B positive

When you live with the realities of CF you can feel helpless. You constantly worry and try to guess what impact it will have on your daughters life. You worry about how you will explain to her  that she has a condition for which there is no cure.   You search for ways you can help & encourage her to try to live a life unlimited.   You cling onto hope and try not to think about what her future may hold. You try and live in the moment and to recognise when you are in a good space - when health is good and treatment going well. We don't want Eloise to feel like she is running out of time. We will bleed and fight for our daughter. Hope is essential to helping us to keep a positive attitude & mindset.  Hope that new drugs, new research will mean we can say that CF means Cure Found. That would be enough. We put our hope into the hands of strangers - people working in research, people working for pharmaceutical companies , the CF Trust a...

She has C-R-E-O-N It is C  -  Crazily small It is R - rolls everywhere  It is E - it's an enzyme  It is O on apple  We've run out ohhhhhhh                  N ooooo A new mum is taking her baby out to meet the world, a moment she has been dreaming of for a very long time. The baby girl is a tiny premature baby with very long fingers and the most amazing eye lashes. She can't or won't breast feed so her mum has been getting up every two hours expressing milk and feeding her via a bottle. She takes this loving expressed milk with her on this first magical outing. The baby is snoozing peacefully so her mum pops into a local bar for lunch and right on cue the baby wakes - crying for milk. This new, sleep deprived mum grabs her bag and brings out the following items which make her feel self-conscious and make her feel like she is portraying the image of a bad mum: a bottle of milk  ...

Forgive me, for those of you in the know the below will seam really obvious, but here  are our top tips for surviving your first hospital admission with a toddler who has CF Coffee, builders tea, mint tea - in whatever form you take it brews are an essential part of your survival kit! Take teaspoons, mugs, a dish cloth and tea towel! Whilst the staff on the ward are fabulous the brew making facilities may not be. Take a few home comforts that will make the experience it a little bit easier!  Toys, games & entertainment! I felt like a bit of a diva rocking up to A&E will all our bags & toys but boy was it worth it! To prevent cross infection you toddler will have a room of their own and will need much entertaining. Work - I enjoy my job and truth be told i have just got back into the swing of it after maternity leave. I didn't want to let people down and truly thought that I could handle a commute, work and hospital visits. In truth I was tired from...

So, there we were, watching Man V Robot at the MOSI . Eloise & her friend Artie were engrossed, waiting to discover if a human or a robot dog was best at locating a hidden watch, when Steve got in touch to say that Eloise had to be admitted to hospital that same day. We'd received our first IV call. Eloise has had a runny nose and a wet cough for what feels like weeks now but the bugs in her lungs were proving resistant to antibiotics . Hence the two week admission to RMCH. Daily we live with realities of CF but we have been fortunate to do this from the comfort of our home. Still making time for friends, fun and adventures. Everything has been brought into sharp focus. Cannulas fitted, cannulas falling out, a 19 month old resisting sedatives, the caring & loving night time interruptions from medical staff, mid-lines, the list goes on! However upsetting it is to see Eloise crying from pain we know it's for the best. It's another step on our jou...

Earlier this month my husband & I, our daughter and a suitcase full of drugs and medical equipment jetted off to sunny Portugal. Our nerves were evidenced by our extensive checklists,  packing and repacking of medication, letters form the hospital and of course passports! Every parent has concerns about travelling abroad with a toddler. CF intensifies these concerns. Will her meds arrive safely? How do we make sure she is having enough salt - people with CF require additional salt in their diet as they loose lots of salt  when they sweat. Hence it's more of a worry when when the temperatures are higher! How will we fit her physio and nebuliser routine into our holiday? Will she cope with the change of  environment? Should we put the creon in the fridge? Our planning paid off and everything went really smoothly. Most importantly we all had fun and created new memories. Eloise learnt new words 'pool', 'pig' and 'Portugal' and by kissing a 19 month...

We never pretend to know what it's like living with CF, so do forgive me if this post it a little too optimistic. Coming to terms with a diagnosis for your two-week old child is a challenging thing and it struck me a few months ago that being positive about CF, wasn't a place we'd  permanently reside. We'd always have downs, as well as ups and it's certainly valuable to recognise when you are in a positive part of the CF orbit. B+ can be complicated With that in mind, we attended a parents' evening a couple of weeks ago organised by the splendid  CF team at Royal Manchester Children's' Hospita l.  Among the presentations, there was one from a chap who has lived with CF since the mid 1970s - about the same time I was born actually.  Among the facts of his story was that his parents were told not to expect him and his sister to make it to their late teens. More than two decades later, he's doing great and still going strong. Chatting ...

Winter is Coming and as avid Game of Thrones fans, we couldn't help but make comparisons between GoT and our lives as parents of a CF youngster. Humour us for a while here, as we think there are some parallels between the two. With CF the status quo is constantly changing. A cough swab result could mean a new treatment, or a cold another antibiotic. In Westeros power dynamics change rapidly, we can totally relate to that! The Night's Watch - the guardians stationed as the first and last line of defence from the dangers beyond the wall - represent our talented, committed and knowledgeable CF Team at RMCH. Watching over us and planning our battle with precision, care and dedication. The lingering fear of winter is comparable to the constant worry that CF brings - always lurking in wet coughs, colds, stagnant water, mud & other places. In the White Walkers we see CF itself. Trying to rule, take over & destroy life. Please refer to The Night's Watch - we are fighting...