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 …

Continue reading Genetic Diagnosis #2: Bartters Syndrome

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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 …

Continue reading The latest milestone: The High Dependancy Unit.

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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. …

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

Went to hospital with a 6 day old, left with a nearly 2 month old. Why..

So I'm trying to really quickly and briefly fill you in on what happened before I started writing blogs about Jaxon when he was 12 weeks old. But there's really nothing brief about his medical issues so I'll do the best I can. First things first, going way back to when he was born. As …

Continue reading Went to hospital with a 6 day old, left with a nearly 2 month old. Why..