Truly complete.
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
well who gets pregnant just before a worldwide pandemic?! .. that would be me! it honestly makes me laugh now thinking about it, because since when do we ever do things by halves?! But this is something we could never have predicated, it’s been one of those things that even though it’s hard, it’s out of our hands just like every other women pregnant during this time going to scans etc on your own isn’t great but fingers crossed things settle down soon! Although I can’t see it being in time for this little ones arrival now. This pregnancy has been different in many ways, it’s almost the exact s ..read more
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Time flies..
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
we’re now reaching the 3 year mark of having started this blog, having told the world of Stanley’s diagnosis and opening up about what cf involves and how it affects us. In fact it’s exactly 3 years ago today since we had Stanley’s diagnosis, this date for the first 2 years used to play on my mind, but not this year.. the past 3 years have been pretty full on to say the least, a new baby, charity bike rides. Charity nights, proposals, hospital stays, tv and radio interviews, working with company’s in the US, Stanley being the face of hospital leaflets and posters, clinic appointments, passing ..read more
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Acceptance.
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
8 months it’s been since we last did a blog.. where has that time gone?! We as always keep everyone up to date with everything that’s been going on,on social media but admittedly the blog has been neglected, that’s something that will change this year and blog posts will now go up more regularly. so in the last 8 months since we last blogged quite a lot has happened! Stanley turned 2, Alfie turned 8 and they are both still big characters as ever! there bond is still unbreakable, I honestly think that these two will be best friends forever, I love watching them together it’s so special, ( altho ..read more
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My boy Alfie.
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
As most of you that follow the blog know we have two boys – Alfie and Stanley. Alfie now 7, came along when me and Jack were just seventeen, at the time it was easy for most people to judge to look at us both as just another teenage couple that wouldn’t last, “just another set of teenage parents” And looking back now we were young – But it was Alfie that made us both. He was the baby boy that made me a mum. That made me fall in love with someone like I didn’t even know was possible before, the boy that I have had the honour of watching grow, turning from the most beautiful baby into a handsom ..read more
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All that matters is the baby is healthy..
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
“All that matters is the baby is healthy” I actually find this a weird saying since having the boys.. it’s not something I find myself saying to anyone now – Because my children weren’t born healthy. In fact when people ask us about having more children it becomes quite awkward at times, reactions are one end of the scale to the other either lovely or people actually look at you like your almost mad, usually right after the same questions each time and the same answers.. “Yes, my child has a rare disease. Yes It is genetic. No, we didn’t know we were carriers…. It is not contagious. One t ..read more
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ORKAMBI NOW.
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
we have used over 10,000 syringes in 18 Months to provide water, medicines and enzymes over 1100 nebulised treatments totalling around just over 13 days of stanleys life. in just 18 months we have had around 10 admissions to hospitals. 15 cf clinic appointments. 3 X-rays, 1 ecg, 1 contrast test, blood sugar testing, and more blood tests than I would like to count.. swabs in his nose and at the back of his throat forcing him to cough every time we see a member of the cf team. Over 100 attempts at cannulas, long lines and finally a port which means having a needle into his chest every four ..read more
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Through Daddy’s Eyes: When you’re ready Son
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
Most of the blogs that I do are planned in a way – I jot down emotions and thoughts as I go along and then bring them all together and share these with you. This particular blog is pretty much unplanned and that’s because Sophie showed me a blog recently which got me thinking. The blog Sophie showed me made me think that Stan will see this one day, he will see the blogs we have written from our emotions laid out to trying to raise awareness of Cystic Fibrosis. I also thought the reason this blog is here, the reason we have started fund raising is because of Stanley and to show you, our followe ..read more
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Thinking it over. 
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
well now we’re back to some sort of normality after the school holidays and hospital admissions it’s time to focus more on fundraising and the blog again. We have been abit quiet on the blog front for a while now, I don’t think it was intentional but sometimes there’s just not a spare minute in the day! I don’t think our lives will ever not be busy  to be fair! but the last few months (touch wood) we hadnt had any hospital admissions until the last month or so and fundraisers had quietened down ( not for long we have more coming up!) and it’s actually the first time since Stanley being b ..read more
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Through Daddy’s Eyes: The First Year
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
It’s Stanley’s first birthday coming up and I thought it would be a nice time to look back on the year we’ve had and coupled with the fact I think my last blog was a bit brief – I think you’d agree we’ve had a hectic year, hospital admissions, bike rides and proposals and that not even half of it! Normally Sophie proof reads my blogs but this time I’d like her to read this in the same vein you, the people who follow the blog, do. So, let’s start from the very beginning, 22 July 2016 – little Stan decided to join us. As precious as the time Alfie decided to join us, even more precious this time ..read more
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Through Daddy’s Eyes: Our First Chapter
Stanley's Journey – Get it off your chest CF
by getitoffyourchestcf
3y ago
This time last week we would of ridden 90 miles and have been on our way to Calais.. on the morning of the bike ride I had a churning feeling in my stomach as myself and two elder brothers were hours away from embarking on a 300-mile challenge across two countries on just two wheels. Thinking about it now, it was some challenge to take on as our first but I feel it was a challenge we needed to do to raise awareness and to help Stanley in the future. This blog for me is about drawing a close to our first chapter living with Cystic Fibrosis as were nearly approaching the end of the first ye ..read more
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