Its been a while since our last update, - we wanted to wait until Liv was, FINALLY, on the kidney transplant waiting list for sure.
We got the call today that now she is on the list(!), crikey, what a journey so far and after waiting since July last year, through one infection after another and whatnot, we also had, not one, but TWO(!!) new infections to deal with that happened shortly after Christmas. When Liv got her PEG tube operated into her stomach she developed an abscess unfortunately, which then turned into a new staph infection which then became another staph infection in her peritoneum! But everything is all clear, blood tests very good as can be, yay!
Liv is also highly prioritised on that list we are told so we have renewed hope now, and feel cautious optimistic about the future again, we can’t wait to get that call and neither can Liv. So now its a waiting game - but a positive one.
We are also doing everything we can now to avoid any viruses or infections and we are keeping Liv home now from kindergarten, we don’t want to take any chances on anything, although we know its not possible to avoid the potential flu or cold… if there is any indication she has any virus or cold then she has to go off that list.
But we really have a good and positive feeling about it all, things will turn our way now and Liv especially - we have a strong hope for the future now, more than ever before.
Its been a very, very long journey to get where we are now, it most certainly has shaped us in ways we never could have imagined. It’s moved and shifted our values, changed us as humans as who we are in the deepest of places, where it hurts the most, and discovered a new kind of strength we never thought we had when we were pushed to the very edge of our absolute limits.
Our little Liv deserves a chance at life in this world. She deserves a life where she can grow and develop - not being chronically tired and sick, struggling with unstable blood pressure, nausea, severe headaches, vomiting, chronic stomach problems, infections…She has not had that chance without a kidney, such vital organ that most take for granted.
We have, almost without realising it, become somewhat experts in nursing, care, medications, and - kidney disease.
We have truly understood what it is to have normal functioning organs and now also how to take better care of them too, we all should really try and do that a bit more. And for those who are in a similar situation as Liv, what ever that may be, we think of you all very much. We are truly grateful that we ourselves are, sorta, healthy and strong - and deeply grateful that Liv is able to receive a new kidney. Well aware that someone out there somewhere has to loose a life for this to be possible.
Our journey so far has been profoundly hard and painful but it has also shown us how strong we are and how immensely our love for our little Liv truly is.
And as we continue, we have renewed hope and faith, because deserve a good and real life.
She will help make this world a better place, she already does :) - and even more so when she grows up, that we are mostly sure of.
We also wanted to thank you all once again for the kind messages and immense support, it’s been lifesaving for us all here, it truly has, and soon we hope to share even more positive news.
Thank you all so much and lots of love to you all from all of us here.
Liv, Vitalia & Lasse
