“i am in such a rush that i won't even bother with capitals! many of you already know that we've had rose back in the royal children's hospital for the past 2 and a half weeks, and there's no news on when she might be coming home.

this time, things have been more serious than ever, medically speaking, and rose may end up being activated on the waiting list for liver transplant as early as this week. there's lots of stuff clouding the waters though, not least of which is the fact that we're waiting to find out whether or not she also has cystic fibrosis!!!! (i know! can you believe it? we're having trouble getting our heads around that notion too!)

she has pneumonia too, but apparently that's the least of her worries. anyhow, i've cried my eyes out, but have pulled myself back together again over the past few days. when i'm with rose she seems as spirited as ever, and i know she'll give it her best shot. she gives me strength. . . . rose's liver specialist, has of course warned us that tiny babies, let alone tiny sick babies, (let alone tiny sick babies with cystic fibrosis! fingers crossed that she won't have that as well) have the odds stacked against them surviving transplant surgery. then there's the recovery. . . but she has also reminded us that some babies do beat the odds. she brought in the inspirational transplant surgeon. . . to talk with us last week. we've met him before, but he's becoming more involved with us, now that rosie's liver disease has progressed so rapidly. he loves his work, and we were relieved when he told us that he had expected rose to look a lot sicker than she actually does. he said he is impressed with her spark.

they reckon that if rose doesn't start gaining weight by the end of this week, then they need to bite the bullet and proceed with transplant as soon as possible, before she becomes any sicker. we hope she can gain some weight, but their thinking makes lots of sense to us if she indeed can't grow any more with her failing liver. we're enjoying rose so much, and try not to jump ahead into hypothetical territory - it's a cliché, but we really are just "taking each day as it comes". we know you'll all be wishing her luck. while you're at it, maybe you could help us circulate a reminder to consider discussing the painful subject of organ donation with your families? i know that many of you have already done so, and i also know that it's a very personal and difficult consideration, so no pressure intended.

the line that you've probably heard in the media is that "in australia the chances are that you are far more likely to need an organ yourself than you ever are to give one". anyhow, if you're interested, it's a simple matter to register. here's a couple of starting points: -