Tuesday, November 28, 2023

More Testing Needed

We met with a doctor in Chicago today, and, it turns out, she was one of the doctors who cared for Ramona when she was admitted at Lurie as a baby! We met sooo many providers at that time that I didn't remember her specifically, but it's nice to know it's someone we've worked with before. She also specializes in Ramona's specific condition, which is great. 

The appointment went well today. They don't have enough up-to-date information to be able to weigh the possibility of transplant at this point, but the doctor thinks that it's worth doing some more in-depth testing so their team can get a better look at how her heart is doing. 

So, for starters, she needs to get some bloodwork done soon. They said it didn't have to be today, which was excellent, because she does NOT do well with having that sprung on her. I mean, it's not great when she knows it's coming either, but it's even worse when it's unexpected. 

After that, she'll need to go back to Lurie's for 3 to 4 days to have a cardiac catherization along with other tests. She hasn't had that done since she was 1, so it will be good to get an updated look. They're going wait until after Christmas, so we're looking at some time in January, but we don't know when yet. Then, we'll see what happens from there. Depending on what kind of results they get, they could hold off on listing her for a transplant, or they could list her at varying degrees of urgency. So we'll just wait and see. 

For now, we just need to get past the impending bloodwork and then on to Christmas. But, first, we need to enjoy Ramona's birthday! She's been counting down for a while and tells literally everyone how many days away it is (it's 5, currently).

- a smoother-than-usual blood draw
- joy and focusing on the good
- plans and preparations for January
- our weary hearts and minds
- for Ramona's heart to be healed
- for the other kids not to feel lost in the shuffle


We spent the night at her uncle's 
house, which she loved. I didn't
get a picture with them, though. 

We stopped to see her aunts on
the way home. 

Thanksgiving day

They had to go out in the snow 
before church on Sunday! 

Building a lego set when we stopped to visit. 

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