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Liv's Blog

Liv's Blog

Liv's blog is a compilation of posts from the GoFundMe site, created initially by Jess Cope - a long time friend and collaborator with Lasse Hoile during their work on projects for composer and musician, Steven Wilson. Many of the posts will contain moving contributions from Lasse, Vitalia and their colleagues including video clips and photography of Liv's brave progess through her treatments and life at home with her parents. We hope you will learn from their experiences and help to spread and gather support for Liv and other children in similar situations.


A possible kidney for Liv!

Dear all you amazing and kind people.

It’s been a while since we made an update and we really wanted to post something meaningful - it’s just been a few extra exhaustingly few past months, and with a bunch of extra hospital visits (outside the usual) on top… well, I think you know by now.

That being said, Liv is finally over her Staph infection and again getting back her strength, slowly but surely, she remains the ever happy and tough little girl that she is❤️ Her blood pressure is a bit high again so we getting that under control again steadily.

We also had our trip down to Odense Hospital for the big tour, after the long delay, Liv got examined by all the different doctors and specialists who is going to do all their magic once the kidney transplant is possible.

And on that note - Liv might be closer to such - and without jinxing anything - we are so, so very happy to report that we just might have a kidney donor❤️

Although nothing is certain right now, but it’s safe to say that emotions ran high and still after that piece of exceptional good news.

The donor is Vitalia’s older sister❤️, both her and Liv went into blood tests this Tuesday at the same time, and today we got the news that sister is booked for a three day intensive testing at the end of October! We hope for the best but also waiting before really believing it’s actually happening.

Words, right now, really can’t describe what goes through all our minds of emotions. All we can say is - we are just incredible lucky, blessed and we remain hopeful and positive. Vitalia’s sister had to loose weight to be able to get ready, and she lost over 15kg in just a few months and is almost there, such commitment is beyond what we can comprehend at the moment- that’s real ❤️. For her to give up a kidney for our little Liv so she can finally get back to some normalcy and a better life developing… well, words simply cannot describe it right now

We will, of course, update more on all of this soon and also Liv’s special room❤️ but we made a little video of Liv getting back in her little ‘walker’ gizmo for training, a first since the unfortunate accidents with her dialysis tube early July.

We think about you all and we also just can’t thank you enough for the invaluable and heartwarming help - it really helped when it was most needed.

With all our ❤️ to you all.

Love from Liv, Vitalia & Lasse

 

Liv’s 4th Birthday

Today we celebrate our little Liv’s 4th. Birthday ❤️ Some say time flies, but it certainly doesn’t feel this way here (sometimes).

Despite her current condition, she managed a day in her special kindergarten, which we are starting up slowly again after all the hoolabaloo of the past few months. She had a good day there and got a little present too - It’s good for her she is finally able to get back there, and just to get out and about for a few hours helps her develop tremendously (in her own time) - and us a little break too. But today was about Liv and we tried to give a good a day as possible with a visit from grandma and (step) grandpa ❤️

Liv is in need of a new shot of epo and she will hopefully get that tomorrow at the weekly checkup at the hospital, where we will also get the results from her 3rd ultrasound scan from we went in for Monday - and hopefully she is over the Staph infection. It has also meant Liv hasen’t had her full on dialysis for a long time which shows in her energy levels.

The one thing we just simply haven’t had any chance to update on - is Liv’s new special room, which we had hoped to fully break in - and in full use for little Liv on this special day❤️, but we simply haven’t been able to get the last things in place due to Liv’s past two surgeries. She hasn’t been able to use and do the things as she needs to heal up proper, get her full dialysis going - we really hope to share her making proper use in her finished space in the next update ⭐️

Thank you again all so much for support, messages and thoughts. The kindness shown from strangers is so overwhelmingly healing and heartfelt… you don’t know how much it means to us and keeps us going (especially when some much closer to you… let’s say - disappoints spectacularly (and that’s just me being a little melancholic now due to Liv’s birthday☝️(and I completely understand many simply don’t know how it’s like to have an handicapped child (and also in dire need of new kidney, because - you know, it’s her (and our) survival) , been through all this without any breaks for exactly 4 years today, unless you have been in or are in similar circumstances) but, you know…c'est la vie‍♀️))

So now it’s onwards and upwards ⬆️ and - hopefully soon - a new kidney for Liv❤️

Love from the 3 of us❤️❤️

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