This Weekend

Tyler was able to spend the last two days with Emma, while I went home to see the other kids. It was really nice for everyone to see each other. :) The kids are really missing her and wish they could come and see her. Ella tried climbing into my luggage to come back. ha.

P365/2:

Since we've stopped the Reglan, she's acting more and more like herself again. I know part of this is that she's been getting more nutrition, too. Whatever the reasons, though, it's a huge relief to see her smiling again.

Yesterday, she struggled quite a bit with agreeing to get the GJ tube. She doesn't want any sort of feeding tube and is very angry about it. We all felt like it was important for her to choose to do this herself vs anyone forcing her, so child life came in and helped explain and talk her through things. Everyone has been so respectful of her feelings and helping her feel validated and safe. At the end of that, she decided to take the rest of the day to just think about it (vs simply refusing it). She asked both of us what we thought, and by today, she had decided to go ahead and do it. She still wishes she didn't need it, but she's not so angry about it anymore. Part of it is she had a part of her that refused to believe she still can't eat enough (while also knowing she can't), and the other part of it is she already has scars all over her chest/abdomen, and she doesn't want any more. So, they're still on for doing it tomorrow.

Also, yesterday, they had to drop her feeds down by half because she was too full. Today they were able to increase it a bit. She's currently at 3/4 the amount that they want her at. (They want her at 40 ml an hour, which is 1.35 fl oz. So, it's a pretty tiny amount. She's at 30 mL (or 1 oz) right now.) They also have an IV going so that she can get all of the fluids that she needs. They did another x-ray today, and they've finally got her intestines cleared out. Yay! (We've been trying since mid-October.) But this means even with it all cleared out, she's still feeling full with her feeds at times. Meaning the fullness for sure isn't because of constipation now.

She still isn't taking much of anything by mouth, but that's likely because of the NJ tube. She ate probably 20 tic tacs today. The nurse wrote it down as one of her meals. haha.

The tremor on her left arm & leg is still there. It doesn't seem any better. Someone said that maybe it's due to the Lexapro, so we'll be asking them about that.

I'm hoping to be able to respond soon to the messages we've gotten, but in the meantime, thank you to everyone for reaching out! We really appreciate your prayers, words of comfort, and support. <3

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