It's been a good week here. My parents came to visit last week, which is always cause for much joy for the Anni girl. We had wonderful weather, so we all went to the McLean County fair twice. The pony rides! The petting zoo! The carnival rides! Anni had a huge smile permanently affixed to her little face. She also had a great time passing out organ donor awareness balloons. People were always amazed when I told them that she was a liver transplant patient. I hope that it gave people a chance to see how well transplants work, and how important organ donation is. We will always be eternally eternally grateful to my cousin, Cliff, for donating part of his liver, but I sure do wish that more families would choose to donate so that noone would ever have to undergo such major surgery again. Only about half of all families who are asked agree to donate their loved ones' organs, even when that person has signed a donor card indicating that they want to be donors.
Anni's imagination is in high gear lately. The doll house has been just great for all her pretend games. Tonight I was upstairs playing with her, while Frankie growled and crawled around in the middle of the toys, giggling uproariously whenever her big sister made eye contact with her. Annika very carefully arranged the dollhouse to her liking, very precise in her weird little 3-yr-old way (2 toilets in the bathroom, beds in every room, towels stuffed in the oven...) Frankie trundled over and pulled herself up on the dollhouse, then stood there like a wobbly Godzilla flailing her arms to send all the furniture flying, laughing in her vaguely menacing baby way. Of course, Anni cried, "Oh, no, Frankie!!" Then she looked at me and shook her head and said, "She just doesn't understand..." I pulled Frankie over to the other side of the room and gave her some different toys, while Anni began matter-of-factly to restore order. I was really impressed at how calm Anni remained during this scene, especially since she has been trying out "drama queen" as a new persona. A few minutes later, Anni informed me that all the babies were in bed, and that they were going to get a surprise in the morning. As this was her fantasy world, 30 seconds later it was morning time and everyone woke up and piled into the car (the dog rides in the trunk, as usual). Anni drove them over to her little stable, and announced that the surprise was a pony! Totally her dream right now, as she was so in love with the ponies at the fair. She has 3 ponies, "Comet", "Twinkle", and "Nibbles". The names came on the boxes--if she had been in charge of the names, they never would have been so conventional (her latest doll is named "Salt"). Anyway, the chosen pony was Nibbles. Only, Anni pronounced the name, "Nipples." Well because I didn't get enough sleep last night and have just turned 8 years old, I just couldn't stop giggling everytime she said "Nipples." Anni gave me a very disgusted look and said, "Stop laughing at me, Mom. That is soooo annoying!" Of course, she can pronounce "annoying" perfectly...
Annika has an imaginary pet, a baby squirrel named Kelly. She "rescued" him outside one day a few weeks ago, and he's been with us ever since, causing much mischief--hopping into her morning yogurt, splashing in the bathtub, making general messes (roll eyes). She's been asking for a guinea pig and a hamster, but seems to accept our explanation that a 2-cat household is not the best place for little rodents. Thank goodness. Annika is pretty pleased with Hepburn lately. I guess the old lady has finally adjusted to the idea that we now have children, and allows Anni to pet her. Annika is thrilled with *her* cat! I'm sure Red will finally adjust, too, but I imagine it will take him maybe 4 more years--psycho cat that he is.
We just returned from a trip to Chicago a few weeks ago. Annika had another checkup CT scan, which again showed her lymph nodes unchanged. Some of her varices have gotten a bit worse, and she may be collecting fluid in her belly, but overall her doctors were pleased with the results. The stuff that's getting worse is par for the course, given that she has a major blood clot, but she could be getting worse much more quickly. Mainly she seems back to holding her own again. I have been so impressed with her lately. About a month ago, she suddenly decided that she no longer needed to sit in my lap for blood draws. So now she just hops in the chair all by herself and holds out her arm with the good veins. This was the first CT she's had for a while without a PICC line, which meant that she needed to have an IV placed that morning. In all the other rooms we heard the nurses through the curtain telling the kids not to look while they placed the IV, but Anni told them that she really wanted to see, and she watched them the whole time. She held completely still, and was just perfectly cooperative. She drank the contrast without even a protest, and sat still while we waited our turn. Boy, it is amazing how much easier these tests are when your child actually feels good! They are just so much more capable of dealing with it all when they're not sick. One of those unfortunate ironies that those kids that need the tests most are those for whom they are most difficult.
Of course, I also reflect sometimes on the things that Anni does not do so well. Like the fact that she is a super picky eater, and just will not eat what Joerg and I eat at mealtimes. On the other hand, she does eat relatively healthily. Relatively. She really likes carrots and green peppers and apples. Basically, if it crunches, she will eat it. It would be nice if she would eat what we eat, though, especially as Joerg and I do make an effort to eat healthily most of the time. On the other hand, it has occurred to me that she learned to eat in a really weird situation--in the hospital with a food tray being brought up to her. So her first experiences with food got her very used to eating her own "special" food, and not what mommy or daddy ate. On top of that, I watch how readily she allows her blood to be drawn, her blood pressure to be taken, how she breathes in and out on cue for the nurses and doctors listening with a stethoscope, and think to myself, "Well, how many kids her age can do that?" I guess that's one reason that it's nice to know other "liver families," as many of them have had these same thoughts and problems.
Speaking of which, we went to Chicago the day before her CT and met up with another liver family. Anna is 1 year younger than Annika, and it turns out that she was at Children's having her Kasai at the same time that Anni was hospitalized after her second transplant, but we didn't meet up then. Annika had a great time at the zoo with them, and we're hoping to get together with them again soon. And Anni's great friends, Riley and Shelby, are coming for a visit this week, which we are really looking forward to.
Annika is going to start preschool in September! It's only 2 days a week for 2 hours, but it feels huge. Anni has already met her teacher, Mrs. Val, and she really likes her. Her class will only have 8 kids, with 2 teachers, and she will be in class with her new friend, Gillian, whom we met in Ballet class this summer. Gillian has a genetic immunodeficiency, so her mom and I have bonded over the difficulty of trying to keep immunosuppressed toddlers healthy. Plus, Gillian loves Anni's pretend games, too, and is just as energetic and outgoing. On top of that, Gillian also has a new baby sister, so the girls have a lot in common.
Annika's baby sister is continuing to grow ever more adorable. She now loves to wave, especially at her Dad, and she also enjoys clapping and is just beginning to blow kisses. Annika and Frankie have a few games they play together. A highlight of Frankie's day is getting to take a bath with her big sister. She watches Anni very carefully to imitate what she does. Thus, when Anni puts her face in the water to blow bubbles, Frankie does too, only to come up sputtering (but happy). Frankie's favorite game is "splash together." Frankie begins to splash in the water, and then Anni joins in and they both laugh uproariously. Frankie and Anni also like to play "scream together," usually in the kitchen for some reason. The game is exactly like it sounds, and although they think it is great fun, I can only take it for about 10 seconds. Luckily, Anni understands the concept of "indoor voice," and also that sometimes Frankie does things that she isn't allowed to. Usually if I distract Frankie with a new food or a toy she also stops screaming. By the way, this is not an unhappy scream that these girls do, it is purely joyous "test out my lungs" kind of scream, but no less hard on the eardrums.