I wanted to write a bit of a different post today. Quick update on the medical side of things though. Dylan remains in some pain but things are pretty well managed and didn’t get above a 5/10 yesterday from what she said, so that was really good. We’re a bit worried about the PCA coming out today but hoping that goes well. The nausea seems much better controlled now and we are hopeful that continues to improve. Taste wise things still aren’t great, but we got approved for a full liquid diet yesterday! 🥳 This includes things like blended soups, protein shakes, and pudding. We sampled some different flavors of pudding yesterday and settled on chocolate being the best. 😉 Blood sugars and measurements seem to be steadier and agreeing now, and liver enzymes are looking really really good. There was a little trouble with her PICC line leaking yesterday but they were able to get that unkinked.

However…

What I would really like to talk about is my niece. I have at many times in my life encountered strength, in quite a few different formats. Some of this can be mental, or physical, or spiritual, or temporal. What I want to say today is that I am seeing in this person, my niece …an earth shattering amount of strength greater than I have ever encountered before. And to see it at such a young age, I am absolutely floored. There are those times in life, where you can already know that words will not really do justice to describe the reality of what you are seeing. This is one of those cases where I can’t describe adequately her courage, resolve, patience, and positivity. It is beyond me to quantify, and beyond what I could have ever expected of her by orders of magnitude. I can not tell you how much this has shaken me to my core. I thought I understood, but I clearly did not.

And to express this further, these are the same qualities that I have seen in my sister, her mom, being her side by side through this whole process. Where…again, I just don’t really know what to say. Obviously I am biased, but as a scientist, sitting here knowing the realities of what I am seeing before me every day, I’m totally just watching miracles each minute. 😊

Though we weren’t able to make it on our walk in the hallway yesterday, today Dylan woke up and went for it, full send. She walked, unassisted, all the way down the hall, around the corner, and out onto the deck. I COULD NOT BELIEVE IT. I was so proud, as we all were, and this is only continuing to affirm how amazing Dylan is. I know it wasn’t without pain, and I know she put a good face on it…but dang it was a very special moment. 🥹

Hearts to you all and thank you for sharing in this journey with us. Much love and blessings to everyone. ❤️

-c

Please consider donating to the Children’s Organ Transplant Association in Dylan’s name. 100% of each contribution to COTA for Dylan is available for her lifetime of transplant-related expenses.