A Long List

For a while now, I’ve been trying to work up the courage to compile all of Evie’s diagnoses, scattered among 3 hospitals and 30+ specialists, into one master list for our giant book of Evie’s Medical Stuff. I just really didn’t want to see them all at once, staring back at me. It seems every time we get comfortable with where we’re at and what we’re doing, Evie throws a new curve ball and it’s a getting a bit on the overwhelming side.

When Evie was first born, for nearly a whole month, she was a one diagnosis girl: bilateral choanal atresia (blocked nasal passages). Every other issue was ruled out and we had just that ONE issue to deal with. Last week, the total came to 43.

43

That’s technically not all of them either, as some of them I lumped into a larger diagnosis and with some I’m just shutting my eyes and hoping they’ll go away on their own (a girl can dream, right?).

But that’s pretty much all of the current ones.

And I made a pretty pie chart. Why? Because pretty things are calming, of course.

Pretty and calming, right?

Pretty and calming, right?

So the breakdown is:

3 that will absolutely require surgical interventions to resolve.
4 that potentially will require surgery, but may resolve on their own.
14 issues that are permanent. They may get better or worse or require varying degrees of intervention, but they are issues that will never go away or fully resolve.
18 issues that are ongoing, but have the potential to resolve completely in some way down the road with varying degrees of intervention.
4 are issues that are already completely resolved, but are still pertinent enough to her medical history that I left them in.

In some ways, I think it was good to get them all laid out. Some of the issues are more severe than others. Some of them may become bigger issues down the road.

But they all need to be monitored by her care manager. Me. Hello. *smiles*

And this isn’t to whine. It’s not to get a pity party. Evie is still doing incredibly well and doing new things all the time. In fact, it’s hard to reconcile the outward Evie, who is running and jumping and dancing and being a little ham with the internal Evie that is a bit of a medically baffling wreck.

Really, I just want your prayers. Prayers for Evie as she works to overcome a lot of these issues. Prayers for me as I try to manage and plan her care. Prayers for our family as we struggle to not become completely overwhelmed by it all. And prayers for her doctors as they try to put all of the pieces together to cautiously push Evie forward.

And please continue to remember this.

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One thought on “A Long List

  1. I’m a friend of Kelly’s from Houston and have been following Evie’s progress through her. I know Evie is such a joy to her and to all of you. I recently added your blog to my feedly, so I can follow more closely. My husband is also a surgeon, so for the past couple of years I’ve been slowly learning a bit about the medical world. It’s not a fun world. 😦 I admire your for laying out all the diagnoses. I’m sure that wasn’t easy. Please know that I’m praying for you and your family this morning as I read this post. Thank you for updating about what you need prayer for. I also just read the post about the diagnosis not being the person. Thank you for the descriptions about Evie’s smile and picking fights with her sister and being a snuggler. She sounds like quite a little girl. 🙂

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