We are still here and the relentless fevers are her constant companion, unwilling to just melt away within the perspiration that pushes through her pores several times a day.
Where have we been since my Valentine's Post?
I can't help but be in waiting mode, right? Trying to learn more, sit still and listen more...trying not to question and simmer too long in the "wonder" stage.
Wondering.....how a kid with a history of very few fevers can fall into such a rare position of chronic fevers.
Wondering how we could go from eating, drinking and walking to the bathroom to tube feeding, extreme weakness and a strange inability to even hold her head up.
Wondering, and waiting for what God's going to reveal from this odd setback.
Wondering why I can't ever be consistent with my faith. You know, that believing without seeing thing.
I have to say that we've traveled down some rocky paths in the last four weeks and have seriously been pushed to the edge of several cliffs. Scary cliffs. She has been tested for a plethora of major syndromes, infectious diseases, AutoImmune Diseases, HIV, Tuberculosis, and many other obscure conditions they needed to rule out. Praise God they all have been negative. 🙏🏼
As of today, the team continues to scrap the bottom of the barrel looking to check off any other "one in a million" conditions as her current condition continues to baffle them.
Even the current "semi diagnosis" of "Drug Reaction with Eosinophilia and Systemic Symptoms"(DRESS) isn't conclusive. Phenobarbital is one of the bad guy drugs with this mysterious syndrome. Unfortunately, the phenobarbitol has been keeping those dang seizures in check. Check out the pictures below though. With every single hospitalization, I explain Olivia's extreme hypersensitivity to medications, and the uncharacteristic nature of her weak, damaged immune system. Every. Single. Time.
After days of testing the scary stuff, it comes back to this. Hypersensitivities to drugs.....accumulation of drug metabolites (i.e. toxic). You really can't make this stuff up.
Reflecting on the last four weeks and watching her get a tiny bit better each day, I'm reminded of God's Grace while actually simmering in that unwanted arena of the unknown. Auto Immune conditions, infectious diseases, and even cancer --- that's a heavy load. What this uncertainty did do is catapult me further into learning about His character and the obedience He requires while we are sitting in that dreaded waiting room.
I've learned that Olivia has a book written especially for her in Heaven. Her destiny before the injury.
Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. (Psalm 139:16)
His Grace gives me the strength to continue fighting for that reality instead of this painful one. We can come "boldly to the throne of grace, that we may obtain mercy and find grace to help us" Hebrews 4:16.
A friend of mine shared a podcast to listen to and it knocked my socks off. Exactly the words I needed in this confusing season.
Graham Cooke - God gives us the Upper Hand in Places of Defeat.
So many confirmations I needed here:
"Perfecting the art of bouncing back......we can't be 100% all the time........consistency.......God's Grace in allowing you to bounce back to a higher place than where you fell from.......going to a higher place of victory."
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)
p.s. this is a really good one too:
Graham Cooke - Turning Your Setback into a Comeback