Friday, May 27, 2011

Giving Back

Since Finlay came along we have been really lucky to have had help from lots of different individuals and charities. There's a list at the bottom of the blog - click away, they're all lovely people!

Since Finlay's first ultrasound diagnosis one charity, @Heart, has been with us all the way. They've been a huge support, emotionally and financially. They helped get me to Auckland (an hour's flight away on a different island) for the birth and later for his open heart surgery. They've been there to support us both at home and in hospital. From day one we always wanted to try to give something back. We just never imagined the chance would come so soon and in such a way....

One of our friends is a photographer, a really good one, take a look. When Finlay was 5 months old and we were about to fly him up to Auckland for his heart surgery we asked him to take some photos. Partly because we knew that would be the last chance to get photos without a scar, and partly because.....well, it might just be the last chance.

And the results were stunning:

A few months later, @Heart sent round an email about a photo competition being run by Canon (the people that make the cameras and printers). The winning picture would win $25,000 for their charity. So Vicky got on the phone to our friend and asked him to enter one of the photos. Being the great bloke that he is, he didn't hesitate in saying yes. He knew without asking which photo he should enter. Of all the fantastic pics there was one standout.

Over the next couple of months we tried to get as many friends, relatives and anyone else to vote for his picture on the Canon website. It didn't get the most votes but it got enough for the judges to take notice. Out of over 800, beautiful, stunning, inventive photos from around the country, all with heart-rending stories behind them, his was one of the final 5 to go before the judging panel, which included one of the country's top photographers and even the Prime Minister's wife.

An exciting, nervous few days were finally broken when our friend got the phonecall from Canon that he had won and our charity was getting $25,000. So many more families would be helped in the way we were thanks to our friend and Finlay. But for us the picture is worth a million dollars:

Wednesday, May 18, 2011

The ever present cellphone

Finlay has his pump, I have my cellphone. It goes everywhere with me: my remote link to F. I can't imagine what parents of diabetic children did before cellphones.

Everyone I work with is used to the calls: "he's high", "he's low", "he's pulled his site out", "another kid pulled his site out".

And they understand that it doesn't get turned off, ever. Meetings, lunches, visiting dignitaries; if preschool calls it gets answered. At least I have a fairly unobtrusive conventional ringtone. It's not like I shatter the peace of the workplace with 8 bars of the latest hip hop hit, or tinny Beethoven, or some irritating 80s song that keeps going round in your head all day until you work out who sang the original.

I try not to be too disruptive and if needed a quick explanation is accepted without question, but I realise it can be annoying.

So yesterday the phone rings and I see it's preschool. But this time there's no numbers, no infusion set crisis. For once it was just a normal call. Something they could have been asking any parent. It was great. No quick-fire calculations needed, no apology as I slipped out for an hour to inject my son.

End the call and back to the meeting, "Sorry, wasn't important after all" Oops!

Sunday, May 15, 2011

Take a Bow, Boys

I set this blog up to be about Finlay. But it's more than that. It has to be. Although he's the one at the sharp end, who'll have to deal with everything that this disease will throw at him, the whole family are affected.

So I need to introduce you to his big brothers.

It would be easy to exclude them from the blog but they have lived with diabetes as long as we have. At an age when most kids associate hearts with the lovehearts on a greetings card, they can recognise a cardiology diagram from a medical textbook. They have seen their brother's seizures, watched the scars heal from his surgeries. They know how to use a glucometer, where the glucose gels are kept, that when I tell them to get Mummy quickly they need to do it quickly. That they do this without complaint makes me so proud.

As the eldest, Cameron is the one the others look up to. Recently, our city has been struck by a series of earthquakes, one in February killing 181 people. With each big aftershock that shakes the house the younger ones look to him. His coolness and calmness in the face of nature's wrath is incredible in an 8yo. The other two see him looking OK and they stop crying, or get a hug from him to calm them down. At when it comes to Finlay he is just as good. Encouragement to drink his milk, a cuddle to ease the pain of a site injection. Now when Finlay is upset at a site change or at the hospital he cries for his brother.

Ewan is the livewire of the family. Despite Finlay's trials Ewan is the one that's going to cause me to lose my hair as he grows up. He and Finlay are often to be found plotting. With all Finlay's problems we were worried that there would be jealousy between the brothers but not a bit. They are the best of friends. They still argue, they're brothers! But we are so pleased with how they get on.

And this is where the guilt sets in.

They way they have dealt with Finlay and everything associated with him has been incredible. They deserve so much from life. And we constantly fail them. Diabetes and feeding regimes take up the majority of our time. Time we should be devoting to his brothers. We should play with them more, read to them more, teach them more, listen to them more. But too often we run out of time, or if we get the time, are just too damn tired. It's not how it should be, but sadly how it is. All we can do is try to give them as much time as we can. They are good boys and are growing up well. In spite of life's trials they will do well.

Friday, May 6, 2011

We are planning on heading off for a few days for a well deserved break. Holidays with a diabetic child always take a bit more planning than usual. Hopefully we'll manage better than we did last time.....

The week before Christmas we packed the tents and headed off to Abel Tasman, at the northern tip of the South Island of New Zealand, for a week in the sun. We piled the boys in the cars and headed north stopping in Kaikoura for lunch. Now Finlay doesn't travel light. There are a few extras we need to pack for him. Quite a few. What with his insulin pump, feeding pump, infusion sites, feeding sets, insulin, daytime digestive enzymes, night-time digestive enzymes, gastrostomy tube, glucose meter, test strips, spare test strips, alcohol wipes, glucagon, spare glucagon, syringes (various), plasters, antibiotic cream, spare cartridges, meter batteries, pump batteries, pump power cord, spare gastrostomy tube, lancets, back-up gastrostomy button, bottles, mixing pots, hypogels, spare hypogels, back-up hypogels, emergency back-up's a wonder we ever manage to leave the house.

So perhaps we shouldn't have been too surprised to get to lunch and discover we hadn't brought any of his milk! For a diabetic child with a highly regimented feeding plan requiring a high-carb prescription-only milk formula five times a day to delicately balance his blood sugars between damaging highs and potentially lethal, seizure-inducing lows this was possibly the worst thing, other than Finlay himself, that we could have left behind.

So we hastily booked a campsite in Kaikoura, and while Vicky, her sister and the boys enjoyed the delights of the spa pool, I bought the most sickly, sugary milk drink I could find, made sure I had plenty of hypogels (just as well we packed the emergency back-up ones!) and turned the car around heading back for Christchurch.
What should have been a lovely spot for lunch!

But it was worth it in the end!!

Thursday, May 5, 2011

Easily Freaked!

Sometimes it's hard to remember he is just a normal kid.

Recently F has had a few lows in the evening. Something has changed. He's growing, or not growing or doing something different. He is normally fed through his tube at 9pm so we like his sugars to be at the low end of his range by then. But recently he has started dipping just before we check him. Twice recently we've had to get the dreaded orange box out the fridge. Sugars down in the low 1s (about 20-30 mg/dl) accompanied by seizures.

In the last week we've had a CGM put on him for a few days so we can see what is going on but that's for another post.

Anyway, fair to say we've been a bit on edge in the evenings recently.
So a few nights ago when F wakes up crying we're straight into panic mode. Vicky runs in and grabs him. He's screaming, hands shaking, not yet in seizure. Vicky grabs the meter and fires the lancet into his toe. He is still screaming, looking straight at me, almost through me with that fixed stare that just says "help me". Definitely hypo, no doubt.
OK, glucose gel or run for the box in the fridge? There's a gel on the table...grab it.... tear it open...try to get F to take it....refuses, more screaming.... Of course he refused it. He's hypo, can't think straight. Have to get it down him somehow....or run to the fridge? That's it....glucagon before he seizures.....

Vicky stops me. "Er, 8.4" (about 150)

"What??? Let me test him" 9.3

Oh....F calms down in mum's arms. Just a bad dream. And when we think about it, it's exactly how his brother's were when they were his age and had a nightmare. Shaking, staring eyes, screaming.

So we settle him down and turn out the light. I still head for the fridge, but for the chilled green bottle rather than the orange box!! A far more pleasant medicine!