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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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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