Good morning everyone and again apologies that I wasn’t able to update from yesterday as intended. Things got pretty busy as Dylan has some re-visitors back in town! Woohoo! 🥳

(Note my attempts to snag a certain younger sister in the photo were thwarted…but you can imagine the difficulties I face. 🤣 I was able to lure my other niece out of the room for ice cream tho. 😉)

Anywho there have been lots of massages and hugs and love given to our patient over the weekend as she continues to progress on her recovery. I think that things are going forward each day, some days better than others, but as we all know it is important to continue to take steps!

Regardless Dylan’s body continues to do amazing things and we are continually astonished by her numbers from bloodwork as they maintain and recover from the surgery. Dylan is working really hard to completely wean off of her intravenous nutrition but it is a tough road when you have a very different stomach that is very much smaller than it used to be. Her tummy is working overtime, but yesterday it was growling for some Chipotle and some Chipotle was had! This did make Dylan feel pretty full for the rest of the day though, and as her fluid intake is being monitored so carefully we have to keep on top of this too. A difficult balancing act for sure.

Dylan continues to also struggle with the taste issues but it seems like maybe things are getting near the halfway mark to normal. I was curious about this yesterday as I know that can be a hindrance to even having much of an appetite. By evening however Dylan had a nice piece of pizza with her dad so that was a great end of the day for her.

One thing that I know has been nice for Dylan is getting some time away from her IV cart and essentially going “wireless.” You would be amazed what a sense of freedom this can give…and I think as this continues to become more frequent and for longer durations, as much as can be, there will be pockets of more normal to focus on. It has to be such a journey for our young patient, so much of which is hard for even me to understand, and comprehend, and even vocalize as she recovers. I think deeply about that each day and the level of processing required is honestly beyond any of us.

Today’s goals remain much the same, more movement, more intake, and more evidence for the doctors that Dylan is getting to a place where it is reasonable to see her functioning outside of hospital care. It is still some ways off it seems, but we continue to march toward that new stage in her recovery.

I think I will leave off with a positive memory from yesterday during the shorter time that I had with the crew, which was during our time on Dylan’s evening walk. She has been encouraged by the physical therapy team to even work on sitting in chairs with a certain posture to help her regain muscle function and balance. Again, all of these little things help. As we sat outside, I noticed that she was doing this even though I know it isn’t a pain free posture. I gently reached out my leg towards her, extending my shoe during a moment when things were a little quiet, and it looked like she was maybe off in a place thinking about things, thinking about where she was, or maybe just thinking of nothing at all. And from her sitting position, she reached out and suspended her leg, and I got a little ‘boop’ from her sock covered toesies and a smile.

As I sit here with tears in my eyes I realize what a small thing this is, such a normal thing, or a simple thing for an uncle and a niece to have as an interaction. A moment of recognition and connection. But I also know how much she has done to get to that point, to be able to hold her leg out and meet me. And it meant so damn much to me I can’t really describe it to you. She continues to work so so so hard. And I know it seems so small sometimes. But I see it and I feel it and it crushes me like the ocean. I love her so much, as I know all of you do as well.

Many hugs 🤗 and heart hands 🫶 and care to all of you as you journey through your own days today…your own challenges and trials. Much love. ❤️

-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.