As I write, Leo is dozing off in his cot, sounding quite breath-less after a hard day's climbing the furniture. He also has a fruity cough which is a bad sign - I am taking him into hospital tomorrow to be checked over. Today, between playing and eating, Leo has had three doses of inhaler, three 15-minute sessions of physiotherapy, nine doses of digestive enzyme, four doses of antibiotic and three other medicines. He also sometimes needs three doses of laxative as his bowels get blocked with mucus. Keeping on top of this regime sometimes feels like a mental assault course, but Leo takes it all in his stride.
Now one, Leo is enjoying a diet which includes chocolate cake, cheese straws, lashings of butter, fatty lamb (which he loves) and the odd vegetable, of course. Consequently, his weight is now above average - the dietician has compared his build to that of a sumo wrestler.
He needs a high-fat diet because he has difficulty digesting food, especially fat. I have been reliably informed that beefburger and chips (plus some vegetables) will be his square meal. So how do I square this with cooking for his two-year-old brother who is quite happy eating broccoli and carrots?
Apart from the scares we have when Leo gets a cold or a cough, he is doing very well and is enjoying babyhood to the full. The impact on us as a family has probably been greater than we realise, though. Stress levels seem quite high, with me debating whether to go on Prozac (as suggested by the health visitor - who has been to see me once, at my request).
I have found myself sometimes being obsessed with wanting to know how long Leo will live. The life expectancy of people with cystic fibrosis (CF) is a big issue. Ten years ago, children with CF rarely survived into adulthood; some internet sites now estimate 30 years; Leo's consultant reckons 40 is more realistic, given the right treatments.
He also gives us great hope because he feels sure that in 10 years' time, gene therapy will be available to correct the faulty gene (we don't quite understand how this works), reducing the lung damage. These figures play on my mind all the time and it is when thinking about this issue too much that I start to go mad. Virtually every day I think: "I'm 41 and I am still planning things for my future - Leo might be dead by this age." Or maybe I'm always procrastinating and hopefully Leo will be more focused about what he wants to get out of life. I dread the day I have to sit down and explain the implications of his illness: "Well sweetheart, you might only live until you're 40." But he will probably be his usual laid-back self and say: "Blimey mum, that's ancient."
We are finding out more and more about CF - although there are times when we don't want to know anymore about it. Having been for genetic counselling we now know that we both carry a CF gene, and unfortunately they decided to pair up when Leo was in the making. Consequently, Leo has two faulty genes which cause his body to produce too much mucus, mainly in the lungs and digestive system. To produce a child with CF is quite rare - one in every 2,500 babies, but we were surprised to find out that it is quite common to be a carrier - one person in 25.
Having the disease affects people differently, some people are affected more severely than others - we are dying to know how "severe" Leo is but it seems it is too early to say.
On a day-to-day basis Leo needs help with two main things to stay alive. First, we need to do everything we can to prevent him from developing a chest infection, which grows more easily in the extra mucus in his lungs. Any chest infection will cause irreparable lung damage and this is usually what shortens life expectancy. The second thing we have to take care of is Leo's digestive system which is bunged up with mucus. He can't digest food properly and so has to take enzymes when he eats. The treatment for preventing chest infections involves antibiotics, inhalers and physiotherapy; he has immediate access to the hospital if he develops a "fruity" cough. The treatment for his poor digestion involves enzymes with all food, a high-fat diet, and laxatives when constipated.
Although all of these things may only take a few minutes on their own, when we added up the extra time involved in looking after Leo we were amazed to reach a figure of approximately two hours per day, on top of the time it ordinarily takes to care for a baby of his age. No wonder we are stressed out and worn out.
It was recently announced by the public health minister, Yvette Cooper, that all babies will now be screened at birth for CF. Believe it or not, only approximately 18% of babies were offered this procedure, depending on the region in which they lived.
I had been told that the test only costs 50p so I rang the screening policy team at the department of health who said it was "quite a cheap test" but they had not been sure of the benefits of early identification in children until now. Trials conducted in Wisconsin in the US (published in Paediatrics) have shown that weight gain is an important factor in how babies do, but the government wanted to wait for "high-quality evidence" before offering universal screening because they had to balance the benefits of early identification in infants with issues such as anxiety caused by false positives.
I came off the phone and started giving Leo his bottle, felt his now chubby legs and sobbed. Policy-making seems so far removed from the realities of people's lives - before his diagnosis Leo was passive, lethargic, had no appetite and often looked like death warmed up. How can there be any doubts about the benefits of early identification?
The good news is that Leo has been granted the higher rate of disability living allowance, because he needs "attention with bodily functions". The snob in me never imagined myself to be involved in receiving long-term state benefit. I am not sure what we are supposed to spend it on. I feel like phoning the benefits agency and saying: "Please miss, can we spend it on a holiday?"
· For more information about CF, call the Cystic Fibrosis Trust on 020-8464 7211
