After four months between transplant clinic appointments, our longest stretch yet, it was a little odd to finally be going back to BC Children’s Hospital for our usual routine last week. Echo, ECG at the Children’s Heart Centre, then over to see our transplant team. Addison was quite content to lay back and watch her Dora while everyone checked to make sure her heart was working. She keeps telling us, “My heart is working!” But you can’t always take a two-year old at her word.
Well, I’m very happy to report she was right on. Her heart function looks fantastic, she’s growing and getting stronger. However, her urea and creatinine remain higher than we would like. The cardiologist agreed her Tacrolimus levels have a little wiggle room, so we have dropped her dosage a teeny tiny bit yet again. We’re due for another Tac level this week to see how Addison is doing on this new dose. At 3.4, she is already at the lowest Tac target level of any of the heart transplant kids, but you know the Princess…she does like to be special. We walk a very fine line between controlling rejection, and managing potential damaging side effects to other organs.
While there is so much about life with Addison we never would have anticipated, I also never realized just how incredibly fun it would be. We are always laughing about something our Princess did or said (I’m starting to write down the funny little Addison-isms, the latest is “ear muffins” instead of “ear muffs”). And we are constantly surprised where she takes us, physically and spiritually. It is pure joy.
One night she picked up her old school string phone and made a call. I hope you can understand her toddler speak.
And the one doughnut MUST have icing and sprinkles, of course.
Elaine, Aaron and Addison