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My Weak Muscles

The journey of a little girl living with Nemaline Myopathy

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If you’ve been inspired by anything you’ve read here or have any stories or ideas you wish to share, please do get in touch. I’d love to hear from you!

Lisa x

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My Weak Muscles

Here 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 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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We had the most amazing day today @ashtongatestadium watching Rosie be a mascot for @bristolbearsrfc v @saracensofficial. Huge thanks to Springboard for the opportunity! Watching Rosie head out on the pitch today melted my heart. What a special afternoon making wonderful memories. Sincere thanks to everyone involved! ❤❤❤ #bristolbears #mascot #officialmascot #saracensrugby #rugby #ashtongatestadium #bristol #myweakmuscles #stadiumtour

Only found out today about these fabulous super soft tube feeding dresses from @marksandspencer. They're so amazing, the label tucks into a little pocket at the back of the neck so it doesn't scratch and there's a discreet little hole for access to her feeding peg. Simple but so effective!! Love these!! #pegfeeding #pegfeedingdress #marksandspencer #kidswithdisabilities #myweakmuscles #musculardystrophy #clothingforall #littlethingsmakeabigdifference

Last year the amazing @makeawishuk granted Rosie a very special wish - a trip to Eurodisney to meet all her favourite princesses on her 5th birthday. We should have been there this weekend making memories, but in true Rosie style she came down with a cold a few days ago and we had to make the heart-breaking decision to postpone the trip. To say she was devastated is an understatement, but we're lucky the charity has been so understanding and we can rebook for later in the year. So, it wasn't quite the birthday we'd been counting down to for the last few months, but think we managed to salvage the day doing everything Rosie wished. Big thanks to @childrenshospicesw for letting us pop in and use the swimming pool so Rosie could be a mermaid, granny and pappy for a lovely breakfast, all her cards and presents and lovely birthday messages. Happy 5th birthday to our little ray of sunshine, we love you always ❤ ❤ ❤

How to brighten any day! Wearing an Elsa dress and having a cuddle with Norman. #cuddleswithnorman #guineapiglove #elsadress #recoveringfromflu #thankgodforventilators

Rosie is so excited to be reunited with Norman!! #guineapigsofinstagram #normantheguineapig #welcomehome #missedyounorman

What a difference a week makes. This time last week we called an ambulance for Rosie and were taken to Bristol Children's hospital, where pneumonia and flu were quickly diagnosed. Her infection rate was through the roof. The docs, nurses and physio team have worked their magic on Rizz again. Although she's still struggling to keep her saturation levels up we felt we had the equipment to manage everything at home and really wanted a change of scene and fresh air for her. So the doctors reluctantly agreed to let us go home! YAY!! The last week has been tough on Rosie, daily physio, masses of suction, stingy drugs via her cannula (scratchy scratchy) as she calls it, three times a day and a tired body fighting two nasty bugs. The latest x-ray also showed early signs of scoliosis - curvature of her spine - so this will be our next battle to get her posture right and prevent any further damage. This is going to be hard given she doesn't have the strength to sit up on her own. We did manage to set up a shop in hospital (poo bag, nappy, banana and various other medical paraphernalia on sale at highly unreasonable prices) - passes a bit of time anyway although Rosie was a little disappointed with the number of customers! We now have one more week of antibiotics (via her feeding peg as the cannula was taken out yesterday) and doctors orders to have time on the ventilator every day, regular checks of her sats throughout the day with wafts of oxygen if needed and all her usual care - physio and nebs before each feed and lots of rest to let her body heal. We'll do a sleep study in a couple of weeks too to see how she's getting on. Thank you for all the kind messages, offers of support, love and healing over the last week - it makes a big difference. Iain and I read all your messages to Rosie and we really appreciate them even if we don't get much opportunity to reply. Big thanks to Pappy who came in every day to give Iain and I chance to grab a sandwich and some fresh air - legend x x x #bristolchildrenshospital #flu #pneumonia #dailyphysio #medicallyfragile #muscledisorder #hospitalshop #earlysignsofscoliosis #nemalinemyopathy #myweakmuscles

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