Two years of loving you

A letter from a mother to her son reflecting as he celebrates his second birthday after they didn't now if he would make it to his first.

How to travel with a medically complex tube fed baby. You can do it! Just last week me and my 18 month old son Jaxon return from our second holiday together in the past 6 months since he was discharged from a long stay in hospital. I took on the challenge despite his around the clock feed and medications via a feeding tube and his abundance of medical …

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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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