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.

Wednesday, March 24, 2004

We are still at home. It seems that Anni has gotten my cold (last weekend it really knocked me flat), although I was really trying to keep it from her. Looks like both girls think it is a good idea to stick their hands in mommy's mouth! I swear I have been trying to break Anni of that habit (obviously, Frankie is too young to "teach" yet), but with only middling success. Anyway, when I called the docs in Chicago to tell them that Anni had a fever and a runny nose, they decided that there was just so much going on with her that they would prefer to hold off on sedating her until she can get over this. So we're rescheduled to go in next week. This gave me a chance to run to Target last night and stock up on hospital/car activities. As she gets older, there are so many neat things for her to do to keep her occupied during these stays. We're going to make necklaces, and I found some cool paint rollers and stamps that she is going to *love*. I forgot to mention a big first for Annika a couple of months ago, before all this began. She stepped onto an escalator! OK, it doesn't sound like much, I know, but she was really really excited. She's always been fascinated by escalators, as most kids are, I guess. So we stood there at the bottom of the escalator for quite a while, as she worked up her nerve. We had to move back to let several groups of people go by, some of whom gave her some words of encouragement. Finally, with a big breath, and a little tug from mommy, she hopped on and rode all the way up and then back down. She had such a proud look on her face! Anni has still been having a good time helping me bake, but she has discovered how much fun it is to spoon baking powder into water and watch it bubble. So I usually give her her own bowls and spoons to concoct her own mess while she occassionally contributes to the effort. She "contributed" last week by dumping a bunch of extra baking powder into the dough, but the cookies came out OK anyway. I guess she is trying to cure me of my obsessive perfectionism in the kitchen!

Monday, March 22, 2004

OK, so I didn't write last week to let you all know about Anni's labs. They didn't get better, but it was decided to give it one more week and hope for the best. Today's labs are even worse, so we're headed back to have her admitted in Chicago tomorrow. They're scheduling an upper and lower endoscopy, a liver biopsy, and another CT. Depending on the results of those tests, they'll decide how to proceed. We just had a very enjoyable 3-day visit from Joerg's father from Germany. Anni ran around the house hollering, "Gampa! Gampa!"; and would then pause to ask, in a very sweet voice, "Can Gampa play with me?" Anni did her best to get Grandpa to laugh at her, as she fully enjoys the role of clown. She also learned to say, "Danke dir!" ("thank you") and counted (sort of) in German for him. We're looking forward to the day that we can take her to visit friends and family in Germany. I need to finish the get-ready-to-go laundry marathon, so more later...

Monday, March 15, 2004

Anni's latest labs have been a mixed bag--some have improved, while others worsened. Our transplant coordinator said he was "a bit bummed" by her numbers, and hoped to see improvement on today's labs. They have resumed her Prograf, and have been gradually bumping it up to get the rejection under control. Yesterday she had a pretty lousy day. She had a low-grade fever most of the day (101.3), and she was crying that her tummy hurt. She spent the day on the sofa watching her new favorite, Madeleine. However, by early evening she was feeling much better, and today she is in great spirits, with no fever and her belly a bit smaller. Frankie has been doing great. When last I wrote, I was triumphant over how easily she was taking to cereal. However, it now appears that the rice cereal is giving her troubles. She spent an evening in non-stop vomiting, and I won't go into details about the diaper situation... We were at first worried that she had rotavirus (actually more worried that she was going to give it to Anni, who had *huge* troubles with it), as it has been going around here, but she had no fever and stopping the cereal put an immediate end to her troubles. So we're going to hold off again a few weeks, and then try her on oatmeal instead. She is growing so fast, even just on breastmilk. She is a pro at rolling over now, and she can sit unsupported. She *loves* her sister's hair! All we have to do to stop Frankie crying is have Anni bend her head down to Frankie's reach. Luckily, Anni thinks that Frankie is so cool that she enjoys having her play with her hair. Anni has perfected singing "Rock-a-bye Baby" to Frankie while rocking her in the rocking chair (with mommy right there, too, of course). Speaking of singing, Anni has been cracking us up with her rendition of Bruce Springsteen's "Diddy-Wa-Diddy." She loves watching that video with her daddy (from the filming of the concert at Fenway Park in Boston), and she sings the song enthusiastically. Daddy even had her proclaiming to me, "I'm a rock-and-roll girl!" Anni is also into baseball now. Well, not really baseball as such, but tossing a plastic baseball onto the driveway and then chasing it as it rolls away from her down the slope, yelling like a banshee, "I'm gonna get it!!!" (which she seldom does, but that doesn't seem to detract from the fun). She also enjoys mailing rocks. Yes, rocks. She trots to the mailbox with me, puts the rock inside, and raises the flag. Then she waits a few seconds and says, "Let's see if we have any mail!" Opens the box and there's the rock! Yeah! She takes it out and puts down the flag. Then repeats the process. Many times. So we'll let you all know if we hear anything about Anni's labs today. Hope everyone is doing well.

Tuesday, March 09, 2004

We're home!!! Yeah!!! Anni's still on pretty high doses of steroids to treat the rejection, but we are hopeful that it is under control. Her liver numbers had already improved before we left the hospital. Her CT, unfortunately, still showed no improvement, but the docs have absolutely no explanation for that. They are now focussing their concentration on making sure the rejection doesn't get out of control, and just watching her closely with frequent labs. We're scheduled to go back to Chicago in a month, and no CT is currently scheduled, unless she has any more symptoms to make them suspicious. Annika is more immunosuppressed right now than she has been for a long time, so we are again having to keep her away from crowds and really protect her from infection. However, they are quickly lowering her steroids so that in a month she should be able to stop them again, as long as she doesn't show any more signs of rejection. That would be great, as I hate having her on the steroids again. As I was taking the elevator up to our room one day, it just hit me how much stuff we were pumping into her little body. There was a doctor from the floor in the elevator with me, and I asked her if it ever seemed strange to her the sorts of things that we do to keep these kids healthy, like hooking her up to 160 mg of IV steroids (which is a lot). She said that it did to her, too, sometimes. Even though I know that it is for the best, it really shocks me sometimes just what we are giving her. Amazing, and really not something I like to dwell on for too long. OK, just to let you all know that we are back home, and very happy to be here. Anni was excited about going to the hospital again, but we had only been there a few hours when she said, "OK, let's go home!" After that, she asked me on a regular basis when we could go home. Not that she didn't have any fun in the hospital-- Anni worked on several art projects, all of them featuring Elmer's glue prominently! She also made "letters" for the nurses and doctors, and had a great time delivering them. But she's definitely happier being at home...
Sunday, March 7, 2004 Sorry to take so long to update, but there are only 2 computers here in the hospital for parent use, so sometimes it's hard to get on-line. Annika's biopsy on Friday morning confirmed rejection, so she's being treated with high-doses of I.V. steroids, which means we get to see psycho toddler! Yes, it's amazing what a 3-yr.-old hopped up on steroids looks like... Mainly, though, she's doing a lot better than I expected her to. Last time she had this treatment, she was a non-stop screamer. Much better this time. We're having a CT on Monday, and as long as that goes well and her labs look better, we might get out of here Monday night. We will continue the steroids at home, tapering them down slowly.
Thursday, March 4, 2004 Well, Annni's labs from today looked pretty awful, so we're headed to chicago tonight to be admitted. She'll probably have a CT and biopsy tomorrow. We're headed out the door as quick as possible, so I'll let you know how things go tomorrow.

Tuesday, March 02, 2004

Looking at my recent posts, they seem very depressing, so thought I'd write something more cheerful. One thing that is important is that Anni is feeling absolutely fine. She's sleeping a bit more than usual, but otherwise she is her normal self, which means she makes a lot of fun for herself during the day. During Frankie's morning nap today, we made milk-free "chocolate" chip cookies (really, carob chips--thanks to Riley and Shelby's mom, Jennifer, for bringing chocolate chip cookies back into Anni's life!) Anni was her usual mischievous self, sitting on the counter top, trying to sneak in extra flour or sugar or baking soda into the bowl, and making a general mess. After Frankie woke up, she had a good time incorporating her beloved baby sister into several games today. Frankie loved it when Anni spun her around and around in her exersaucer, and Anni was delighted when all 3 of us hid under a sheet tent in her playroom. Then she took a plastic ring that she got recently in her "booty set" (beauty set!), and placed it on top of Frankie's head and said, "Oh, she's a princess!" When Daddy came home from work, Annika told him a story she had made up: "Once upon a time there was a little princess. She was a beautiful princess. What was her name? Her name was Princess Annika. She had a sister named Baby Frankie. She liked to play games and have fun." Later that night she came to me and said, "Mama Mia, I'm so sad! I'm crying!" But then I saw that she was trying really hard to hold back a smile as she asked if we could "be sad together!" So I knew that this was a new game for her. So we were sad together, until I said that I needed a hug to be happy. Then she gave me one of her wonderful, arms-really-tight-around-the-neck hugs, and then we played "happy together." Finally, we played a 3-way game of catch with an Elmo beach ball that Lauren gave her last summer. Frankie watched it all with her usual noisy squeals of delight. Tonight, Anni insisted that her daddy read her good night stories, and she went to bed in a really happy mood. As for Frankie, today was a banner day for her. She rolled over back to front *and* front to back: the first time she's done both directions. She ate her first bowl of cereal, and did a great job. Well, I actually tried her on it once before, a month ago, but it didn't really work all that well and then she got diarrhea... But today she took the cereal like a champ, opening her mouth for the spoon like a good little baby bird, and slurping it right up. Her babbling sounds are also beginning to sound downright conversational. So, there's also a lot of good stuff happening around her right now, too. Here's a picture of Anni playing princess I took recently:
OK, I think it's fair to say that we are freaked out now. This morning I got out of the shower and heard Joerg yell. I felt like my heart literally stopped beating, and I froze, thinking of all the things that could have happened with Annika. It turns out that Hepburn had caught a mouse, nothing wrong with Anni at all. But it's clear that our nerves are strung pretty tight right now. Anyway, I went downstairs to dispose of the poor little mouse (Hepburn headed straight for the basement with him), and found our other cat, Red, huddling under the sofa, refusing to come out. Only Big Red could be scared by a mouse. I have no idea how that cat survived on his own for the first year of his life. On to Anni's news: The docs have decided not to restart any immunosuppression, so as not to risk making the PTLD worse. I guess the thinking is that, even if the rejection gets really bad and they can't get hold of it, there is still a chance they can retransplant. On the other hand, if the PTLD gets really bad, going into full-blown lymphoma, there is very little to do, as it does not respond well to chemotherapy. Keep in mind, though, that nobody is talking retransplant at this point. It may well be that her CT next week will show improvement in the PTLD, and they will be able to restart immunosuppression and get the (possible) rejection under control. So for right now we're still waiting. I told Joerg that the longer we can keep her out of the hospital, the better, as kids always seem to pick up all sorts of yucky bugs in the hospital. Of course, the best treatment for PTLD is to stop immunosuppression, and we can do that just as well at home! Thanks for all your encouraging notes!
Anni's latest labs (yesterday) are not good. They seem to indicate that she is going into rejection. We are waiting on pins and needles to hear what Chicago is going to do. The problem simply is that many of the immunosuppressive drugs used to ward off rejection can make PTLD worse, which is certainly not something we want to do. I imagine it's going to be a hard decision for the docs to make, as this is truly a rock and a hard place. I'll let you know what we hear.