8 Months!

July 25, 2025

Sunny had a pretty good week...

It started off a little rocky on Monday with some oddities in her stool(I'll spare you the details:), and then Tuesday she puked twice after her morning meds. THAT of course immediately caused me to spiral, thinking we were headed back to her not being able to hold anything down but not having any answers as to why. She didn't vomit again. Instead, her Tuesday pretty fun - the munchkin woke up around 11:00am and stayed awake for a good part of the day. She sat in her highchair, OT came and was followed closely by PT. She was happy in her highchair again after those workouts, and it wasn't until closer to 4:00pm that she made her way back to bed.
Surprisingly, that night she started getting fussy & nobody could really figure out why. She slept most of Wednesday, and when she wasn't sleeping she was mad. Thursday followed a similar suit and, after her helping Majo & Aunt Jadyn with trach education, she fell asleep again for most of the day.

There are a few things that are just a tad off. Her stools continued to be not quite normal for her, her resting heart rate lower, the trach stoma has been irritated and swollen....just some things for her this week are off. None of the physicians are overly concerned with anything in particular - they're keeping a close eye on the oddities, but it's hard for me to balance being content with their plan & pushing for more of an answer. I know next to nothing of the medical world, but I am her parent. The doctors rotate weekly, and will have her for the occasional weekend or night shift. Nurses are seeing more of her day to day, but have days off or get placed with other kiddos. For the most part, I'm in her room all day every day. It's a tricky balance, and I'm grateful for Chris as my teammate and for God stirring or settling our hearts about worries we have regarding this miracle babe.

Wednesday night and Thursday morning started off the trach education for Sunny's grandma & aunt!! They survived the first week of it! & don't seem too scared:)
One of the in-home nursing agencies found a nurse available for weekdays, and while we were hoping for nighttime coverage, we'll take what we can get. Unfortunately, the two nurses we had met with and loved have already been scooped up elsewhere or changed their hours of availability. The team is hoping that, with the help of the daytime nurse and Majo & Aunt Jadyn, we'll be able to set a TENTATIVE discharge date for the end of August! Tentative.
We're going to work towards doing that, while still knowing our girl who loves to throw curveballs.

It's hopeful and intimidating. There's a lot that needs to be done before then, but we're gonna try to get home for just a tad before needing to come back for heart surgery. I have a feeling the window for being home is small at this point, but we appreciate their working with us to get Sunny home first.

Prayer requests:
- For us to find out what's causing these minor irregularities or just healing for whatever it is.
- The continued in-home nursing search
- & for this potential discharge date and all that it entails.

Thank you for your continued care & prayers. We're in a sweet and exhausting season of life. We love this girl so much and we'll do whatever is what's best for her for as long as we can! From the start of her diagnosis, we knew she was not expected to last long. We are just so grateful for all this time with her. It's hard, and it's also such a gift. Thank you for your prayers & support for us in this, we'd for sure be crying a lot more without ya:)

Love,
Chris, Alyssa & Sunny