No transplant clinic until 2014??? Woohoo!

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Just chillaxing with Dora on the TV

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.

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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!

Love,

Elaine, Aaron and Addison

8 thoughts on “No transplant clinic until 2014??? Woohoo!

  1. Wow!!! That is great news!!! Hilarious how upfront and direct the princess is!!!! Haha!! Go Addie!!! You tell them how it is!!! 🙂

  2. Absolutely wonderful. I do not remember my kids being so outright with their thoughts lol Yep you vould have your hands full with her. Keep it up Addie………..

  3. A reprieve for all of you. How lovely! I guess I will refrain from sharing with Addie that dark CHOCOLATE is high in iron … think that might come back to haunt you?! If she’s ever looking for it … bet you can find some in Susan Lee’s desk! Hugs to all.

  4. We spent all day Friday with our 26 month old at her transplant clinic. She, as usual, got upset during her echo. When we got home I was reading your blog and shared the picture of Addison getting her echo with my daughter and she spent forty-five minutes looking at it and asking questions: “Why her heart no work? Why her get new heart? Why her get echo? Why her no scared? Why her no cry? Why her arms go like this?” (then she would put her arms behind her head like Addison). Over and over she asked these questions. So Addison has an admirer and maybe will even inspire another little girl not to cry during her echo!

  5. Oh my. Look out Dr. Human, Addison’s got your number! I can’t say much that hasn’t already been said, what a nice long break in clinics for you all and nice to hear the iron supplement’s being shelved for now. I seem to remember the dark chocolate in Slee’s desk too…

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