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

Cystic Fibrosis, Family, Food

food food terrifying food #foodaversions #cysticfibrosis #GORD

Food, food, terrifying food Food is a touchy subject around here. This is a difficult post to write. But I think it needs to be written as there are other parents going through similar things with there children and they may find value in this post. As a parent, when you say your child has… Continue reading food food terrifying food #foodaversions #cysticfibrosis #GORD

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, Photos

Manchester Cystic Fibrosis Parents and Carer’s evening and Joe update

Tuesday was a very busy day. Not only did Joseph have pre-school, we also had to go to our first Child Psychology appointment and Rob and I went to the Parent and carers CF evening for Manchester. Joseph's psychology appointment went well, it was an initial assessment where we talked about the issues we are… Continue reading Manchester Cystic Fibrosis Parents and Carer’s evening and Joe update

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

Cystic Fibrosis, Family

Don’t get too close- you might catch it!

Hi everyone, Everything has been a bit rubbish round here for the past....I don't know.....FOREVER! The saga of the never ending chest infection/ ear infection/illness continues and now not only is Joe on his 4th week of extra antibiotics, coughing like a trooper, and not eating a lot (no change there then) I am also… Continue reading Don’t get too close- you might catch it!

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