When Addison first got released from hospital post-transplant 28 months ago, we were back there at least once a week for clinic. The frequency of our appointments has slowly decreased since then, but we never really progressed more than two months, maybe close to three, between visits. There always seemed to be something going on with the Princess. Well, yesterday at clinic, the medical team decided we did not need to come back for four months!! No clinic, biopsies, kidney tests, extra stuff until January 2014. We will still need to go for monthly bloodwork but – fingers, toes and everything crossed – that will be it.
Addison was quite the superstar at clinic. She happily laid down for her echocardiogram (Dora was up on the TV) and even helped remove her own ECG stickers. This is the first time post-newborn phase that she has been so cooperative. The exam room was packed because the cardiac transplant team from Toronto’s SickKids was here on their annual trip. The Princess impressed the crowd with her boundless energy and witty conversation.
We have been hearing endless warnings from other transplant parents and medical professionals about the trials and tribulations of living with a transplant teenager. Many teens don’t stick to their medication regime because they don’t feel sick, and of course they know everything. I’m afraid we may have a bit of that rebellion already. As soon as Addison saw Dr. Human, our cardiologist, she pointedly told him, “I don’t like that medicine.” Over the past few months, we’ve had to go back on iron supplements (which smell and taste like a rusty nail), and our opinionated toddler has been exercising her right to free speech. Finally, in exasperation one night last week, I told her, “Dr Human wants you to take this.” Her reply to me was simple, “Tell Dr. Human we don’t like that medicine.” I laughed of course and said she’d be able to tell him in person. Which she did. He, very wisely, has agreed no more yucky medicine. We’ll focus on dietary sources of iron from now on. Bring on the beef!
Elaine, Aaron and Addison