Frankie has been getting up to a lot of trouble lately! I guess she's pretty proud of her newfound ability to make waves! Two days ago Annika and I went outside, as we do pretty much whenever Frankie naps, to mess around in the yard. Frankie had fallen asleep on the way home from our walk on the quad at IWU, and so I had just left her in her car seat to nap. Of course, the straps seemed a bit tight, so I undid them so that they would not cut into her neck as she slept. I took the monitor outside, and Anni and I were loving the beautiful weather. While I put down landscape fabric around the lilaac (tired of mowing around it), Anni "watered" her flowers by loading up her little watering can with sand and pouring it over the poor little plants. OK, so they probably won't survive long with that treatment, but she was having a good time and I was getting work done, and besides if the plants die, then she will understand when I tell her not to do something because "the plants won't like it." So, anyway, I heard Frankie wake up with her usual, little happykins baby sounds. In the middle of stapling down the fabric, I went ahead and finished the row I was working on. Then, suddenly, she let out a wail. So I hurried to the house, but by the time I had my muddy shoes and gloves off and was on my way upstairs, she had already stopped crying. Relaxing a bit, I opened the door only to discover that the car seat was empty! Baby was nowhere to be seen! Tiny moment of panic, until I spot her on the floor, several feet away, happily tearing apart cotton pads she had discovered within her reach. No more unbuckling that little explorer! I had no idea she had that kind of strength. Of course, the car seat was on the floor over a rug, so she wasn't injured at all in her little escapade. Frankie has also gone hog-wild with her raspberries. She raspberries to let us know she's happy. She raspberries to let us know she's mad. She raspberries to let us know she's tired. Yesterday, I tried to put her down for her nap before she was ready to be out of my arms. Eyes half-closed, she scrunched up her little nose and let out a tired little whimper raspberry. Imagine her delight when she discovered that raspberrying while mommy attempts to feed her squash results in amazing flights of orange mush off the spoon and into mommy's hair, face, and lap. Speaking of feeding, this is the one area in which Anni was a much easier baby. Annika took to eating solids like a champ, while Frankie wrinkles her nose, grimaces, sticks out her tongue, and generally seems uninterested in branching out from breast milk. Nevertheless, she continues to grow like a little junior Sumo wrestler. Her 6-month checkup found her still at the top of the growth charts. This is the first week since last December that we haven't had any labs drawn on Annika. The docs told us that the new med she's on will need 2 weeks to show any effect, so we have to wait until next Monday to have them drawn. It was kind of nice, not spending all of Monday waiting anxiously to hear the lab results, hoping that they would be better, but always getting the call that the numbers were still worsening. Nice to get away from that this week. And now we are really really really hoping that this new drug does the trick for her, and her labs show improvement next week. We are all so sick of the hospital. Annika continues to be fascinated with worms. She invents all sorts of stories about them and their fascinating worm lives. She pointed out a worm that she had found in the soil I had been digging up, and explained, "That's the Dr. Weaver worm." The other worms were going to visit him to have their ears checked. She is also becoming a little back seat driver. She has a fit if daddy moves the car before I've buckled my seat belt. And yesterday, as I was trying to find a parking spot at the university, I had to back out of the main parking lot when I discovered it was full. It's a long narrow shape, with no good place to turn around. Annika shouted, "Mommy, you're going the wrong way! It's a ONE-WAY, Mommy!" She frequently informs me which way she'd like to go, and sighs forlornly if I fail to heed her directions. "Mommy, you MISSED your turn..." She still loves playing princess and taking her dolls to "doll school", but she definitely has some tomboy tendencies, too. Today we went for a walk in the neighborhood and saw the Ogden boys (6, 4, and 2-yrs old) out playing. So, of course, she had to go join in (after mommy checked that everyone was healthy). She had a great time with all their trucks. Anni found a bug in the grass, which she promptly picked up to show Mark (4-yr old). Mark said, "Uck!" Anni giggled, and shouted, "Buggy, buggy!" and then chased him around the yard, waving her bug menacingly at him. I'm not sure how the bug fared in this game. We're going to have to start having the "respect for living creatures" talk soon. Another game she has enjoyed playing this week is "Time for Frankie's X-Ray!" The funniest part about this game is how she always makes sure that I have on my "lead" before she starts the machine. She is also very careful to check that the pictures are good before letting Frankie sit back up again. She has the whole routine down! At least she has not tried to give Frankie an NG-tube. That's the procedure she performs (carefully, at least) on her petunias!

It looks like Anni is still rejecting. Grrrrrrrrrrr! So we have added yet another immunosuppressive drug to her ever more complicated regimen, a drug called CellCept. She is now more immunosuppressed than she has been since shortly after transplant. We're not sure why it is so hard to get this rejection under control, when she's never really had much problem with it before, but we're dealing with it. I guess her little system has been through a lot this winter, and so maybe that's why this rejection just won't go away. Luckily, though, cold and flu season is over and so we can let her hang out with other kids again. Hopefully we'll have her off the extra immunosuppression by next year. Frankie has now moved into Annika's old crib. Last night was her first night sleeping alone. Needless to say, she was none too pleased about the new arrangement, but I'm looking forward to getting more sleep at night! Although she cried for the first hour (I went in to reassure her ever 5-10 minutes), she soon found her thumb and slept incredibly well, so I think it will be good all around...

Today Anni, Frankie, and I went on a walk around the neighborhood. Anni loves checking out the flowers in all our neighbors' yards, and she'd walk right up and ring all the doorbells to say "Hi" if I let her. In her investigations, she found a bird's egg that had blown out of its nest. I looked around to see if I could find the nest, although I doubted that much could be done for the egg, as it was pretty cold. I couldn't find the nest, so I told Anni to put it down in the grass. "So it can hatch?" she asked. "Yes," I said, preferring not to go into detail about how baby birds can't hatch from eggs if they're not kept safe and warm. So she put it down in the grass and said, "Let's watch it hatch!" I explained that it would take a long time before the baby bird would hatch, and we needed to continue on our walk. Of course, she decided that the egg needed to be closer to the tree, so she picked it up and took it over, but she is a 3-yr.-old, so, yup, the egg broke on the way over. Anni looked at me with complete horror in her face. "Oh, no! I hatched it, mommy!" Then she looked at the gunk covering her hands and looked a bit confused. "Mommy, there's *no* baby bird in that egg. That's just a little breakfast in there!" Oh, boy. It's hard to explain the world to a kid, isn't it? She also enjoyed going to the little local zoo this morning with daddy. Evidently, the turtles were a big hit. She now enjoys making up stories about the things she sees in the world, so she explained to Joerg that there was a mommy turtle, a daddy turtle, and a Lauren turtle! (Lauren is her former babysitter, who still visits her regularly-at home and in the hospital) Pretty funny! Her cousin, Darcy, has also been featured prominently in some of her stories. I remind her that she also has a cousin Rayna (Darcy's sister) and a cousin Audra, but Darcy drew the pictures that are on her playroom walls (and decorated her hospital room around her transplant), and even wrote a book for her, so Darcy is her big idol. Annika has been feeling great this week. No diarrhea, and no tummy pain. We've been getting out and enjoying the lovely weather every day. We even went to play group for the first time since last November, and Annika was just ecstatic at seeing her friends again. There really weren't too many kids there, and Anni was astonished to see that her little friends, Daniel and Sam, also had baby sisters, too (2 other moms had babies within a few weeks of Frankie--all girls!). Annika's big change this week is that she has now moved into a "big girl bed." I have moved the crib into the playroom, and now I just need to get Frankie used to sleeping in it--and sleeping through the night. Frankie is now a 20-pounder! And she has 2 new teeth! I can't believe how much she is changing every week. Her main form of communication right now is blowing raspberries. They are just the cutest little things. She starts by wrinkling her nose and smiling, and then she sticks out her little tongue, and then blows out a big raspberry. If you blow a raspberry back, she's absolutely delighted, and will reward you with many more. Of course, we're still germ-conscious enough that I respond with a drier lip raspberry (you know, where you make a motor boat sound...) OK, I have not updated the movies as promised, but I will get around to it soon...Only 1 more week of classes for Joerg, then finals! That's it from our corner of the world. Labs are tomorrow, and we're hoping they look better so Anni can get rid of her I.V. I can't give her a "real" bath until it's out, but she's been getting way too dirty for sponge baths!!

We are home! Woo-hoo!! Anni again made quite the exit from the hospital. She marched through the lobby calling, "Good-bye, everybody!" and singing (loudly) a song from her new Madeleine movies that goes, "Home, home. We want to go home!" Anni still has some pretty impressive diarrhea, but we're upping her oral supplements and decreasing her immunosuppression, so it looks like we have the upper hand. They are also starting her prednisone taper again, now that we are hoping the rejection is under control, so maybe we'll also have our old Anni back again (energetic, but not hopped up on steroids :-) !) We have labs drawn tomorrow, so we'll see what her bloodwork has to tell us. Right now, we just want to stay away from Chicago--an opinion held by us all! Today I was mulching around a line of bushes in our backyard. I told Joerg, "Now if we have to go back to the hospital you don't have to worry about mowing around these silly bushes." Anni looked up from her work (digging with a Big Bird shovel) and said very emphatically, "I *don't* have to go to the hospital!" Today was a good day for her. We had an Easter Egg hunt around the yard, and then we planted some flowers that her grandpa Bond bought for her while she was in the hospital. We'll see how long they live, given that she wants to water them every 5 minutes and she also enjoys taking her Big Bird shovel to them! Hope you enjoyed your Easter as much as we did...

The latest news here is that the docs are thinking that perhaps something else is going on with her. They said that she is pooping way more and way longer than is usual for a simple viral infection, so they are stumped. We're still waiting for lots of tests to come back, though, so maybe that will give us an idea. Meanwhile, her electrolytes are still not stabilizing (she's very dependent on the stuff she's getting through the I.V.), so I don't think we'll be getting home today. As they don't have any idea what is causing her problems, they also don't have any idea when we might get to go home... The weather here is wonderful, though. I got out yesterday to go to the grocery store to buy Anni some more chocolate soy milk. It did my spirits a world of good just to get out of that place. Poor Anni can't even leave her room! Right now, a volunteer from the hospital is up there, and Anni is enjoying talking her ear off. She just loves having someone new to tell all her stories to. Right now she's particularly fond of telling the story of her Foley catheter (the catheter inserted to catch urine)!

Hi, We are still in Chicago at the hospital here. She got sicker so fast in Peoria that they decided to move her to intensive care a few hours after admitting her. However, the medical director of the intensive care unit decided that the best course of action would be to simply move her to Chicago, where they are better equipped to deal with her complicated case. They were going to helicopter her there, until Joerg discovered that they were planning on taking her alone. As they had not told us this ahead of time, there would have been noone there to meet her. He asked if she was stable enough to go by ambulance, and they said yes, so they went together the next morning. She was one sick puppy. Joerg and I both got whatever she had, and we felt absolutely miserable, but were mostly over it in 24 hours. They still have not identified the virus that caused her illness, but the suspicion is that it may be the stomach bug that was sweeping through the cruise ships last summer. However, she was feeling pretty much back to normal today. She got unhooked from her I.V. for an hour, and we made a "clubhouse" in the little isolation hallway between her room and the rest of the hospital floor (she is in isolation for obvious reasons!). Then my friend, Jennifer (Riley and Shelby's mom--Shelby is waiting for a liver transplant) called, and Anni got to talk to Riley on the phone. Riley is a year older than Anni, so Riley was very civilized, asking "How are you feeling, Annika?" Anni just got a gigantic grin on her face and then let loose with a bunch of happy nonsense babble. She has gone back to uttering a bunch of nonsense since Frankie's arrival, I think because Frankie is such a babbler. Anyhow, she thoroughly enjoyed that conversation. Then in the afternoon, I got her free of the I.V. for 15 minutes and she had an easter egg hunt around the room (I filled some plastic easter eggs with nutter-butter bites!). I thought in the afternoon that we were headed in the right direction, as her diarrhea seemed to be easing, but then it picked back up again to my frustration. I decided it would be best to make light of the fact that she was pooping again (I had told her earlier that we could go home when she wasn't pooping so much, and I didn't want her to feel bad), I started singing the theme from SpongeBob Squarepants, but replacing it with "Anni Poop Pants." Annika thought that was hilarious, and for some reason, so did Frankie. So for a good solid 10 minutes, we had both girls laughing their little heads off. It was pretty funny! Well, I don't know when we'll get home. Anni is still getting fluids and electrolyte replacement at pretty high levels. Maybe tomorrow, if we're lucky...

Well, it looks like I spoke too soon. Anni is in the hospital again.  She got incredibly sick last night--non-stop vomiting, terrible diarrhea, and a temp of 104.9  She is feeling so terrible that she didn't even fight the rectal temp or the urine catheter. We know that she's feeling just awful when she doesn't have the energy to struggle against such intrusive injustices! We're still waiting to hear about the cultures and other labs that they have drawn. Meanwhile, she's on IV fluids and we're just waiting for her to start feeling better. We'll let you know if we hear anything...

We had some very great news last night. The report that I received just before leaving the hospital was wrong--Anni's lymph nodes are significantly smaller! Hooray hooray!!!!! I guess the resident was looking at the report from her CT 2 weeks ago, rather than the new one. This is really really good news. We were also told that Anni has c-diff again. This is a bacterial infection of the intestine that she has battled many many times before. It could account for the inflammation in her intestine. Although we aren't happy to have to deal with c-diff yet again, it's *much* better than having to deal with a CMV infection, which was one of the possibilities raised to account for the scope results. Some very welcome good news for a lovely weekend.

We are back from the hospital stay that I was dreading *so* much. We can't believe that we are back so soon, as everyone at the hospital seemed to be thinking that we would be there at least through Saturday receiving another round of I.V. steroids. So it is fantastic that we are back home! OK, here's the story: We drove to Chicago on Tuesday, where they admitted her and began prepping her for the tests the next day. My mom came with me, much to the delight of Annika, who thinks Grandma Bond is just *so* much fun. Joerg had to stay home to teach his classes, as he has already had to ask his colleagues to cover for him during our 3 previous hospitalizations. This is the busiest time of year for him, and he really needed to be there. The first night was no fun whatsoever. She had to get another NG-tube (the tube that goes through your nose down to your stomach) to get a special concoction called "Golytely", which is the most inappropriately named stuff ever. It makes you poop non-stop, and there is nothing "light" about it. Of course, Anni fought the NG-tube with all her might again. It took 4 people to hold her down to get it in, and we were all sweating with the effort of it afterwards. The only good thing that came of this was that she was so exhausted after fighting so hard that she went right to sleep once they were done (at 11 p.m.), and did not even wake up when they began the Golytely treatment. However, at 4 a.m. she had such a gigantic poopy that everything in her bed got covered with poop. Luckily, I had already moved out her dollies, but her favorite Princess nightgown got covered. So after that she was awake and pretty unhappy. I moved my cot over by her pump and she, Frankie, and I all curled up together and watched Beauty and the Beast. At 6 a.m. Anni could wait no longer to see her Grandma, so we went to wake her up in the family room, where she was sleeping. By this time, it had been nearly 24 hours since Anni had anything to eat, and 7 hours since she had had anything to drink. So she was *hungry*. But they were at least able to remove the NG-tube in the morning, which made her happy. She finally went down to the O.R. for her procedures at 1 p.m., and I have to say that she was an awfully good girl for having nothing to eat since 9a.m. the previous morning. She was absolutely not about to let the docs take her away from me, though, even after they gave her the "happy juice" (a shot of Versed that turns her into a talkative little clown--actually that's her all the time...) So I got to go back to the O.R. suite with her and hold her until they put her to sleep. The whole thing only took about an hour and a half. They took biopsies from her liver, stomach, and all throughout her intestines. They also visually inspected her esophagus and intestinal tract. The results of all the tests were: 1) The good news is that her liver looked much better than expected (her lab values had been pretty terrible lately, so it was a pleasant surprise to see how good the liver looked). There is still evidence of rejection, but they said that it looks as if it is slowly resolving, and therefore no extra steroids were needed. Hooray!!! 2) Her intestines were quite irritated, showing lots of inflammation. However, the inflammation looked consistent with some sort of acute infection, rather than a chronic problem. This might account for some of her problems with diarrhea and stomach pain, as well as her liver numbers skyrocketing. They took a stool culture to see if they could identify a particular infection that would be causing this inflammation. It could also be a viral infection, which would be hard to pin down. They are checking for the major viruses that can cause problems for transplant patients. The doctor said that her intestinal tract looked consistent with CMV, which can cause problems. Her colon also bled profusely when the scope went there, but they think that that was just from her abnormal blood clotting. 3) The yuckiest news is that she has developed varices in her esophagus. Varices are essentially blood vessels that have ballooned up because of increased pressure. The varices are a direct result of the blood clot in Annika's portal vein. Because a major blood passageway had become blocked, the blood backs up and causes the increased pressure. The blood vessels in her esophagus have become quite swollen, and put Anni at risk of a major, life-threatening bleed if one of the varices should suddenly burst. The doctor said that most of the varices were pretty small, but that she has one really really huge one. That would be the one that we worry about. However, none of them were bleeding when they went through with the scope, which is good. So we'll have to keep a close eye one her, and hope nothing happens with that. 4) There was no sign of PTLD anywhere. Hooray again! Anni really didn't wake up from sedation until 8 p.m., when she snarfed down a whole plateful of chicken strips, fries, and carrots...followed by a package of Teddy Grahams and quite a few milk-free vanilla sandwich cookies. And lots of water. She went back to sleep at 11:30, and we all got a good night's rest. The next morning, Anni was again not allowed to eat, as she was scheduled for a CT scan to check on her lymph nodes first thing in the morning. Of course, the CT lab had several emergency scans, and it was after noon before they sent up the contrast for her to take. Unfortunately, she again refused to drink it and so she had to have another NG-tube placed. Again, 4 people were required and I was so much more nervous, realizing that the tube is going right through the esophagus where that gigantic bleeder is sitting, just waiting to cause problems. My nervousness was increased when Anni began to bleed quite a lot through her nose. We finally did get it in, though. Again, exhausted from fighting so hard (the nurses there place a lot of NG-tubes and see a lot of fighting against them, but they are all amazed at how hard this girl fights them), she fell asleep in my arms. The CT again showed absolutely no change at all in the lymph nodes. This is getting frustrating, but I am also beginning to worry a bit less about them. Her immunosuppression has been upped to deal with the rejection, and one would think that if the lymph nodes were going to get bigger, that they would have already. Now, why they refuse to go away is another question. However, the results of the CT did not come back soon enough for me to have a chance to talk to any of the docs about it. Essentially, they told me at 5 pm that as long as the CT did not show any increase in the size or number of nodes that we could go. At 6:30 we finally got the message that it showed no change and so we just scrambled to hit the road. We'll talk more to the docs about it next week. Right now, we are scheduled to go back to Chicago next week to have her checked out again. We'll see if maybe we are allowed to move that back a couple of weeks to give us a little breather from Chicago. Anni was so happy to be released. As we went down the elevator she asked, "Where are we going?" When I told her we were going home, she got so excited she could barely contain herself. As we went out through the main lobby, Anni was holding her Grandma's hand, marching along, chanting over and over in a happy sing-song voice, "We're going home! We're going home! We're going home!" Everyone we passed laughed at her unabashed joy. While at the hospital, Anni and Frankie both enjoyed going to the infant/toddler play group that the hospital sponsors. It's a great thing for kids there, as the hospital screens all the children very rigorously for any sign of contagious illness, so you know that she's not going to be around any sick kids. She has really really missed being around other kids, so this was a great thing for her. Really just a handful of kids come to it (probably because they do screen so rigorously, plus a lot of kids in the hospital just don't feel up to a playgroup). Anni had a blast, and so did Frankie, who loved seeing other babies. There were a couple of "liver babies" there, babies who were quite obviously waiting for liver transplants (they were very jaundiced and quite small for their ages). Anni loved seeing the other babies, and got very busy bringing them toys and making funny faces to them. She was also eager to show them that she had her very own baby, Frankie! The funniest thing that happened, though, was that Anni became an anti-NG-tube activist! Both of the liver babies were getting continuous feeds through NG-tubes (lots of little ones with liver problems need lots of extra calories, as they just don't grow). Anni was very distressed to see that they had the tubes in their noses, and she asked the volunteers who were there with the babies (neither of them had parents staying with them, another sad thing) if they could take out the tubes, please (have I mentioned that Anni is very polite?). The volunteers explained that the tubes had to stay in the babies' noses until the doctor said it was OK to take them out. So Anni sat for a minute, mulling that over, and then grabbed a volunteers hand and pulled her to the door, saying, "Let's go find a doctor!" The volunteers were definitely not expecting that, and so they scrambled to find someone to play "pretend doctor" for her. Anni wasn't falling for that, though, and so they had to explain to her that the doctors were all very busy right now. So Anni went back to playing, but as soon as someone stepped in the door with a white coat on (it actually was our transplant coordinator coming to tell us her schedule was delayed, not a doctor) Anni ran right over and asked very nicely to "Please take the tubes out to the baby's nose!" (she says "out to", I guess to make it match with "in to"). She was really campaiging hard to make the 6th floor an NG-tube-free place! OK, well this has gone on long enough. Mostly, we are happy to be home and relieved that they did not have to increase Anni's steroids. Again, I'll keep you all updated as we hear from the doctors.

Saturday, March 27, 2004

The weather has warmed up nicely here, and Anni has enjoyed getting out and wandering around outside a bit. Yesterday there was a big rain storm in the morning, and lots of worms appeared on the sidewalks afterward, much to Annni's delight. She laid down on her belly and got her face right down close to them and yelled, "Hi, Mr. Worm!" The other outdoor attraction is dog poop. We were walking along and I said, "Watch out, Annika, there's dog poop." Oh, this was so exciting, she had to stop and look. I said, "Don't touch it Annika. It's yucky." She asked, "Can I watch it, mom?" I, naively, said yes. So she plopped down on her tummy in the grass, with her nose maybe a foot away from the poop, and, true to her word, watched it intently for much longer than I ever thought anyone would want to look at poopy. I actually had to insist eventually that she get up and move on. As we walked on, she cast a longing glance behind her and called out, "Bye-bye dog poopy!" Anni had us laughing yesterday morning. As she meandered sleepily downstairs, she suddenly looked up at me with her bright smile and asked, "Can I have 2 Quaker Squares before I have a cookie?" What a question! Notice that either a "yes" or "no" answer leaves intact the assumption that she'll get a cookie (at 7 a.m.--I don't think so!)... Annika has finally settled on a name for the new doll that her Grandpa brought her from Germany. It is, drum roll please...Berf! Yes, Berf. Like "burp" only with an "f" at the end. Like "barf" only with a... OK, you get the idea. I have no idea where she comes up with these names. Originally, we were calling her "Britta," but she decided that she didn't really like that and somehow it morphed into the distinctly un-cute "Berf." I tried several times to call her Britta instead, but she always corrected me, "Her name is Berf, mommy!" So now the dolls that she has named are: Tebby Tebby the Girl, Betsy, Carla, Debba (not Debra, but Debba), the Nurse Terry, and Berf.