@ranelittle: PICU DAY 31 Thirty one days. Yesterday, we finally got a little glimpse of what coming home might feel like. Halo was trialed for four hours completely off oxygen and on room air, and she did it. No desaturations. She maintained her oxygen levels and showed us that maybe, just maybe, we are getting closer to the moment we’ve been waiting for. She has been running a fever for the past few days, and thankfully, her doctor believes it’s from a stomach bug. We’re hoping her little body can fight through that and continue moving in the right direction. The plan is to get her up to snuff by next week so she can finally come home. And I honestly don’t even know how to put into words what that means to me. After a month of being afraid to look too far ahead, after everything Halo has endured, after all the nights I’ve sat beside her wondering when we would get to leave this place… home is finally starting to feel real. I’ve dreamed about the simplest things—putting her in her own bed, waking up together at home, not hearing hospital alarms, not watching every number on a monitor, just getting to be her mom without being afraid of what the next hour might bring. We still have a little way to go. But for the first time in a very long time, I feel like I can see the light at the end of this. Oh and… We reached 1 MILLION views. 🥹🤍 A million people have now had the opportunity to hear Halo’s story. A million views that have helped put CTBP1-related disorder in front of people who may have never heard those words before. I never imagined that sharing our daughter’s hardest moments would reach this many people. But if even one person learns about CTBP1, one family realizes they aren’t alone, or one child with a rare disability gets seen and understood because of Halo, then every post has been worth it. I would choose a million times over to tell the world about my girl. Because Halo is so much more than her diagnosis. She is the reason I advocate. She is the reason I keep sharing. She is the reason I refuse to let a rare disorder keep her story small. Todays as part of our mission: I’m tagging @Mark Cuban. #fyp #foryou #viral #trending #foryoupage

Rane Little 🧿🪩🍃✨

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Saturday 29 August 2026 02:39:45 GMT