First blog of 2020!

2020.

We survived 2019.

Now it’s 2020 – surely we can do more than just survive it… we’d love to thrive this year!

We are all still here… working hard – day and night.

We had clinic on Friday, and as we had feared – Beau’s HbA1c had climbed… higher than expected.

I was upset, I couldn’t help it. Remember, I likened it to getting the test results back for the test you’ve sat (for the past 3 months in this case.) So I felt like we failed.

Which, of course, we didn’t. It has risen, but is still in the ‘green’, so probably I overreacted. However, it’s still not good news. We want it to be back down in the ‘non-diabetic’ range.

They say it’s normal for it to rise at this time, as he could be outgrowing his insulin doses, holidays change things up, his body could be making less of his own insulin…(how long will he continue to produce it for is anyone’s guess!)

Really, it’s risen because Beau’s BGLs have been higher lately. Much higher.

Often it’s been through lack of routine, lots of ‘grazing’ rather than set meal times (which we would normally do during term time etc), Christmas, travel, camping, different food we don’t know the correct ratios to bolus for, heat, different activity levels, could be stress, sickness (he still has a constant runny nose and cough… looking forward to surgery at the end of the month to get new grommets inserted and have his adenoids removed to see if that helps!!!!)

And that’s a whole other kettle of fish lol.

Anyways, so because of the higher HbA1c, the endocrinologist changed some of Beau’s insulin amounts so we could attack the higher BGLs more aggressively. Great! Hopefully this will improve everything!

…..

4 days later and so far on the graphs – we can see a seesaw. From highs to lows, lows to highs. So now we are treating more lows (due to the increase in insulin, or due to us being more aggressive – hard to say at this early stage…) and still treating highs.

Beau’s poor wee body must feel super shit going from low to high, high to low etc…

It’s super frustrating because no day is the same, no hour is the same and it is so hard to make sense of sometimes!

The great thing is, Beau has been having a lovely summer, eating the same things as all the other kids, doing the same activities and having fun being a kid. THAT is the main thing. THAT is all we want as parents.

What is shit about diabetes, is that the higher HbA1c’s etc, over time, contribute to an increased risk of complications due to the disease… I can’t remember exactly what they are right now, and I’m purposely not going to look it up, as I don’t want to add more fuel to the parental anxiety fire. Loss of limbs, blindness, kidney failure to name a few I’m pretty sure… will leave it at that.

Beau is back at preschool now, and loving it! His numbers are good pretty much all the time while he is there! A good routine and we have already weighed and calculated all of his food for the day. My goal is to manage it as well as they do, or I might have to look into putting him in there 24/7 lol (kidding – he’d never go to sleep without me!)

His pump has a couple of cracks in it too, so we are getting a new one (the same) tomorrow… not sure what happened, but it is worth $8000 so we’d better be super specially careful with this next one! The current one has only lasted 10 months, eeeek..

But I have ordered him a new Paw Patrol pump belt which should be arriving in the next few days too, so hopefully he loves that.

OH and for those of you who might read this who aren’t on my social media – THE OTHER DAY BEAU FINGER PRICKED HIMSELF FROM START TO FINISH!!!! TEST STRIP LOADED AND ALL!! Super proud of my amazing 3 year old.

3. Years. Old.

Fucking ridiculous really that this is for the rest of his life.

 

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Mr Beau Richie doing his very first full finger prick and BGL test!

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Camping – love our snuggles <3

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Camp mornings xx

Beau’s First ‘Diaversary’

Here we are.

ONE. YEAR. LATER.

The 3rd of December.

Beau’s First ‘Diaversary.’

One year since Beau’s diagnosis of Type 1 Diabetes and our hospital stay.

I actually can’t believe how fast this has happened. I feel like we should have this sorted now. We should know more than we do. We should have Beau’s Blood Glucose Levels (BGLs) in range all of the time. Newsflash – we don’t.

My baby Beau has survived one year. And we have too. His Mum and Dad. His brother. His nana. His preschool teachers. Us. You. (Thanks for reading. And thank you for your comments of encouragement and support as we have navigated this road this past year. They mean a lot. A lot, a lot.)

Thank you to all of the people who have helped and supported us along this crazy wild ride. Special shout out to my Mum for having Beau each fortnight (and other times) – I know this scares you beyond belief so we really appreciate it. And also Amber, you continually go above and beyond for Beau, and for me. I think without you 2 I would have not been able to manage.

Today, we are off work/school/preschool to celebrate Beau. As a family. Beau will get to decide how we celebrate his first ‘Diaversary’ and this is a tradition we will continue to uphold each year (hopefully on the day, or the closest weekend.) The fact that he is growing, he is fighting this disease, his brother has been also coping with some huge changes and that we have managed to keep him alive by being his pancreas!

I will forever be in awe of him and what he deals with – barely blinking an eye on the daily.

Cooper has also blown us out of the water! Growing up so much quicker, dealing with more tired parents, more attention on his little brother, understanding things that we used to take for granted have now changed. What a year for him. We couldn’t be prouder of how helpful and knowledgable he is and how patient. How amazing.

In the past year we have learnt so much. We have become experts in our son’s care. Even more so than the GP – make no mistake of that!

We have learnt how to read packets of food, and that packaged food is SO much easier to calculate than weighing food and multiplying the weight by the carbohydrate factor.

(Which we have also learnt how to do.)

We have learnt how to insert needles into our son every 3 days.

We have learnt how to bolus.

We have learnt how to change the basal rate temporarily.

We have learnt the smell of insulin.

We have learnt how and when to finger prick him.

We have learnt how to calibrate his MiaoMiao device from his finger prick reading.

We have learnt how to treat highs. And how to treat lows.

We have learnt to live on hardly any sleep.

We have learnt how to try to include Cooper.

We have learnt how this has impacted our family and Beau’s big brother.

We have learnt how to tag team.

We have learnt how to manage with next to no time together.

We have learnt that our marriage can weather a storm like this. And will continue to weather this storm.

We have learnt we are a strong team.

We have learnt so much more than all of this…

We have learnt that Beau is the most amazing, strongest, bravest 3 year old in the world.

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One year ago in hospital
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The boys beginning their education on Diabetes
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A year on
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Best friends. My loves

Beau Richard Wixon

Our baby boy’s name is Beau.

Choosing a second boys first name wasn’t as easy as our first boy, it had to be something that would ‘go with’ Cooper and also Wixon. Something that we both loved. Something that would complete our family perfectly.

His middle name was harder to pick. Mine is Jessica after my Great-Nana, Kodie’s is Richard after his Great-Grandad, and Cooper’s is William – after my Special Grandad. I wanted something ‘cool’ to go with Beau as his name was short. But given the rest of our middle names are family names – we kept that same tradition for our last baby. We decided on Richard, because Kodie and his Dad both have that middle name. After Larry’s Dad.

From the minute he was conceived I KNEW he was a boy. The whole time I was pregnant. At our 19 week scan we both saw a penis and testicles before the lady doing the scan said or asked us if we wanted to know (we were going to find out, and she took about another 20 mins to tell us even though we both saw!!)

I knew he would be perfect. When I was pregnant with Cooper I was concerned, not that he would be ‘ugly’ but that I would think he was ugly. Luckily he was super cute and I never ended up having to worry. Oddly also, in the delivery suite with Cooper I knew I wanted another baby. To feel that intense Love At First Sight, Love.

Thankfully, after a very sad loss between the boys, we finally got our beautiful, amazing, perfect second baby boy on Friday 17th June 2016 at 11.51am.

He was born via emergency c-section after a looooonnnngggg time in labour. I had gotten to 8cm dialated but nothing was happening, as he was posterior. The baby was ok, I was getting more and more unwell so the decision was made to get to theatre ASAP (I’m not a stranger to birth stories gone wrong lol with Cooper I lost 2litres of blood!)

The theatre staff asked me if I could feel them hurting my stomach – I said yes, the next thing this massive purple baby was being shown to me from above the curtain! WHAAAAT he was here!!!!

They weighed him and I feel like I was in and out of consciousness here but I will never forget my amazing midwife shouting ‘Renee! He’s ten pound!!!’

WHAAAAATTTTTTTTTTTT!!!!

We had no idea, we had thought he might be around 8 pound something, as Cooper was 7 pound 7 – perfect. Although Coops was 8 days early and Beau was 6 days late haha.

Because he was so big, it turns out his blood sugar was low, so I (and by I, I mean THEY – I was in no state to!!) had to syringe colostrum out of my breasts to get his sugars back up. After a couple of times – this worked and he was ‘normal.’

I thought – shit – maybe I did have gestational diabetes – even though I ‘passed the test’ and the nurses etc assured me it wasn’t that.

I forgot about that, then later that night, my besties were in the hospital visiting Beau and I. I was still whacked out but loved having them there! One is a nurse and noticed that Beau was breathing a bit too fast. For her to be alarmed is seriously alarming to me as she is the calm to my crazy worrying storm. We paged the nurses and of course they were short staffed but had Beau seen to by a Dr. He was breathing too fast, but all of his other signs were fine so they weren’t worried.

Fuck, I was. I thought to myself – that night, this kid is going to be a worry!

UGH if I could go back and change that thought I would. I so badly would. This is an OCD thought – that I caused it. ‘It’ being Type 1 Diabetes. Of course I didn’t, I know that. Logic tells me that. But my tired, warn out, OCD brain gets me to think it from time to time.

Beau’s T1D is caused by an attack on his immune system when he was sick with a virus last year some time. It is BAD LUCK. Random even. Not caused by the low blood sugars at birth. Not caused by us feeding him too much sweet food. Just shit luck.

That shit luck has played havoc on our family for the past approximately 300 days.

I’ve been finding it very tough lately, that – I’ve made no secret of. I am currently receiving support from my old OCD nurse who is now in Brief Intervention Counselling. I get a whopping 5 sessions. I’ve already had 2. It’s going too fast!

This week I had a session and I went in with an idea of what I needed. I need help. I keep thinking of this in a negative way.

Everything.

Like.

Ugh. Beau has diabetes.

Ugh. We need to bolus.

Ugh. I need to measure the food.

Ugh. He’s low.

Ugh. He’s high.

Ugh. He needs a correction.

Ugh. It’s a birthday party.

Ugh. Let’s have fish and chips for tea.

Ugh. The MiaoMiao isn’t working.

Ugh. It’s site change night.

Ugh. He’s sick.

Ugh. We are setting alarms.

AND IT HAS TO STOP!!!!!!

* (Can I just note, I never say those things, they just run through my head at       times – Beau would never know I was this down on it – promise!)

THIS. IS. NOT. BEAU. THIS. DOES. NOT. DEFINE. BEAU.

Beau is Beau. Beau Richard Wixon. He is a 3 year old boy who loves Peppa Pig, TV, chicken pasta, fluffies, bouncing on the tramp, living in the sandpit at preschool, his friends, his brother, throwing things, shouting, laughing, swimming, snuggling, Paw Patrol, being super duper cheeky, not listening,, Dinosaur Train, playing with his toy animals, baths, reading books, going to Music, going to Tumbletimes, having play dates, his brother, his Daddy, his pets, and his Mum. God damn he loves his mum (probably almost as much as chicken pasta!) He is actually perfect and I have been obsessed with him since day dot.

THIS IS WHAT I NEED TO FOCUS ON.

MY BEAU RICHIE.

I am in such a downward spiral and fusing myself with thoughts like ‘I’m not good enough. He’s better off without me. Other people can manage this better. I’m shit.’ and picking up all the other tiny shit things I feel and BELIEVING them.

I am not listening to those many many people who tell me I am doing a great job at managing this. That I can keep doing. That I am Beau’s best Mummy. I am ignoring them. I am not accepting help. I am not even asking for help.

So now, my job is to listen and try to believe it. (Please know this is not a request for you to tell me, I can read back on past posts on all the wonderful comments.)

But my MAIN job is to remember that Beau is Beau. He is not Diabetes. Diabetes isn’t him. Diabetes isn’t our whole world. It is a huge part of it now, but no matter how much I hate it, it’s not going anywhere. So. I need to learn to live with it. In a more positive way. Because Beau does. That amazing wee boy!!!!!

Anyways, another thing I have to do – is take 15 minutes ‘sacred time’ every day, so I’m off to watch some Netflix! Yay for hols!

P.S – Look how freaking adorable he is! Those eyes!!!

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We are still here!

It’s been a while, for a few reasons. Mainly cos I haven’t had time. Also cos the site was down last time I went to blog. And cos I’m not doing so well with it all at the moment.

Recently (for like, well over a month) Beau has been living on the high side of life. So most of the time, instead of being in the ‘green’ range (BGL of 4-8) he has been yellow (8-12) or red (above 12) this is highly stressful and originally it was because he was pretty sick with a coldy, fluey, virus thing followed by a staph infection… But here we are, however many weeks later, still high.

A few weeks ago, I uploaded his data from his Libre scanner and from his insulin pump and the team suggested his basal rate should be moved up a bit (the BASAL is the word for the background insulin, so the tiny amount that gets into his body from the pump every hour or so.)

So we tried that, still didn’t work. Most days and nights we are having to ‘correct’ which means giving Beau a ‘bolus’ (BOLUS means a spike in insulin, so a large dose needed to counteract the carbs he eats) the correction bolus is just another dose of insulin to bring his BGL down.

So this week, we have changed both his basal and bolus rates so hopefully we can keep our wee man’s levels in the green for a lot more. We feel like this is a kick in the pants and will definitely mean at our next clinic appointment Beau’s HbA1C will be a lot higher, so we won’t get that awesome ‘exam result’ like we got last time. By Beau being much higher like this for long periods of time, this will increase his chances of developing risks associated with Diabetes so it’s super stressful and upsetting. Because he was diagnosed SOOOOO YOUNG Beau has much longer to live with the disease than a lot of others so we have a lot of pressure to manage him as well as we can.

If you are my friend on facebook, then you’ll know that I had a wee rant on Friday about me not coping. I mean I am ok, but I am not also. It’s been almost 9 months since diagnosis and that means it really is reality,  it’s all day, all night, every day and every night. So (we’ve discussed this before) I am tired. I am also working a demanding job (teaching!!!) and have the other normal day to day Mum/wife/friend/daughter etc stuff) Sometimes if I am particularly tired I feel really like I am failing in all areas.

We have talked a bit about my anxiety before, and about how just after I finished my treatment for OCD (around sickness) and Generalised Anxiety Disorder, that Beau was diagnosed. Like 2 weeks later!! Previously, I kinda joked about the irony, but now I feel I am ready for some ‘booster’ treatment.

Lately, with these walls falling down I have been feeling  more depressed, and for me, when I feel this way, my main symptoms are tiredness, and anger. I was finding myself angry at everything and everyone. Since then I have made an appointment with my nurse who I worked with at the Anxiety Disorders Clinic and I am super excited to meet up with her, and get some help for dealing with Beau’s illness as well as all the other normal life things.

Since just making the appointment I have already been feeling better, knowing that I am making some steps in the right direction and trying to be kind to myself on perhaps what else I could be trying to do. I dunno. Such is life, it ebbs and flows and sometimes we just get warn out. I’m back to the point now, when too many plans fills me with anxiety and I don’t do any of them (sorry!)

Beau’s sites have been bothering him a bit lately, getting sore or caught up, I’ve seen a bit of blood in the tube coming off the needle, and some on his plaster so that’s meant more site changes which isn’t fun and also freaks me out that we are going to run out of site change equipment as you only get a certain number each year. We often have to change Beau’s needle more frequently than 3 days as it is on his bottom, it can get sore, blood, get pulled out accidentally or pooed on!

Beau recently took part in a trial for a different CGM (Continuous Glucose Monitoring system). When we were approached we jumped at the chance, to help diabetes, to help Beau and others with the technology that is changing and improving! The Dr who is running the study is one of Beau’s endocrinologists, so we are proud to help. The trial was, inserting another sensor (as well as Beau’s normal Libre sensor) into another part of his body (which was hard cos he’s so tiny and also was recovering from the staph infection at the time!) and then they would pick up the data from the CGM on their end after the trial but we had to finger prick to see how accurate it was.

Before getting the Libre, we had to finger prick Beau (to test his BGL) at least 6-8 times a day/night. Now, usually, we just finger prick if he’s heading low, or high. For the trial, which was 10 days, we had to do the 6-8 times a day every day, plus for 3 days of it, we had to finger prick him every 15 minutes for 4 hours!!!!!! Looking back now, I’m not sure why we said yes, well I am – we want a closed loop system soon!! LOL (This is when the CGM speaks to the insulin pump, so it is all automated hopefully one day!) but doing the 15 minute finger pricks were not fun!!! But, of course, my Beau baby rocked it!!!!! He only complained about the last 2 times on each of those days! Incredible!!!!!

Fuck me that kid’s amazing. The shit he deals with is so annoying and painful and he’s constantly got things attached to him, and it’s all never ending and you barely hear him complain! I mean, we always hear him complain about his brother, and what’s on the TV and Rocky eating his food thats dropped on the ground lol but he’s 3! So, ya know!

So then, I feel like a real cock for coming on here (or onto my social media for that matter) and venting. Cos it’s not even me! And if Beau can handle it so well, and with such courage – why can’t I?! It’s not even me with this disease. Although, FUCK I wish it was. I would give anything to rewind a year, speak to the powers that be and give me Type 1 and leave Beau completely out of it. And you know what, I would feel much less hard done by if it was me. It should be me!

(I do probably eat enough chocolate to end up with Type 2 soon, but THAT’S VERY DIFFERENT!)

Right, well I’ve rambled, and enjoyed getting back to this again, not that you guys have been missing my vents I’m sure. I had a big day at work, followed by some awesome professional development on emotional regulation and trauma which was super useful and I can relate to – living in a permanent state of 98% sand papered brain. (if you know, you know) Anyways, where I was going with this was that Beau napped today in the car with his Nana, so wasn’t asleep when I started this. I’m still lying beside him typing this and it is that boring he has finally gone to sleep lol.

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(This photo was the other night, he had just been low. I treated him and tested to make sure he had come back up then he feel asleep within 10 seconds in my arms. We stayed like this for ages.)

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As it is now the school holidays I have a spare minute to blog and had already been thinking of what I would write. Something positive, I thought. All my blogs seem to feel slightly… negative (I guess that’s part of the writing therapy for me, and I don’t make anyone read them so I guess, read at your own peril if you don’t like negative things lol)

So usually, we muck along ok day to day, doing the work of our son’s pancreas. Remember, Beau’s BGLs should be between 4-8.

Mostly Beau’s BGLs show up as green (perfect) and sometimes yellow (just out of range) on the phone graphs… the daily/nightly grind is relentless. We calculate food, we bolus accordingly on the pump, we watch what happens, see how much insulin he has on board and if we need to give him more, or is he dropping low so do we need to treat him etc.

Other things we need to do are we have to calibrate the phone readings with what the actual finger prick readings are. The Libre sensor readings are there too. So at times, there are 3 different readings on what Beau’s BGLs are at that time (although the sensor and phone are 15 mins delayed) so we need to take that into account too.

Along with that, every 3 days (sometimes less) we also need to change Beau’s needle site in his bottom and the insulin cartridge in the pump as well and every 2 weeks change the Libre sensor in his arm that takes the readings, and that the MiaoMiao attaches to, to send readings to mine and KW’s phones.

On Saturday Beau went to a birthday party for one of his friends from preschool. He had so much fun, and perhaps I was a little too light on the bolusing (with different foods and party foods it is more of a guessing, estimating game rather than a measuring and then multiplying that measurement with the carbohydrate factor game) so it can be hit and miss. That’s ok usually as these aren’t regular occurrences.

So Beau was high after the party. Saturday night, was ‘site change night’, and it also happened to be ‘sensor change night’ so there was a lot to do, alcohol wipes out, skin prep wipes, adhesive remover wipes, insulin cartridge, new reservoir, new needle and tubing and all was sorted.

Beau is such a bloody champ. He gets the iPad when it’s site or Libre change day so he’s happily distracted and most of the time it works a treat!

Blows my mind that kid. It’s really incredible to witness how brave he is day to day.

Anywho, he’s pretty much been high ever since. He took SO LONG to come down on Saturday night, it was about 3am!

Today upon waking the phone said he was 8.9 which is quite high to wake on! So I finger pricked him and he was actually 4.8 – much more normal to wake on. He had his breakfast, where like every day I measured and multiplied then bolused to those measurements and what his BGLs were.

Then I was getting all 3 of us ready to drop him off at preschool, looked at the phone and he was 19! Hoping that the phone was still way off, I finger pricked him. 18.2 eeeeekkkk. Why so high?!

He had almost enough IOB (insulin on board) to come down (I gave him as much as the pump said he could have) but he wasn’t coming down. So of course I couldn’t send him to preschool until I had brought his levels back down.

Cue – running races around the house with Cooper, jumping on all the couch cushions, running again! I also changed his site early in case the other one wasn’t working well, as he had been unusually higher since Saturday. Although the site looked fine, I needed to know it was all good so just started again!

Finally after many more finger pricks I could see his BLGs dropping. 18.2 – 14.0 then finally 10.2. He could go to preschool an hour after first intended (late anyways, as it is the first day of the holidays!)

So Cooper and I dropped him, I chatted to his AMAZING teachers then Coops and I had a coffee and cake date. Delish! Such fun having wee dates with them!

We went to the supermarket and for 15 mins didn’t check my phone…

Beau hadn’t had any morning tea as we had arrived at preschool at 10.30 and he didn’t want any. So… now he was LOW! The phone was saying 2.7 and still tracking down! Eeeek. So his teacher called me, finger prick was 3.6 which is better, so she treated him with mentos and jellybeans and 10 mins later he was 6.3! Phew, crisis averted. Till next time lol

Now, I can see on my phone he is a very happy green 7.3. I may finally actually be able to sit down and start my work now!

It’s just a lot. It’s full on and 24/7 and if I seem tired, or vacant, or busy or haven’t been in touch, then… this is why!

I think how on earth do we manage? People, with all their issues, there are children out there with cancer – how do their parents do it? Disabled children? Children with behaviour issues? Sick partners? It is so much to bare! When parenting ‘normal healthy’ children is a lot and exhausting there are so many others working SO hard behind the scenes.

The children themselves are such treasures.

Cooper is such an incredible human being! All he wants to do is be silly, make people laugh, have fun, play rugby, talk about rugby, laugh, say toilet words, crack me up with his awesome sense of humour, play with his brother scaring him and teaching him things, he’s super bright and will listen (when he wants to!!) and be observant and thoughtful and questioning and GOSH that guys memory is insane!!! It takes a special boy to be a wonderful big brother, particularly to someone who takes so much extra time and attention away from him. Coops’ new world is full of ‘What are Beau’s levels?’ ‘No, we can’t have that as Beau is too high.’ ‘Beau has the iPad now as he’s getting a site change.’ ‘Mummy’s tired as Beau and I didn’t have a good night.’ etc. It’s a lot. He deserves me to buck up my ideas!

Beau lights up the darkest of days and nights with his amazing snuggles, his crack up sense of humour, his super cute lispy voice, his thoughtful observations, his gritted teeth psycho side, his hair playing hands, his love for books and puzzles, his animated voice, his fabulous pretend play skills and his love for his family and friends.

I knew the minute he was born that he would complete our already amazing and lucky family in the most perfect way, and he sure has!!!

Last night, the boys wanted to sleep together in Cooper’s bed and stayed that way all night. In the morning I asked if they had a good sleep, Beau did. Cooper said ‘No, cos Beau was just snuggled up to me all night!’ heheeee so precious….

Beau’s phone now says 8.4 and rising. Poor baby must feel a bit crappy to go from so high to so low then climbing back up again.

Happy school holidays! Hope everyone has lots of yummy coffee in the am, and a wine or 2 in the pm to keep them sane!!

 

Rollercoasters

I am NOT a fan of rollercoasters, at all. The lack of the control and the hideous non stopping of them and YUCK. lol

Life is such a rollercoaster! So crazy how one minute you can be celebrating and next you are not.

Diabetes is SUCH a rollercoaster, up and down glucose levels – in a single hour, in a whole day, etc.

On Friday we had Beau’s clinic appointment and it was freaking awesome!! The Drs and nurses were so happy and so proud of us for managing his diabetes so well! We are so proud of ourselves and of our Beau and were actually surprised as we had thought it was going to be worse! We had felt that Beau had been running a bit higher lately and spending less time in range. Basically every day is us (and his amazing preschool teachers! and my Mum) working hard for Beau’s glucose levels to get and stay between 4-8. The clinic appointments every 3 months are for Beau’s HbA1c levels to be tested (the last 3 months of his levels basically in one number… soooo it’s like every single day is the ‘test’ and the HbA1c is the exam result!

We feel so genuinely happy, and proud of all of us that we had such a good result. Beau’s HbA1c is what a normal, non-diabetic persons is!!!! AMAZING!!!

The amount of crap this kid puts up with on the daily with little fuss is super amazing so mostly, we are proud of HIM. But like a rollercoaster, it’s an up and for once, even ME (who’s SUPER hard on myself about managing this, but also pretty much everything in life lol) was actually proud of MYSELF. And of course of KW.

Shit I love my KW. I love how this is not all on me, we are husband and wife. Partners in crime. Mummy and Daddy. He works just as hard on Beau’s care as I do. I feel proud of us! We simply could not do this without each other! I am so lucky, Beau is so lucky. KW is also lucky! haha as is our wee Coops!!!!

Anywho, then came this past weekend where for Beau there was a runny nose and headaches, then temps started and little to no sleep for me! (and him – for the past 4-5 nights now) Actually, said husband we were just speaking of was conveniently out a lot – 3 nights to be exact lol!! So he has been not quite as popular as the previous paragraph mentioned hahaha! Nah, he was all good going out but it gets pretty tough during the night when sleep deprived with a sick baby! In saying that, Beau only wants me anyways so – it is what it is!

With sickness and temps come ketones as you know from my last post, so since our amazing clinic on Friday, we have been worried and it’s just really tough to tackle – sick babies plus diabetes. Seeing ketones is such a fucking worry and although this bout of sickness has only been the second time I’ve tested for ketones and Beau has had them, I still freak out majorly and can’t remember what to do!!!!! Diabetes complicates the simplest of sicknesses and it is my life goal to prevent us from going to hospital!! This time, the highest I saw Beau get to was 1.5. Pretty high but we managed them somehow and the next time I tested him, they were 0.9 phew!

Beau was at the Drs last night and has got another ear infection. The grommet in that ear is no longer working, maybe not even there! So the Dr said – next ear infection we will look at getting more grommets. Which scares me as last time Beau had the surgery was 18 months ago, he was 18 months old and a normal healthy boy! Anyways – I am trying not to get worked up about it yet!!!!

In other exciting roller coaster news, 8 days ago my baby turned 3!!!!!!!!! He had such a fun party at the Discovery Room in the museum and then in the cafe after with his bestest friends! All he wanted for his birthday was a ‘Blaze’ (and the monster machines ) cake and blue and green balloons. So those, he did get!! It was super fun and I loved seeing the joy on his face when he saw the balloons, and then his cake!!! His cake was egg free (as he’s allergic!) but unfortunately the amazing shop was unable to make it ‘diabetes free’ lol BUT in saying that he had juice, hot chips, cheerios and wee pizzas plus the cake and he did not go high all day!!! All party day, and then again on his actual birthday the next day! As these are the amazing life days where keeping him in range doesn’t matter as much – you try your best, but you have remember your amazing Type 1 son, is also a normal 3 year old boy!

Beau is literally the light of our lives, as his is big brother. Sometimes man, they drive me to drink – the fighting, OMGOSH the fighting!!!!

Other times – MOST of the time, they make me realise I’m living my dream with my husband and these two stunning boys who are teaching me things every day and teaching each other things and learning from anything they can and all I have ever wanted for my family is to be safe, healthy and happy.

So a recap of the rollercoaster – baby Beau is 3, he has a bad ear infection, his HbA1c is amazing, we are muddling on in this busy thing called life and I AM TRYING MY BEST to be a half decent working mum, but sometimes I do need a minute. I love writing this, it’s giving me a minute. I love having my nails done, that gives me joy. I love coffee, cos – life.  I also love wine, cos – life! lol I love hanging out with my friends, this is something I need to find more time for – friends – if you’re reading this – know that I love you and I miss you and I hope we can catch up one day soon! I am trying to improve some aspects of my life, I am working hard to be more positive, kind to myself and use my time better. They are my first steps – I haven’t got too far as since I made these plans Beau has been sick and that takes over every aspect of life! As it should!!!

Anywho, bed time for me now – I’ve had the day at home with Beau today, KW was yesterday, Nana is tomorrow! Back to work for me – Cooper and I have a Matariki day at school with a shared lunch tomorrow, so I’m looking forward to spending time with him too!

P.S. I promise I won’t just write a blog every time Beau gets sick, I have been due one for a while and meaning to give an update. It’s just a coincidence!

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Loving the birthday celebrations! Gorgeous boys!

 

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Beau pretty chuffed with his HbA1c!

Life.

It’s now been 169 days since my beautiful baby boy Beau was diagnosed with Type 1 Diabetes.

It feels like it was so recent in some ways, kinda like we took home a newborn and didn’t know what we were doing, and now – we still don’t! It’s still up and down and things change and it’s all random and hard to explain.

People are interesting. Don’t we know it haha! I mean, really interesting. Everyone has their own worlds going on, half (or more!) of which, many people know very little about.

It’s so important to be kind and patient to all others, cos I bet many people are going through something a bit rubbish at the moment, or have been recently or need a compliment or pick-me-up or something!

It’s crazy for me now to TRY to remember life ‘pre-diabetes.’ What did I know about it? How much did I know? Unfortunately it’s too hard for me to remember, but I do know it wasn’t much. I knew Type 1 and Type 2 were different and that Type 2 is more of a lifestyle thing…

I’m getting blown away by some people’s comments. Like that they know someone that was ‘born with diabetes.’ This is not what happens, or might but it’s VERY rare, I take this personally like perhaps this person thinks that we fed Beau too much sugar and that’s how he got diabetes. And I 100% know that I shouldn’t. I know. I know, I know I know. And as I said, I wish I could remember what I knew before…

Type 1 diabetes is either genetic through family members having the condition, or an auto immune condition – which is how Beau got it.  His own immune system destroyed the insulin creating cells in his pancreas.

Cool.

Someone else thought that ‘the stuff I went through last year’ was over and that we were done with it. (Ha! I wish!)

I dunno. I really have had an urge to write, maybe just to moan. I don’t really have many people to talk to (or much time to talk!!) about this who understand.

Even if no one reads this I love writing and venting and typing and thinking and feeling and allowing myself to think more deeply about what is going on for us, Beau… me…

Last weekend Cooper got Strep Throat and had an ear infection. He was really quite sick for a few days. Then, on Wednesday Beau woke up roasting hot with a temp! Argh!

KW had the great idea to test him for Ketones.

1 – What are ketones?

Ketones are chemicals that build up when your body starts to burn fat for energy. The most common cause of ketones in diabetics is insulin deficiency. Without enough insulin, glucose builds up in the blood stream and can’t enter cells. The cells then burn fat instead of glucose. This results in ketones forming in the blood and eventually spilling into urine.

2 – Why can ketones be dangerous?

Having ketones can indicate that your body needs more insulin. (Always monitor your blood sugar levels to know how much insulin you need.) If you have a build up of ketones, this can lead to Diabetic Ketoacidosis (DKA). Signs of DKA include moderate or large ketones, nausea, vomiting, abdominal pain, fruity or acetone (think nail polish remover) breath, rapid breathing, flushed skin, and lack of energy. If left untreated, it can lead to a serious and life-threatening diabetic coma or death. High levels of ketones are toxic to the body and if you’re experiencing these, you should seek out medical attention.

 

I just copied and pasted that info, as I am not very familiar with ketones and find it hard to remember what they are. All I know and remember from being in hospital was that they are bad. We are lucky, when Beau was diagnosed, he was well, so wasn’t in DKA. Thank goodness! Many children are diagnosed with this and are in a coma and spend time in ICU or HDU in hospital!

When we were in hospital Beau didn’t have very high ketones, they were 0.4 and 0.8 at another time.

I have told the diabetes team that when we had ketones I would freak out.

Anyway, so Wednesday morning Beau was very sick, KW tested him for ketones and they were 1.4! Scary, the highest his have ever been. I did freak out! He wasn’t hungry – but we had to give him insulin so that the ketones would drop. But if we give insulin, and no food, won’t he go low?!

He was only slightly high with his BGLs (Blood Glucose Levels) so I put that number into his pump and it calculated the correction of insulin to bring him down to his desired BGL of 4.5-5.5.

An hour later I tested the ketones again and they were down to 0.3 yay! It worked!

So anyways, to the Drs we go. He has Strep Throat too, and a DOUBLE ear infection. No wonder my poor babe is so unwell.

Remember how I DO NOT COPE with sick kids, I get so stressed out and worried and can’t focus on anything. Well, add diabetes to the mix and it’s a million times worse! Obviously! But not only do I have to worry about the sickness but also what his BGLs are doing, plus ketones, plus him not eating/eating and working out how much insulin to give him to keep him at a good level!

FUUUUUUUCCCCCKKKKKKKKK.

Well, let me tell you – I’m exhausted! Beau was really unwell Wednesday and Thursday (he had ketones again in the morning!! But the same thing fixed them quickly again – phew!) and had picked up a good amount on Friday.

Sometimes the hugeness of this whole thing is overwhelming and exhausting and I wonder how we will get through it. I think Beau has been incredible and his age has really helped, his courage and strength and amazingness is so overwhelming I could cry!!! And then I see some parents on the Facebook Type 1 Parent pages having some really tough times with older kids/teenagers and wow, that shit is scary!!!! So I know I am lucky at the moment. And he is fine, happy, and reasonably healthy.

But sometimes my heart thuds and I get scared that he has this so young and he could die, or he could lose his eyesight, or lose a limb, or develop kidney problems or any other of the side effects of this stupid, unforgiving, relentless disease.

I am not used to it yet.

I don’t have it sorted.

I am still learning.

I am still failing.

I am still winning (sometimes.)

Things have crept in to our lives to become ‘normal.’

But it’s not.

We parented healthy kids for 5.5 years before this shitty disease chose our baby.

And gosh.

I KNOW it could be SO MUCH worse.

I am grateful.

I am sad.

I am fucking exhausted.

I miss my space.

I miss how easy it was going out for a date night with my husband.

I miss our needle/pump/insulin/alcohol wipe/reservoir/libre/miaomiao/scanner free life.

Mostly though, I love.

I love my gorgeous baby Beau.

I love his cute big brother Cooper.

And I love their handsome Daddy, my partner in crime.

And I will do ANYTHING for my babies to be happy, healthy and safe.

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This was last Tuesday just before Beau woke up sick on the Wednesday – they had PJ day at preschool with a shared breakfast! He was so excited about it  for weeks and obviously loving life!!

We are on the pump!

It’s been over a month since my last post! This year has already been going super fast and getting back into work added onto the pressures of T1 plus a new pump – wow I haven’t even caught my breath since diagnosis 4.5 months ago!!!!

Our ‘Pump Start’ days were great, in the building opposite the hospital. Extremely full on, well they were all good and we coped really well but the learning made me super exhausted! The pump rep and diabetes nurse were great, and at times we had other visitors from the team over at the hospital too. Plus Mum and Beau twice…

Beau came in on the first morning and we hooked the pump on him, March 12th at about 10.30am and we haven’t looked back! He was used to it pretty much straight away and copes so well with such a large ‘extra’ permanently attached to his tiny wee body!

That’s what I find hard. The fact that now he has the Libre sensor in his arm, with the Miao Miao device attached to it, and the needle in his upper bum with the tubes attached to the pump, which sits in a wee belt thingy. So many attachments on my little baby’s body! I find that heartbreaking, in fact at the moment it’s what gets to me the most often.

So at the end of Pump Start week, we were due for our first ever ‘Site change’ where we have to fill a new reservoir with insulin, put it in the pump and pre-fill the tubing and then insert the new needle in his bottom. This has to happen every 3 days, and it has to be successful before you take the other site out.

Well, of course this was the day of the horrific terrorist attacks in Christchurch! I didn’t know what was going on that day and I had Beau asleep in the car so we drove over to wait at school to get Cooper a bit earlier than usual. Then on the way I found out, just that there had been a shooting, nothing like what eventually unfolded!! But there was nothing I could do as I didn’t know how long the school would be in lockdown for, and we live on the other side of town so I felt I had no choice but to wait there. Outside school. My school, my home away from home where my son was. I knew Cooper was super safe and being well looked after and Beau and I had some great company in some other Mum friends I have from school but I was getting a bit concerned about what supplies I had, as I had just packed our new Diabetes Kit!

I had the stuff I needed, apart from an alcohol wipe!!! (Which is fundamental for the needle insertion!!!!) I had a few snacks and water bottle and low treatments if needed. Luckily one of my friends had a wipe in her survival kit so that was that stress slightly relieved. Thankfully we got home at around 7pm after work meeting etc and we were able to sort it out cleanly at home!

It’s these horrific events where you are stuck and it is crazy out of the ordinary that we need to be extra prepared for always now.

Beau is coping really well and the pump is amazing. Sometimes he feels a bit of pain in the needle part on his wee bum. He is as ‘teched up’ as he pretty much can be at the moment, so we are lucky. He is lucky. The amazing thing about Beau’s pump, is that it gives such tiny doses of insulin which is perfect for his needs right now.

We have had our fair share of sickness around here lately, and a few weeks ago, Beau was particularly unwell with a cold. Randomly, he started needing next to no insulin. When we ‘bolused’ (got the pump to give him insulin to counteract the carbs he was eating) him, he would go low. So we stopped bolusing him, and reduced the ongoing amount that constantly feeds through the tube to him by 30% For a week! It was literally like he was non-diabetic! It was amazing, but also very unsettling as we had just been getting our head around it all and then the pump, and now this.

The team said it has been known to happen before but it wasn’t common, and they did try to tell me that he did still have Diabetes, even though I kept saying he was cured!

Over a week later, Beau had diabetes again. Obviously he always had it, but it returned to ‘his normal’ diabetes. No real rhyme or reason, just maybe that the cold virus meant that his body wasn’t able to absorb carbs that week. I was worried about him so much that week and what was going on, I wish I had just been able to enjoy it. By the time I had begun to, he was back to needing more insulin again.

Anyways, I feel like this post has just been a whole lot of gobblygook being randomly put down, and if it makes no sense to you – that’s ok. I have missed writing, and am enjoying typing as fast as my wee fingers will go! Nice to have a break from school, so my brain has allowed enough time and thoughts to write something again.

Since Beau had his ‘non-diabetic’ 10 days ish, he has been getting rather high at night, with his BGLs (Blood Glucose Levels) and I just know that his hbA1c is not going to be as good at our next clinic appointment. It’s hard not to feel disappointed about this, as we had such an amazing result the time before last. Last time, it had jumped up slightly, but still in a really good place…. Eeeek it’s like failing a test… I’m not good with that stuff. You guys know how hard I am on myself already. Every time Beau’s levels aren’t within 4-8 I blame myself!

Another great thing lately, is that since he is on a pump, KW doesn’t have to go to preschool anymore to give him insulin at lunch time. There are 3 amazing teachers there who are trained to bolus him for his morning tea, lunch and afternoon tea! Every single thing with any carbs that Beau eats now, we have to bolus him on the pump for. Whereas before when he was getting the injections, he would get an injection just before breakfast, lunch and 2 before dinner (plus extras if he was high.)

One thing that has been slightly annoying is that with the site being on the bum, if Beau has a larger poo, it can get on the site, which requires a full set change. So this week, Beau had his site changed on Tuesday evening. On Wednesday Beau ripped the needle out accidentally after his bath, scratching his palm somehow on the needle, so needed a new one. Then on Thursday, had a poo explosion at preschool so needed a third site change in 3 days!!!! Poor baby, they are a wee bit painful for him, more so removing the old one.

So, that’s us. Busy. Tired. Thankful. Carb counting. Bolusing. Loving our wee man.

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Beau with his pump belt on showing a bit of his site and also his Libre sensor and Miao Miao attached on his arm xxx

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And these, because these are just some of the exquisite faces of my beautiful blue eyed boy <3

Hiccups.

That’s what we have, in life. Hiccups.

It serves me right for celebrating the wins the other week! Fuck it.

Everything is fine. Beau is fine, we are all fine.

But something has changed, and I am thinking we just may be getting out of the ‘honeymoon stage’ and now we are getting a feel for what ‘real diabetes’ is…

Over the past 2 weeks, Beau has had a wee cold, runny nose, cough etc. Some days he has been running (not sure why we say running, but none the less, running) quite a bit higher than usual.

I haven’t really acted on it. One day at work I thought I might need to get him from preschool but it was fine. Although, he didn’t eat a lot as we were worried he was high and they aren’t giving him insulin so it’s hard to give him a correction (an extra injection of insulin) when he gets high…

So anyways, Saturday night, Beau was HIGH.

We had a lovely busy day! KW is unwell so I had the boys in the afternoon and we were meeting friends at the park for fish and chips. These friends also made delicious cup cakes for our picnic, so I had thought he might go higher.

I gave him 1.5 units before dinner. Usually we only give him 0.5 for dinner.

He had his hot dog, and although I was distracted I didn’t notice him eating lots of chips. He ate the icing off the cupcake though, which I guess, was a huge mistake. Even though I really don’t want him to miss out on things like that, and he barely has anything like that.

Anyways, then the kids played at the park and burnt off energy. We got home and his BGL’s came crashing down. So, I had to feed him up! With milk and a decent amount of a hot cross bun.

Well, THAT was stupid. He was high.. All night, well till 4am. From 8.30-1am I gave him 3 corrections (insulin injections)

NONE of the fuckers worked.

UGH.

So I booked a reliever for Monday. And I booked a Drs appointment for a general check up. As when diabetics are sick, they can run higher. And I called the Diabetes team to ask them for any answers and to see what their advice was… where to from here etc….

Well…

Beau is great, he passed the GP check up with flying colours.

The diabetes team call went for 20 long minutes, and… it turns out… it was my fault! Fuck.

So, he’s fine but on Saturday night when I gave him the hot cross bun as he was coming back down low after the insulin, that had too many carbs that kept him high all night, even with the 3 correction injections.

It just sucks because that’s fine, but on Monday Beau needed 3 insulin corrections too. That is 7 altogether for the day. 7 injections can you imagine that?!

But why? There was nothing out of the ordinary we did, or different food he had.

So, I get that I fucked up. And I am hard enough on myself for it thank you very much, but why all these other highs?! They don’t have a rhyme or reason.

Also, apparently we are still in the ‘honeymoon phase’ because Beau’s BGLs remain relatively steady overnight.

Anyways, I’m wiped out and have 42 five and six year old children to teach tomorrow, plus my own 2 to get sorted, plus to pack and plan for going away. Eshk!

So NOW the NEXT blog will be after Pump Start which is in 6 and 7 sleeps!

 

 

Good news!

I haven’t blogged in a while, for a few reasons. Not much has been happening/changing so not much to report and also I’m back at work 0.8 (4 days a week) so not a lot of spare time!

Beau is amazing, as per! Like, incredibly amazing!

We had clinic a week ago and the FANTASTIC AMAZING news is that Beau’s HbA1c number is in the normal range! Normal! Like whaaaaaaatttt?!

The team said it was because we are working so hard and doing such a great job managing his numbers. I also think it’s because he’s ‘honeymooning’.

It was such exciting news, and really gave us such pride in our boy and in our journey and knowing that all the stress and hard work is seeing progress!!! I am trying to celebrate the successes now as I know only too soon we will be getting not such flash reports as Beau stops making his own insulin! So yay!

Also at this clinic, we received our Pump Start date! Eeeeeeee!!!!! In less than a month we will be spending 2 days at the hospital getting Beau set up on his pump! Wow, things are moving so quickly and we are so happy with this news! It’s super exciting!

While there, KW and I had to put in our own pump sites that Beau will have inserted into the top of his bum. We put ours in our tummies. It didn’t hurt! And, incredibly these only need to be changed every 3 days! Which is SO much better than the 4 insulin injections a day that Beau currently gets.

I’m nervous, and excited about these new changes to our lives. I’m slightly worried about the big pump that will be attached to Beau and how huge it seems next to his tiny body! The pump rep came to visit us on Wednesday evening and she did say he will ‘grow into’ the pump. He’s just so wee!

More exciting news was that since Beau was diagnosed on 3rd December 2018, he has now put on 1.85kg and grown 2cm in height! Yeah buddy!

In general life news, Cooper is coping much better now he is back at school and in routine, which is awesome!

I am… getting used to my new normal! Having 8 weeks at home to deal with it all was such a lucky thing and perfect for me who worries so much anyway. The communication we have with preschool is outstanding and during the day his teacher is in contact with me a few times, with wee messages on how he’s going and what he’s up to etc, which is such an extra treat!!!!!! Sooooooo lucky!

I am so happy I’m able to trust people and with the app on my phone so I can see what Beau’s BGL is doing in real time while I’m at work is incredible!!!!!

It’s good for me to get back into work, and I love it – but I do miss my wee man. He just loves preschool though and every night at ‘Best Bits’ at the dinner table he says ‘going to preschool!’ Such a honey!

We had an appointment with the ENT specialist who put in Beau’s grommets in Dec 2017 (and took Cooper’s tonsils and adenoids out earlier that year!) and they are still in his ears which is a win!!! So one less thing we need to worry about. They would like another follow up in 6 months so hopefully we can stay on top of this part of Beau’s health too.

We are off to a wedding in the north island in 13 days. SOOOOO looking forward to a weekend away with hubby, quality childfree time!!! Eeeeeepppp!!!!! And of course our friends lovely wedding!!! But also so nervous not to see my babies in 3 whole days! Hopefully they will be fine with Nana!

My next blog will be after that I would imagine, as when we get home, it’s pump time!!!!!!!!!!!!!!! Wish us luck!

P.S. Look at him!!!! All the heart eyes

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