Thursday, May 8th

She’s tolerated her feed well today and, overall, her vitals have stayed stable. We’re still keeping an eye on her phosphorus, which remains just a bit low, so that’ll be something we continue to monitor and adjust for as needed.

Her current five-day run of IVIG wraps up on Saturday. We’re still holding off on her gut meds for now, but if all continues to go well with feeds, the plan is to increase her volume today and potentially reintroduce the gut meds over the weekend. Her belly exam this morning was reassuring, so we’re easing up the feed rate very slowly to avoid pushing her system too fast. PPN is also being adjusted accordingly so we can strike the right balance on nutrition. The abdominal X-ray this morning looked good, which is a big relief—it confirms what we’ve been hoping for: her gut is handling this reintroduction the way we need it to.

Kim from speech therapy dropped in to check on things. She’s been following Dallas’ progress behind the scenes and is planning to come back for a session on Monday. The focus, she says, is making sure Dallas can continue tolerating feeds before working back toward anything with ice chips, spoon work, or swallowing again. That’s the next step, but only when she’s ready.

And lately, we’re being reminded again and again of how tuned in we need to be to her nonverbal communication. Her eyes, her squeezes—there’s real intent behind them, and we’re learning to listen in a different way. Today, when the orthotist came in to fit her for new nighttime splints, Dallas kept shifting her eyes toward her bed while sitting in her chair. The orthotist said the fitting would only take about 15 to 20 minutes and easier in the chair, but she was so persistent in looking toward the bed that we paused and did what she wanted – got her back to her bed. Sure enough, she had a big BM in her diaper and that was her way of telling us. The message got through, and it’s another reminder that her bowels seem to be working again, which we’re really grateful for.

Later into this evening, she seemed a little uncomfortable. Again, her eyes kept going to the left—like she was trying to tell us something. We tried everything: switched her meds to the other IV, paused her feed for 30 minutes, checked for an eyelash that could’ve been bothering her, repositioned her to her back and to the left (her favorite side), gave her Tylenol, turned on her TonieBox with a soft bedtime story (heck, that sleepy sloth almost puts me out), dimmed the lights. Still, she seemed like she had something on her mind. But her vitals looked good, she didn’t seem distressed, and eventually it passed.

There’s so much Dallas is telling us, even when no words are spoken. Her eyes are becoming a language of their own, and we’re learning how to listen more carefully every day.

“The eyes shout what the lips fear to say.” —William Henry

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Friday, May 9th »