My Weak Muscles

The journey of a little girl living with Nemaline Myopathy

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Tag: Percutaneous Endoscopic Gastrostomy

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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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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Sums up last week...

Chemo #4 done and disconnected from the pump this afternoon (I'm documenting my journey at @bowel_cancer_at_40)

Finally after the last 3 years of living with a car which was a good run around for short local trips but unsuitable not quite suitable if we wanted to go away or journey longer than an hour away, we're finally trying to sort out a new WAV on the motability scheme and test drove this Ford Torneo Custom.

LOVING our matching superpower hoodies from @scampanddude courtesy of a very special friend ❤

Year 3!!

In 2018 Rosie, was granted a VERY SPECIAL WISH from the Make A Wish Foundation.

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