03/07/2025
Life Update 💕
Life has been a whirlwind lately. Back in May, Xoe had a scary episode that completely shook us. She slept until 5 PM, and when she finally woke up, she was groggy, her lips and fingers started turning blue, and she began shivering. Her oxygen levels and temperature were normal, and then—just as quickly as it started—it passed. But that moment left a pit in my stomach.
We brought it up to her pulmonologist, who ordered an overnight O2 study and referred us to a cardiologist. The overnight study showed her oxygen was dropping at night, so we were told she needed oxygen and a full sleep study. That revealed very mild sleep apnea, and we were sent down the CPAP path with a referral to ENT.
We got the equipment, started using it, and—true to form—Xoe handled it like a total rockstar. But when we saw the ENT, he felt her airway looked great and didn’t see a need for CPAP or oxygen at all. Now we’re back in limbo, waiting to hear from pulmonology, still trying to piece together what that strange and frightening episode was really about. We have a cardiology appointment in August to rule out pulmonary hypertension.
It’s been nerve-wracking and exhausting, and full of so many questions without answers. But through it all, Xoe has been her brave, sweet, shining self. We’re so proud of her. She continues to teach us what strength really looks like. 💗
