Month: August 2021

(Note, in this picture  I have put up with this post, it shows me bolusing Beau on his pump during our family photo shoot in June. I love that there is a non-invasive cool picture of a true snapshot into our lives!!)

You know how there are certain sounds you hear regularly throughout your life,  just like certain smells, or tastes that evoke feelings?

Recently, I’ve been really noticing all of the sounds related to Beau’s diabetes and I’ve been itching to write them down.

It all started one night, when through the (new house, thin walls) I heard the POP of the testing strip container’s lid coming into our bedroom while KW was in the boy’s room obviously going to fingerprick Beau in the middle of the night. That pop woke me up.

(Now, please forgive me, I am not sure how this blog is going to end up, I am NOT a writer and onomatopoeia is not my strong point!!!!)

As well as the pop of the lid, there’s the beep when the strip is loaded in the reader.

Then there’s the push down of the finger pricker.

Followed by the click of the needle of the pricker being shot out fast and into Beau’s skin.

Then the beep beep beep of his BGL reading being shown on the reader screen.

All of these sounds are made anytime of the day or night…

There is the alarm on Beau’s follower phone alerting us to his low or high BGLs.

Then, there’s the alarm on Kodie’s phone (with a different sound) alerting him to Beau’s low or high BGLs.

Then there’s the alerting music on my Nightscout app if I leave it open if Beau is low or high.

There’s the opening of the fridge to get out the juice box.

The ripping of the plastic straw packet off.

The push-through of the sharp end of the straw into the juice box.

The sleep-slurping of juice.

The sound of juice gurgling down into Beau’s tummy at whatever hour of the morning.

The rip open of a foil ketone strip packet.

The pump beeping when it is site change reminder time.

The rewinding sound of the pump.

The sound of insulin filling the tubing.

The beeping at each step of the way when setting up the pump every 3 days.

The tearing of the alcohol wipe packet.

The characters in chosen cartoons used as a distraction.

Sometimes, I can even hear the insertion of the needle.

The button pressing of a bolus, multiple times to get the steps completed before insulin enters the tubing.

You know what I mean? So many sounds. So many steps.

I’ll also just put a wee update here at the bottom.

I’m currently feeling quite uneasy as we are in Level 4 here in NZ and soon to go to Level 3 (next week hopefully) – I am much more scared of this Delta variant, for all of us in NZ but for Beau.

So, while I am loving us all being safe at home together, and Cooper and Beau are both LOVING it living their best lives at home with us here. There are a lot of other things to consider…

Cooper’s appointment has now been missed so will have to be caught up so we can get a treatment programme underway for him with the psychologist.

I am all up in the air about what is going to happen with Beau starting school. So all going normally (as in no Covid/lockdown etc) he would be having his last 2 weeks of preschool next week and the week after before starting school. Today, the whole staff at his school would have had a teacher only day and had the training from the Diabetes team and pump rep. Of course that didn’t happen.

So… Level 3 next week… when will Level 2 be?

Does that mean there is just no more preschool? Like, ever again???

Does that mean his school won’t be trained in time for him to start but there also won’t be his space available at preschool?

I have organised a few days off (for when he starts school) and KW works mostly from home, so maybe he could start and we will just need to be there taking turns with his care until the staff get the training?

But then will my class be starting back at that time and need me?

But I will always put Beau first so I’ll need to be with him?

But WHEN WILL THIS BE?! lol

Ok, so that is all my huge brain dump. You’re welcome.

Stay safe whānau xx

We added more to this after this pic, but Beau was LOVING it – how cute is he?!

He is a maths brain and I tested him on his alphabet knowledge with magnetic letters, which he then quickly sorted into colours. I just loved the photo of him!

Cool dude walking RockyPups in lockdown.

Hello again, it’s been a couple of months now. Things have been full on.. and not in a good way. Look, this is a heavy blog and I’m not going to go into all the detail but it’s a snapshot of life right now for us.

Since last time, Beau has had his bloods taken and they have all come back clear yay! His HbA1c has also not really changed, just up ever so slightly which was so much more amazing than what we were expecting – double yay!

We changed quite a few of Beau’s ratios at clinic and he has mostly been a lot better, although at preschool they are having trouble as while there he seems to be hovering on the lower side… so I might need to change the basal rate while he’s there, as apparently ‘He plays hard!’ lol – that’s my boy!

We are getting closer to his school start date, 34 days in fact!!!!

I was ok about it, but no longer am I! I know they will be ok – it’s just so hard to trust a whole lot of new people with my baby’s life!

Preschool manage it all soooo well that I barely check Beau’s levels on my phone now, I just have my phone on me, with sound on, so I can answer calls/messages with questions or concerns. Which still happens regularly and I even had 2 calls today with something come up on the pump that we have never seen or had to deal with before!!!! Lucky I could talk his amazing teacher through it and didn’t have to go and get him! (which also would have been fine!)

I am so lucky to have a supportive work place that knows that if I need to go, I’m gone etc. I’m very much a family first person, as I would hope most people are. I am very privileged to work somewhere that shares the same values as me.

So, we have got the teacher aide hours allowed for Beau’s care – 15 hours a week, so 3 hours a day. It doesn’t feel like much, but apparently that is the maximum children can get for High Health Needs Funding!

My fave Diabetes nurse and pump rep are going to school later this month to train the staff on the basics of Diabetes. So huge. It is overwhelming…..

Also overwhelming, life…

Things have been really hard these past couple of months for us all, our big boy has developed pretty severe anxiety, seemingly out of nowhere. First appearing as physical symptoms, then after blood tests, stool samples etc and waiting and talking more, it turns out it was the mental symptoms causing the physical ones.

It has been awful to experience as a parent – the meltdowns,  the anger, the feelings, the words and threats, the ‘wishes’, the sadness, the tears, the fights, the avoidance, the excuses, the screaming, the physical symptoms, the sheer helplessness of us, but also him. At his wits end, at our wits end.

There have been some dire and dark moments and my heart has been broken. There has been lots of school missed, many different opportunities not taken, rugby trainings and games missed and, well, life has really been at a standstill.

I think we might just, maybe, almost be getting somewhere, making some gains after a lot of work from our wee Team Wixon and some incredible advice from some of my nearest and dearest.

As one of my friends said today ‘You are out of crisis mode and now in survival mode’ as in – things have improved, but they aren’t sorted.

Now KW and I don’t have to stay in class until 9.20am if we drop him, we can leave before the bell. I was able to parent help on his school trip yesterday, which meant he went! He has played two (awesome!!!!) games of rugby in a row! He made 4 days of school last week! And 2 out of 2 so far this week!

His school have been next level amazing! I feel so lucky to be there and know that Coops is in such good hands, and that gives me hope that Beau will be too when he starts.

We have our first psychologist appointment tomorrow so I am looking forward to moving forward and getting our boy the help and strategies he (and we) need to get through this tricky time.

I’m sure this is possibly more common that I (or people) realise but even I (an anxiety/depression sufferer, and a teacher of some quite high needs children over the past 14 years) am surprised about how debilitating it’s been, for my big boy and also our whānau.

We have started a new thing at dinner, we used to share our ‘best bits’ of the day, but now we go round and share what we are grateful for. Tonight, everyone (including Nana) had quite a lot to share and say. That makes my heart smile.

I’m grateful for my amazing husband.

I’m grateful for my whānau.

I’m grateful for wise friends.

I’m grateful for a supportive workplace.

I’m grateful for having pets to snuggle.

I’m grateful for chocolate.

I’m grateful for the magical potion that is coffee.

I’m grateful for my beautiful babies.

Look at them!!!!!

My Team Wixon ❤️