Well, we have yet another biopsy tomorrow for Bean. I have a feeling it will be a long day, but not nearly as long as her last biopsy day (wow, was that ever a doozie!). I hate to say it, but I think these days are just going to get worse and worse as she gets older and more aware of what is going on. She still doesn't seem to react poorly on arriving at places - for example, we get blood drawn here in Chico quite often and she is still perfectly happy when we arrive and even when we go back to the room where they do the draws. She doesn't get upset until they actually tie the rubber band thing around her arm...and boy does she get upset then! She has a great set of lungs... But, then, once they pull the needle out of her arm, she immediately calms down and will blow kisses to the woman who does the draws (who loves the Bean, which is nice). So, she doesn't hold a grudge either. But, she doesn't like to be restrained and during recovery from the biopsy she is supposed to keep relatively still. Last time was especially bad because she had the longer biopsy for the annual, so maybe it won't be so bad this time. We shall see.
We are hoping and praying for a zero this time as it would mean we would be able to stretch out the time between biopsies a little more (maybe move to 4 - 6 months in between instead of this every 2 month schedule we're on). It would be nice for her not to have to have them so often and it would mean we would space out visits to Stanford a little more as well. I'm glad they are keeping a close eye on her and trying to figure out the rejection levels...but, I am also starting to worry about access. I guess the biopsies aren't as likely to do damage like the lines she had in during her hospital stay, but usually there are four access points they can use to do these biopsies - one on each side of the neck and one in each groin. Bean has one access point - in the left side of her neck. The rest of her access lines have a blockage (not sure what it is causing the blockage - I was unclear on whether its a clot or scar tissue or what) that will prevent the cath line from getting through. Thankfully she has the one access point - and none of the doctors seemed to want to discuss with me what would happen if she lost this access point (one of them told me, "we're just going to think positive and say that we won't need to worry about that"...which luckily has worked out to this day). But, it worries me she is having so many of these biopsies through that access point. I hope it holds up.
Other than the low-level chronic rejection (which is what they call her repeated 1A status in the clinical reports), she is doing quite well. She is a ball of fire. She is babbling constantly, has a vocabulary of about 15 words now (and many, many more in her own head - but we can't understand any of it), can imitate just about any farm animal, and is a total ham. She definitely seems predisposed towards performing for people... On the homefront, she is a horrible sleeper and often spends about half the night in our bed because she seems to sleep better there once she wakes up in the middle of the night. Which is frustrating, but I suppose it could be worse. Her size is a challenge in doing all the toddler training things - even with a step she can't reach the sink to wash her hands because she is too short. She is still not quite 28 inches tall and according to the nutritionist last week, she weighs 17 lbs 10 oz. But, she thinks she is 6 feet tall and 340 lbs. She is not afraid of much of anything (well, okay, she's a little afraid of balloons - she likes to look at them from afar, call them by name "baon", but if one gets near her she really flips out) and loves to explore - everything!
Speaking of the nutritionist, Bean is now on Duocal (thanks to the other heart moms who sent me their extras...we're going to look into getting a prescription for it, but we're set right now with three cans) and benefiber (to try to firm up her stools a bit). I may start calling her Benjamin Button because she is on so many old people's meds! Lipitor, blood pressure med, now Benefiber...kind of funny. Anyways, the nutritionist says she is getting too much protein (because she gets most nutrition from her formula, which is high in protein, and for a while chicken was her main food source as well), so we're currently trying to diversify her diet. She has been off her Periactin for three days now (ran out a little early - more coming today) and I really can tell the difference in her eating. She doesn't have much of an appetite without it. She is still primarily on formula for nutrition, which is also frustrating, but I want her to keep gaining weight. We did discover she loves chocolate, so I got some Nutella yesterday and I'm going to try some of that today. I'm sure we'll figure it out...it will just take some time.
Well, I have many, many things to do today to get ready for our day away tomorrow! If you read this and think about it, please send some thoughts of "ZERO" our way tomorrow! I'll update later this week when we get the results.