Hello September

September 05, 2025

Sunny was moving and grooving at the end of last week - hear heart rate was normal and she was seemingly enjoying her new JG-tube situation.
Over Labor Day weekend, her heart rate remained more elevated than her norm, and she became pretty gaggy. Despite being feed through the J-tube and leaving next to nothing in her stomach, she's still just seemed rather uncomfy and harder to settle for bed.
She's still on IV nutrition as we slowly increase her feeds to her GJ-tube. Because the level of her gaggy-ness is somewhat inconsistent, it's difficult to know if it's the feeding situation or something else.

Wednesday afternoon after a little nap in my lap, Sunny's heart rate came down a bit. Not to her normal, but it was lower than it had been and I was hopeful the trend would continue. Unfortunately, it was back up the next morning, and she was still gaggy. That repeated Thursday afternoon - had a good nap, woke up with a lower heart rate and then the next morning, it was back up to being weirdly high. BUT she has seemed to be less uncomfortable & is sleeping better, so we'll take it.

The Palliative Care team has been coming in weekly to check on how Sunny's doing on the increased med that they had suggested to help with her gut motility. Additionally, they're quick to check- in and ask about our overall goals with Sunny.
This week, she asked if we'd be open to taking Sunny home on TPNs(Total Parenteral Nutrition), which would entail going home with a PICC line. I told her it wasn't our preferred route, but we're open and willing to do whatever at this point. She said we could make a plan to try to continue increasing feeds while decreasing IV nutrition while at home. We're still not really sure what Sunny's body wants as far as nutrition, but we're trying to step in time with her complex needs.

Sunny missed Tiny-Tots this week because she fell asleep getting her routine echo, and although I hated missing her weekly social gathering, I didn't want to wake her. Her Physical Therapist Marcy just said that Sunny's so much more curious and social than at the start of the summer.
She's just so fun and so funny. She has a very frugal smile budget, but you can tell when she's enjoying something because she will let you know if she does not. Sunny likes playing on her playmat in her room, and occasionally enjoys swatting at her dangling toys. I got her a xylophone, sat her on my lap, started playing with it, and Sunny slowly turned her eyes and head to follow the sound. She's also been liking her swing lately which surprised me because months ago she hated it, and I thought about getting rid of it the last time we moved rooms.

Sunny keeps growing and changing. She keeps everyone on their toes, and the fact that she's still here still wrecks me. It is a wild thing to hold and love someone so resilient and so fragile. It's a lot of feelings all of the time. I keep thinking that I'm learning how to live this life of dreaming for the future with her while also knowing she's not likely to live long at all. Planning her birthday and buying cute clothes that are several months ahead, and also keeping in mind that we and modern medicine can't fix everything. Which is sad. But I also feel like it's like the shoreline to the ocean - there's so far medicine can go, but it can't do everything and sometimes I forget that. Jesus is gonna take Sunny back when it's time, and modern medicine is no match.

Prayer requests:
- For Sunny's digestion
- Overall health for the munchkin as we head back in to the cold & flu season:)

Thank you!! We really do appreciate your prayers and love for this sweet babe. She's the very best, and we're NOT biased at all:)

Love,
Chris, Alyssa & Sunny