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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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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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5 Ways Parenting a Special Needs Baby Changes Your Life: Chromosome Disorder Awareness Week

First things first, I really wanted to be sharing a positive post. All I ever want is to ooze positive, happy vibes. But even those with millions in the bank and a happy home have bad days. I've had more than my fair share of tough weeks recently and that's down to my sons rare diagnosis …

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Allow me to reintroduce Jaxon: A summary of Jaxons diagnosis’ and how they affect him currently

Hello, If you're new to my blog, it can look a little overwhelming. If you've been following from the beginning, it can still be a little overwhelming. A lot has happened in the last 8-9 months and I write what we experience, as we experience it. This means each blog has been about something new. …

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Catch 22: The lose-lose situation

So we're reaching 4 months in hospital. Yes, I sighed as I wrote that. It's been eventful, it's been scary, it's been frustrating, it's drraagged. It sounds like a ride at Alton Towers right? You know, the one you think you're going to die on. On the bright side, Jaxon has progressed so much in …

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