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Jessica Stein  Wanderer in a past life 🍃 Mum to the strongest human. Learning to advocate for extremely rare chromosome disorders 🌻

Not long until we’re making new memories back here together 💕

Home 🤗 With our happy little vegemite 🌈

When @landroveraus loaned us one of their incredible Discovery’s we thought we would be roaming Australia’s outback and coastlines together in it. Of course “life happens when you are busy making plans” and as we have spent a vast majority of the year in hospitals, our car also spent it in their multilevel car parks. But we are so grateful to have this car help us escape every chance we can. Ru’s doing so well and we’re beyond excited to be making plans to adventure more together through the coming months, expanding her horizons. ✨☁️

Ru tearing down the wards at our local hospital at 7am. Sometimes we think she wants to come back in because she misses all of her wonderful nurse friends too much 😂❤️🌈 “And though she be but little, she is fierce.”

You may think we had moved in seeing how comfortable we were in our tiny house... not to mention it being the perfect size for our tiny Ru! One night away can certainly do wonders to help us through the months. ❤️ Thank you @in2thewild.aus @landroveraus

Ru’s cheeks were still red with rash from her tape, but being able to play in the sand tubie free is a very, very special thing ✨

A few weeks ago we bundled in to the car and drove a few hours south for a last minute overnight escape. Ru had just spent a few weeks in hospital isolation, and we all desperately needed some fresh air. It couldn’t get much better than this; an outdoor fire, tiny house and each other’s company. 💕 @landroveraus @in2thewild.aus

Hands up who is happy to wake up at home everyday 🙌 Even if she has never spent a night in her own room 😂💕 Rattan dresser by @globewest 🌈

Making the most of these magic winter nights together ✨💕 @landroveraus

Thank you for everyone’s messages of support and celebration over the last few days about Ru being free of her tubie, it has certainly been life changing for us all! Her tubie does come and go as she needs some extra help and health, so please don’t be too worried if you see it every now and again. She’s conquered so much to get here and we couldn’t be prouder 🙌💪✨

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Our happy tubie free little girl 🌈

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