Officially 1A

 

Tie-dye projects

As of Friday night, Ramona is officially on the 1A (highest priority) transplant list. There’s not much to update on otherwise. It’s been pretty quiet from a procedure/testing standpoint. She’s being monitored, and we’re just trying to pass the time and make the best of it. We’ve been going to the play room when we can, playing with toys in our room, reading, drawing, doing laundry, and whatever else we can come up with to pass the time between assessments and meds…which is exhausting in it’s own way. But I’m very thankful that we are (at least for now) able to leave her room. Not that there are a ton of places to go, but it’s much better than being completely cooped up. They had some tie-dye projects set up for the kids to do today, and she absolutely loved that. We can’t wait to wash them out tomorrow and see how they turned out. Between that and getting to eat in the cafeteria, she described today as a great day, which is good.

Between not getting enough sleep, being away from home/family, being tied to a monitor, and constantly wondering if you’re about to get poked, it’s just hard on a kid. And we haven’t even been here a week yet. They are also trying her on an oral medicine to see if that has any impact on her echos and ekgs, which she does not like at all. Thankfully she is tolerating it better with applesauce, because she has to take it 3 times a day. Oh, and she has to get blood drawn tomorrow, so we’re praying they’ll be able to draw back through her IV so they don’t have to poke her, which is just the worst. 

I don’t expect there will be much to share updates about for a while. It sounds like it’s going to be pretty repetitive days for a pretty long time.

PRAYER REQUESTS:

- Rest/sleep (this monitor is being especially noisy tonight)

- For her IV to work for her blood draw tomorrow

- For joy even when things are hard

- Healing and God’s timing

- for our family to be together soon

- Opportunities to share the hope we have

“I will remember the deeds of the Lord; yes, I will remember your wonders of old. I will ponder all your work, and meditated n your mighty deeds. Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples.” - Psalm 77:11-14