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
Our genetic reports came back earlier this week and we finally have results as to why Rosie was born with Nemaline Myopathy.
In November 2016 both Iain and I went to the hospital in Bristol to give blood. These were to be tested to identify whether we carried any variants of … More Rosie’s condition “de novo”
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)
When Rosie was first diagnosed with a neuromuscular condition we felt
isolated, alone and scared. We were desperate to connect with other families going through a similar thing to build a support network.
An amazing nurse who we love dearly called Dominique … More A Half Marathon for Rosie’s friend Issy
Back in June 2016 and after a few months patiently waiting, Rosie finally had her first try in a Wizzybug.
A Wizzybug is an absolutely ingenious powered wheelchair invention that enables children under five who are unable to get around by themselves the chance to gain independence, play, move and have fun. … More Wizzybuggin’
So, there I was feeling alive, brave, inspired, strong and capable. Then my Mt. Kilimanjaro welcome pack arrived and I crumpled.
I’ve always been the type of person (usually needing a bit of persuasion or a glass of wine!) to spontaneously agree or sign … More Mount Kilimanjaro calls (Part 2)
In 2009, I watched nine celebrities reach the top of Mount Kilimanjaro – the highest freestanding mountain in the world – on television in aid of Comic Relief.
Describing the climb as ‘horrific’, ‘agony’ and ‘hell on earth’, I watched … More Mount Kilimanjaro calls (Part 1)
What a week!
Christmas officially hit the Moncrieff household and it was such a magical experience decorating the Christmas tree with Rosie. … More Santa flight & meeting a paralympian
We’ve just had a Rosie regime shift and it’s turned out to the best thing we’ve done for a long time!
Rosie’s sleeping habits have been far from ideal. Unable to roll over or move herself … More No more midday nap = way more fun!
So here we were. Rosie was in hospital recovering from another nasty cold. Her lungs were collapsing left, right and centre – literally – and Iain and I were dealing with the news that Rosie was going die … More A year living with Complex 1 Deficiency (part 2)
My Weak Muscles 