Many apologies that I wasn’t able to update you all on Dylan yesterday…which was her birthday!!! As you might imagine not the best of birthdays but we tried to do a little something. The staff was really nice and decorated her door in her favorite color green and we had a few things up around the room. Uncle’s choice of gifts was totally suspect, but he tried. 🤣 Thank goodness for mom and auntie!

Part of the reason for the blog delay is that we have had a really hard time the past few days chasing Dylan’s pain. Often as the day starts by the time we get to where this tough kid is trying to communicate about her pain…it is far too late to get something to her quickly that doesn’t completely knock her out. That eventually rolls into decreased activity, appetite, and general feelings that make it hard to progress day to day.

I think we may have finally found a bit of a solution. Now that Dylan has started to eat a less restricted diet she was able to handle some pain medications yesterday that normally would really upset her stomach. These meds, also being oral, allow her to have pain relief for a longer amount of time as well. So….

Now that we may have a handle on that, when we did get things dialed in late yesterday Dylan did so so amazing. Her list of foods that came back online was so long! She had bread, some soup, some crackers, some protein shakes, some pasta. She even had a bite of birthday “bran biscuit,” which is a bit of an inside joke…don’t tell the doctors. 😉

Her blood sugar/insulin levels seem to be holding steady for now. Obviously these are small bites and small steps but they are really encouraging to see. And it is 100% true that every little bit counts. For a kid whose main diet has consisted of pills lately, I am sure it is a step in the right direction.

Today we hope to continue all of this, and really stay on top of the pain. When that happens, amazing things like walks to the porch are able to occur and Dylan can get some fresh air. It reminds me of all of the things we have to be thankful for, and most of all how thankful I am for my niece and her working through this difficult time. Again, rest assured it is not without challenges and struggles. But to see her do this day after day I’m just amazed taking it all in.

Please take time today to think of Dylan and smile and send her some positive vibes. We are told by the doctors to continue to work with her towards progress moving and eating and trying new activities that would help her return to a sense of normalcy…even though we know this is such a big life change for her. Much love to you all and thank you again for your presence and care for all of us. 🫶

-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.