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Category: Jaxon
How to travel with a medically complex tube fed baby. You can do it!
https://www.youtube.com/watch?v=TktQEy_fWd4 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 …
Continue reading How to travel with a medically complex tube fed baby. You can do it!
Links
Any links to items I use that people show interest in will be posted on this page. They are amazon associate links so they are the suppliers I used (I always shop on amazon with Prime, love it!) but by using the links I provide I receive a small percentage of the purchase for referral …
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 …
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 …
One year of motherhood, not the kind you dream about
Reflecting on my first year as a single mum parenting a 0-1 year old with two genetic syndromes and one life-threatening heart conditon.
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 …
