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My Weak Muscles

The journey of a little girl living with Nemaline Myopathy

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Category: Feeding

Clean a PEG stoma site with cotton wool

The best way to clean a Percutaneous Endoscopic Gastrostomy (PEG) site

July 24, 2020

Rosie has a Percutaneous Endoscopic Gastrostomy (PEG).

This is a feeding tube which is placed through her abdominal wall and directly into her stomach. … More The best way to clean a Percutaneous Endoscopic Gastrostomy (PEG) site

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Mouth matters and a blue badge of blessings

February 22, 2017

It’s fair to say that we’ve always had concerns about Rosie’s mouth and general oral functions. You may have seen that her mouth is always open – it’s not that obvious, you’ve probably not noticed! … More Mouth matters and a blue badge of blessings

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Feeding issues (part 1)

February 1, 2017

Rosie had difficulties feeding when she was first born. I had tried to establish breast feeding whilst still in hospital, and with Rosie being my first baby I thought we were both getting the hang of it.

But at only three days old and less than 24 hours at home … More Feeding issues (part 1)

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My Weak Muscles

You’ve found the journey of an inspirational little lady called Rosie who struggles with ordinary everyday activities like sitting, eating, walking and smiling due to a severe muscle weakness disease and mitochondrial disorder. What she lacks in physical strength she sure makes up for in mind and spirit. She is a real warrior facing every day challenges with grace and humour.

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