Cystic Fibrosis, Family, Photos

The Fab Five Climb Snowden for #cftrustuk

I'd like to draw your attention to my amazing nieces and nephew's -AKA the Fab Five!- who, with the help of my family, are planning an awesome adventure in August 2018! Erin age 13, Sofia and Mark aged 10, Keyaan 9 and Maxwell 4, are climbing Snowden to raise money for the charity The Cystic… Continue reading The Fab Five Climb Snowden for #cftrustuk

Cystic Fibrosis

Orkambi Protests #cysticfibrosis #orkambinow #helpusbreathebeyond30

Today, you may have seen on social media, that the Cystic Fibrosis Trust have organised several nationwide protests for the following reason: We are calling urgently on Orkambi’s manufacturer Vertex and governments across the UK to agree on an affordable price that can make the life-changing drug immediately available to those who so desperately need… Continue reading Orkambi Protests #cysticfibrosis #orkambinow #helpusbreathebeyond30

Self

mental and emotional clutter #disorderedeating

“listening to the siren song of more we are deaf to the still small voice waiting in our soul to whisper 'you're enough'” In this journey I'm on with living with more intention I have done a lot of getting rid of physical clutter and actual STUFF around my home. It's a never ending journey… Continue reading mental and emotional clutter #disorderedeating

cystic fibrosis, art, 65roses
Creativity, Cystic Fibrosis, Self

The Elephant in the room #cf

The Elephant in the room He's been there since the day you were born but we were unaware of him until we received an unsolicited knock on the door. He must have slipped in with those nurses while we were off guard Ten foot tall, grey and looming. An unwanted gift is no gift at… Continue reading The Elephant in the room #cf

Cystic Fibrosis, Family

Update on Joe #cysticfibrosis #sensoryprocessing

Hi everyone, thought I would give a bit of an update on Joe and his health and what we've been up to! Last week Joe had his bi-monthly clinic appointment with his team at hospital. It was a bit traumatic for us all as not only did he have his usual appointments with the dietitian,… Continue reading Update on Joe #cysticfibrosis #sensoryprocessing

Cystic Fibrosis, Family, Food

Making mealtimes easier

Recently I have started listening to Podcasts, particularly when I go out for a walk in the evening to try and get a few more steps in on my Fitbit! One of my favourites has been Bringing Up Betty- a Podcast about special needs parenting, it's front woman is a lady called Sarah who has… Continue reading Making mealtimes easier

Cystic Fibrosis, Family

Update: Cystic Fibrosis, sunshine and nursery

2016 so far has not been the best year for us, although we have had some great moments and our two week Easter holiday was fantastic, health wise 2016 has been and is continuing to be a challenge. Recently we have had to face a number of challenges, Joseph has been in and out of… Continue reading Update: Cystic Fibrosis, sunshine and nursery

Creativity, Self

What I’m interested in this week

While I've been under the weather I've been given more opportunities to sit around and look at the internet! Here are some of the things that have caught my interest this week: FITBIT  Robin has treated me to a Fitbit- I've gone for a Fitbit One, it's small and compact and clips onto your pocket… Continue reading What I’m interested in this week

Cystic Fibrosis, Family, Food

Update on Joe #CF #foodanxiety

Hello Everyone, This year so far has been a bit of a roller-coaster, what with moving house, charity balls, birthday extravaganzas, the usual cystic fibrosis shenanigans, re-decorating etc etc etc we don't know whether we are coming or going round here some days! I have found it very stressful recently trying to manage all the… Continue reading Update on Joe #CF #foodanxiety

Cystic Fibrosis, Family, Food

A Positive post!

For the past few months it's been a bit of a negativity fest over here, but today I wanted to write a more positive post for a change! When you have a child with an illness that you have little control over it can become easy to forget all the good things and achievements they… Continue reading A Positive post!