Any links to items I use that people show interest in will be posted on this page. For the organiser shown on Instagram for how I organise Jaxons medical notes behind the under the stairs cupboard door click here. (Pictured below). I have two different radiator covers. They both look identical and I plan to …

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Hospital, home or hospice?

How did we get to a point we're visiting a hospice? What does that mean? Is Jaxon okay? Jaxons diagnosis has not changed. His prognosis is still unknown. His syndromes affect his quality of life hugely; he is fed with a feeding tube, has multiple medications throughout the day, has numerous appointments a week. His …

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Mamas going back to school!

My blogging has dipped considerably since leaving hospital for a multitude of reasons; settling in at home, getting organised with carers, a holiday (I still can't believe we made it!) and trying to figure out how the hell I'm going to get my degree done. Mamas going back to school! A few weeks ago I …

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Genetic Diagnosis #2: Bartters Syndrome

I missed a call from the geneticist. I kicked myself when I listened to the voicemail asking me to call back knowing they'd have left the office by now. Jaxons geneticist had recently sent more bloods to test for Bartters Syndrome. If you don't know the back story to this, he struggles significantly to maintain …

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The latest milestone: The High Dependancy Unit.

Sigh with me guys. Another first for Jaxon. Not sitting up, not 'mama', not dipping his toes in the sea. Oh no, Jaxon does not do normal milestones. This milestone was *drumroll please*... the high dependency unit (HDU). The calm before the storm Following his operation that appeared to go so well on Friday 5th …

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