The Boy with the Blue Eyes

I’m just lying in my bed, well sitting up in my bed. Trying to do the million and six things I have to do for work at the mo. I can’t focus. I am needing a vent.

I actually don’t know who to vent to anymore. This shit is not new. It’s not news. It’s ongoing, every day, every night, all day, all night. The same. But different. And frustrating. And painful. And heartbreaking. And relentless. And tiring. And just fucking ARGH.

It’s been now just over 2 and a half years since Beau was diagnosed with T1D. I really REALLY should have this sorted by now. His levels should not be a fucking seesaw, and he should not be high all the time. Followed by lows.

Lately, we have noticed Beau has been sitting quite high in the afternoons and evenings, and we thought maybe we aren’t measuring everything – like sometimes when you’re out and about things get hard to calculate – particularly treats like hot chocolates and ice creams etc.

So we had been blaming ourselves, so in the last week we have been SUUUUUPER good at weighing, calculating and bolusing correctly (SOMETIMES slightly late, as in, when he starts to eat – fussy 4 year olds are so bloody fickle – you never know if he’s going to like it or eat it or what!!!!)

Anywho, it’s still not bloody working.

So. It looks like his ratios might need to be changed again. KW also reckons sometimes it’s like when we bolus or correct (give him insulin for food, or to bring his high down) it’s almost like it just sits there in his bum where the needle is, without going in his bloodstream. So then you give him more and thennnnnn it ALL goes in at once and he goes low. A mind fuck I’m telling ya.

This means Beau’s HbA1c is going to be crap again. FFS. 🤦🏻‍♀️

I hate myself for it, I really do.

I am so tired. I know I write this often. BUT FUCK ME I AM TIRED.

Something of late interesting to note, is Beau can go completely nuts psycho when he is high, like completely smashing his brother or us, throwing things at us, screaming in a rage. Not cool. It is weird to witness and so hard to know how to handle it. Is it just him? Is it diabetes related? What should we do?

So. That’s something new. Always fun isn’t it.

Might try to chat to the psychologist when we next have clinic in the hospital – whenever that is. Next month I think…

I mean, things haven’t been boring – he broke a wee bone in his foot! So that was shit, but the temporary cast didn’t last long – even though we were super careful and he wasn’t having much pain when the Dr pressed him so he left it off. We got nearly home and Beau goes ‘I was tricking that Dr, sometimes it did hurt when he touched it. 😳’  Luckily he was ok with it off and was able to walk ok, just not run or jump – but to be fair I don’t think it really stopped him. It was just a tiny dent of a break in the bone on the side of his foot under his little toe.

So. Here I am, typing frantically, spilling my shit to who knows who on the internet, rather than talking to anyone in my real life about it cos I feel like I am an annoying, draining broken record.

I utterly love and adore my gorgeous Baby Beau. So much. More than anything and anyone (EQUAL with his Dad and brother) – and the cat and dog too if the kids ask. And I wish more than anything that some really smart scientist(s) finds a cure for this fucking shit arse disease that found it’s way into my son’s body and our lives.

In the middle of the night the other night, I found myself thinking how lucky we were 3 years ago not having a clue about anything at all to do with diabetes. Like no clue. And then I felt guilt for all the people to manage this and help their loved ones manage it and how I hadn’t known anybody or even thought twice about them with empathy and compassion as I had no idea what it entailed.

Last week, Beau said to me in the car ‘I wish I didn’t have diabetes’ I said ‘I know darling, me too.’ And we talked again about how he does have it and he’ll have it for his whole life until he dies, or even when he dies.

We got to the mall and I was taking pics of him with (earlier mentioned ice cream treat) and I found an eyelash in his eye and he blew on it to make a wish ‘I wish I didn’t have diabetes but that I don’t die.’

💔💔💔

Heartbreaking.

He manages so amazingly well though. It must be so frustrating, embarrassing, painful, annoying, horrible, tiring, confusing, worrying and fucking hard for him. You wouldn’t know it most of the time. What a star!!!!!!!!!

Anyways better get back to work. Or to sleep.

Note – I don’t write these so you need to comment to make me feel better, I write them because I need to write them. I need to write and write and write and feel better with blurting all this crap out on my laptop. And it’s really amazing to me if people have read it and it’s helped them in some way. It’s one big crazy world guys – let’s just have kindness and empathy always.

 

When your cast matches your sensor tape!

Just before the eyelash wish 💙

Asking if Cooper’s rugby is finished yet 😂

Kia ora everyone.

I come to you from bed, where I may or may not actually finish this blog tonight as I am pretty pooped! KW has been attending some webinars in the USA (on Zoom or something) for the last 2 mornings from 4am -8am so I’ve been taking over the reins, and between a diabetic little boy and a dog with the shits – well I haven’t had great sleeps.

We had clinic a couple of weeks ago, usually I do an update after that. It was alllllllll good! Beau’s HbA1c had improved which was AWESOME!!!! So there was only a tiny tweak to his insulin settings at dinner time. Yes!! Success! It is THE BEST feeling leaving there knowing that we’ve done well for Beau and I always feel like celebrating on those clinic days – although now I don’t drink I am not sure what to do lol

He also is exactly on the 50th percentile on the growth graphs for both height and weight! What a good boy! Perfect!!!!

Next time, they want us to do some blood tests with him to see how he is fearing with other Auto-Immune conditions like Coeliacs and Thyroid issues. So we have the numbing patches and I guess will wait and see what happens in a few months! EVERYTHING crossed he’s all clear!!!!!!!!!!

Although, it seems like every time we have a great clinic appointment, we leave and Beau’s levels go all ‘skewiff’ on us! Not sure why, we are keeping on keeping on and things have calmed down now as opposed to the fucking massive seesaw we were having a couple of weeks ago.

Honestly, my heart broke for wee Beau. I, of course, don’t know what it feels like but for a couple of days he went from high to low, to high, to low. And I can only imagine he felt like utter crap.

I hate those times. I hate when I have forgotten to bolus for a bit I needed to, but didn’t in case he didn’t eat it all etc. (eg. the rice is 18g for half a cup, but I’m not sure if he’ll eat it all, so I bolus only 10, then he eats it all and I forget to bolus the other 8!!!) ARGH!

The Māmā guilt is hiiiiiiideous.

So, our main news this blog is, we have decided not to send Beau to school when he turns 5 in June.

I had gotten everything organised, filled out the High Health Needs forms, arranged time off from work, changed work days (still hadn’t got his uniform!) and then I started listening to a book on Audible (my new fave thing to do on my commute to work from Lincoln) called Mothering Our Boys by Maggie Dent – it’s amazing! She was talking about why are we rushing our little boys to school before they are ready? They need play and movement etc and more time to develop their social skills and their playing is SO important to help them develop in every single way. I knew before from going to see Nathan Wallis that most boys aren’t ready for structured learning until they are about 7. Especially second boys.

The penny dropped.

WTF am I doing sending him to school when he doesn’t have pencil grip sorted, can’t write his name, has some emotional times and plays ALL DAY LONG at preschool?

I know, that being a teacher – children are taught at the level they come to school at – not where you might hope they would be aka they would help with his pencil grip, name, etc.

But how unfair of me to take his one and only time in his life where he can play all day (3 days a week) off him and rush him to school because he’s 5 and that’s what you do.

So, I knew KW could be a hard sell as he is a traditionalist. I chatted to him to plant the seed.

Then chatted to the preschool teachers – apparently he hardly ever goes to ‘4 year old group time’ the small I guess, half hour, window of focused learning they do a day. They strongly recommended he stayed there for a good few more months.

THEN it was a visit to the school, who had JUST sent away the High Health Needs form….

There, I was met with such warm support for this decision I had kinda already made but wasn’t sure, and wasn’t sure how many people I was going to piss off either.

But I was more than supported to do the right thing by my boy.

KW is happily on board too.

It blows my mind that I hadn’t previously thought of this.

I think I was so overwhelmed by Beau turning 5 and all the changes, I never once stopped to think that maybe we didn’t have to do this just yet.

I also know with all my heart, that I (we) have made this decision with Beau’s best interests at heart NOT because he’s my baby and I’M not ready for him to go to school and I’M not wanting to remove him from the great care he has at preschool.

I had worked REALLY hard to make those things not an issue.

So they weren’t.

Which means, this is the right decision for Beau.

It changes how we thought life was going to look for the most part this year, but we are being flexible with what’s going to happen and when and honestly I just feel relieved that he will have more time to grow and change and develop at his own pace, rather than being thrown into something he is not academically, physically or emotionally ready for.

This is NOT to say that he is not smart enough, AT ALL.

His intelligence actually blows me away lots of the time!!

Beau is incredible with numbers – he LOVES maths forever asking me about equations, knowing before and after numbers, ordering numbers and counting. He also thinks about amazing abstract ideas which blow my mind. Real big ideas and conversations. He has such wonderful thoughts and also some pretty odd ones too lol. His empathy can often be heartbreaking and heartwarming at the same time. (eg. A couple of weeks ago we were out for a walk and he was behind us and I heard him say ‘sorry’ and run to catch up with us. I thought he was saying sorry to us, but I asked him and he said he had seen something (an insect) flying and then it flew down and he had accidentally stepped on it! There was also the other time, we were feeding some ducks and then this MASSIVE Mexican duck came up out of the water and kept coming closer and gave him a huge fright and he was really scared crying and shaking etc. When he had calmed down and the big duck had moved down a little bit Beau goes over to it and quietly says ‘I like your mask’ as the Mexican duck looked like he had a superhero mask on him!

I mean, this week, he has told me he wants to marry me and he also has told me that he hates me, so I dare say, 4 year olds are… interesting!!!!!

So this is us right now.

Hope you are all good!

Beau and our favourite nurse putting his HbA1c in the machine to be tested!!! 😭❤️

 

SO delicious! ❤️

Without me modelling, but my verbal support in remembering the letters – Beau wrote this last night!! 😍

Kia ora e te whānau,

Welcome to another night of ramblings by Renée (omgosh total new name for a blog!!!!) and 100% actual what this is!!!!!! hahaha

Well the past few weeks have been…eventful,  I guess.

You might remember me saying last time about how tired I was as the diabetes was playing up majorly – particularly at night. Cue – exhaustion. Cue – depressive episode. It was rough. Extremely rough.

I had a breakdown at work and proceeded to cry for 5 hours! Like whaaaaaaaaaattttttt?!? It is very unlike me… I am not really a crier. Well, when I was medicated I cried twice in like 4 years haha now I am un-medicated (currently, since last year – could be subject to change!)

So life paused, and I had (have) to try to come up with plans to change it.

Number one was now KW and I take turns and have a night each dealing with Beau’s diabetes overnight. Some nights we don’t need to do anything, other nights, we are up lots and for varying lengths of time. And I would say the majority of the time it was me, not all the time, but most. So there was somewhere where I needed to share more of the load.

Next – I desperately feel like I need to spend more time with the boys and also more time by myself – not necessarily  BY MYSELF, but like FOR ME. You know?

Obviously, number 2 is a constant work in progress.

Beau has had a site infection – his worst yet, on his poor wee bum 😩 So that was ouchie for him, and required a week of yucky antibiotics! He didn’t like them at all, so we had to give him half a bit of choc for each dose (oh, the irony is NOT lost on me my friends!!!) but he was ok and carried on like the fucking champ that he is! How did I get so lucky!?!?!

His behaviour has been a bit off lately, definitely at home – which I had contributed to us being super busy (since deciding to list our old house, sell, move, make build plans, move towns, new class at work type thing) so I hope that now we are settling in things will improve.

Quality time is my love language, so that’s why this breaks my heart to think it is why he is playing up. Well, not think, I know that’s why. I’m very happy to take the blame, well, not happy, but will honestly own up.

He has started to have a few issues at preschool too, which is unusual for him.

So we have spent some lovely time together and I think (hope!) things are improving.

Part of me though is like FUCK, of COURSE you aren’t always behaving (well, he IS a kid!) but he puts up with so much extra shit that most people wouldn’t have a clue about. Mostly happily. Mostly without protest. Every single day and every single night. No breaks. Ever.

What a superstar. I think I would play up, psych out, moan and begrudge it all if it was me doing all this shit, day and night, night and day. Hell, I pretty much do anyways! lol

So ya know, cut him a break. THEN I’m like ‘Do I already cut him a break? Is he spoilt and acting out because I let him away with stuff?’

Welcome to parenthood – a delicious mind fuck!

Anywho, the ACTUAL point of this post, was to update you all on my 4 year old and 9 month son, Beau who WILL SOON BE GOING TO SCHOOL!!!!

YES I AM YELLING ON PURPOSE!

So – so far, every single time I talk about him leaving preschool I tear up and can’t talk lol but yesterday I met with the (amazing!!!) DP of the kid’s (arggghhhh even saying that!) school, to start filling out Beau’s High Health Needs form to send to the Ministry of Education. This form gets reviewed by them and they allocate a certain amount of hours of Teacher Aide time to the student.

Beau’s diabetes is 100% managed by myself, Kodie, his preschool teachers and my Mum. Not ONE other person is able to look after him.

God, saying that is scary.

My nurse bestie kinda can, as she knows lots about it and can do the basics on the pump. Oh and my other bestie who I trained up this summer. OK phew.

Anywho.

So, the meeting went REALLY well, it was so nice to chat and we could have talked for hours and she was so eager to learn and it seems like other staff are too (YAY!) and I was honest about how I was feeling and she put my mind at ease, saying they will do whatever it takes to keep Beau safe and help me feel at ease. So empathetic and amazing and really EXACTLY the person I needed to meet and deal with.

Phew.

So the rough plan is to train up 2 teacher aides to deal with everything, plus 2 teachers in his hub, plus the office lady. All staff will get a basic run down as well.

We missed the New Entrant parent night (don’t ask, still a sore spot for me 😳) it was a mistake and I had no clue it was on…. but Beau’s start will be quite different than others anyways.

KW and I will take him in and stay with him for some visits (quite a few more than most) and then we will stay for a bit when he starts too.

I might almost be nearly kinda getting closer to maybe being able to admit this is a happening thing in 3 months time.

And that my friends is it. Bedtime for me.

Already treated 2 lows and it’s only 9.25pm!  Wish me luck for the rest of the night! ❤️

Look at hiiiiimmmmmmmmmmm – DELISH!  😍😍😍

I want to write a post about Beau and his new top. Not diabetes related, but MY GOODNESS I am exhausted re diabetes. Verrrrrrry rough week or so. Last night and Saturday night in particular were horrid. And actually Sunday, when he desperately didn’t want a site change to the point where I had to change it when he was asleep. So the exhaustion is real and if you see me, throw me a coffee and run 😂

Annnnnnyways.

A couple of weeks ago, Beau and I went to the mall to get Coops some new PJs. While we were in the shop, Beau was looking at the jerseys and found one he really wanted. I didn’t have the money that day, and they didn’t have his size, but I promised him I would get it online for him.

Here it is.

So, I ordered it.

Last night it arrived!

My goodness. Look at how happy he is!!!

(It was bedtime)

And so here I am. Heart happy that my baby boy is excited about his new jersey. And nervous about this ‘girls colour’ ‘boys colour’ bullshit.

Every single day, Beau changes his favourite colour. Some days it’s blue. Yesterday it was orange and purple. Last week it was ‘definitely green forever now.’ Sometimes it’s pink. I love that I never know what colour it will be on what day etc

I LOVE individuality. I am still learning how to raise these beautiful boys each and every day (mostly failing miserably if I’m honest) but I want them to be THEM.

Whatever that THEM might be (apart from rude, disrespectful or arseholes etc)

I can’t wait to see my gorgeous Beau Richie rocking his new top. He loves it. I love it. And I love him more than anything.

He even slept with it 💕

Hi again, it’s just me – olddddddd lady Renée…

I feel like I’ve aged a decade in the last week, and it’s not even really Beau’s diabetes related lol but I feel compelled to write because today was tough – in a diabetes sense…

When I last wrote, we had just been to clinic and Beau had had lots of ratios changed and things were going really well!! It means that there are more lows to treat, but not the constant highs.

The lows aren’t great either though, they can be really scary if too low and a lot of diabetics really fear going too low and not waking up etc.

We are lucky with the Libre/MiaoMiao system we have at the moment, we get alarmed if Beau is low (3.9 or under) or high (12 or above – technically anything over 8 is ‘high’ but we don’t correct unless it is 12 or over). So most of the time we are onto it. It doesn’t mean it fixes the situation though.

Many, many times lately, Beau will be high in the evenings, then we correct it (with more insulin) and he won’t come down, he alarms again so we correct again etc. THEN it goes down so fast, and we get an alarm he’s low!!! I would say this happens like at least 4 out of 7 nights.

Holy fuck we are tired. I am tired.

I have started a new teaching year and it is proving difficult to get into when I am adjusting to my new travel time to and from work, my coffee situation, my big boy not being with me at school, trying to make huge decisions on a build all while setting up a new class with my amazing friend and 45 wee darlings.

I feel so very lucky. But so very tired. So very overwhelmed.

I miss Beau. I miss Coops. I don’t see them in the mornings before I leave for school (on the 7 days a fortnight I work) and then by the time I get Beau from preschool he’s often tired and grumpy after having a busy fun day! It’s all a new adjustment and we are getting there, I think. I hope.

Yesterday Beau had a day off because he had conjunctivitis so that was not fun for him, poor wee boy missed his first preschool trip he was SOOOO excited to go on!!!!

Last night he hadn’t eaten much, so before I went to bed I finger pricked him – he was low, so he sleep-drank juice. Tested again. Lower. Fuck. It’s THE WORST when that happens. So I gave him more juice, then actually woke him up to eat a couple of wee crackers and have a milk to better sustain him, and pee as he’d drunken a juice and a milk!!!!

But today, Friday, is ‘Mummy/Beau Day’ where I don’t work and Cooper is at school. Beau and I often do a few jobs out and then play at home, or meet some friends etc.

Today, we did all 3. It was great, busy, but great!

And ALL DAY he was high. Apart from when he was low.

We’ve had this thing come up on the pump a few times now when delivering a larger bolus (amount of insulin) it will beep dramatically halfway through with an ‘Insulin Flow Blocked’ something something.

The fucking thing is, THE FUCKING THING IS…… then the pump SAYS the insulin is ‘active’ as in, Beau has received it, BUUUUUTTTTT you never fucking knowwwwwwwwww. So then he goes high.

So this means a site change usually needs to happen, and then you try to correct the high but again, remember – YOU DON’T KNOW HOW MUCH INSULIN ACTUALLY WENT IN!!!!!!!!!!!

So that happened.

Then all day he was high. And then low. The pump seemed fine and KW said he just unclips it and moves the tube so I did that before attempting a site change – which in hindsight, wasn’t the best move. But I have learnt my lesson.

So. All day highs, not coming down.

Then tonight, we had our last family night for his preschool down at the park with a picnic dinner (which I had COMPLETELY forgotten about eeeshk – such is these busy times.) So I did a site change before we went. Then we went and he had the best time playing with his wee bestie and brother and boy, did he RUN!!! hahaha he ran right down the other end of the whole field!!!! Eeep, luckily his besties Dad biked after them and rounded them up to come back lol. I was so proud, as he’s not usually a runner.

Because we live in Lincoln now, it’s a bit of a drive home (not that far from the preschool side of town) and he was verrrrrry tired. He didn’t sleep but tasted a corn chip and it really didn’t agree with him. He said he felt very sick and he didn’t look well at all. So I got him a bucket and also tested him, 4.1 (ALMOST low) and no ketones. So I had to try to get sugar into him when he looked dazed and sick and not good. Yuck. It was scary but I took him to have a bath and he had some iceblock and perked up in the bath.

Phew.

And now, high again. ARGGHHHHHH.

The see saw is constant. I can’t imagine how his wee body feels and I’m so pissed off at myself for not having his levels more steady. But that’s the tired talking. It’s not my fault. It’s the fucking diabetes.

ANYWHO….

I asked my fave diabetes nurse about the transition to school today, just an FYI for me as before you know it, it will be happening (!!!!!!!!!!!!!!!!!!) and they rang the school and sent the High Health Needs form ready to them and other things to fill out.

So. I guess that’s a real thing now too.

I spoke to the principal in Cooper’s first week about Beau’s enrolment and about how we would have to apply for the High Health Needs funding – basically this is a form to ask for Teacher Aide support to care for Beau and his diabetes while he’s at school.

Obviously I want him to have full time cover.

However, on the T1D parent page, there is a huge discrepancy in hours allocated for different children. Which fills me with anxiety. So I told the principal if the application doesn’t get enough, we’ll have to apply again. (this is nothing to do with the school – it must be the ministry) so I wasn’t having a go at them, just saying that I will not be ok with him only getting 10 hours a week or something. Luckily, she agreed and said that I am his advocate so that’s my job! And that they’d support it, which is great.

So obviously, as the T1D kids get older, they manage more and more themselves.

I can’t imagine that.

Well, of course I can’t. My baby is 4!!!!!

But I am happy for him not to manage it himself yet, as he will have another 90 odd years managing it. We’ll do it as long as we can to save him from as much of the burden of it as we can.

He is also hypo unaware. Which can be dangerous. As in, unless it is the time between breakfast and lunch and his morning tea is late and he complains about being hungry (he is actually low – and hungry) he doesn’t recognise what a low feels like. This is the only time of day that he does. And it’s not always either. If he is busy with his friends and distracted, he has no clue.

So the goal as he grows, is for him to recognise what a low feels like and when one is coming. We often will chat and ask ‘Do you feel low?’ etc trying to prompt him with the language.

But the goal now, is to sleep. The high alarm could be going back off in another hour (I’ve corrected and snoozed the alarm for 2 hours.)

Thanks for being my sounding board. You ROCK xx

 

Hello all and thanks for reading, if you are reading. And continue to read.

Sometimes I feel like I repeat myself, sometimes when I am in a good mood I don’t even want to write. I feel like writing this is my therapy and I do really look forward to writing each time… So, here I am. First blog of 2021 and well, it will be a big year for us and our beautiful blue eyed Beau!

This is the year I am dreading to be fair. My tiny wee newborn baby (total lies, he was 10 pounds, and now he’s 4 and a half, NOT a newborn, but he’s MY BABY!!!) is going to school!!!!! Not until June, so woah back, but still –

THIS. YEARRRRRRR.

WTFFFFF. Last I heard they didn’t take babies at school lol……. It’s super hard to imagine, as there are 3 incredible teachers who care for his diabetes at preschool, who have amazing comms with us, and we really trust them. In fact, as you know, his levels are often (always lol) much better at preschool. So that is going to be….huge. A really massive change. Humungous.

Now that Beau has had diabetes for over 2 years, I dunno, outsiders think we should have it ‘all sorted’ but you guys know that’s not the case. It cannot ever, and will not ever, be sorted. When it IS going well, he just needs to get excited/run and jump too much/grow/get hot/get cold/get scared/ANYTHING – and it’s different again.

We moved last weekend – YAAAYYYYYY!!! Finally!!! And we are now in the small community of Lincoln. Still close enough to Christchurch hospital, should we need to get there reasonably quickly, but far enough to create a (hopefully!!!!!) close community kind of childhood/schooling experience for our boys.

It is SO nice to be in a new home. We are renting while we build our own home, but building won’t start until later this year when title is out for the section.

The day we moved, one of my besties had the boys (all 3 of them – Cooper, Beau and Rocky!!!! Super brave!) She is a very intelligent woman so I knew she would be fab having them (read – Beau!) so a couple of days before I spent an hour with her and Beau (and the rest of our little (getting big!!) people) training her up.

To train her for the finger prick, she gave herself one (just as KW and I did in hospital in December 2018 when we were learning all of this). It was a moment right? I mean, it hurts!!! A needle goes in, to make blood come out!!!!  Well, she did it, all went well and we kept going. She also pricked Beau while I was there and that was all good.

A few minutes later, she said ‘It still hurts!’ I’d forgotten, it’s been a while since I’ve had one (with Beau’s ‘lamborghini’ pricker – the blood donation places ones are TERRRRRIBLE!!!!! and hurt for DAYS leaving a mark!!) But fuck me. It made me realise, Beau gets these on the daily (I’d say at least 8/10 days he would have at least one finger prick) and how he doesn’t even blink an eye. I can tell if I get one accidentally in the middle of his finger pad, that can hurt more, and his ring fingers hurt more too. He will ALWAYS hand you his pointing finger, but it’s important to share the finger pricking love everywhere so the skin/tissue remains easily accessible, and less painful.

Fuck. He is BRAVE.

Beau the Brave.

Anywho, it all went well, and on moving day the kids and pup went there happy as. We are so grateful to have had them taken care of and looked after and she SMASHED looking after Beau. His levels were high, I think it was hot, he was excited and when caring for someone for a short time, it’s often better they are on the higher side than the lower side. (I personally think, as lows can be scary and can provide an immediate reaction if they are quite low and it doesn’t feel great for Beau.)

So we communicated a lot during the day, re corrections on the pump as he was running quite high, with the arrow shooting straight up, and things like that.

THEN… (During one of the messaging exchanges about Beau’s care…)

Beau got his pricker and finger pricked her daughter!!!! ARGGGGHHHHHHH!!!!!!!

Luckily, it must have been a mutual thing, as she was happy (stoked in fact!!) and she got tested and had a perfect BGL! Phew!!! LOL I was fucking mortified let me tell you!!! I thought he’d just gone and like, I dunno, stabbed her with it LOL so luckily, no one was mad. Big relief. I couldn’t bloody believe it lol little punk. But in a way, I guess he was sharing it around with his wee friend. A little bit of his world.

I can’t help but think it must be lonely for him. Not knowing anyone else with diabetes. With a pump. With a CGM inserted into his arm full time. With a medic alert bracelet.

Another one of my bestie’s daughters wanted to wear sellotape, ‘Cos Beau has tape on him!’ BLESS. I love that. I love that someone wanted to be like him. Cos I NEVER want him to not want to wear these things. I know he might. I know there is plenty of time left for that and a fucking million other challenges in regards to this shit fucking disease. But to think that in OUR world, with our friends who are like family, there are kids who want to be like Beau. Wearing tape. Getting finger pricked. Warms my wee heart I tell ya.

We had clinic the day before moving day too. FINALLY back with our fave endocrinologist, after a year of being on a rotation or something that meant we didn’t see him the whole time!!

He is just awesome!!! We knew that Beau’s HbA1c was going to be higher (read = worse) this clinic, as we felt we had been fighting constant highs for the whole 3 (and more this time) months!!!!! 😬😬😬 It had risen, which didn’t surprise us, but for once I didn’t get tears about it, as this Endo very easily made some changes to Beau’s insulin regime meaning, upping his insulin by 3 units per day!! Which is a lot in our wee ‘tiny insulin amount world.’ On average, children (not honeymooning – that is NOT making ANY of their own insulin) should have 1 unit per kg of body weight per day (in a 24 hour period) and Beau just weighed in at 18kg on this day, was only having 12 units per day. So we have upped it to 15, and we are almost 2 weeks in and so far SOOOOOOOO MUCH BETTER!!!!!!! When we run it this well, it does tend to mean more lows, so that’s something we need to watch out for. As too many isn’t good either!

We did miss our favourite nurse who was on holiday, but he had emailed me an amazing article and email just before Christmas, which made tears stream down my face while my heart was thumping, thinking ‘SOMEONE GETS IT. SOMEONE UNDERSTANDS WHAT WE GO THROUGH.’ So grateful.

We are really hopeful that coming up, we can get Beau onto a trial with the company who’s pump he is on. They are trialing the ‘Closed Loop’ system, meaning that the sensor and pump ‘talk to each other’ meaning that if he is dropping low, the pump will automatically stop his basal insulin. And if he is getting high, the pump will automatically give him more insulin. This is the dream for our foreseeable future. We would LOVE that!! Manual bolusing for food would still need to happen, but wow, that would allow so much more freedom!!!

Fingers crossed we can get on it!!!!!

The only negative, which is quite a negative for me, is that we won’t have the readings on our phones. So now, while Beau is sleeping RIGHT now I can see his levels. (8.3 FYI!) and when he is at preschool – I CAN SEE HIS LEVELS. When we are out and he is being looked after, I CAN SEE HIS LEVELS. When I wake him in the middle of the night, I CAN SEE HIS LEVELS.

Not only can I see his levels, I also feel connected to him. I might not know exactly what he is doing, but I know SOMETHING about him.

But, that might have to be a sacrifice that is worth making. We will see.

Anywho, it’s late now and hubby’s away for work so it’s just me on deck. Best get to sleep.

Before I do though, check out those incredible lashes.

There has been a looooooong delay with blog posts and I am not really sure why. No new news, sometimes I feel like I am just on here venting and no one really wants to read that.

I don’t have time to blog tonight, or any time soon for that matter but this is my therapy. And I need it right now. So, here I am. Currently making the most of the 7 minutes till I get the kids in from outside and in the shower before bed!

It’s Diabetes Action Month in NZ. I’m not really sure what that really means.  A month to be more aware of Diabetes and it’s affects on others. This year the theme is ‘Love, don’t judge’ or ‘Kei whakawā, me aroha’. Which can have so many different meanings. I have had people think that we caused Beau’s diabetes by giving him too much sugar etc, I also wonder whether that ‘Love, don’t judge’ message can be passed on to parents/whānau etc caring for people with diabetes, because sometimes we might drop the ball on something, or need a day off to care for our child, or be on the phone to preschool, or the diabetes team etc and maybe we aren’t the best mum/wife/friend/teacher/daughter/sister/aunty we could be. But we are trying. And the health of our diabetic child will come first. (And the health of our non-diabetic child as well.)

Phew ok. Unloaded that!

We have had a pretty rough time with sickness this term. Beau and Cooper both got a tummy bug early on, then I got a cough/cold and passed it on to everyone else. Beau had last week off preschool with it and is still coughing and snotty but is happy and has been to the Dr and it’s just a vvvvviiiiiirrrruuuuussssssss.

My poor Cooper has now had a severe allergic reaction to grass we think out at our friend’s place in the weekend, so it’s all on, it’s messy and it’s busy.

It’s tiring too.

It is life.

Kids are in bed asleep now YUSSS.

It is also coming up to Beau’s second diaversary next week!!

2 years. 2. FUCKING .YEARS!!!!!!!!!!!

Last year we all took the day off and had some family fun, this year we have decided to celebrate it on the closest weekend, or Friday as we can’t all have the day off every year for it.

We have talked about some things Beau might like to do and he is really looking forward to his ‘Lucky Day’ as he has named it.

Oh, my Beau. I am so glad that we can try and help you celebrate this, as for me it is heartbreaking and takes me back to the day our whole family’s lives changed forever. Yours, obviously. But also your brother’s. Mine. And your Dad’s.

But each year we WILL celebrate YOU. And how brave YOU are. And how every. God. Damn. Day. You fight this. You. Amaze. Me.

I am sad at the moment about Beau’s diagnosis. Don’t get me wrong, it could be so much worse (as some people like to say…) But also, do these people live with this day and night? Because ‘Diabetes Distress’ is real and has been noticed in the Well Being surveys Diabetes NZ sent out a month or so ago. Not for parents/caregivers of diabetics, but actual diabetics.

Look. I don’t know why I am still here writing these things. Nothing is new.

Ratios change all the time. Even today I was in touch with my fave paeds diabetes nurse to change a ratio or two on the pump.

Last clinic Beau’s HbA1c had improved which was AMAZING!!!!!! But since then, he has been really high so next time, I know it won’t be so great. So last night I uploaded his pump data and asked for advice to change it. I have changed it tonight, so fingers crossed it helps!

Great news is Beau is growing as expected and is perfectly average in height and weight which is fab news! He is such a wee chatterbox and literally talks ALL day in his cute wee lispy voice, arguing with us, ‘teaching’ us things he thinks, asking a million questions and just all round being quite cute. Mostly.

It’s hard to believe in just over 6 months he’ll be off to school!!!! Expect some therapy blogs around that time cos this Māmā will not cope!!!!!!! 😂😬

We have had some issues with the libre CGM recently which sucks and hasn’t been that normal for us (apart from the odd infection) but we have had a couple completely fail, or get pulled out which can get expensive!! They are $100 a fortnight, but we luckily get the Child Disability Allowance, which basically covers the cost. Unless they don’t work after 4 days or get ripped out after only one week! 😬

There is new technology available, to take the CGM readings more often, and is better than our Libre/Miaomiao system ANNNNDDD talks to the other pump (not Beau’s current one) so it is interesting so hear about that, it is almost double the price, so while ours works mostly ok and we have our current Medtronic pump I think we will leave it for the time being, but we are open to change and obviously whatever is best for Beau we will make work!

Hopefully the technology will only keep improving!!!! And be made more readily available to all diabetics!

Thanks for reading if you’re still here! xx

Check out my gorgeous little Wixys!!!!

KEI WHAKAWĀ, ME AROHA 💙

 

20 months! Jeepers!

That sounds like so long. Or it sounds like not too long ago. And in relation to diabetes I’m not even which way I feel about it. Was it ages ago? Or was it just yesterday? Who. Would. Know.

I am in a dark place right now. I am sleep deprived and sick myself. So my thoughts on diabetes are pretty low.

We had clinic at the start of July and things were ok. Not dandy. Not terrible. Well, kinda terrible but they wouldn’t SAY that. On one of the graphs we have to upload before we go, Beau’s freestyle libre one – it said he was in range 35% of the time.

35%!!!! WTAF.

The endocrinologist said it should be around 70% in range.

Oops.

Well, not oops, as oops would mean it was a mistake. Which is wasn’t. Obviously we try all the time to have Beau in range. So not a mistake. But what? A bad run? Are his insulin ratios off? Are we not making good decisions in his day to day care?

Well, truth be told. We don’t know. We continue to work hard, day and night to have him in range. We also continue to work hard to just be parents of a 4 year old and a 7 year old, and let our 4 year old diabetic child, be a 4 year old child. Without the ‘diabetic’ always in front.

There weren’t many changes that were suggested after the clinic, but we have changed the things that were suggested.

Somehow, Beau’s HbA1c was still around the same as it was last time. Not great, but not terrible.

Let me tell you, every day and night we make 100s of decisions in relation to Beau’s diabetes. And sometimes, they aren’t the right ones. Other times, they ARE the right ones BUT no 2 days are the same with this stupid disease, so it won’t do what you expect it to do.

Does that make sense?

Probs not.

Here’s an example.

From early on, we haven’t really ever FULLY ‘corrected’ Beau’s highs during the night. The reason being, when we did, the insulin would work TOO well, and bring him down low.

Last week, he was high during the night, so I went in, gave him a correction (not the full amount the pump suggested remember, cos that’s not something we would usually do…) and then he stayed high for the rest of the night, but not high enough to alarm us so we slept through it and didn’t bring him back down. We correct only if he’s 12. He stayed on 10 all night.

SO.

The VERY. NEXT. NIGHT, the same thing – he was 12. I woke up to his alarm, went in, and – gave the full correction amount.

What do you reckon happened?

HE WENT LOW!

See! It’s an ongoing battle between making choices like this that can really affect his levels. When his levels are crazy, then I’m imagining he doesn’t feel great. Particularly when they fluctuate from very high to very low.

It’s also hanging over our heads that, you know, keeping him in range as much as possible will hopefully see him develop less/or even better – no complications from diabetes as he gets older.

It’s a lot.

Beau is also ‘hypo unaware’ which means he can’t tell us when he’s feeling low.

Sometimes the signs are obvious, he will start crying and saying he’s hungry. Other times, there are no signs.

During the holidays we went to hang with my good friend and her family for the day. We had lunch and then went on a big neighbourhood walk to different parks. I noticed at the second park that my phone said Beau was 4.4 heading down (the phone readings aren’t always accurate and also they are 15 mins behind actual right now readings from finger pricks)

So I finger pricked him. 2.4. What the fuck. His lowest reading ever. But you couldn’t tell, he had been playing, walking, running etc. In fact, he barely stopped for me to prick him. I gave him 4 skittles and he ran straight onto the playground and climbed up to this super high net thing where he was well above my head.

Honestly, my heart was in my mouth and it was an awful few minutes. He was fine. Happy as, climbed back down himself and wanted to keep going. We turned back for home then and I carried him for a bit, but not too long before he was off walking/running again!

These moments take years off my life, I swear!

As mentioned earlier, I’m not well at the moment and somehow I managed to sleep through last night. This morning I was in the boys room and there was a half empty juice box by Beau’s bed. Obviously, he’d had a low during the night that KW had treated. He said to Cooper and I – ‘Look what I had!’ and Cooper said ‘I don’t get juice that much’ and Beau was like ‘Yeah but I do, cos I have diabetes!’ in such a happy wee tone. I really hope he stays this happy about it. It’s nice for him to feel like he’s spesh. Every time he has a site change or sensor change he gets the iPad, which is another wee treat he enjoys, plus the obvious skittles as a low treatment too.

Beau’s behaviour is another new thing, well not NEW cos, kids! But he can be very aggressive at times. I haven’t yet worked out if there is a pattern with his glucose levels, but sometimes when his levels are high, he can also be quite ‘high’ lol

It’s hard for me to imagine what he feels like in that wee body of his when his sugar levels aren’t very stable.

It’s also very hard to explain to people why we haven’t yet ‘got the hang of it’ or ‘got used to it’ or ‘sorted it all out’.

In fact, 20 months in, and I’m so far not sure that that’s a thing. Because when things MIGHT be going ever so tentatively smoothly, they will change. Which is hard to explain to people.

It’s a hard disease to control. Extremely hard. So hard it sometimes seems impossible.

But, our Beau Richie won’t know that for a while, so it’s on us to keep on keeping on!

Super blessed to have my wee bestie.

❤️

Inspecting the needle and tube that was just about to be inserted into his bottom last night ❤️

I have been a bit quiet on the blog front as there isn’t too much to report really, thankfully we are safe and well at home – THANK GOODNESS!

Previously, I have shared that Beau being diabetic means he is immunocompromised – which had filled me with fear that he is more likely to catch viruses – such as Coronavirus, and of course then, if he actually got it, well that’s a whole other story!

Before the lockdown was announced, our wonderful Prime Minister announced that we were at Alert Level 2 and those with existing medical conditions (eg. Diabetes) were to stay home. I felt a huge sense of relief when she announced that. The reason being, leading up to that announcement I held such worry about still sending Beau to preschool and Cooper and I still going to school and whether or not that was the right decision to make. For Beau. For our family. What a tough choice, would it be an overreaction if we stopped work/school/preschool? What about my income? Thank goodness we didn’t have to decide as ‘Cindy’ decided for us, and then a few days later announced full lockdown in Alert Level 4. Phew! (Isn’t she LEGIT THE FUCKING BEES KNEES!!)

My anxiety is managed really well at the moment, because we are at home. We are safe. We are well. Beau is well. He is safe. And mostly, we are happy. 🤪😳🥴😂

We had Beau’s last ‘clinic’ appointment (on Zoom!)  a couple of weeks ago, or a week ago maybe? Who knows.. and that went ‘well’. I didn’t speak to the endocrinologist about Covid at all, but once I had time to digest our appointment I called the Diabetes Paediatric Team and spoke to one of our awesome nurses. She said that if his diabetes is well managed, that means that Beau is not more likely to catch viruses eg. Coronavirus, so her advice was that it’s more ‘poorly managed’ diabetics that are more susceptible to catching viruses and Beau currently doesn’t fall into the category. She said based on his last HbA1c he is fine. He was 53 and ‘poorly managed’ sits at 70. Phew. So I took this as a ‘Yay, we don’t need to worry anymore, he’s not any more at risk than Cooper etc and they just mean older, unhealthier diabetics.’

That made me feel joy. Actual joy. This wouldn’t affect Beau anymore than it would affect Cooper.

But after some time to ponder on it, something didn’t sit right with me…

If Beau gets a cold, his blood sugars can go haywire and it is tough to manage his diabetes. Most people’s BGLs can go high when they are sick. We have had times when Beau has been both high and low because of sicknesses like colds. We (ME really) are petrified of him getting a tummy bug (one reason being – because this is where most of my anxiety/OCD is based) because many diabetic children with bugs end up in hospital!!

So, if stress and sickness make his BLGs go up and down like crazy – what could a nasty new Coronavirus do?!?!?!

I have done some more reading, as there is some information about there in relation to Covid/Diabetes, but not a lot, and I am not sure if there is much on children with Type 1 getting it or not…

But basically now, I feel that as this safe, secure lockdown (for us anyways) is drawing to a close, I have huge anxiety creeping back in to my life. Because, well at this stage we don’t know what next week will look like – in ANY way, shape or form, but because I feel I am back to square one with what to do with Beau. (Although, don’t get me wrong, I am hanging out desperately for a triple shot flat white and to get my nails done again!)

So, now I kinda know, that he shouldn’t be more likely to CATCH Covid 19, but actually, what if the worst happens, and he DOES catch it. THAT is when I get concerned. There are many things that could happen. Lots of complications, with managing his Diabetes but also managing the virus. He could more easily get pneumonia. There could be long term effects on his eyes, feet, kidneys, heart etc. He could go in to dangerous DKA. Or even worse (I can’t and won’t go there.)

There is a lack of clear data though, as there are different types of Diabetes (eg Type 1, Type 2, Gestational) and the data that I can see has not distinguished between the types.

So now, what to do?

For now, the most we can do is TRY our very best to keep Beau’s BGLs in range (which is what we try to do every day and every night anyways!) and try to focus on now and enjoy being home with the boys as much as I can before we have other decisions to make on how we can possibly leave this lockdown safely.

I am so wanting to get back to the old ‘normal’, school, preschool, cafes etc. But as a country, or world really – none of us know what this ‘new normal’ will look like.

Stay safe peeps, hopefully all of this blog was a huge waste of time and energy about my worries. And if anyone is still reading these random rambles, thank you. I love writing these blogs so much, it really helps me deal with my thoughts and feelings about my Beau Baby and this condition.

Master Beau – pretty happy with his Easter haul!

Kia ora…

It’s been a sweet minute or two between posts, sometimes cos life is CRAZY busy (waaaaah) and sometimes cos there is nothing new to say.

We weigh then calculate food, we bolus, we correct, we treat, we prick, we wake, we stay awake, we wait, we turn off basals, we reduce them, we increase them, we ketone test, we basically work hard 24/7 to keep our youngest son alive – as well as his older brother that doesn’t require all of the above.

It’s an odd thing, just ya know, casually being an organ for someone. Especially on top of every day stuff!

Recently, Cooper had a super infected foot from an allergic reaction to some tape. Like, it was GROSS (if you’d like to see pics I have a whole album on my phone!) And honestly, it was so hard to keep on top of that (antibiotics and antibiotic cream) as well as Beau had an infected sensor site, so needed antibiotic cream, as well as normal every day diabetes management. Phew! PLUS did I mention their Dad had ‘manflu’ at the same time! Lol I must admit I can be very one-track-minded focusing on one aspect of caring mainly for one person for example – so I found all the above pretty challenging to remember to attend to!

Beau’s grommet and adenoid surgery went well, in fact just this morning we had his follow up with his ENT surgeon and he is all in tip-top shape now! So we will have another appointment in a year to see how he is tracking.

It has been exactly ONE YEAR since Beau got his pump! Crazy to think how fast that has gone! So that means, KW and I haven’t given ONE INJECTION IN A WHOLE YEAR!!!!!!! After giving 4 a day, now we wouldn’t remember how to do it! lol We just change the needle in his bum every 3 days, insert a sensor in his arm every 14 days and finger prick when needed. Sometimes not even once in a day, sometimes 8 times a day. Most the time somewhere in the middle.

It’s so crazy to think that he’s had that amazing life saving device attached to him and his wee bottom for a whole year! We are so bloody grateful we got it so early on in our diabetes journey and hope that our hard work will continue to help Beau’s HbA1c to stay in the green range. I am interested to see how our next clinic appointment goes, hoping that it has improved since last time – that’s for sure!!!

We have had some issues of late at preschool, which has been a bit of a shock, as I had almost got comfortable with having him there. A lot of the things that happened were bad luck and not caused by the people who primarily look after Beau and his condition, but – it was a huge exhausting deal for a couple of weeks and actually consumed me and seemingly all of my energy. I had a meeting with the team leader, outlining my concerns and what I felt needs to happen next – which has – and now I am beginning to feel comfortable again. The main thing, ALWAYS, is Beau’s health and happiness and I will do whatever it takes to ensure this is first and foremost. Yup. I’m totally THAT Mum. And better yet, I give zero fucks. No one is going to fight for my kids like I am. I will stand by that too and how I pretty much fought to have him tested for Diabetes when I KNEW something wasn’t right. (I might play that card for the rest of my life lol!)

So, now I am going to mention that C word everyone is talking about…

You knew it was coming right, I don’t even watch or read the news (I know, ignorant but I just can’t. And haven’t in years.) But every time I open a social media account, it’s there. Again and again.

Blog followers from the beginning will know my history with  PND (Post Natal Depression) and anxiety, being diagnosed with GAD (Generalised Anxiety Disorder) and OCD (Obsessive Compulsive Disorder).

So where does this leave us now – with Coronavirus, an immune-compromised Diabetic and a mum with OCD in regards to sickness? Plus KW and Cooper!

Well, at this point things are ok. As it hasn’t yet reached Christchurch, or a community level. When this happens, things will change. Beau attends preschool 3 days a week, and I teach 7 days a fortnight. Both super high risk zones. This is far away from now (hopefully, or better yet, not even going to happen!) so I am trying not to think about it or panic, I guess I’m not sure how we will manage if it does…

Diabetics are immune-compromised, I am not sure on too much of this detail, or even if Type 1’s are more compromised than Type 2’s – or if there is even a difference. But I saw a wee video from an endocrinologist in the US talking about how when a diabetics BGLs are in range more often, the risk to them can be slightly lower.

Beau’s blood has antibodies, which means his Type 1 Diabetes is an auto-immune disease. This is why he is immune-compromised.

So, I’m trying to keep things as normal as possible for us all at the moment, but my anxiety about taking the kids to public places and things is more present at the moment – not that they know that. I’m annoyed to be using hand sanitiser again and my hands are sore already from using it a couple of times this week. But Beau has to be safe, and to keep him safe – the rest of us have to be safe.

Complications from other normal viruses are super scary when combined with T1D, so something as unknown as this is scary.

Reading what I’ve just said – it sounds like I’m panicking – which I’m not, I guess I haven’t been able to catch a minute to think all this stuff through and now I’m writing it – it is real, and a possibility. But keep on keeping on, not many children have had it? If any? (again, don’t watch/read the news) I know it’s more of an issue for older people and for people with pre-exisiting health conditions (ahem!)

I just had such a lovely bedtime story with him, all snuggled up in my bed – where him and his brother are now both sleeping beside me (soz KW lol wonder where you’ll sleep tonight!) and he was just perfect. Snuggled in, gazing up at me with his wee lisp and high pitched voice asking questions about his favourite book, even though we read it often – The Gruffalo’s Child. ‘Oooh, I know who that is, it’s owl!’ etc. Meanwhile, his big brother was having big boy time with KW in the lounge watching the rugby. ❤️

It’s all in these moments, the snuggles, the innocence, the hair stroking, the kisses, tickles and goodnight songs and ‘their words’ I tell them every night that I love. It’s funny how it makes you forget the wee challenges along the day.

And, he’s so deliciously adorably extra-specially handsome!

But LOOOOOK. Best friends. Such beeeeeeautiful babies and I couldn’t be prouder of them both.