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.

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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 Pros and Cons of tube feeding. Yes there are PROS!

Instagram followers, Facebook friends, random people on the bus..everyone has seen me tube feeding my son. I haven't hid it, I've haven't not posted his beautiful face because there's a tube stuck to it. I haven't saved feeding times for private spaces away from prying eyes. I'm a loud and proud mama to a tubie! …

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“Why does Jaxon have a tube down his nose?”

Firstly, it's a Nasogastric tube also known as a NG tube. It goes up his nose, down his throat and ends in his stomach. It is for his milk and medications. For general information on feeding difficulties see NHS Dysphagia. This link explains general swallowing problems in both adults and children, causes and treatment. Everyone with …

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