A letter to my daughter

Dear Miss Chief,

My darling, special, amazing little girl, today marks the end of your first year of living with Type 1 Diabetes. Congratulations. You have not only survived but remained happy and healthy, and together we have learned so much; about diabetes and food but mostly about ourselves and each other. 

Your strength and determination are both an asset and a liability.  As your mother it is my job to make sure you know how and when to use them. But without a doubt they are what have got you through this first tough year, still with a cheeky smile upon your face and a crazy giggle in your heart. I always wanted a spirited, slightly cheeky child (with blonde pigtails, funnily enough) but I never guessed what a tough job it would actually be to parent one. 

Do you remember when we first came home from hospital with all our crazy equipment: meters, insulin vials, pens, logbooks? No, you probably don't remember the logbooks but I did a lot of writing in those first few weeks and a lot of talking to doctors on the phone. But perhaps you remember how you refused to have your injections and we told you what would happen if you didn't: that you'd get sick and end up back in hospital. And that mammy and daddy held you down and gave you your insulin the "hard way". We only had to do that a couple of times. You soon realised it was non-negotiable. After that if you refused we just said, "easy way or hard way?" You always chose the easy way even though that must have actually been the hardest for you. 

Parties were tough at first. You'd start off with the best of intentions but pretty soon your blood glucose level would be through the roof and you'd be manically grabbing all the food you could, sneaking it if I'd asked you to stop. These days we are both so much better at it. We have your pump which means more flexibility and less planning ahead and mammy is so much better at carb counting. But it's mainly because you always show me exactly what you're eating and check before you do. 

Daddy and I are so very proud of you for the way you have accepted diabetes as a part of your life. In the early days you even used to remind us if we hadn't given you your insulin before your meal. Even now you will sit patiently with your food in front of you asking if it is ok to start eating. You have embraced your pump and never once refused to wear it, as I worried about so much before we got it. Well maybe just when you're playing in the pool but that is fair enough. You have every right to behave and feel like a normal child. Because in every way you are exactly that. Normal. 

In every way except for one: you are you. Crazy, wild, funny, entertaining, loving, intuitive, wilful, brave, outgoing, confident, intelligent, adventurous, daring, strong, creative, beautiful you. I love you for that and I couldn't ask for more in a daughter. 

You have everything you need and more to make it in this life even with diabetes and I am confident you won't let it stop you achieving anything you want. I have no doubt that in 10, 20 or 30 years time I will be writing a similar letter saying how proud I am of all you have done and all that you are. I only hope that we continue to support you in the best way we can as I have no doubt you will just get on with things so much so that those around you forget you even have diabetes. Of course the real hope here is that medical science advances to the state where you either don't have it any more or are able to live your life as though you don't. 

Until then my precious daughter, go get 'em, and in the words of your brother (and probably He-Man), "take on the world."

Lots of love from

Mammy

Xxx

You can air-pop real popcorn in the microwave

Oh my goodness, I think I've been living under a rock. I have just discovered you can actually microwave popcorn! I kid you not. Whenever I've heard people talk about microwaving popcorn I have just assumed they mean the stuff in a bag, which I don't trust as I'm sure it has lots of other random ingredients. And it's a bit pricey compared with the plain kernels. So for the last few years I've been coating my popcorn in oil and vigorously shaking a heavy pan to get it to pop, all the while wondering if I should invest in a popcorn maker as surely air-popped is healthier. 

Turns out though that you can actually air-pop pure unadulterated popping corn in the microwave. I had a play around with it this afternoon and this is how you do it. 

1. Place popcorn in a microwaveable container with lid. Choose the smallest you can get away with and cover the base with kernels. 
2. Microwave on high for 2 minutes.
3. Remove and sprinkle with salt, melted butter, olive oil, whatever you want really.
4. Rinse dish. 

It's that simple.

Next time I'm going to sprinkle the salt over the kernels and give the dish a bit of a shake before I microwave it as it was a bit bland. I am ridiculously excited about this discovery. No more nasty gunky oily pans to clean and it's quicker too.

And only 4g carbs per cup, for all you carb counters out there. 

Bad points: I think there were possibly a few more unpopped kernels than usual and my serve was a bit chewy but that was from the first batch, which I'd done in a larger dish. Dish size is important as clearly the kernels need to be touching one another to generate enough energy to pop. I won't try to explain it in sciencitific terms at the risk of getting it wrong but suffice to say not covering the base of the dish with kernels resulted in poor popping performance. Clearly more testing needs to be done. Can't see the kids complaining about that. 

Tip: most parents would find this a useful tip but particularly those with T1 kids. When going to the cinema take a plastic cup - one for each child - that holds 250ml and use it to dish out popcorn. Then you can a) monitor how much your kids are eating (and count carbs for the T1s) and b) keep the box for yourself. I was rather impressed with myself for coming up with this one. 

Pumped about pumping 3: Two months on

Gertrude! Gertrude! Gertrude!
How do I love thee? Let me count the ways.

1. I no longer stress over how many carbs Miss Chief may or may not eat in a particular meal.
2. I no longer stress if I don't know the amount of carbs in something.
3. I no longer stress if Miss Chief is at a party and I can't keep tabs on what she's eating or if the table is full of high-carb rubbish.
4. I no longer have to treat hypos after we've had pasta for dinner, and then have to wake Chief up at 10pm to give an extra needle.
5. I no longer have to worry about extra needles at afternoon tea if someone is having birthday cake.
6. I no longer have to try to delay Chief's eating at parties so that we can give her the tea-time needle a bit earlier to cover a massive afternoon snack.
7. I no longer get the kids settled in bed (a massive effort in itself) only to then realise we have forgotten the bedtime levemir injection.
8. I no longer stress over what to give Chief to eat if her BGL is a bit high at morning or afternoon tea.
9. I no longer spend my pre-bedtime or the middle of the night wondering if Chief's BGL is high enough to warrant waking her for an extra needle, or if I should just leave it and try to sort it out at breakfast.
10. Chief can eat what she wants when she wants (as long as it's healthy and she isn't constantly asking me for more food... but that has nothing to do with diabetes).
11. Chief no longer has to endure 5 needles a day.
12. Chief no longer has to choose between missing out on cake or having an extra needle.

Gertrude (and a very stoked Miss Chief) 

on the day she came to live with us.

In short Gertrude, the gorgeous name Miss Chief gave to her pump, has significantly reduced the stress in this D-family.

I would like to point out that pumping isn't for everyone. It does mean being permanently attached to a medical device (albeit a small, temporarily removable one). And it is perfectly possible to get great control and a good lifestyle on MDI (multiple daily injections). It's a very personal choice and one that a family should not be pushed into. I think the way that pumps work and calculate insulin is a great basis for MDI actually and we got our best results once we started working out things such as I:C (insulin to carb) ratio (i.e. how many carbs does 1 unit of insulin cover) and ISF (insulin sensitivity factor) (i.e. how many mmol/ls will 1 unit of insulin lower your BGL by). We worked it all out manually, which was laborious, but there are apps that will do it for you.

I'm sure that over time we would have got great control, and hopefully with minimal stress and lifestyle or diet changes if we had stuck with MDI and developed processes and techniques to support that. However, I have absolutely no regrets about making the move to a pump and I think it's fair to say that Map Man and Miss Chief would both agree.

Many of the concerns that I had prior to pumping turned out to be non-issues. These included:

• How will she wear the pump, especially with a dress?
• Will it get in the way when she's playing dress-ups/doing ballet/swimming?
• How will she sleep with it at night?
• Will we wake her up at night trying to get to the pump to put in her BGL?
• Will it be uncomfortable? Will she refuse or hate to wear it?
• Will cannula changes be really stressful especially as they happen less frequently?
• Will I forget to change the cannula, given that it only happens once every 3 days?

Well, that last one does almost become an issue when life gets really busy. And whilst we're getting much quicker at doing cannula changes, it is just another thing to have to fit into a busy day. But not every day (hurrah). And would you believe removing the old cannula is way more stressful than inserting a new one? You know how most kids hate having band aids/plasters/elastoplasts removed? Well it's kind of like that. Reminds me of the horrible sticky eye patches they used to slap onto my good eye at the Eye Infirmary when I was a kid, with no thought as to whether it was stuck to my eyelashes or eyebrows. And then they'd just rip it off with no sympathy or concern. I never got to see how many of my lashes and brow hairs were stuck to those patches but I bet it was a few. I hated hated hated those patches. So I try to be really sympathetic about this when removing cannulas. I must be doing okay because the last time Chief declared "I didn't even feel that!" Yay, me!

It doesn't come without its challenges. There have been a couple of kinked cannulas resulting in reduced absorption of insulin and accompanying highs. There have been snacks that we've forgotten to bolus for. We're still tweaking and testing. We are currently experiencing pre-lunch hypos nearly every day so I have to figure out whether she needs less insulin for her morning tea carbs, or whether she needs a reduced basal (background insulin) and if so, when and for how long.

Let me tell you a little story. Yesterday, I was a bad mammy. I had such a rushed day and I was frantically trying to get dinner into the slow cooker before rushing everyone out of the door for a dental appointment. Chief's grandparents are learning how to use the pump and had accidentally given a lunchtime bolus of 0 units of insulin so she'd woken from her nap a little high (12.9) and feeling a bit hungry as a result.

"Mammy, I'm hungry. I'm hungry, Mammy. Can I have this pear? Mammy, can I have this pear?"

Nag, nag, nag, blatent refusal to eat anything else I suggested that might be low carb. So I gave in and weighed the pear. 23g carbs. As I just wanted to get dinner on I figured I'd let her eat the pear whilst I did that then weigh the core and subtract that from the total before putting it into the pump. Anyway, we just about managed to wake up the Happy One and get to our appointment on time and afterwards, on the way to visit the grandparents where they were housesitting, we took Chief for a promised treat. I tested her before she tucked into her chocolate frog and she was 16.7!!! I had completely forgotten to give her insulin for her pear, poor thing. So I popped in the carbs for the chocolate, plus told the pump her extremely high BGL, at which point Gertrude pointed out this was a bit high and maybe I should check Chief's ketones (I always feel like I'm having a finger wagged at me and Gertrude is saying "tut tut tut" when this happens). Less than two hours later, after a bit of running around on the beach followed by a bath, we tested again before dinner and she was 5.7! I was amazed.

No doubt the physical activity helped but back on MDI that would have been a very stressful situation. Firstly, I doubt I would have let her have the pear in the first place. Secondly, we probably would have discussed whether or not she was willing to take an extra needle for the pear. Thirdly, getting a 16.7 at 4.30pm would probably have led us to insist she keep the chocolate frog until after dinner.

I don't know whether pumping will mean better control for us but it certainly is far less stressful and has had a massive impact on all of our lives. For anyone considering it I would highly recommend it. I'll bet all the things holding you back will be irrelevant once you taste the freedom pumping can bring. We LOVE it!

Pumped about pumping 2: What, how and why?

My last post talked about how we made the decision to get Miss Chief an insulin pump, rather than multiple daily injections, and this week sees the end of a long wait - we get our pump on Thursday! But what exactly is a pump, how does it differ from injections and what's the big deal?

What is an insulin pump? As our educator puts it, pumping is just a posh way of delivering insulin. It connects to the body via an infusion set, which consists of tubing plus a cannula. The cannula is either a flexible Teflon needle or a firm stainless steel needle, with an adhesive patch and a plastic connector. The cannula goes into the skin anywhere you would normally inject. Insulin is always injected subcutaneously, i.e. just under the skin, and not intramuscularly and once the cannula is in you can barely feel it. The adhesive dressing secures the plastic connector in place and this is what the tubing is attached to. Tubing, and therefore the pump, can be disconnected and a small plastic plug put in its place, during certain activities, such as playing on the beach, or contact sports. The other end of the tubing connects to a cartridge of insulin which screws into the pump. The pump itself is about the size of two old cassettes, or just larger than a mini-disc player. Or in today's terms, a slightly shorter, thicker smartphone. Maybe if you cut your phone in half and put the 2 pieces back to back you'd be getting close to the right size and shape. It can be clipped onto your waist band, worn in a Lycra band against the skin under the clothes, or carried in a bum-bag style pouch over the clothes. 

A steel cannula and infusion set

Steel cannulas are literally just pushed into the skin. Some come with an extra adhesive patch, called an anchor, connected via a short bit of tubing to the cannula. The main tubing then connects to the anchor. This prevents pulling on the needle if the pump is knocked or dropped. Teflon cannulas, being flexible, require insertion via a larger introducer needle and generally come with an automated insertion device. You spring load the housing, place it on the skin and squeeze the sides. The device is released and shoots the needle into the skin super quick. You then remove the housing, including the introducer needle and all that remains is the plastic cannula with its adhesive patch and plastic connector. In my limited experience these flexible needles are more comfortable. They can also be left in for longer - 3 days as opposed to 2 for the steel. They are prone to kinks, however, which can disrupt the flow of insulin. In an attempt to get Chief to have a needle in her tummy rather than her buttocks I made up a rule that Teflon cannulas go in the tummy and steel ones in the bottom. Despite the fact that the connector for the Teflon infusion set comes in a rather fetching pink, Miss Chief is adamant that she will only use steel. 

How does it work? The pump uses only rapid acting insulin. You set up a basal rate and it delivers tiny amounts of insulin more or less constantly. Chief's starting basal rate is 0.2 units per hour. As a comparison she currently has 2.5 units of long-acting insulin twice a day. In addition to this, during set up you tell the pump how much insulin you think is required to bring her blood glucose levels down a certain number of mmol/l (correction factor) and how much is required to cover grams of carbs (insulin to carb ratio). Each time you check a BGL you enter it into the pump and it uses these settings to calculate whether a correction is required. If eating, you also enter the grams of carbs and the pump will include this in its calculations. 

Pump with infusion set connected

Why do we want one? The insulin regime with a pump is very similar to the multiple daily injection (MDI) basal-bolus regime Chief is currently on but with what we perceive will be the following benefits:

• Fewer needles: 1 every 2-3 days instead of 10-15.
• Easier and more frequent corrections, especially overnight as it doesn't mean an extra needle. Hopefully this means less disturbed sleep patterns for the Chief too.
• Smaller more accurate doses of insulin. Currently, we often have to decide between giving her very low carb snacks, an extra needle (which may require more carbs than we would ideally give in order to match the lowest possible insulin dose), or allowing her glucose levels to ride a little higher than desired until the next needle. The pump should remove this Sophie's Choice. Additionally, as the insulin is infused via a needle that remains under the skin she should get the entirety of doses; currently we find drops of insulin on the end of the needle and on her skin and we're never entirely sure exactly how much insulin she's had.
• Having the pump calculate doses instead of us, saving us much time. We'll still need to measure BGLs and count carbs but won't need to worry about calculating doses. There are smart phone apps that will do this for you too but as we knew we were moving to a pump we never bothered buying and setting one up.
• More accurate basal dosing as amounts can be temporarily increased or lowered according to needs, rather than staying in the system for 14-24 hours, which tends to lead to more conservative doses.
• More flexibility with food amounts. Instead of having to guess how much Chief might want to eat before a meal we can input any extra food she ends up eating afterwards. Or if she is high before a meal we can correct the BG, plus give a small amount for food, adding the remaining amount after the meal according to what she has eaten.
• Fewer hypos followed by highs when eating low GI food such as pasta. The pump has various options for delivering bolus (or mealtime) insulin doses. For example, you can opt to give a portion of your insulin with your meal, and then gradually deliver the rest over the next few hours without any extra needles.
• More freedom with food at afternoon tea. Currently Chief is limited to extremely low carb meals at afternoon tea because by this time she is all out of lunchtime insulin. On special occasions, such as birthdays she will have an extra needle in order to enjoy some cake but most days if she has anything much more than 5g carbs without a needle she will have slightly elevated levels. Usually it's not enough to worry about but you wouldn't want to do it every day. On the pump she can have carbs if she wants with no extra needles.

There are downsides to using the pump too. For example, because there is no long lasting insulin in use, should anything go wrong with the pump you have an increased chance of elevated ketones due to not receiving insulin over an extended period of time. Therefore frequent testing is more important on a pump, particularly at night. We test 8-10 times a day anyway, and most nights, so it isn't much of a change for us. Some people experience kinks in the flexible cannulas. When high levels are noticed on a pump there is an added element of confusion in first determining whether there is a kink in the cannula or air bubbles in the line. There is the inconvenience of having to carry the pump around everywhere and remembering to reconnect if you remove it to take a bath. Also pumping is more expensive. Whilst our private health insurance will cover the cost of the pump, we need to pay a fee, albeit subsidised, for cartridges and infusion sets costing approximately $30 a month. It's more stuff to store in the cupboard. And yet we still need pens and needle tips as back up in case anything goes wrong with the pump.

I am pleased to have had the last 6 months learning the ropes with MDI though. It has taught me a lot about diabetes and how to manage it and helped immensely with preparation for the pump. I feel comforted that at any time we can ditch the pump and return to needles, be it for a day, a week or longer and we have the confidence to do that. 

Whilst I am extremely excited about this new phase in our diabetes journey I would like to point out that pumping isn't for everyone, and that's fine. There is no perfect solution that doesn't involve a working pancreas and it is perfectly possible to get excellent control on MDI. I have an amazing friend who does just that and we have been slowly getting better at it, resulting in much better behaviour from the Chief. I have even been tempted to think that pumping is a lazy way of dealing with diabetes. But at the end of the day diabetes is hard work, no matter how you manage it. And when you have other children, a house and a career to manage too then why not make life a bit simpler if you can. Pumping may not be the simple solution for everyone but I'm hoping it will be for us.

Pumped about pumping 1: Deciding to get a pump

The Animas Vibe is the first waterproof pump.

Last week we had our last of 3 insulin pump education sessions. This Thursday we head off to hospital with little Miss Chief in tow and come home with a $9000 life saving insulin infusing super computer which the Chief will carry with her at all times. We will learn a new way of dosing and managing insulin and spend the following few weeks doing a lot of testing and tweaking to get it set up just for her.

When our lovely diabetes educator, Claire, first told us about the pump, during those first crazy days in hospital, I wasn't particularly interested. The thought of my daughter being permanently attached to a life-saving medical device was extremely confronting. It felt like it would be a constant reminder of her condition. I liked the fact that we could just inject her and forget about it. I really couldn't understand why anyone would want a pump.

Of course they're such a big technological advancement in the field of diabetes and are becoming increasingly popular that I couldn't just forget about them. As I was exposed to more and more T1 families I noticed that a considerable number of them used pumps. As our own family members became more aware of the disease they would say things like "so and so has a pump. Have you heard of them? Would you get one?"

One of my initial concerns had been that it wasn't really my place to decide something so huge for someone else even if she was only 3 years old. I wondered how it would fit with her clothes, especially dresses and whether it would be a total pain on one of those days where she's playing dress ups or just getting changed 20 times. By the same token, it didn't seem fair to rule it out for her without introducing the idea to her and giving her some say in the matter. And as time went on I realised that injections don't allow you to forget about your diabetes. Anything but. It's constant and with injections any time you want to eat you have to figure out whether you should or shouldn't eat carbs or dose some insulin. 

As I mentioned in a previous  post, at the end of last year I took Miss Chief to a JDRF-sponsored family bowling event and we met a little girl, Miss M, just a little bit older than Chief who had recently started using a pump. The two girls became friends and Miss M and her mum showed us her pink Animas Vibe pump and how it worked. Miss Chief marvelled at how little Miss M was able to share a bag of teddy bear biscuits with her friend whilst her mum casually punched her BGL and 8g carbs into the pump. Meanwhile Miss Chief and I wandered around the bowling alley looking for a quiet spot for her to lie down and bare her buttocks for her injection. Her lunch was carefully planned to match her dose and at this time I had only a fair idea about carb counting and very little clue how to match insulin doses to carbs. There was very little room for flexibility. As we found a quiet comfortable sofa Miss Chief said to me, "but Mammy. I don't want my injection. I want a pump." And that set the wheels in motion.

By the time I told our educator and paediatrician at our clinic visit a few weeks later that we wanted to discuss moving to a pump, we were getting pretty good at carb counting and weren't far off calculating an insulin to carb ratio which would allow us to give more accurate doses. This doesn't mean that the pump was no longer useful to us. On the contrary it meant that we were well on our way to pump preparation as accurate carb counting is essential to pumping. The medical team were very supportive of our decision even though I wasn't 100% certain of it myself. We were warned we could wait up to 6 months to get the pump due to limited clinic times for pump education and start sessions so I got us onto the waiting list so I could spend at least part of that 6 months figuring out if it was the right thing to do. The paediatrician signed the approval forms as soon as I told her we were thinking of it, saying, "It'll be great for you guys. I'll sign this now so I don't hold you up later if you decide to go ahead. Remember, it's a lifestyle choice and you, as the parents of a 4 year old, should be the ones making the decision, not her." 

To a certain extent I agreed with the doctor as we are managing Chief's diabetes for her, but at the same time a diagnosis of diabetes had meant such a huge change to the Chief's life and we couldn't control or change that. I didn't want to introduce another unwelcome change, one that we did have control over, just as she was getting used to things being the way they were. I spent the next few months making sure that it was the right decision for all of us. This meant not just researching the different pumps but talking to other parents, especially of girls, about how their children wore their pumps with different types of clothing, looking at different infusion sets and cannulas and reading books about pumping insulin. The books were a great source of information on how to manage diabetes and got me, as our educator put it, "thinking like a pump."

Chief and I try out cannulas.

Over the past few months we've attended information evenings and played with different pumps. We settled on the Animas Vibe, primarily for its waterproof feature. I met some amazing mums who allowed me to bolus their children , ie administer their insulin via their pump. Map Man and I have each tried a couple of different cannulas and even the Chief has tried a steel cannula and decided that's what she's going to use and there's no need to try again until she gets her pump. Fair enough. I can't believe it's come around already and it's fair to say we're pretty excited about it. Only three sleeps to go...

Next: The what, how and why of pumping.

5.5: The Holy Grail of BGLs

Apparently in the world of D there is an ideal number that all diabetics want to see on their meter. This number is so sought after that there is an entire Facebook group dedicated to people posting photos of their meters displaying this number. The group is called The 5.5 or 99 Club, so called because 5.5 mmol/l (or 99 mg/dl if you're American) is that much desired number.

Well, guess what? We got our first 5.5 today. Yes, here's proof:

I do actually get excited about this sort of thing. Chief has spent so much of the last 6 months with readings in double figures that I simply love seeing 5s, 6s and 7s on her meter. And well, I really didn't think I'd see a 5.5 until she had her pump (yes, yes, more on that later, I promise).

This beautiful photo of the perfect number belies the morning we had getting her there, however. I would love to say "it started off as any other ordinary day" but it didn't because last night we had pasta. Pasta, the one thing, other than eggs, that everyone in the house eagerly demolishes in silence, and it is a scourge on the levels of a Type 1 Diabetic. Sad, but true. (Yet another motivation for getting a pump: the combo bolus! Yes I realise I am speaking double dutch. All will become apparent in due course. Just not today.)

So last night we had pasta, and rather than give her all her insulin at once and have her hypo after dinner, as is usual, or delaying her insulin and having her go hyper after dinner, or end up having to give her two needles, which nearly always happens with pasta because she always goes high later in the night, regardless of whether she's gone low after dinner or not. Rather than all that we tried a new tactic, based upon the advice of a very knowledgeable friend. This friend slightly reduces the rapid insulin (to avoid a hypo) and slightly increases the long-acting insulin. Previously we haven't been game to do this as we didn't give Chief any long-acting at night but as she is emerging from honeymoon (i.e. producing little to no insulin) we have been playing around with long-acting insulin at night and felt more confident in doing this.

Apologies for getting technical. To cut a long story short, there was no hypo, then a not unsubstantial rise later at night, followed by a slight drop before breakfast. But she still woke a bit high and needed extra insulin to bring her back down. She also had low GI porridge for breakfast. A ton of it. And fruit. That girl could eat more breakfast than a sumo wrestler. I gave her 8 units of rapid insulin for breakfast (yum!), which I think is a lot. Occasionally she might get 6 or 7 but usually it's around 4 or 5. I don't think I've ever given her as much as 8.

More than 2 hours later I tested her at morning tea time as I dropped her off at daycare. She was very high, around 20mmol/l. I knew she still had active insulin, but probably also had active carbs. Her morning tea also contained carbs so I had to do a quick calculation and rethink and completely change her daycare meal and insulin plan. It was slightly stressful as I had to replan and then instruct someone else on how to manage her, and I wasn't sure whether I should be taking her home and monitoring her there. Anyway, I calculated that she had almost 3 units of insulin left in her system and that she might end up crashing down but by then it would probably be lunchtime and she could just eat lunch. I checked her again half an hour later after I'd settled Happy in his room and done my calculations, quickly swapped her very low carb afternoon tea for her morning tea so she could eat with her friends and instructed the teachers to call me after each test for the rest of the day.

The next test was when we got this beautiful number. I could have jumped for joy. A few months ago I would surely have stuffed this up and ended up with high numbers all day. Her teachers are much more confident now too, which helps matters immensely. She had her usual food and insulin at lunchtime and at afternoon tea took an extra needle to cover the extra carbs.

This is by no means a typical day. Most days the same thing happens and it's all reasonably predictable. But this is fairly typical of the kind of curve balls diabetes throws at us and how we need to be able to think on our feet and be constantly mentally aware. This is why us D-parents are always so exhausted, drink lots of coffee and are incapable of holding a normal conversation. Just so you know.

Pump Boutique launches: Cute insulin pump accessories

Believe it or not there are actually one or two good things about having had diabetes batter its way into our lives. One of those is the amazing people that we probably wouldn't have otherwise met.

We have been very fortunate to have met a lovely family with a 5 year old daughter diagnosed about 1 year ago with Type 1 diabetes. She and Miss Chief hit it off right away. By the end of their first meeting, at a JDRF-sponsored bowling event just before Christmas, they were hugging, dancing and spinning each other around. Her mum, Angela, and I also became friends.

Miss Chief and Miss M hitting it off

When we met, little Miss M had been using an insulin pump for a few months. Her mum found it difficult to get cute accessories for it. There was plenty of stuff available overseas but then the delivery costs were a bit much. So she decided to start up her own business, importing items in bulk and then selling them on with a much more palatable local Australian postage rate. After months of gathering products, photographing them and getting a website set up she has finally launched Pump Boutique.

I have already purchased this cute little Tinkerbell pump pouch for Chief (yes! We're getting a pump!! More on that later). There are a few other things I have my eye on and as the business grows more products will be added.

Angela says that she likes to give Miss M an element of control over her diabetes and I agree that this is extremely important. Every day she gets the choice of wearing her pump or having injections. I'm assured she ALWAYS chooses the pump. She then gets to choose how to wear it, whether it be in a lycra band that sits close to her body, in a fun pouch such as this one, in her pocket or clipped onto her waist band. This is one way we can make diabetes fun for our kids and give them back a bit of freedom and flexibility. This is particularly important for pump wearers as they have to carry their pumps with them all the time, so why not make it a funky and fashionable accessory. Incidentally, Chief and M both have pink pumps! Girls will be girls.

Pump Boutique also sells items for non-pump wearers, such as this cool heart bag for carrying your meter and jelly beans (plus insulin pens, spare pump infusion set, purse, phone or keys). I have my eye on this one too.

So whether you or a family member or friend lives with diabetes, or you just feel like buying Miss Chief a pump start gift, please have a browse around the site and support this new venture by sharing the link with others. Angela welcomes any feedback you have on the site as it is still in its infancy. You can let her know via her Contact Us page.

www.pumpboutique.com

IronmAnna

I'm a bit late with this post as I have been making curtains - yes! Really. I know, I'm stoked. Although they're not finished yet. But I had to pause just to say SHE DID IT!!!!

 

Yes! On Sunday 25th March my good friend of 18 years (crap! we're officially old) became an Ironman. And in the process she has managed to raise over $5000 for JDRF, which will be doubled to $10,000 by Macquarie Bank.

I am so proud of her. I knew she could do it but now she actually has done it I'm amazed and humbled. I also feel incredibly lazy, which I don't thank her for. But if I manage to get off my butt and go for a swim tomorrow because of that I will thank her. Might I add that if I manage 1000 metres in the pool tomorrow I'll be pleased. Anna, for whom swimming is a fairly new sport, managed 1500 metres in rough, open water. Conditions were so bad they changed the swim course and significantly reduced the length. Brave, brave girl.

I followed her progress throughout the day on the Ironman website and on Facebook. The friends who were with her posted photos and amazingly, in every single one she is smiling and looks incredible. She's still the same old Sunshine Anna I met at uni all those years ago. Good to see.

Here is a photo of her during the run having already completed the swim and a 180km bike ride (thanks Kirsty Miller). I'm sure you'll agree she looks amazing!

Crying out for a cure

How is it that after 5 months of living with Miss Chief's diabetes I can still spontaneously burst into tears at the thought of what she has to go through every day?

Do D-parents ever get over this? I'd give anything to take this from her, for it to be me instead of her. The old phrase "this is going to hurt me more than it hurts you", I get that. I really, really hope it does hurt me more than it hurts her. Every so often she screams when she gets a needle. Sometimes she cries at the indignity of lying on her tummy so we can put a needle into her bottom. Sometimes she is perfectly willing, lying perfectly still but for some reason it hurts and she cries. And it tears me apart inside. Every time. It breaks my heart to think that she might feel a fraction of the pain I feel for her. Watching her brother tucking into his breakfast until he's full whilst we quiz her about how much she wants, weigh it, calculate carbs and insulin, give her a needle, all before she can eat.

It is such a cruel disease to affect children and therefore their entire families, rather than adults who are much better equipped to deal with it. Make no mistake, this is not an easy thing for anyone to live with at any age and diabetes crafts some strong, healthy, switched on and incredibly brave kids. But what a price to pay. Right now, at this particular moment in time, I have never wanted a cure more.  I read a post on Facebook, one of those sweet, poignant and utterly annoying wise-mother-to-naive-daughter type posts. It said,

"The physical wounds of child bearing will heal, but becoming a mother will leave her with an emotional wound so raw that she will forever be vulnerable."

 and

"I want to assure her that eventually she will shed the pounds of pregnancy, but she will never feel the same about herself. That her life, now so important, will be of less value to her once she has a child. That she would give herself up in a moment to save her offspring, but will also begin to hope for more years, not to accomplish her own dreams, but to watch her child accomplish theirs."

At that moment the desire to cure my child was overwhelming, as was the utter anguish that this is just not currently possible, and my feeling of inadequacy at having done no fundraising and having no idea where or how to start.

But it's a moment and it will pass. I'll pick myself up and get on with the day, counting carbs for dinner, researching insulin pumps and preparing for Diabetes Camp. Because this is what I do now. And there will be more such moments. And I'll get over them too. And move on. And on. Because what else is there to do? This is what keeps my girl alive.

Helter Skelter: Sharing your passion with your kids

What do Enid Blyton's The Enchanted Wood and The Beatles' Helter Skelter have in common? Read on and ye shall see...

One of the greatest gifts you can give your children is sharing your passions. My parents gave me a love of books, music, travel and wine and I am now passing the first two on to my own children. I will move onto travel soon but shall save the wine until much later.

For Christmas the Chief was given two of my favourite childhood books: The Enchanted Wood and The Magic Faraway Tree. We've been reading them together. I am actually quite amazed that a 4 year old can sit and listen to a book that has chapters and very few pictures but she does. It took her a while to get that we read all of one before starting on the next though.

Did you ever read those books? I'd forgotten a lot of the details. I could only remember the pop cakes and toffee. I guess that's another thing my parents shared with me that I'm now sharing with my kids: a love of food. Tonight we read the chapter about the funny old saucepan man who causes so much clanging and banging with his saucepans that he doesn't always hear correctly. Reminded me very much of The Fawlty Towers episode, Communication Breakdown, which I'm sure I'll share with my kids in due course.

We got to a section in the book that read: "The saucepan man ran helter skelter to the hole..." when suddenly the Chief burst out with "Helter Skelter, helter skelter", her rendition of The Beatles' classic. And I looked at her proudly and thought, "that's my girl" as I'm sure my dad will think when he reads this.

,

I would just like to add that I don't talk about Happy One much but he is just adorable at the moment. He's a stubborn creature (can't think where he gets that from Grandad, or more likely Grandpa!) with a love of cake (once again, where did he get that from, chaps?) and cars (Grandad); he sleeps in the car and with a car. His language is maturing every day and he is starting to formulate two and three word sentences. How can you resist, "cuddo-mummy, wanna cuddow mummy"? Which, of course means "cuddle". So sweet. Tonight he told Map Man, "I wan nana-weet", meaning banana and weetbix (weetabix). He cries when he doesn't get his own way and if that doesn't work he screams, throws things, hits, pushes, lies on the floor and kicks his legs and slithers along on his back like a snake. If you have hold of him at the time he proceeds with a back arch a yogi would be envious of, doubling over and out of your arms. He never wants to eat dinner but he's always up for cake, cereal or egg. If we manage to give him something he likes he'll ask for "more" regardless of whether he actually wants to eat more. He gives the loveliest cuddles and kisses and follows the Chief around like a little puppy dog at times. And she is such the big sister with him, taking his hand and leading him around. He also has violent tendencies, which worry me, and loves to lounge in his rocking chair with his milk in his hand like an old man. He is impossible to take photos of as he always runs around the back of the camera to have a look just as I'm pressing the button. Here are some pics I took of them at Underwater World this afternoon.

And to wrap up I thought you'd be interested to know I just found my laptop mouse in the bathroom, courtesy of Happy.


Well do you, don't you want me to love you....

Hey! I just wrote a whole post without even mentioning diabetes.

Doh!

Warning: Undiagnosed Diabetes Kills!

I have lost count of how many of these stories I have heard in the last five months since the Chief was diagnosed with Type 1 Diabetes. It is terrifying, infuriating and utterly confounding.

 

Just last week a young boy in the United States died in his bed from ketoacidosis after suffering from undiagnosed Type 1 diabetes. His parents thought he had a stomach virus. But within days he had slipped into a coma and died after his parents were unable to wake him one morning.

 

And now the classmate of a close friend's son is seriously ill in intensive care after his GP failed to diagnose diabetes. A naturally athletic and active boy his mum was understandably concerned when she noticed him going off his food and losing a significant amount of weight. The GP told her there was a stomach bug going around but that evening her son collapsed.

This does should not happen. We must ensure that both parents and GPs are more aware of the signs and symptoms of type 1 diabetes and how easy it is to diagnose.

The symptoms are often some combination of the following:

1. Excessive thirst. Have you noticed your child drinking more than other children or more than they used to?
2. Frequent urination. Has your child had any bed-wetting incidents after being toilet trained? Do they wake in the night to go to the toilet? When out do they ask to be taken to the toilet more than other children or do they go more than you do?
3. Extreme hunger or loss of appetite. Miss Chief was exceptionally hungry leading up to diagnosis and in fact we thought it was a growth spurt. But some children may lose their appetite, especially as the disease progresses. In advanced stages vomiting may occur.
4. Sudden and/or extreme weight loss. Most of us don't weigh our children but perhaps they seem a bit thinner. Maybe their clothes have become a bit baggier.
5. Tiredness and lethargy. Is your child sleeping more or less active than usual?

If your child has any of these symptoms take them straight to your GP. Please, please insist that your GP does a blood glucose (sugar) test. It is a quick and simple procedure that consists of either testing a urine sample or pricking the finger tip to obtain a small sample of blood. Do not feel like a paranoid parent and do not accept the response of "it's just a virus" until you are certain that glucose levels are normal in your child. Normal levels in a non-diabetic are between 4.0 and 7.8 mmol/litre. Chief was 24mmol/litre when diagnosed but I have heard of children with levels in the 40s!

If your child does not present any of these symptoms then ask your GP whether they would be willing to do a blood glucose test in these circumstances. Tell them these stories and if they seem dismissive then I strongly encourage you to consider changing GPs if you are able. Both Chief's GP and a GP friend of mine routinely test every child that presents with an apparently severe stomach bug, especially when accompanied by any of the above symptoms. This is the way it should be for all GPs but sadly many of them just aren't aware.

Please share this with all the parents you know, and even non-parents and ask them to share it with all the parents they know. We must get the word out. We don't know why but this disease is on the increase and it is so important to catch it in the early days to prevent serious illness and death.

Reminder to support Anna's JDRF Ironman effort on 24th March

Only 16 days left until the 2013 Melbourne Ironman on 24th March, when the amazing Anna Jepson will prove once and for all that she is indeed utterly perfect and talented by taking part in a ridiculous feat of athleticism in aid of Diabetes research.

Please please please support Anna, if you haven't already. Her extraordinarily generous employer, Macquarie Bank will match your donation. Please help Anna to reach her target of $3500 thus raising $7000 to help children like Miss Chief find better ways of living with this incredibly inconvenient (not to mention life-threatening) condition.

Anna's fund-raising page has a permanent link in the right hand column of my blog until such a time as Anna stops accepting donations but here it is again.

And here, again, is my original post on the craziness that is the Ironman.

Diabetes by Miss Chief

My incredibly talented singer-song writer daughter is now working on becoming a published author and is writing a book about diabetes. I have to admit it is rather good, and extremely informative. I overheard her working on the first draft whilst chauffeuring her to a swimming lesson the other day.

"If you have diabetes then you must be healthy. You must look after yourself all day and you must eat healthy food all day. You must do finger pricks every day and if you want to go on a pump then that's okay."

Brilliant! I can't wait for this book's release and I will be pre-ordering my copy. Watch this space if you're interested in buying a copy for yourself.

Bio-engineered organ to mimic pancreas

Today is a very exciting day in the Type 1 Diabetes world. The Diabetes Research Institute in the US, committed solely to finding a cure for Type 1 Diabetes, has announced BioHub, a project to perfect a mini-organ that will mimic the pancreas, housing protected beta cells that can't be destroyed by the crazy suicidal antibodies produced by the overly eager (and totally confused) immune system. The BioHub will respond to the bodies blood glucose level and produce insulin, just like a real pancreas.

The exciting thing about this is that the first step has already been completed. Donor cells have been transplanted into the liver of Type 1 Diabetics freeing them from the need to inject or pump insulin. The downsides of this are that the cells come from deceased donors and anti-rejection drugs must be taken. The next steps are to allow the body to once more produce its own insulin-producing beta cells by developing a container to house the cells and finding an appropriate site within the body to place it.

This video explains some of the exciting ideas the scientists are exploring and is well worth the five minutes it takes to watch.


Whilst it's still important to ensure that adequate funds are donated to organisations, such as JDRF, for the development of more liveable treatments, this is an equally worthwhile cause. I am extremely hopeful that a cure will be available in time for Miss Chief to benefit for a significant and lengthy portion of her life.

If you wish to donate to DRI's BioHub then please visit this page.

How to save a pair of kids shorts for $2

Money's a bit tight at the moment so I am rather pleased with myself for having saved a pair of Happy One's shorts from certain disintegration for a mere $2. The sad thing about this is that the shorts are hand-downs anyway and I suspect they have already serviced at least two busy little toddlers. But I love them. They're a good quality well-known brand, light-weight, which is perfect for this environment, and they look great. They have an adjustable waist band so they'll fit him for a fair while yet. 

So when the knees went I was a bit disappointed. They looked really cool and I was tempted to leave them but I knew their days would now be numbered so I decided to iron on some patches.

I took myself off to Spotlight. Without the shorts. Not recommended but I was nearby at another shop and thought I'd take the chance to pop in. I was shocked at the price of patches. The cheapest ones were almost $5 each! I picked up a couple of lovely space themed ones. But in the back of my mind I was thinking I could buy a new pair of shorts for that price. Not Pumpkin Patch ones, admittedly, but still. And what if the patches don't fit?

And then as I was on my way to pay I spotted a sales rack that just happened to have some iron-on patches. For $1 each! As the Aussies say, stoked!

Here are the before and after photos:

The smaller patches didn't quite fit but I'm pretty sure they'll hold it all together for a few more months. Time will tell.

Living with Diabetes: Carb Counting 101

One of the first things people say when you tell them that your daughter has Type 1 Diabetes is, "Wow! That must be a bit of a lifestyle change." Or "I suppose that means a big change in diet." Or "Poor thing, does that mean she can't eat sugar?"

Well, the answer to the last question is no; for the others yes, but perhaps not for the reasons first imagined.

The major changes to our lifestyle and diet with regards to diabetes have been things like looking at portion control and watching what the Chief eats like a hawk. In order for us to better manage her diabetes it is important that we understand what affects different foods, and the amount of carbohydrates in them, have on her blood glucose level.

Enter carb counting.

There have been four main stages to our carb counting since Miss Chief's diagnosis 3 1/2 months ago:

• No counting; let her eat anything and everything.
• The Carbohydrate Exchange system
• Mix and Match
• Measuring, analysing and reporting

No counting

For a few weeks after diagnosis we didn't even think about what Miss Chief was eating beyond, "How much? You could feed an army on that!" During this time her insulin requirements were fairly high, as were her BGLs and her appetite was enormous as her body hungrily and eagerly replaced all the weight lost prior to diagnosis.

As time went on she entered what is known as the honeymoon phase, where the pancreas starts producing small amounts of insulin. Her synthetic insulin doses fell and her BGL started to stabilise. We noticed certain periods of the day where she would have spikes and her glucose levels would shoot up. That was when the paediatrician suggested we start looking at the amount of carbs she was eating.

Around the same time I became a little paranoid about the possibility of coeliac disease as Chief complained on and off of a sore tummy. Coeliac disease is not uncommon amongst Type 1 diabetics and Chief's original screening at diagnosis had been inconclusive. So I started a food diary.

Carbohydrate Exchange System

I started counting the carbs Chief was consuming using a book given to us at diagnosis called The Traffic Light Guide To Food - Carbohydrate Counter (download the PDF here). It defines one exchange, or serve, as being an amount of food that contains approximately 15 grams of carbohydrate and lists all the major foods and the approximate carbs in grams and serves. It's called the exchange system because you can exchange one serve of carbs for another. For example, an apple, one slice of bread and 1 cup of milk or yoghurt all contain approximately 1 serve of carbs, so if you generally aim to have one serve at morning tea you could choose any one of these snacks.

It shows how far I have come that I just rattled that list off without checking any of it. The stressful thing around this time was answering other people's questions when I was only just getting my own head around it. Understandably well-meaning family and friends wanted to know what to give her. Well, she can eat anything. The trick is in knowing how much she usually has, how much insulin she usually has to cover that, and how far under or over that usual amount she's gone. These are all things you just can't possibly know in the early days. The food diary has been a massive help.

Mix and match

After a short period of using the exchange system I found it necessary to branch out a bit. I didn't always want to give her half an apple for morning tea. Before diagnosis we would have fruit salad and yoghurt at mid-morning. So, using the book, I worked out a number of combinations of foods that could be given, for example, half a cup of rockmelon, plus a handful of blueberries and half a cup of yoghurt. Some mornings she would have a higher BGL than usual, but not enough to warrant extra insulin, which I wasn't particularly confident in giving anyway. So I worked out half serve snacks. Some packet foods, such as biscuits, would give a serving size as 20g carbs so I would work out how many serves per biscuit and before I knew it I was dealing in fractions such as 1/3 serve. My inaccurate old kitchen scales started getting a bit of a workout and I have never hated them more.

Measuring, analysing and reporting

After a weekend away at the in-laws who did not appear to own (or be able to locate) a single food measuring device* I stumbled across a digital weighing spoon on special in Aldi. Along with a great website and iPad/iPhone app called Calorie King I was now able to measure serves more accurately. I could weigh food and then enter the weight into the app which would give me a carb count in grams. What do you know, all of a sudden I was actually counting grams of carbs.

Then someone posted on one of the oh-so-wonderful Facebook parental support groups that they'd just picked up a set of nutritional scales in Aldi for the bargain price of $15. I immediately sent Map Man out to purchase a set and my life changed forever. For most foods I could remove the extra step of looking the food up and get the weight of carbs straight from the scales. It sounds like a small thing but it saves so much time in my day. It is so quick and easy, Map Man has started doing it too.

Once I had a few weeks of data, I loaded all of the BGL data from our meter into an Excel spreadsheet. I added columns for carbohydrate intake, insulin administered and over a number of weeks input the data from my food diary and added tables, graphs and charts. This allowed me to start looking at the relationship between insulin, BGL and food and to understand the amounts of carbs Chief generally consumes at different times of the day. It has helped immensely in my understanding of what we're doing and has given me the confidence to start experimenting with insulin dose changes. But it's a work in progress and we still have a long way to go.

I am gradually getting better at this whole carb counting thing and I will continue to do so over the next few months and years, but right now it is still quite a large part of my day. In the morning we weigh Chief's cereal and check the back of the packet for the amount of carbs. This has become easier since we started buying packet bran rather than bulk-buy bran flakes from the health food shop. Then I prepare her food for daycare, which is becoming easier now that we've been carb counting a while and have a good idea of the average amounts she likes to eat at each meal. First I weigh a selection of chopped fruit and yoghurt until I have approximately 10g carbs. Then I make a sandwich or wrap and add some veg, fruit or a biscuit so there is about 30g carbs. Afternoon tea is often low carb but I do worry about her getting a bit low in the afternoon. I tried packing some extra snacks just in case but it served only to confuse her teachers who then withheld food from her when she wasn't low. They like me to label everything so they know what to give her when, which removes her freedom to eat what she wants when she wants. Once I've calculated the carbs in all her food, and provided a couple of extra "free" snacks that contain no, or very few, carbs, I write it all down in the food diary. Sometimes I forget and catch up when I get home from dropping the kids off, other times I spend tea time trying to remember and grilling Map Man about what he gave her for breakfast.

The most difficult times are social events, which will be the subject of another post entirely, but even just sharing food with friends has its challenges. For example, my friend often brings healthy baked goodies to our swimming lessons but I'm still not very good at guessing carbs in home-baked foods so I often end up getting the recipe from her and working out the carbs later. Cooking something for the first time takes a bit longer as I have to weigh all the fresh ingredients and look up a lot of other things to calculate the carbs in the meal. But then I have to guess what proportion of that meal Chief has consumed in order to figure out the carbs she had. I often cook vast quantities, enough to feed the family twice over, and Map Man and I have the lion's share of it so this can actually be quite tricky. Thankfully the bulk of our carbs are in easily measurable foods, such as pasta, rice, bread and quinoa. I enjoy mixing my own muesli and usually just chuck a selection of ingredients into a large cereal container and shake it around a bit. No more. Now I have to weigh each ingredient, calculate the carbs in it, work out the total weight and the carbs per 100g. It takes a lot longer than it used to.

It is slowly becoming a natural part of our day and in future, no doubt, it will be something that we just do. Even Miss Chief has been known to get the scales out and pop a piece of fruit on it, demanding "Weigh this, Mummy", when she's sick of waiting for me to give her something to eat.

* I did eventually stumble across a rather random 1/3 cup and using this determined that some plastic beakers were exactly 1 cup in volume. Where there's a will, there's a way.

Cute, or gross? You decide.

I was hanging the washing out today when Chief came running outside.

"Mama, can you come? Asher's in the erm. Ash is in the toy..erm he's..."

Don't you love the way 3 and 4 year olds just suddenly lose the ability to formulate full sentences? It's like they develop this amazing vocabulary and then all of a sudden forget how to string all the different words together. It's like they can't actually get the words out quick enough, as though their brain is working faster than their mouth. Chief has the opposite problem too.

So anyway, there I am thinking ahead of her, wondering if Happy had fallen in the toy box and couldn't get out. Seemed more likely she'd persuaded him to climb in, or even stuffed him in there herself. I couldn't hear him crying or yelling so it couldn't be too urgent.

"He's in the erm... He's erm. Ash is in the..."

Oh for crying out loud, spit it out will you. I actually said that to her once and she looked at me strangely and then spat. Such literal creatures.

"Mummy, Ash is in the bath, the toy, bath, erm, the..."

Starting to make a bit more sense now. We have one of those big round plastic tubs, I just love them, you know the kind that can be an ice bucket, or a toy box, or a washing basket? Well, we used to bath Chief in ours, then it graduated to holding all the bath toys and currently it is temporary storage for random toys in our lounge. Makes sense that he could climb in easily but not get out so easily. I'm sure Chief has done that before too.

"Mama, Ash is in the bathroom, the toilet bathroom. Asher is in the toilet room. He's got poo. Can you come?"

Oh hang on. Not what I was expecting.

Me: "What's he doing in the toilet?"

Chief: "He did a poo. Can you come wipe his bottom?"

Me: "What? Isn't he wearing a nappy?"

Chief: "No."

Me: "Why not?"

Chief: "Because he's on the toilet"

Groan. Ask a stupid question.

Turns out that Happy One did a poo in his nappy so Chief decided she'd take him to the toilet. She set the toddler seat up for him, took his nappy off and then got a bit stuck for what to do. So she shut the door, with him and his dirty nappy inside and came to get me. Now, he hadn't played with the nappy, but it was a stinker and they had made a bit of a mess trying to get him to sit on the toilet seat. But all that aside I am actually very impressed by this big sisterly act. She even wanted to wipe his bottom once she'd watched how I did it. But she soon gave up and said, "you do it" when she realised it was a stubborn one. Yes, cute but still totally gross.