Going away.

I am going to Mexico City for a week fairly soon. I've had the joy of travelling a little for work over the last 14 years (I started the job thinking I would stay a couple of years, and never left, the people are too lovely!) maybe once every couple of years, but more often in the last few years. Visiting printers and our other publishing offices around the world. As someone who never went travelling after uni and regretted it, it's a wonderful opportunity to see the wonderful sights of the world, and work in other cultures. 

But the idea of a week long trip, to so far away would have filled me with fear when Isaac was younger. To in no way belittle Dan's role as a parent (he is a fantastic Dad), when you're young and poorly, sometime you just want Mum. I would worry no end that he would get sick while I was away and I wouldn't be there for him, not to mention the cost to the company if I had to suddenly come home. I had to pull out of a trip to Milan the day before we flew once. But now... things do seem easier. 

There is nothing harder than your child being in pain, unwell, or symptomatic without knowing why when they can't call and tell you how they feel. There is something very special about being the one to wrap your arms around your kid and know that they feel somewhat better just because it's you. There is something very intuitive about a Mum and child, especially when they're sick; I can feel and hear the difference between normal cough and a crackle coming from his lower right lobe. I would often wake at night when he was little, knowing he needed me before even he did. 

But now, thanks to a wonderfully supportive family, Skype, and a fantastic kid who is happy for me to go away, and can tell me exactly how he feels on the phone, I can go away in peace and enjoy my adventure...

OK, admittedly I WILL worry, but then I always do. But only a little more than usual from afar. Frida Kahlo Museum and Teotihuacan Pyramids - here I come! 

I hope you have wonderful travels too x 

Antibiotics will not cure viruses!

"The increasing prevalence of bacteria that are resistant to antibiotics is a potential problem for everyone. However, for people with cystic fibrosis (CF) it is a matter of life and death. Long-term and acute bacterial infections cause damage to the lungs of people with CF, resulting in gradual respiratory failure and the eventual need for a lung transplant, or even death. Antibiotics are essential for fighting these infections, preventing or delaying damage and prolonging survival. Over the coming years it is essential that antibiotics are used appropriately and with care to reduce the number of opportunities for bacteria to develop resistance.

There needs to be a global reduction in the use of antibiotics. They are frequently used in agriculture, and are often prescribed for conditions that are not treatable with antibiotic drugs. As understanding of the problem increases, steps need to be taken to reduce these practices. If you don’t have cystic fibrosis, you can help by not asking your doctor to prescribe antibiotics for conditions for which they won’t work, such as flu or the common cold."

I have blogged about this quite passionately before here. Please spread awareness that insisting on antibiotics for what may only be a virus puts others (who really need them) at risk. 

Have a lovely picture to brighten up a more negative note x 

Home with the boy wonder.

Isaac came home from camp full of stories of fun, late nights, fresh air and new friends. Just what we wanted for him. Unfortunately, he also came home full of chesty cough. We heard later that the canvas tents they stayed in were damp and may have been mouldy. The worst kind of environment for a kid with lung problems. That said, he was on reduced treatment while away, to avoid taking two nebuliser machines (which require mains power, sterilising of equipment, and an hour or so to complete) so whether the chestiness is due to the dampness or just doing less treatments (all though he was also on added Ciprofloxacin) we can't say. A week home and his chest is much clearer, and he made it through his last week of school without missing a day, despite also being sick on a couple of mornings. Things are looking up. 

My dad (THE most generous man to ever live) has a caravan at the coast, which we all visit often. It's a family and friends site, strictly no renting out, in a beautiful woody field on a cliff edge, not far from Southwold. It's a far cry from holiday rental sites, where the vans are packed in, all white picket fences. It's surrounded by woods, the sea, loads of green space, and we're beginning to know our neighbours. It's like a home from home - just way more relaxing.  This weekend Dan has taken the girls down with a friend, so Isaac, Obie and I are home alone. A time to bond, I thought. And then I remembered that he's strictly teeny these days. His idea of us spending a weekend together means him playing PS4 and me reading my book in the garden. This might do for tonight, but I'll force myself on him tomorrow, hopefully by kicking some serious Isey butt at pool (that said.... he is starting to get pretty good... ). To do anything together I have to remind him of the IRL (in real life) way in which some people still converse. Imagine! 

School is out, and I'm only working three days a week over the holidays. Lots of long weekends to look forward to, both at the caravan with friends and family, and home, which I need, and which Isaac really needs. First year of secondary school done. Phew. 

Sending big love out to my cousin, who will also have a son given a shitty hand in the genetic lottery of life - we're thinking of you Sian, and wish you all love. 

And also to baby Ned, who should be putting in an appearance this week - happy birth-day - we can't wait to meet you. 

Happy holidays all x 

The house feels so empty.

Isaac has never been away from us before. 

I know (no, I hope) he is having a wonderful time. 

I miss him so much. 

We get a break from the relentless CF treatments, but he does not. 

It's been raining all day. Please let him be warm and dry. 

Talk about tugging the heart strings.... 

Cheers!

I haven't updated about Isaac's health properly for a while. Thank you to everyone who asks after him, it's always nice to know people care, or at least that I'm not boring you all senseless with this blog!  

His lung function is stable - not fantastic, but definitely not awful at all either. 

Still waiting on a date for his surgery. He can't remember what it feels like to breathe through his nose. Bloody polyps. 

He is currently on extra oral antibiotics (three different antibiotics, rather than his usual two), for his usual pseudomonas infection. However he is really well right now - we're doing this just to give him a little boost before he goes away on school camp. 

On school camp he will not do his nebulisers. This is wonderful for him (think bulky machines, having to sterilise neb parts, needing electric (on a camp site), and having to do these treatments with his new friends present five times a day). But still worrying for me.... he has been on regular nebulised drugs since he was 18 months old. BUT, his team is supportive, and the extra exercise he will get there, and the extra oral meds will provide extra cover. This is his first time away without me or Dan. Eek. 

His tummy continues to give him jipp. It's mostly manageable at home. But he is missing too much school. His attendance is around 80% this academic year, which is slightly up on the year before. We're in talks with school now to see if he can drop a non-core subject in year 8. This would give him time to catch up/do homework in school time. The school are really supportive of the idea (which came from a CF parent friend of mine - thank you G!). I hate that he struggles so, and after treatments at home, sometimes the last thing you want to ask him to do is catch up work... So we're feeling positive about this change. 

We've been out and about having fun at the coast, canoeing on the river, BBQ's galore, sitting in the garden so late that the mozzies have a field day on my legs..... Everything is sunny groovy. Have a great summer people! x 

Handsome Obie. 

Trying out some new, and pretty effective, parenting techniques with the pre-teen. I can recommend certain types of tape. 

Rosa. Looking like butter wouldn't melt... don't be fooled! 

Lovely Anouk! 

Now 8, 5 and 12. How did that happen?