Merry Molys

Clinic this week bought good news. His lung function is up another 2%. Doesn't sound like much, but it's going in the right direction, even though he is off the steroids. He is a little rattely again, so we're upping his nebulisers. Five a day instead of four. On a good day this would take him 50 minutes, but in reality, it can take anything up to 2.5 hours, mostly down to his lack of concentration (his neb is breath activated, and it only releases the drug when he has breathed deeply enough for the drug to reach his small airways. Clever things nebs these days). But overall, a good visit, and as always we are so thankful to have such a fantastic team at Addenbrookes.

I'm even beginning to feel Christmassy. We have much to look forward to this month, and beyond. I am one of those people that has to have a project or plan to look forward to.... Be that a baby, an extension, a party, a fundraiser.... and our next plan is something entirely new for us. More to come on that soon! Happy days all x

PS; and just in case she reads, Happy Birthday to the most amazing Mum ever. Last weekend she organised (yet another) fantastic CF fundraiser, and there washing up, I found myself helped not just by her, but also my step dad and my dad. Our family has changed in so many way, but we all come together when it counts. I am very lucky to have them all.

And then there were three...

My children are all playing together. Yes. That's right. All three. And for a whole 42 minutes now there has not been one 'Maaaaammmm' from their den. OK, they have every cover in the house in my room, they have probably stolen some chocolates from the jar, and the den will take a while to deconstruct when they are in bed, but still.... It's so rare these days that they all get on. It's the elder two mainly at each other's throats. Everyone finds Rosa Banosa so funny you just can't get mad with her.

I don't think about it so much these days, but it's moments like this that I do. How lucky are we? How the odds were humongously stacked against us having a second child, let alone a third. So thank you for science, and to a bloody amazing NHS that gave us this chance, our complete family, our everything.

And breathe....

Isaac is doing really well right now, so I have less to blog about. His little moon face is going, and he is back to normal. His kind of normal at least. Clinic next week, and hoping if his lung function is OK, he might be able to stop the hypertonic saline nebs. Four lots a day is taking him a couple of hours, the speed he does them, so one less would make a big difference, and might make getting to school on time more likely. He has appointments in December with an immunologist too, to check out some long standing issues. Hoping for reassuring news before Christmas on that.

I had a lovely weekend break in Norfolk with two of my best friends, eating, drinking, walking, and laughing so much my tummy muscles still ache. I really needed that, I think we all did. Love you guys.

The girls and I are finally getting over our coughs, bit of a bugger that bug, and the toe I think I may have broke stubbing it on the box under the bed whilst ever so slightly under the influence seems to be less purple and throbby. Oh, and I was promoted at work, which makes all the extra hours I am doing because we are so busy that bit sweeter. So all good in merry Moly world right now. Hope you're all good too x

Feeling ill, but not for long.

It's my turn to cough this week. My lungs feel like they are on fire, like a huge itch on the inside. It's funny how when you're well, the idea of a sofa day, while your husband takes the kids out and you have rare custody of the remote, seems quite welcoming. What you forget is just how sucky it feels to be ill. 

For me, this is just a little insight. I slept for 12 hours last night (albeit it coughing the whole time, my body kindly allowed me to sleep in-between). Tonight I will have inactivity induced insomnia even though I still feel tired. But I know others who live this feeling, day in, day out. When climbing up the stairs becomes a struggle, and drug induced nausea makes even the small joy of eating an enemy. 

I think I allow myself this little fantasy where all the love, and treatments, and family, and creativity, and fun, and friends, and action, and fresh air, and hoodies with that soft fleecy inside, and hot chocolate...  all of this and more will somehow really save him from ever feeling that bad. But I guess even I must concede that just occasionally he will feel pretty damn crappy, and what I feel right now is just a fraction of that. 

I know that the chances are I will wake up tomorrow and feel better. I'll get outside and breathe down that bitter cold air into my lungs, and feel cleansed. If not, I'll feel rubbish a couple more days, get down the doctors, who may or may not give me some antibiotics, and I'll recover at a slightly slower rate. But I will recover. Even if this bug leaves me any long term damage, lowering my lung function, I'll probably never know nor notice. Whereas for people with CF, just one more infection might be the one that chips off that extra 10% that they couldn't afford to lose. 

And while they live their lives, and do their treatments, and go to school, or work, and all with the knowledge that their current infection may be irreversibly damaging their lungs, they will be doing all that feeling pretty damn crappy at the same time. 

So no, to those people that have said to me, 'oh I know how you feel, my son/daughter had flu last week and coughed for days' it is not the same (But I still feel for you, flu sucks too). 

On a brighter note, the kids are featured on the Starlight website right now. Which you can read here.

And here  is a link for my CF friends, which has cheered me up today. I hope it does you too.  

Good night all. Stay well x