Annika's big Christmas present was a dollhouse, which she loves. My Christmas present was a digital camera, which is nice as I was breaking the bank with all my film developing costs! I've posted new pictures to the website, most of them taken with my new digital camera, which speeds up the posting process considerably. My camera also has a nifty video feature, which allows me to make movies limited only by the amount of available memory (which right now is only 16 MB, or 30 seconds). So you can download our first ever Annika movie from the website, showing Anni getting her dollhouse. Because I don't have very good editing software, the size of the movie was a bit too large, so I compressed it and it's still pretty big (8.9 MB), but at least manageable. Not too big at all if you have DSL rather than dial-up. Anyhow, it's compressed, so you'll have to double-click to decompress, and then double-click again to get it running. Both of those things should happen automatically once it's downloaded to your computer. Let me know, please, if it doesn't work, as I'm doing everything on Mac and can't check Windows behavior. The camera also includes the ability to record sound when you take a picture, so I also posted a "movie" that consists of still pictures with the sound of Anni talking as a soundtrack. I need to practice with that feature, because it only records for 5 seconds unless you hold down the shutter, which I keep forgetting to do. So I managed to catch Anni laughing (hilariously mischievous laugh), but it got cut off too soon. Too bad... That one is only 616K, so it should download in a few minutes, even with a slow dial-up connection. Again, though, you have to decompress and all that. Again, should be automatic. Again, let me know if it doesn't work. Also, I changed my page so that only the most recent photo albums show up. It was just taking too long to load up the page with all the old albums. There's now a link at the top if you want to see all the albums, rather than just the newest. There are also new pictures of Frankie on the website. It's unbelievable to me how big she is. A friend from Anni's playgroup stopped by with her new baby girl, born 1 week ahead of Frankie, but Frankie looks about twice her size! I should post some pictures of Anni at the same age for comparison purposes. They no longer look anything alike! So that's it from here. I hope your holidays have been as enjoyable as ours, even though we're just hibernating at home. We're looking forward already to the return of Spring so we can get out a bit more...

Sunday, December 14, 2003

Annika currently has a viral infection that won't go away, but she continues to run around the house all smiles. The other morning Anni spotted Joerg's recently purchased dvd of a Bruce Springsteen concert in Barcelona. She looked at it carefully and proclaimed, "Oh, look! Daddy has a new Bruce movie!" Then they snuggled together on the couch and watched it together. She sometimes even asks for "Bruce" in the car, which delights her daddy no end. It's funny comparing the two girls. Frankie *loves* Tracy Chapman. If she's ever grumpy for no apparent reason, I just pop in one of her cds and dance with Frankie a bit and it works every time. Anni preferred Linda Ronstadt at this age. In general, Anni liked the high soprano, while Frankie goes for more of an alto sound. Physically, too, the girls are quite different. First of all, I am simply not used to seeing such a fat baby! Her rolls of fat on her legs just shock me! Secondly, I have to remember to be careful with Frankie because she is simply capable of doing so much more than Anni could at this age. I put Frankie on the floor for some "tummy time" with some newborn toys on either side as I went to go change Anni's diaper yesterday (potty training lurches along, that being a rather unsuccessful day as Anni had diarrhea again). When I got back a few minutes later, Frankie had moved herself back on the floor about 8 inches and completely rotated her body. I was amazed at this, remembering, of course, that Anni couldn't even roll over until she was 14 months old. So, in some ways, it is like Frankie is our first child, given that Annika simply missed many of those regular developmental milestones while she battled liver disease. Frankie has started smiling! She gives these funny little lopsided Elvis Presley smiles, where one corner of her mouth lifts way up. We have all been graced with one of her smiles-- Mommy, Daddy, and Annika. Anni was so delighted at getting a smile from Frankie that she started laughing really hard, which inspired Frankie to get both corners of her mouth up in a huge smile, and I thought she might even laugh herself for a moment. I remember that Anni's first smile was for my breast. She was so ready to eat one day, and I pulled my breast out the bra and Anni turned to it and broke into a huge grin. That girl sure loved to eat, even if she didn't really gain too much weight from it... We soon got smiles from Annika, too, and she was such a smiley baby until her liver disease got too bad. Anni is still just the smileyest kid. Whenever we go to the mall, or the park, or to visit Daddy at his office, she just marches around with her big grin, inspiring smiles as she goes. Lately she's been very excited about "helping" me, and she'll have one hand on Frankie's baby carrier or stroller as we walk around. She also loves bringing me a diaper for Frankie, and unfolding it, as well as wetting the cotton pads for wiping Frankie's rear. When I put Frankie in the car seat in the kitchen so I can cook or clean, Anni sits down beside her and rocks her in her seat. So we're all, Annika included, enjoying being a 2-girl family! *************************************************** I didn't get this sent out, and now it's over 2 weeks old! In the meantime, we've had Frankie's 2-month checkup. As expected, she's at the very top of the charts for her weight gain (14 lbs.), and near the top for her length (23 3/4 inches). She was not too fond of the last set of vaccinations, but other than that her appt. went smoothly. Anni was excited about getting to show Dr. Weaver her latest boo-boo (a nasty scratch and bruise on her leg from being silly on the sofa), and clearly expected him to be impressed. After he was done examining Frankie, Anni climbed up on the table, began taking off her shirt, and informed him, "My turn!" Clearly, we have had great doctors and nurses, given that Anni has no fear of them at all. Anni has been very impressed by the snow, Christmas lights, Christmas trees, and all things surrounding this season. We're looking forward to her 2nd Christmas at home, and our first with Frankie!
Oops, forgot to post. this is from 11/22/03 Life with an immunosuppressed toddler is always interesting... Anni's nose started running Wednesday night, and Thursday morning she was running a low-grade fever. So we took her to her pediatrician, who said that it looked like a cold and that was that. But when she woke up from her nap, her temperature had risen to 103.3. So I called her doctors in Chicago, and they told us to take her to the ER to be evaluated, have blood cultures drawn, and get a shot of a powerful antibiotic, just in case she was brewing something serious. So we got to the ER at 5, and they saw us right away. Of course, it turns out that the antibiotic Chicago wanted her to get was one that she was allergic to, so they had to start an I.V. to give her an alternative drug (actually 2). Well, getting an I.V. in a 3-yr-old, especially when you're not at a children's hospital where they have a lot of experience with I.V.'s in little veins, can be a long and hair-raising experience. They finally got the I.V. in and her first antibiotic running at 7. They then took her down for a routine chest x-ray to make sure all was well with her lungs. Joerg and I were pretty sure that we would get the antibiotics on board and then take her home to monitor her progress. However, the ER doc wasn't so sure he felt comfortable discharging her. On top of her fever, her distended abdomen, her abnormal labs (they're never normal, though...), her chest x-ray seemed to indicate that her heart was enlarged. So now Joerg and I are worried that we've underestimated this thing. The ER doc calls our pediatrician on call, and she informs him that she's not comfortable supervising Anni's care at our local hospital. So the ER doc calls the pediatric GI in Peoria, at the Children's Hospital of Illinois (about 45 minutes away from us). Same story--really doesn't want to be handed her care, as he hasn't seen Annika in several years. He suggests sending her to Chicago. So the ER doc calls Chicago and they get a room ready for us. Then the doc calls to arrange an ambulance to transport her to Chicago. None are available for a long haul until early Friday morning. We tell the ER doc that we feel comfortable driving her ourselves, as we're experienced in I.V. care (they usually don't allow patients to leave with an I.V. in). He agrees that we're competent enough to release her to us to drive ourselves. We're actually very relieved at this decision, as ambulance rides are extremely uncomfortable. Also, this means that I won't have to drive by myself to Chicago to go pick them up. I am so sleep-deprived that Joerg was quite worried about me making a long drive by myself (he was going to ride in the ambulance with Annika as I wouldn't have been able to take Frankie in the ambulance and she needs to eat pretty frequently). About the time that the doc makes this decision, though, we notice that Anni is getting a bright red rash that begins on her scalp and moves down her face. It looks like she is having another drug reaction (she's allergic to quite a few drugs, which always makes treating her more difficult). So then it's decided that maybe we'd better take the ambulance after all. Another hour passes, and Annika's rash fades. The ER doc tells us that it doesn't look like she's going to have any serious reaction to the drug, and it's agreed to monitor her for another couple of hours, and then let us drive her if she's looking OK. So I go home to pack our bags, give the cats extra food and water, and toss the dishes into the dishwasher. By the time I return, Annika's rash is completely gone and we hit the road for Chicago at 12:30 a.m. By the time we get to Chicago, get admitted, get a room, and give the docs her treatment history, etc., it is 5 a.m. We all settle down (Frankie, too!) for 2 hours of sleep, and then another day in the hospital begins. Annika is seen by several doctors, and has an abdominal ultrasound. It is pretty clear by early afternoon that our trip was completely unnecessary. Her heart is not enlarged, she has no fluid in her abdomen, and her behavior makes it clear that she is not septic. It is clear that she most likely has a nasty virus brewing, though, so they are as eager to get us discharged as we are to go home (they have a lot of very fragile patients on that floor, as Annika once was, so an otherwise healthy kid with a contagious viral infection is not really someone they want to keep around!) So we are back on the road by 6p.m. Meanwhile, we're pushing the fluids on Annika, and trying to keep her coughs and sneezes away from Frankie. Joerg and I were wondering to ourselves on the trip home at how much time is consumed when you have a medically complex child. Just a normal childhood illness, and we end up with ER visits, I.V.'s, and road trips! Of course, Annika takes it all in stride, and charmed all the new nurses on 6 that she hadn't met before. She enjoyed all the "visitors" (doctors and nurses) who came in, and told her what a great patient she was. On the way home, Annika was chattering happily away about all the things that had happened and she said enthusiastically, "Going to the hosipal (hospital) is *fun*!" Now we're home, and dealing with the usual sick kid grumpiness. She replies, "no!" automatically to all requests, even if the answer really is yes. I put her to bed early tonight, and she was complaining loudly as we tried to get her PJ's on. I told her that she could have some extra stories in bed tonight. That caught her interest, so I explained that she could choose 4 stories (she normally gets 3). She frowned and yelled, "No! I want *2* stories!" Then the frown got even deeper as she realized that that was the wrong thing to say, and you could see the gears clicking as she tried to think of a way to correct herself without appearing to give in. Finally she just looked at me triumphantly and said, "No, I want *lots* of stories!" Frankie also took the hospital trip in stride, and was a very good baby for us the entire time. She continues to grow at an amazing pace. The pediatricians in Chicago were all shocked that she was only 6 weeks old, and so I know that it is not just maternal pride leading me to believe that we are raising a strapping big girl. She has nearly outgrown her 0-3 month clothes already, so I'm glad that I didn't give in to my late pregnancy impulses to buy more of those cute itty bitty stretchy suits.