20 months in

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.

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❤️

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

Covid 19 and Diabetes

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.

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Master Beau – pretty happy with his Easter haul!

Just some rambles – 15 months on

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!

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

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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!!