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It was one of those days.
In the past week, Charlotte has taken a grand total of 15 mL from the bottle. Total. In a week. Today at her therapy appointment, she wouldn't even take the chupi (pacifier). I'm losing it here, people. This was her one skill! We knew she could take a bottle, but the formula was just too thick. We had it in our heads that if we could just keep her going until she could take a thinner liquid, we'd be good to go.
Alas. It is not to be. Charlotte is currently refusing anything that comes near her mouth. Except for the Z-vibe. (I probably shouldn't write that down... tomorrow she'll refuse that as well!)
She's still taking a chupi when she's very sleepy, but its the last frontier. I know she's not going to be tube fed FOREVER, but it sure seems like it occasionally.
And thus ends my rant.
On a more positive note, the pulmonary team was very pleased to see Charlotte last week. They told us to not even think about weaning Charlotte at this time, which is disappointing, but it does take some pressure off of us. On the other hand, they were super happy with where she was and have continued her on all of her meds, with only an increase to her KCl. So yay for having something that's working!
That's about all folks!