one of the main reasons for starting this blog was to raise awareness of cystic fibrosis.. when Stanley was born me and jack knew of the condition but not to the extent that we obviously know about it now Continue reading “feel free.. “
Over the last few weeks we have had a few people mention to us about the news they have been seeing on the tv, the drug orkambi.
It’s been a while since I last shared a blog with you so here’s ‘Through Daddy’s Eyes, Three Months On’. Firstly, I want to introduce you all properly to our eldest lad Alfie. I also want to give you and insight to how I’m involved in Stanley’s daily routine and the thoughts I go through on a daily basis as a Dad having two children, one of which having Cystic Fibrosis. So here goes again… Continue reading “Through Daddy’s Eyes, 3 months on”
so after being in hospital again all week we are now officially back home!
This week seemed to go a lot slower than when we had previously been admitted, I think it might have been that this week we just didn’t know what was going on Continue reading “we’re home! “
we’re back again!.. in hospital that is.
At the start of last week Stanley’s cough seemed to make an appearance again, we had only been back down to one lot of physio a day and down to prophylactic antibiotics for just a few days, but within a few days he seemed to be sounding rather noisy! It’s like we tempt fate every time we get down to just one lot of physio the dreaded cough returns!
month 3 already wow.. we’re now 12 weeks after diagnosis.
Stanley will be 15 weeks old next week and the past few weeks (touch wood) things have been pretty good!
After our two week stay in the hospital for IV’s Continue reading “3 month update. “
Just a quick post to keep people updated!
So yesterday we had both boys sweat tests as mentioned on the previous post..
The test took around an hour or so to complete, we were greeted by a lovely lady who was a biomedical scientist who explained the test.. Continue reading “sweating it out. “
So we realise we’ve been a bit quiet on the blog lately… sorry!
It’s been safe to say the past few weeks have been eventful! People may remember on Stanley’s 1 month update we had explained that after his last clinic appointment a cough had returned within a few days and he was then put on two more weeks worth of antibiotics Continue reading “2 month update. “
When we started this blog one of the things we said we would be is honest, each time you write a blog post write it like no one is going to see it. Ive had part of this blog written for a week or so now, but it has took me a while longer to put out there than our previous posts, I hadn’t got round to finishing it.. Continue reading “living up to the name and getting it off my chest. “