Merry Moly World on TV

Did I ever tell you about the time we were on TV? We were contacted through Guys hospital, where we had the IVF and PGD to conceive the girls. Reluctant at first, after meeting Adam, the writer/producer, we agreed. Loved him, and all the questions that he was raising. This was 4 years ago now, around Christmas time, and just before we got married (at home, with the kids and all our family and friends around us) so here you can see a mini Isaac and baby Anouk (make sure you watch to the scrambled egg bit).

To see the full program, search on you tube 'should I test my genes'. It's well worth watching, as well as Adam Wishharts other documentaries.

For the little segment including us, click HERE!

PS; Isaac is doing great right now, thank you to everyone who has asked x

Our crazy lovely boy, our gorgeous girls.

Just sitting here, looking back at our year.

Things have been a bit up and down.

We've had some wobbly moments.

But we're still smiling (with our cousins). 

And we've had some beautiful moments. 

And we've shared these moments with our amazing family and friends. 

Love you guys. 

OK, I may have had a teeny drink tonight and be feeling a bit soppy. So shoot me x 

Nutty kids - love em.

Had a totally ROSA'd couple of days. Bliss. Our childminders extraordinaire (aka, Grandma and Grandad Joe) are away on holiday so I am enjoying a few days off, doing all the school runs and spending some serious one on one with my littlest lovely. She is just so funny right now ('Mama... I'm taller. Me taller, but baby me Rosa, yes?'). I usually only have time off in the school holidays, to be with all three, or covering hospital visits and stays, so this is a nice change. I spent two hours on a boat (sofa) saving her from shark monsters while she bravely made expeditions for supplies (raisins) to enable us to fight the terrible monster (large cushion).... Unfortunately we both died and she insisted we lay tongues loping on our sides for a while. Much fun. 

I have been working my butt off this last year, during a huge period of change at work. I just want to do a good job, and to enjoy it along the way, but at times the pressure is ...... Blimin high. I wouldn't mind, but right now the team I am working in is not a team at all. Rather there is resentment about changes, and stress from the overload. It makes me sad. These are good people, doing a great job. We need to come together, and remember that human factor when coping with what we have, rather than complaining and whining. 

I feel like the only glass half full amongst a whole bunch of half empties.

Isaac too is having a few issues right now, mostly anger ones. Coming off the steroids seems harder than him first being on them.... He can be full of rage one minute, and then soppy the next. We had a good chat in the car (good chats with him always seem to be in the car, it's the only time he's not fidgeting or playing). We still talk all the time, about everything. I hate the thought of ever losing that. Hopefully he'll manage off the steroids and we'll get our Isey back soon. 

Had many a heart melty moment tonight at their school parents evenings. Above all, both their teachers say they are an absolute delight to teach. A sweet, clever girl who just needs a little more confidence, and a twinkly eyed boy who everyone likes and who tries so hard to please. We must be doing something right. It's a nice reminder, as often we feel so tired, trying to fit everything in, we must be letting them down.... after food, treatments and exercise, school work can sometimes be the thing that waits. Plus we think they're kind of nuts, so it's a relief that the school don't. 

So glass of bubbly tonight, listening to some lush Sharon Van Etton on the headphones while Dan geeks himself out on the Walking Dead (his favourite zombie fest). Cheers everyone. 

New heart for New York

A lovely little animation for you to watch Here. 

To sign the UK organ donor register click here!

Have a great day my lovely readers x 

Nature, nurture, and a pile of leaves.

I've always been heavily on the side of nature in the whole nature nurture debate. I honesty believe I could have fairly accurately described my kids personalities, broadly speaking, by the time they were just a few weeks old. Isaac is active, cheeky and smiley. He is very quick to forgive and forget and never holds a grudge. He fidgets, non stop. Anouk is sweet, tactile and thoughtful, and cautious physically, but very very loud. Rosa is cuddly and crazy stubborn (and so hilarious with it). They are all so different. 

I don't believe I have treated them very differently, although I suppose there is a difference in the time I get to spend with each, as his treatments insist. We do try and make it a family thing as much as we can, and all three have been known to lie down for 'patacakes' (percussion physio). But one way we have most definitely not treated them differently is in terms of fun and freedom. 

There are certain bugs which live in soil, stagnant water, compost, hot humid environments like greenhouses.... Which wouldn't be a problem to someone with healthy lungs, but these bugs love a CF lung. Therefore there are certain activities that are best avoided. When you have a baby, this is easily done, but less so as they get older. So, like all parenting decisions, you find a balance that suits your child, your family, your level of sanity. 

We avoid the obvious risks; jacuzzi's (full of pseudomonas, jacuzzis are responsible for many an ear infections in anyone); stagnant water around the house (vases of cut flowers left for days); pond dipping in stinky ponds; playing in composts or greenhouses; damp and mould; mucking out stables. 

We don't stop him; playing in the garden; swimming; playing football and rugby in mud; going to farms; canoeing...... After all, exercise is hugely important in CF health too, and psychologically, so is being allowed to feel normal. In other words, we make a judgement call. Pseudomonas and other bugs like it are everywhere; They are in the air we breathe and the grass we sit on. We cannot protect them from everything. Exercise and enjoying the activities that he shares with his friends are vital to his physical and mental health. 

One of the saddest things I heard at a CF conference a few years ago was a Dad who stood up and said that he had never let his child kick through leaves in the autumn, and not just that, he was also struggling to explain to his son WHY he was not allowed to, as he had yet to tell him that he had CF. The boy was 9. 

Isaac has grown up around the words Cystic Fibosis, and although his understanding about his condition comes in stages, I'm so glad that he never has to go through a sudden realisation about what he has. To me, a sudden realisation later in childhood is much worse than a childhood always knowing about your condition. For those diagnosed late this is unavoidable, but to hide it, and yet limit his life at the same time.... ? I don't agree with that. 

I know this is about fear. And it is crippling (I was much more protective too when he was smaller). But in nurturing them, we also need to let them free a little too. 

Nature or nurture, I think that Isaac's personality will help him through his life with all the extra things he has to do to stay well. That's not to say he doesn't get hugely pissed off with it at times, and he certainly lets us know when he feels like that. But he gets over it pretty quick. He doesn't dwell. I could have told you that when he was a baby. He is every bit as fabulous as I ever dreamt he would be. They all are. Our cheeky boy, our thoughtful girl, and our fiercely funny baby. 

Have a great day. 

Autumn update.

Isaac is feeling so much better. Or at least, he's back to his normal. Better than he has been since the start of the summer, which is so so good to see. 

We are still tapering off his steroids. He has the full moon face now, and has a rounder tummy than he has ever had before (he gives an extra comfy huggle now). I guess he will revert to normal slowly when they stop, he is getting a teeny bit self conscious about his face. The question now is if his lung function will drop again off the steroids, and if so, whether he will need the Broncoscopy still. He's also still on all the other extra medication, which includes 4 nebulisers a day, which is pretty full on, but the advantage to being in hospital is that he is being a bit more compliant now; He got used to doing extra work to stay well, and complains less while actually doing more. We're not yet sure if or when he'll stop the extra drugs. We're also waiting on a referral for another issue (will blog about that if and when we know more). 

Anyway, those are worries for another day! 

Right now, I am focussing on the girly girls, especially Anouk, who has been very fretful since we were on the ward. She is having a hard time, says that she can't even bear me to be an arms length away (...heartbreaking when you are a working Mum, and you have to leave them crying for you...).  

But aside from that, we are enjoying autumn, we've have had lovely friends to stay, cold mornings on the rugby pitch, evenings cuddled up on the sofa as a family with the fire lit and the diary is filling up fast for the rest of this year .... Life is pretty good. 

Have a great day x 

Transplant

One of the funniest people I know, who also happens to have CF, has recently had the scary news that she is unwell enough now to warrant a lung transplant, because her own lungs are no longer behaving (read, really quite crappy). 

She has a lovely husband, a fantastic son, and parents...and friends... and a three legged dog..... and she bloody deserves every single second more that a transplant might offer her, when she is ready to take it on. 

I can't imagine what she is going through right now; Go on the list now, and go forward for a transplant, with the risks of not surviving the operation? Or wait, and risk getting so ill before the chance of a transplant, and not survive? Or to go on the list now, only to find you're in the 'one in three' that does not survive the (too long) waiting list? ....Or go on the list at some point, survive, and go on to enjoy some fantastic good health with new lungs....the generous gift of a complete stranger. This is what I would summarise as a HEAD FUCK (excuse the swearing, but this one really warrants it). 

I'm sorry, that last paragraph seems too crude and is simplifying an issue that is anything but simple.... But this really is a life or death kind of thing. I can only guess at the questions I would have if it were me. 

I don't know what decision she will come to, or when, or what is going through her mind right now, I only know this;

That if she missed out on the chance of a transplant just because someone thought to sign the organ donor register, and forgot, or didn't let their wishes known to their family before they died? What a waste that would be. Sign up, and let your loved ones know your wishes. My friend, and hundreds others waiting for an organ, deserve that chance. 

Click Here to sign up. Thank you x