Last night was a long one. Between 1–5am, Chelsea pulled out her feeding tube twice, even with a sitter present. Each time it had to be replaced, and once required a follow up X‑ray to confirm placement. Watching her go through additional imaging after everything she has already endured was difficult, and it’s not how any of us hoped the night would unfold.

She’s not quite ready to have the feeding tube removed yet, but we are seeing gradual progress. The tube remains in place for now and will stay until she is consistently eating enough on her own. Today, at each meal, she drank about half of a chocolate Boost (currently her favorite) and ate roughly half to a third of her tray. This morning she was upgraded from puréed foods to a thicker consistency with small cuts of protein, which is another small victory we are celebrating. She hasn’t needed tube feeds since last night because she’s been able to eat but will get one overnight. The care team has also adjusted her medication schedule to support more oral intake rather than tube delivery, and her sedation medications continue on a slow, monitored weaning plan.

She’s becoming more chatty, though it’s still very much a gradual process. She’s answering in short phrases, has spoken in full sentences at times, and her familiar sarcasm and sass are starting to show through again. This does exhaust her though, which is exactly why she is in a low stimulation environment with very limited visitors.

Chelsea completed her weekend OT and PT “homework,” including brushing her teeth at the sink with support, sitting in the recliner chair (Mike gave it up for her and she thoroughly enjoyed that part 😜), and taking another ride in her “Hot Wheels” through the halls. She made stops at the fish tank and the bubbles, and after 22 days here, she’s something of a local celebrity, with folks saying hello from nearly every corner! 

We’ll continue to share updates as we’re able, though as Chelsea progresses we may not always have the capacity to post daily. Chelsea will help dictate the posting schedule, and we’re deeply grateful for the steady encouragement, kindness, and patience surrounding our family. Your support continues to mean more than we can put into words as we take things one careful day at a time.💗