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  • S.O

Friday, 20th of August

Updated: Jul 28, 2023

I crawl out of bed, check Olivia’s diaper, administer her first dosage of Clonazepam, turn on CocoMelon, and head to the kitchen.

While the coffee is brewing, I walk Bob, check on Olivia, and take a steaming three-minute shower.

I warm up the oven and pop her breakfast into it. I take my supplements, and then I sit down for a moment, because at 10:45 we have a follow-up appointment with Olivia’s primary care provider.

On Tuesday, Olivia was admitted into Texas Children’s EC unit.

There were many irregular signs leading up to it, but that morning she began to have seizure activity accompanied with a mysterious fever, followed by a manic episode that lasted hours until it rendered her little body completely exhausted.

We spent the day ruling out the probable causes for her fever. Blood was drawn, swabs taken, catheter inserted, and a chest x-ray preformed.

She came back negative for Covid, Flu, RSV, urinary infection, Strep (etc.).

We were discharged pending results from the more comprehensive labs, with follow-up recommendations with two specialty neurology clinics, and an appointment to discuss abnormal findings in her liver, and urinary panels.

Since her hospital visit, her meds have been doubled, and we are on course to triple them by next week to manage symptoms.

Olivia’s therapies have been put on an indefinite hold until we can sort out a new baseline for our daughter, understand if this is a beginning of a neurodegenerative decline, rule out other possible illnesses, or malignancies, and (perhaps) get some answers or a roadmap.

I say perhaps because Olivia is such an anomaly, the human body such a complex structure, and her practitioners are dealing in ambiguity.

In the next several weeks we will undergo more testing, and Olivia is being referred into Complex Care.

Currently Olivia is asleep on a pillow that is leaned up against my shin.

She is such a tough little thing.

She impresses everyone around her, and she continues to teach her father and I the incomprehensible depths of true love.

Health is fragile and life is sacred.

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