Hey everyone following Liv and our little world here
It’s been quite a while since the last update - and honestly, I had really hoped this one would finally be a more positive one. We’d even planned to share it on Halloween, last Friday, during what was meant to be a small family get-together - a rare little celebration after everything. But instead, we had to cancel everything once again and shift all our focus back to Liv and her getting better. October 31 ended up being another bloody hard and exhausting day… but we’re grateful we caught things in time and got her the treatment she needed before it got any worse.
For a while there, things were actually looking brighter. Over the past few weeks, Liv had been doing so much better - her strength and energy slowly coming back after a shot of epo and iron infusion. She even started to crawl again last week(!!)… something she hasn’t done in over a year and a half. Watching her move and explore again after everything she’s been through was just incredible - one of those moments that gives us hope and keeps us going.
She was also only about a week away from finally being placed on the waiting list for a new kidney. It felt like we were about to turn a corner.
But as luck would have it… she’s been hit again. Another infection - peritonitis - her third one. It came just as she was recovering from the last one. So once again, we’re back to constant hospital visits, blood tests, and antibiotics….and that long-awaited place on the transplant list is on hold a bit longer.
If it turns out to be a staph infection again, there’s a chance she’ll need another operation to replace the tube in her stomach, as the bacteria can cling to the plastic and lie dormant - meaning it could just keep coming back. So that might be a good thing although it will also push getting on the waiting list further out - and will also hopefully make any potential infection a bit harder to get also or jeopardising the waiting game once that starts, which will be a daunting wait in itself.
We’re honestly exhausted - physically, emotionally(- it’s a perpetual rollercoaster ride that never ends and you can’t get off), all of it - but we’re holding onto hope, as always. Liv keeps showing us what real strength looks like, and that alone makes us believe we’ll get through this too.
Thank you all so much for still being here with us - reading, sharing, supporting, sending messages. It truly means the world.
With love,
Lasse, Vitalia & Liv
