Not today thanks, Diabetes, I can't really be bothered

Some days I really wish we didn't have diabetes in our lives. Some days I just accept it, don't even think about it and go about my business as if it was what we had always done. Some days I'm even almost thankful for the positive things it has brought to our lives: new friends, an amazing online (and offline) community and an enhanced knowledge of nutrition and healthy eating. But some days I really just wish it would go away and leave us alone. I just plain can't be bothered with it.

If only diabetes were knocked down as easily as these pink fairies.

I suppose it's the same with anything, right? You can be happily married and still have days when you think how nice it would be to be single and go home to an empty house with no one's clothes on the floor but yours. And you can love your work but still wish you didn't have to do it every day. 

I even have days when I wish I didn't have kids. I don't mean that I would wish them away. Only that maybe it would be nice if they belonged to someone else. Then I could play with them all day and I'd be the fun auntie or babysitter instead of cranky mammy. They probably wouldn't make much mess because they'd be entertained and I'd have the whole evening to do any chores before having dinner at a respectable time of 7.30pm. Even better is the scenario where this isn't my house either. I could do a rudimentary pick up of toys before their mother gets home and then go home to my fashionable clutter-free house which is totally clean and tidy because no one is ever in it. I could smugly think "I blame the parents" when they misbehaved or had tantrums, instead of wondering what I was doing wrong. I could theorise with myself as to why they presented certain behaviours or traits: they aren't shown enough love/discipline, the parents are too strict/soft, they go to bed too late, the parents can't control them, they don't eat the right foods. And I could smugly imagine my own future children who I would raise perfectly and who would never do the things these kids do. 

But the thing is, even on those days, my kids have cute moments, affectionate moments, vulnerable moments, moments of such development and clarity that I look at them and think "are you that same small, squawking pink creature I gave birth to? You really are amazing." Moments where I can honestly say I'm proud to be their mother. They are full of promise of what the future may hold; of all the weird and wonderful things they will bring into my life as they grow and develop their unique personalities; of the pride that I will feel when they do something new, or different, or amazing or just because they are being themselves; of all the many challenges they will bring that will develop my own strength and character. Every day they teach me more about myself than I learnt in the entire 33 years I lived before they entered my life. 

Diabetes is not cute. It is not affectionate, vulnerable or promising. At best it is slightly inconspicuous and a minor inconvenience. Okay, so it is challenging, and it does teach me a lot, I'll give it that. I even have moments of pride when I totally nail something. But is constant, exhausting, always there, always a consideration, like having another, very demanding, child. It makes even the most confident, relaxed parent second guess everything. Imagine trying to figure out if your child is just refusing bedtime or is actually really sad because their little world has been turned upside down. I know we haven't seen the worst this disease has to offer. We've had no serious hypos, no stubborn highs and no hospitalisations. But Diabetes, I really just wish you would do one. 

Living with Diabetes: The way we speak (three months in)

Miss Chief at diagnosis.

For some time now I've been meaning to post an update to my Sugar Plum fairy post about Miss Chief's Type 1 Diabetes diagnosis. Actually, if I was to try and summarise what has happened in the last three months it would be a really long post that I doubt many of you would find the time to read. Truth is I don't have the time to write it. One thing that living with diabetes does, in the early days at least, is chew up your time, leaving little for much else. And the longer I wait to post, the more time passes, the more our way of living with T1 changes and the longer the post would get and the more I'd put it off.

So I figure the best thing would be to post a little bit each day or once every few days. I will try to be organised about it and cover a specific topic, but I don't think that really reflects my current state of mind so it will probably be more like a diary. Some posts will have a positive spin, others less so and many won't exist because I'll be too damn tired to write them. So far that has been my main experience of living with diabetes - bloody exhausting.

So before I go off and do my pre-bed check of Miss Chief I'm going to do a little dictionary, or Diabetionary, of words, phrases and acronyms that have become part of my everyday vocabulary since October 23rd 2012.

Basal/bolus: A particular insulin regime which consists of providing a low basal dose of insulin throughout the day and then additional bolus doses with each meal. We use a slow-release long-lasting basal in the morning which lasts about 24 hours. Then we administer a fast-acting bolus with each meal, which peaks after 1-2 hours and drops off significantly after 3-4. By 4-5 hours it is out of the system.

BGL: Blood Glucose Level. We do these regularly throughout the day or night by pricking Chief's finger and squeezing blood onto a glucometer. We also call this the fairy test, fairy blood, check, levels, numbers and often just say "so what was Chief?" and we both know what we're talking about.

CGM: Continuous Glucose Monitor, a highly sophisticated, desirable and expensive device that significantly reduces (dare I say eliminates) the need for finger pricks. Aside from the expense the only downside of this is that it is a wee bit bulky but basically it sits on your tummy with a little sensor under the skin and continuously measures your BGL. It can communicate directly with your insulin pump leading to much better control and is just the most awesomest thing for getting a good night's sleep. Not that we have tried one but I'm assuming it would be.

Clinic: Diabetes clinic, attended by T1 kids (and adults) and their carer(s) every three months. Overall BGL is looked at, a paediatrican does a general check which may include scrutinising the log book to determine whether insulin requirements are changing, discussing the insulin regime to ensure it still fits in with the patient's lifestyle, examining injection sites to ensure they are being rotated rather than sticking the needle in the same place every time, which can cause problems, and doing the same with the fingers, writing prescriptions for insulin and glucogen, and coordinating tests for other auto-immune diseases, such as coeliac. There are also diabetes educators, psychologists and dieticians on hand to answer questions and offer advice.

Coffee: Not exactly a new word but a word with a slightly different meaning since diabetes entered our lives. Before it was associated with socialising, sophisticated tastes (I never drink instant), cafes, frothy cappuccinos, days out. Now it is a vital tool in my diabetes carer's survival kit. I have yet to meet a D-mum who doesn't drink coffee.

Diabetes Kit: Also known as "the kit" this contains everything Chief needs and it goes everywhere with her. Includes log book, pen, glucometer and lancet, plus spare glucometer that measures ketones and spare lancet. Spare glucose and ketone testing strips, finger wipes, tissues, basal insulin and bolus insulin pens, hypo kit, needle tips, sharps container.

D: see T1D.

D-mum: Mother (usually carer) of a T1 child (or adult). See T1D.

Fairy Pen: Not technially a diabetes phrase but it's what we call the pens that we use to inject Chief's insulin.

Free snacks: are those with little or no carbs in them, that Chief can eat at any time - so long as she doesn't fill up on these instead of carb foods after having insulin, because then she might go low. I often pack a selection of free snacks in her daycare lunchbox that she can have either after lunch or as an extra snack on hungry days. Unfortunately "free snacks" are not actually free. Reminds me of the whole "free speech, free beer" open source software debate.

Glucometer: Usually just referred to as the "meter", "glucose meter" or "BGL meter", this is what measures the BGL. There are lots of different types, of which we have tried 3. The main one we use is called the Accu-Chek Mobile and is an all-in-one device where the finger pricker can attach to the side of the meter. Instead of fumbling with a test strip wrapped in foil and sticking that in the meter 7 times a day, we pop a cassette in the back with 50 tests in it. The cassette automatically winds the next test strip round and we never need to touch it. Likewise, instead of replacing the finger pricker needle (lancet) every few days (they say every time but as if!) we stick a cartridge of 6 needles in and this lasts us about 1-1½ months. Chief prefers this finger pricker as it seems to be more gentle and daycare love the fact that they have one device to pull out and don't have to faff around with test strips - their time is strapped enough as it is. I prefer this one at night as I can do the test much more quickly - so long as I have access to one of the kids' gloworm toys otherwise I can't see what I'm doing. Apparently they're going to make a version with a light for use at night so hopefully they'll send us one to trial.

Glucogen: A scary looking injection you have to give if a diabetic has an unconscious hypo. Paramedics are trained to give this so you don't have to if you're too freaked out. But obviously the sooner the patient gets it the better. Glucogen can also be used when a diabetic is sick and refusing to eat, using a less scary looking needle, which is still a fair bit scarier than the pen needles that we use for insulin. (Can't imagine how scary diabetes must have been in the old days.)

HbA1c: Without getting too technical this is a red blood cell glucose test (Hb - haemoglobin) conducted every three months. Red blood cells last up to 4 months so this gives a good indication of your overall control, kind of like an average BGL. D families get very nervous about this number just before clinic.

High: as in BGL is higher than we would like, causing hyperglycaemia and associated symptoms such as irritability, hyperactivity and sore tummy. High for us is above 11, depending upon the time of day. Above 15 or 16mmol/l Chief starts to feel unwell. But as a normal 4 year old she can be hyperactive whatever her level - groan! The meter will measure up to about 27mmol and then read HI. High BGLs can be caused by too many carbs, too little insulin, illness, excitement or other hormonal activity (growth, puberty etc.).

Hypo: No this doesn't mean hyperactive. I often hear people say their kid went "hypo" and I wonder what the hell they mean. I think they mean "hyper". Well, Chief does go hyper, hyperglycaemic that it is, which often results in hyperactive behaviour. But she can also hypo, that is suffer from hypoglycaemia, or low blood glucose. Technically mild hypoglycaemia occurs when BGL is below 4.0 mmol/l. With lower levels come certain symptoms which differ from person to person. They can be lethargic to the point of being unable to move, light-headed to the point of behaving as though they are drunk. They may be quiet, or they may be agressive. They may be incredibly hungry or they may be pale and shaky and refusing to eat. Severe hypoglycaemia can lead to unconsciousness or a diabetic coma, which is a serious condition. Chief hasn't had many lows so we haven't yet determined a concrete set of symptoms for her.

Hypo Kit: A kit of hypo treatments. Ours contains glucogen, jelly beans, juice and a muesli bar. It goes everywhere with Chief but at home we use milk to keep her up and if we need to we give her honey, a jelly bean or juice to get her up quickly.

Ketones: These are toxins in the blood. They can get there with prolonged high BGLs, illness, or if the body has recovered from a severe hypo. Diabetics check ketones if they have a series of high BGLs as they can be difficult to clear if you can't produce your own insulin and a build up of ketones can cause serious illness and hospitalisation.

Lancet: The finger pricker.

Low: A low BGL, as in "she's a bit low" or "she's having a low". This can be quite relative. If you've been high (high BGL) for a while, such as before diagnosis, then a moderate or normal BGL could produce feelings of being low, but generally a low is considered around 4.0mmol and without hypo symptoms. Before bed a low might be 6.0 mmol as generally a higher number is preferred to get you through the night without risking a hypo.

MDI: Multiple Daily Injections. A method of administering insulin, as opposed to infusion via an insulin pump.

Mmol: Millomol. I don't know what this means other than it's the measure of glucose in the blood. For a non-diabetic a normal BGL would be between 3.5 and 8.0 mmols per litre of blood, or mmol/l.

PWD: Person with diabetes. I don't often use this but I do now know what it means. Also CWD, child with diabetes.

Sleep: Again, not a new word but one with changed significance. Before it was something I dreamed of getting more of when Happy One got a bit older. Now it's something other people get.

T1D: Acronym for Type 1 Diabetes, also referred to as simply T1. Amongst the T1 online community a commonly used acronym is D. This is extended to D-families, D community and D-mums. Outside of that community T1 is preferred so there is a clear distinction with Type 2 diabetes.

Target BGL: The ideal BGL falls between  4.0mmol/l and 8.0mmol/l. However, most diabetics sit within this range 60-80% of the time. Over the last 2 weeks, since we increased Chief's basal insulin dose she has only sat in this range 35% of the time (see chart below). However, she is in the honeymoon phase where insulin requirements are small and often changing and fine control can be difficult. What is important is that she has improved. Since 1st December she has been in that range only 28% of the time.

Well, I seem to have written way more than intended. Well done if you're still reading. No doubt there are many concepts and terms I have missed but hopefully this will allow you to better understand future posts as I'm sure more than a few will be on this subject.

Can you help Ironman Anna raise money to cure diabetes?

Can you donate a small amount to help a friend of mine raise money for Type 1 Diabetes research?

A very good friend of mine from university has entered the Melbourne Ironman to raise money for the Juvenile Diabetes Research Foundation. Anna Jepson is one of the most amazing, dedicated and committed people I have had the pleasure to know in my lifetime. As well as being a very successful accountant, and an amazing athlete and musician, she works tirelessly to raise money for causes that are close to her heart. After taking part in an uber-marathon in South Africa in 2011 (despite suffering from a tropical illness) to raise money for breast cancer research, I wondered how she could possibly top that. I am so pleased to have someone like her raising money for a cause that is so important to me and my family. Anna has another close friend with a 6 year old daughter with Type 1 Diabetes.

Anna's fundraising page is 

http://fundraise.teamcurediabetes.org.au/anna_jepson_7

Here is what she has to say:

I'm hoping to raise 5 or 6 grand over the next 4mths, which Macquarie Bank will match to take my tally up to about $10-11k which would be fantastic.

there is a whole team from macquarie going to the barossa for a 160km ride for jdrf in january as well.

The hopeful thing is that in the last 3yrs since i found out about it there has been some progress.  I'm just praying we can help find a cure in the near future rather than the longer.

Anna completed the 160km JDRF Ride for a Cure last weekend and along with over 300 other riders raised over a million dollars for diabetes research. The Ironman is a mega-triathlon consisting of a 3.8km swim, 180km cycle and 42km run. Did I say Anna is an amazing athlete?

She has funded the extortionate entrance fee from her own pocket. Her employer, Macquarie Bank will match dollar for dollar any donated funds so essentially you will double your money.

I will very soon be writing a blog post on what it has been like to live with diabetes over these last few months but in the meantime I will just tell you that it isn't easy for anyone involved, least of all The Chief. Four needles a day, finger pricks seven times throughout the day and night. Her strength, bravery and acceptance both astound and inspire me, as well as making my heart ache. I would do anything to take this away from her. I can't, but raising awareness and donating to foundations such as JDRF is a reasonable second best. 

I am extremely hopeful that Miss Chief will live to not only see a cure but to benefit from one in time to live a long and healthy diabetes-free portion of her life. Even since her diagnosis just three months ago there have been tremendous results amongst scientists searching for a cure. Recently, Australian scientists discovered how insulin unlocks cells to allow the glucose to move through from the blood; up until then this had been a mystery. In November scientists announced successful testing of software that acts like an artificial pancreas and clinical trials have already started for that. A monitor to warn of overnight hypos has come onto the market. A nasal spray has been developed that can deliver insulin to rats. And stem cells that can turn into insulin producing cells have been discovered. There is so much happening.

But along with all of the positive stories we are still hearing stories of tragedy and sadness, of children dying of undiagnosed diabetes, and just a few days ago 30 year old professional skateboarder, Lewis Marnell, passed away from hypoglycaemic complications. Yes, this disease is a big deal. It's a constant source of worry, anxiety and threat for those that have to live with it. A cure must be found.

The 2013 Melbourne Ironman takes place on 24 March. Please find the time and a small (or large) amount of money to donate to this incredibly worthy, very promising, and excruciatingly personal cause.

Thank you from me and Miss Chief.

The Sugar Plum Fairy: How Diabetes Entered Our Lives

Well, as most of you will now know, those of you that Facebook chose to deliver the information to that is, the even keel I referred to in my last post did not last long. 

On Tuesday 23rd October we found out that Miss Chief has Type 1 Diabetes and is insulin dependent. Understandably people want to know what happened: what alerted us, how it was diagnosed, why we were in hospital and what happens next. So here's the story...

The Beginning

The Chief didn't seem particularly unwell that Tuesday but a few things had been nagging at me recently and there were enough symptoms for me to have an excuse to see the doctor. Most of what was concerning me appeared to be behavioural but I didn't want to wait until her 4 year health check to have those concerns alleviated. On the face of it her behaviour seemed normal but she just didn't seem herself to me. 

Just before Happy Shouty One was born, Chief started acting up a bit; resisting naps, throwing tantrums, getting out of bed at night. All pretty normal stuff for a 2 year old. Understandably this continued with the adjustment of having a new baby brother in the house. Eventually she grew out of it and a period of relative stability ensued in our family, Map Man's thesis notwithstanding. 

The Symptoms

A few months ago she started behaving a bit strangely and was at times a bit difficult. It started with not listening, entering her own little world where fairy dresses, wearing the right shoes, and singing and dancing were way more important than brushing teeth, sitting quietly on the mat for story time at daycare or getting in the car when asked. Very normal behaviour for a three year old. Then she started getting up at night again; using excuses not to go to bed, waking her sleeping brother. Again, all normal, and there was always a reasonable explanation: excitement because Nana and Grandad were here; disruption because she was sharing her room with her brother. 

One day she really stressed her teacher out and we had a big talk about how important it was to listen. I checked in with her teacher every day but was reassured that the main issue was not listening and this was normal for her age. I began to think we'd read too much into her teacher's initial complaint. But it bothered me because the Chief has always been more advanced for her age than typical. Her school friends are all 6 months older than her and she's always been very good with comprehension and communication. I just couldn't believe she'd gone from being exceptional to not just typical, but a bit annoying and vacant. We started giving her Omega 3 supplements and put it down to her close friendship with Little Katie as they distracted each other and acted up together.

Gradually stranger things started happening more frequently. Two or three months ago she suddenly grew taller and her appetite increased, clearly a growth spurt. But within a few short weeks she was having another one and this one kept going. She was really thinning out. She was hungry all the time and I began to wonder if I was totally underestimating how much a child of her age should be eating. I made a mental note to ask the GP the next time we were there. 

There was an increase in erratic, overly emotional and sensitive behaviours. She'd have mood swings and lose it because I misheard something she said. She'd be almost impossible to deal with some mornings until she'd had food and water. She'd get up multiple times a night to go to the toilet or get a drink. But again, it wasn't constant. Taken in isolation nothing was overly worrying and when I mentioned any of these to friends inevitably their children would be doing something similar.

Then Map Man went away one weekend and we spent most of the weekend with a close friend and her little girl. My friend pointed out that Chief weed a lot so I began keeping a closer eye on her. The following weekend we went away with Uncle Awesome and Auntie Caring and it gave me the chance to observe her a bit more. When I asked Auntie Caring if she thought Chief weed a lot she replied, "yes, but she drinks a lot too." I noticed Chief frequently asking Caring if she'd take her to the bathroom whilst we were out and wondered if she was seeking attention. So I ran a little test. On the last day of our holidays, Monday 22 October, we were on a brief trip to the beach when she asked to be taken to the toilet. I told her that it was too far away and that we wouldn't have time to come back to the beach before we had to go and pack. I suggested she do it in the water or on the sand, figuring if it was attention she was after she'd either throw a tantrum or forget about it. Instead she dug a little hole and weed on the sand. 

By this time we'd begun to notice Chief getting up for food and water after she'd gone to bed at night. When we were toilet training her we'd stopped her drinking after dinner time and for a while that was fine. But then she started sneaking into the kitchen, drinking from her water bottle and sneaking back to bed. We heard a snack packet rustling one night when we were in bed; as it was a health food snack we just giggled and let it pass, hoping that if we didn't make a big deal of it, it wouldn't happen again. But a week later we caught her eating an apple in bed. We briefly talked about it with her and she said she only ever ate healthy food after bedtime, never chocolate or biscuits. This was the only behaviour that seemed different to other children we knew.

Map Man was really quite unwell whilst we were away and I had noticed Chief getting a gunky nose when I took her in the pool. I wondered if she had the same virus and even though she claimed to feel well - apart from a cough - on the drive home I thought she was looking a bit tired and pale. 

The next morning we thought that all things considered she probably shouldn't go to the swim lesson she was booked into. They don't tend to like gunky noses, plus there was a possible UTI and I was concerned there could be intermittent thrush as she sometimes complained of being sore and itchy and seemed to crave sweet things. 

And that's as far as the symptoms go. As you can see they were incredibly subtle and not too different from normal behaviours in this age group. It's easy to see why so many parents miss the symptoms until their children are clearly unwell. 

The Diagnosis

Okay, so here is where it gets freaky. Miss Chief's GP is a respected doctor with a special interest in children. I take the kids there for their health checks and vaccinations and he also looked after us when Chief's foot issue was being diagnosed last year. But generally if they're unwell and I want to see someone at short notice I just take them over the road as Dr Scott Parsons is very busy and even when we do get a last minute appointment with him it's generally at an inconvenient time. She didn't seem unwell enough to inconvenience ourselves. 

I was working on Tuesday morning so I asked Map Man to call my GP, who Chief knows and who has 3 little girls a bit older than Chief. He made an appointment for Friday morning. On the off-chance I decided to try Dr Parsons because Chief goes to daycare on Fridays and that appointment would disrupt our schedule. If he wasn't free we'd just see another doctor in his practice. As luck would have it he had availability at a convenient time of 2.45 that afternoon. 

The first thing Dr Parsons did was ask me to take Chief to the loo and get her to wee in a jar, which took a while on account of her having performance anxiety. Well, wouldn't you if someone was crouched next to you holding a jar under your butt and asking, "where's the wee? Is it coming yet?" Then as he tested that I chatted about some of the things that were troubling me. I told him that Chief seemed to be hungry all the time.

"You need to come in here," he said and led us to the treatment room where he asked a nurse to do a finger prick test. Within ten minutes he'd diagnosed diabetes and was instructing me to take her directly to the hospital, after depositing Happy One somewhere - he was having immense fun making me chase him down the surgery corridors and wreaking general havoc. Dr Parsons told me that although Chief was well now in about twelve hours she'd crash and become extremely sick. She needed to go straight to hospital for stabilisation and would be there for about 5 or 6 days whilst we took a steep learning curve and had our minds blown with information overload. 

The freaky thing about all this, besides the fact that we just happened to get a conveniently-timed appointment with that doctor at short notice, is that had the diabetes progressed a day earlier, or a day later we probably wouldn't have caught it before she became sick. The previous day we were still on holidays and wouldn't have visited a doctor given her mild symptoms. The following day we were all due at work or daycare and wouldn't have gone. Her symptoms were so mild that I would never have thought of taking her had it not all been so convenient. Clearly she has a guardian angel. 

A couple of quick phone calls later I dropped Happy One off at Auntie Caring's house - with the nappy bag, thankfully but minus his blankie which he'd dropped at the doctors - and was on my way to meet Map Man at the hospital. It's a long way from Auntie Caring's to the hospital when you're trying to get there before the evening rush, and even longer when you're making the return journey at 10pm with only your thoughts and anxieties for company. 

The Prognosis

At the hospital the tests were repeated and the diagnosis confirmed within about 20 minutes of being there, whilst The Chief watched DVDs. Then a team of about 5 people put a cannula in her hand which didn't impress her much, despite the numbing cream that had been applied. A few blood samples were taken for all sorts of things, such as the presence of antibodies that can cause diabetes (inconclusive: Chief does not have either of the two major antibodies, which 80% of Type 1 Diabetics have) and coeliac markers (also inconclusive: they look for a number between 1 and 5; Chief was 6). We had the basics of Type 1 Diabetes explained to us and the treatment, which we were told would probably be between 2 and 5 injections of insulin a day. I asked for how long. The answer: forever; the rest of her life. 

Well, that was hard to swallow.

What is Type 1 Diabetes?

No one really knows what causes Type 1 diabetes but what they do know is that it's often a combination of factors, such as a genetic predisposition, and an auto-immune response to a virus. What it isn't, is the result of too much sugar and fat in the diet and an inactive lifestyle, although over time that can lead to Type 2 diabetes for those with a predisposition.

Miss Chief has a great uncle with Type 1 diabetes, so there is a tenuous genetic factor there, though generally it doesn't play too large a part in your risk of developing the condition. The auto-immune factor is just incredibly unlucky. Chief's teachers are trying to link it back to a virus she had a few months ago because they looked back and noticed she'd had some sick days but the truth is that it could have been anything. You don't even have to get particularly sick and might not even notice you've had a virus. And the diabetes progresses at different rates in different people. Some people might notice they've got a cold one week and the next week they are diagnosed with diabetes. For others there are so many weeks or months between the virus and the diabetes that they don't even make the connection. At the end of the day, it might be a matter of interest to know when this started but it doesn't really matter. 

Once the auto-immune response starts the body goes a bit nuts and starts destroying the insulin-producing beta cells in the pancreas. This is the bit which can happen really quickly, or quite slowly. As red blood cells live for three months the level of glucose in these cells can indicate how long this has been happening. In Chief's case we think it's been a while. When 90% of the beta cells have been destroyed the body is no longer producing enough insulin to meet its needs and the symptoms of diabetes begin to appear. 

Insulin is a hormone that the body uses to allow glucose, or energy, to pass from the blood into the cells. When the brain realises that it isn't getting enough energy it looks for alternate sources. First off, it breaks down fat stores and uses energy from that. When fat stores are depleted it will try to get protein from muscles. Ketones are a by-product of this process. Ketones are toxic to many organs and if levels get too high ketoacidosis occurs. Left untreated ketoacidosis damages organs and eventually they fail. A diagnosis of diabetes is made when elevated levels of both glucose and ketones are detected in the blood. Fortunately, Chief had not developed ketoacidosis by the time she was diagnosed.  

Although the brain gets some energy from fat and protein, this is pretty hard work and it would really prefer the nice, easily-digestible glucose so it sends signals to the body to consume more food. The patient becomes hungry and eats more. As the blood sugar levels rise the kidneys try to flush it out by producing more urine, which uses up fluids and makes the person more thirsty. So there are your main symptoms: excessive hunger, thirst and weeing.

The Hospital

Chief was eventually moved to the paediatric ward late that night. I couldn't really wait to see her settled in as I had to go and collect Happy, who was sleeping in his clothes, and a 4-year old girls cardigan, in a portacot my sister-in-law had borrowed from a neighbour. Map Man spent the night at the hospital. Chief was put on a drip and given shots of insulin to start her stabilisation. 

Over the next 3 days we spent hours with a diabetes educator from the diabetes clinic. We spoke to paediatricians, registrars, nurses, social workers, psychologists and dieticians. We took turns to stay the night there and go home with Happy. By the time we left we had been given bags of expensive equipment and had learned how to read her glucose levels, or "fairy blood" with a finger prick 7 times a day and give her a total of 5 injections of 2 types of insulin 3 times a day, using her "fairy pens". We were shocked, sleep-deprived and hadn't spent any time as a family. Happy One had been shunted between daycare, family and friends with only bed and breakfast time spent with Mammy or Daddy. And all with his trademark smile and happy nature. We survived on other peoples' generosity, with friends and neighbours cooking, baking and shopping for us, feeding the cats and pulling our clothes off the line. It was a crazy time. 

The hospital and staff were great, with the possible exception of one ditsy nurse who, amongst other things, managed to prick her finger on one of Chief's needles, causing Chief to be sent for blood tests. As if she wasn't dealing with enough needles. When we left hospital we had the mobile number of the paediatrician and phoned her once a day to discuss glucose levels and insulin doses. When Chief ran particularly low one night (i.e. low blood glucose levels, thus risking hypoglycaemia, or a "hypo") we were able to call the paediatric on-call registrar at the hospital for advice. Ten days after we got home Map Man and I went to the diabetes clinic to chat to a dietician and an educator and ten days after that we went with Chief to talk to the paediatrician and a psychologist. Although it can be very isolating at times, I never felt like I was totally alone; I felt like we were really well supported. 

The Aftermath

And so a month later we are still adjusting to life with diabetes. After a short period of stabilisation and target glucose readings Chief entered a "honeymoon" or remission phase, where the pancreas temporarily produces small amounts of insulin again. Her doses were changed to prevent her glucose levels spiking up and down too much, and she went down to 4 injections a day but I feel like we're still working out the right doses and food for her. There are still many things for us to learn and many challenges ahead. The repercussions of our unplanned week in hospital have been more than we could have imagined: an unpaid credit card bill and the accompanying interest charges, an expired drivers license, a house so disorganised, untidy and full of clutter that we lose things and jobs take twice as long as they should. The toll it has taken on our family has been surprising but I guess it came at the end of a tough and exhausting year. And it didn't stop there. A week later one of our cats had an accident and spent a couple of expensive nights at the vet extremely unwell (thankfully, now fully recovered). And we have more things to deal with before the end of the year, which I won't go into. 

One thing it has taught me is how amazingly strong and resilient our little girl is, so much more so than her mam and dad. She is brave and beautiful and it breaks my heart that I couldn't protect her from this. But I'm determined she will live as normal a life as possible. This is what the universe has given to us and this is what we must deal with. No point in dwelling on it and feeling sorry for ourselves or each other.  There are so many worse things in the world, and the research efforts and medical advances for Type 1 diabetes are quite amazing. Chief is using insulin pens that were released about a year ago, and which allow half units of insulin to be administered. Do you know how much that is? Not even a drop! 100 units is approximately 1 millilitre! And her needle tips are 4mm long and only 0.23mm wide! They are seriously tiny. Sharp little buggers though. Scratched my hand with one yesterday and it hurt a hell of a lot more than an injection. 

This won't be my first post on diabetes. We are about to start an incredible journey and we are only at the very beginning. We'll be learning a lot about diabetes, and a whole lot more about ourselves and our amazing children. 

Smelly Daddy

Things are finally getting back on an even keel in our house since Map Man handed in his grad cert thesis about a month ago. I still don't have much time to blog as I am now in the process of a bit of a career change which requires a fair bit of study and mental space. I have moved into the client world at work and after achieving my Google Analytics certification I am now the Conversion Optimiser and am studying Inbound Marketing and conversion rate optimisation. But enough of that. It doesn't take anywhere near as much time as Map Man's thesis did.

We were a bit worried about it actually. It was quite long. I mean really long. I think only the bible is longer. But on Sunday night we got the fantastic news that Map Man had been awarded a distinction. Clearly my domestic duties, proof-reading and suggested edits played a large part in this but I'd be lying if I didn't say that Map Man's passion, dedication and hard work didn't contribute in some way. Suffice to say I am currently very proud to be Mrs Map.

Last night we went out with the family to celebrate. As I was getting the kids ready to go I gave them a card to draw on. Miss Chief asked me what it was for.

"It's to congratulate Daddy. Remember how he was working really hard all the time in the garage? [That's where he set up his study so he could lock the door and get away from the kids. Cost us a bloody fortune to heat that place in winter, I can tell you.] Well he did really well and got a distinction."

Miss Chief paused and considered this. Then, "Does he stink?"

"What? Why? Oh no! You funny thing," I laughed.

Clearly confused by my response she then asked, "what's a stinktion?"

Out of the mouths of babes.

Rather that than the nonsense that's coming out of Happy One's mouth these days. I think he might have to be renamed Shouty One or Happy When It Suits Him. Jeez that kid could have his choice of representing Australia or England in the Under 18s (months) Tantrum Championships.

Anyway, he's been really ill. It was awful; croup, coughing, sniffling, temperature, no appetite. Went for about a week and he lost loads of weight. He's been on the mend for about 10 days or so now but he's still waking in the night. And often I feed him to get him back to sleep. Well, my back has been sore - another story - and the other night I took some very strong painkillers that I'd never taken before and knew nothing about but just needed to take something so I could sleep. About 50 minutes after I finally fell asleep he woke up and, after a bit of whinging, started screaming. I refused to feed him and made Map Man deal with it like he did when Miss Chief was young. Thing is she was about 10 months old when I stopped feeding her in the night. Happy Shouty One is almost 16 months and not entirely thrilled about the situation. That night he screamed for about an hour and Miss Chief ended up on the floor of the spare room - the kids share a room now. The next night he woke twice and screamed for almost half an hour each time. We're all unbelievably exhausted. Tonight he enthusiastically nodded when I asked if he was going to stay quiet until 6am. We'll see how that goes then.

Obediance and Logic

Conversation between me and Miss Chief at breakfast this morning.

Chief, on finishing her porridge: Mammy, can I put my pretty dress on now?
Me: Yes, but take your dish to the sink first, please.
Chief: Ok, Mama.
Me: And don't forget to put your pyjamas under your pillow.
Chief: Ok.
Chief walks towards bedroom with dish in hand.
Me: Take your dish to the sink first, then put your pyjamas away.
Chief: Ok. Ok, Sir.
Takes her dish and puts it on the kitchen bench.
Me: Can you put your dish in the sink, please?
Chief: Ok, Sir.
Me: Wait, did you just call me "sir"?
Chief: Yes. Yes, I did, Sir.
Me: Where did you get that from? Where did that come from?
Chief, tapping her throat: From my mouth.

The Happy One is on the move

I don't have time to blog which is why I haven't been. Actually no, that's not strictly true. I haven't been making blogging a priority lately because there is just so much happening in this house at the moment and I'm stuck in the rut of just getting things done: laundry, which every day involves hanging out in the morning and putting on before bed, with folding, sorting and putting away happening every other day; meal planning, shopping and cooking; general baby and kid stuff, such as feeding, cleaning, entertaining, taking out and generally tidying up after, not to mention finding lost toys and fixing broken ones, which all takes up valuable time; and then of course there's work, the real, professional, paid career kind, and there are some developments there too; and the less exciting but equally important domestic management work, such as budget planning, bill paying, paperwork, mail, filing, phone calls and so on; and there is barely time for any of my other hobbies, such as sewing and other craft, and let's not mention the decluttering project I started a year ago. Oh yes, and the much sort after sleep and fitness. To be fair I do blog more than I declutter and about as much as I do each of my many other hobbies. Oh and I totally forgot about washing accumulated cat wee out of the carpet - my favourite pastime of all.

So blogging isn't a current priority, and I'm typing this on my iPhone so I'll keep it brief but I really couldn't neglect to mark this momentous occasion. The Happy One is officially walking. Less than 3 weeks before his first birthday and he walked across the sitting room to me, totally looking like the cat that got the cream. I say "across the sitting room". I actually mean about a metre, so maybe four steps. But that's far for such little legs and the furthest he's been yet. For a few weeks now we've known it's been more an issue of him not knowing that he can do it than him not actually being able to do it. Well, I think he's finally getting with the program.

This is definitely a step up from crawling. Now he can carry things in his hands instead of in his mouth, like a dog. I'll miss the crawling stage though. It's just so cute. And then my baby will no longer be a baby but a toddler. Bawhawhawhaw. Oh they grow so fast.

Ok, momentous occasion duly noted and finger cramp is setting in (how come the Blogger iPhone app doesn't flip round when the screen is horizontal? Ok vocab part of brain shutting down now. Must sleep.)