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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Our ‘New Normal’

We are almost at 8 weeks post diagnosis. We have been pretty good, cruising along reasonably well with super kind words from the Diabetes team about what an outstanding job we are doing, keeping Beau’s levels in range as much as we can, and how they wish more people were like us! Nothing like a good compliment to keep you going!

A couple of weeks ago I caught up with a few different friends, all asking how we were getting on. I answered much like above ‘Yeah, good we are just finding our new normal, cruising along.’

We aren’t having many highs and the lows (especially the overnight lows) are much less frequent at the moment.

Preschool has been outstanding and I am in regular contact with them all through the day so they are managing it amazingly well too.

Nothing to really report.

Apart from the relentlessness of it.

Diabetes doesn’t rest.

Sometimes, it just dawns on me that my son is going to deal with this…disease… condition…. thing, for the rest of his life and HE’S ONLY TWO!!!!!!

And not only that, but as a working Mum of two boys (teaching!!), a fur Mama to a puppy, a cat and a wife to one amazing hubby, life is busy enough, and complicated enough, without dealing with this on top of it. I am not complaining, well, actually, I guess I am. But I don’t mean to. It could be worse. It could be cancer. Or something that meant he could die. Beau is going to live a long, healthy and happy life. So we are lucky. But still. It is a lot. Especially for Beau (obviously!) This is about him and his poor wee body. It works so hard, and it just seems like it’s not his own anymore. With the scanner attached, and the Miao Miao attached to that. The injections 4x a day, plus finger pricks etc. That breaks my heart a wee bit. But he is used to it now. Surprisingly. He got used to it all so quickly and super well.

I think now, 7 weeks in, I feel upset when I realise that this is our lives now. I’m tired. The boy’s behaviour has been a bit ‘up the wop’ and it has been a long school holiday period.

So this week, I called in reinforcements (my Mum!) and had a whole day to me while she looked after the boys. She had given Beau a couple of jabs previously but not without us there. So it was good for her to practice while we weren’t there.

I loved my day so much. So. Much!

I got my hair and nails done, had two coffees and got some groceries for tea. All by myself! Yuuuusssssssss.

Of course, the kids didn’t miss me at all and I felt so refreshed and able to deal with it all!

Beau has just been such a superstar. The other day I was mentioning it to some of his preschool teachers and felt myself get quite emotional. This little guy who was a grazer, and allowed any food he pretty much wanted at any time!!!! Has gone to being limited with his food choices and times of eating. (Actually, this is probably a positive thing!) but on top of this, the injections, scans, finger pricks etc, low treatments/feelings. He is so incredible and takes everything in it’s stride and doesn’t complain, or cry or moan or fight back or anything!

Now I know, he is in the ‘honeymoon phase’ with his own insulin production and I know he is young so we are lucky to have control over his diet etc so I will take these wins, as I know as he grows things are going to get more and more complex!

A new change we have is a Miao Miao device which means we can see his readings in real time when we aren’t with him! We both have apps on our phones and can see not only his BGLs but also what direction they are headed in!! It even says things like ‘A low is predicted in 21 minutes!’ ARGH! Amazing! We love it! Beau just has a ‘mother phone’ around him at all times. Preschool have jumped on board so happily and have even got a wee ‘Asian bag’ from the dress ups to put it in for the teachers around Beau to wear and have the phone around him! lol the kids are most upset the teachers are now ‘playing with’ their bag! I just love how Beau’s teachers have been so incredible to him and us, seriously, I don’t know how I could even THINK about returning to work if I wasn’t so happy and comfortable with the amazing care they provide for him. So lucky!!!!!

When  we first started with this Miao Miao, it was even more frustrating as it had a different BGL reading than BOTH the Libre scanner and the finger pricks. So then we had to get used to figuring out what to do with 3 DIFFERENT READINGS!

It’s ok. We got over that frustration and now we can’t live without the Miao Miao and apps!

So with this all in mind, and continuing to keep on keeping on, KW and I need to work to find some of our own time for breaks and also breaks together.

We have access to ‘Carer Support’ which provides us with 28 ‘respite’ days a year. We can pay someone (of our choice) a small amount of money to look after Beau (and Cooper) so that KW and I can have a break! How amazing! Unfortunately, my Mum is really unable to help us with this as she works in the weekends. So our job is to find someone we know and are comfortable with, to train them up so they can look after the kids so we can escape and have a wee small break every now and again! If any of you are keen, flick me a message k! Thanks :)

I am back to work next week! Eeeeeeekkkkk. All kinds of feelings around this. Mostly excited at the moment, but also nervous. Also proud of myself. And cracking up laughing, as Cooper is going to be in my class!! hahahaha. Well, there are 2 of us teachers with 42 kids and he is one of the lucky ones! Watch this space!

Off to try and carb count Beau’s first feed of fish and chips since diagnosis! Happy Friday peeps. Might even sneak a cheeky wine or 2 in tonight!

6 weeks in!

Well, I do apologise for my last post. It was a tad ‘Woe is me’ and that’s not really where I’m going with this blog. In saying that, this blog is like therapy to me and it REALLY helps when I write so… thanks! And, sorry!

Beau (and me) are much better than last week! We have just had our diabetes clinic this morning, and his ear infection is cleared up and his heart murmur is an ‘innocent’ one that can not be heard when Beau changes his position. So I’m not really sure what that means, but he’s fine and nothing to worry about – YAY!

So I mentioned we had our clinic appointment this morning and Beau’s Endocrinologist reads this blog! Eeeeeek suddenly I feel under pressure and also mindful of all of my swear words! lol Even though this is a public blog, and I share it publicly on my Facebook I still just imagined that only my friends and family would read it – so hi everyone!
This blog wasn’t even my idea, although I’d love to claim it! My bestie was researching T1D when we were in hospital and commented how there wasn’t anything like this easily found, so here I am! And although I am grateful to her for so many other things, I am grateful for this. My own (free!) therapy! Also, a good way to educate others as much as I can about what this diagnosis means for Beau and our family.

We have been working super hard (like ANY T1 parents do!!) to keep Beau’s BGLs in the normal range of 4-8. It is a 24/7 job as even when we aren’t with him we are always wondering what they are etc. The fantastic news this clinic was that his HbA1c level has improved! So this is the end goal really, to work hard every minute/hour/day etc on getting the BGLs in range and this contributes to the HbA1c level hopefully showing movement down at each clinic. It’s kinda like the average of the past 8-12 weeks. Obviously, as I have mentioned here before ours isn’t the hugest deal to us at the moment as we are only 6 weeks in. PLUS we are also in the ‘Honeymoon period’ where we are so lucky that Beau is still producing some of his own insulin. Therefore, he needs less injected (only around 5 units for 24 hours is pretty awesome!) and his highs aren’t ridiculously high and he has been keeping his lows overnight pretty steady.

So while I celebrate our improved HbA1c number, I know that some of it is because of our hard work, some of it is because we got onto the Diabetes early and some of it is because my wee boy’s body is still working hard and doing some things by itself! A mammoth team effort.

Gosh, I’m dreading the honeymoon phase ending!!!!

We have had a small hiccup with the medical advice recently, and I really am not wanting to offend anyone who may be reading this (hi guys!) as we have been blown away by the care and support from all of the medical professionals we have worked with on our T1D journey, and trust and respect them all immensely.  We were told this week by one of the team not to treat Beau’s overnight lows, because they could see on the data that gets uploaded to them that he had had a low overnight, I had treated it, so his levels went up, but then straight back down again and continued in a straight (low) line (under 3.4) so this is making his body working harder to bring the levels back down. Cue – Mum Guilt! I’ve been making his body work even HARDER! What!

So then we went from checking him 3 or more times a night, to just checking him when I was awake. Feeling terrible about not treating a low. But that’s what they said. We had just ordered a $300 MiaoMiao device too, to attach to Beau’s CGM disc so it would alarm us if he got down to 3.4 or below. Did we waste our money? (Hope not!!!!! It’s yet to arrive!)

We were still to treat him if he woke in the night with a low, but just not wake him. This was supposed to help us get more rest, look after ourselves and Beau and relax a little bit. I didn’t love the advice and did question it, but was assured it was the right thing to do. I also lay awake during the night googling lows and when it was dangerous etc.

So today I asked the endo who respectfully disagreed with that advice and gave us another tip to manage the night treatments better, wake Beau but just give one longer lasting carby snack, rather than a sugar treatment first (which is what we do the rest of the time, followed by a carby snack). This should hopefully result in not a spike in BGLs but lift the line of his constant low level to be a (hopefully!) constant ‘normal’ level. Kinda hard to explain now that I’m writing it, but some of you may get me!

I am ok with both sets of advice because I know that they work so hard with families and kids with T1D and they are the experts! We are just brand new players to this game! This is all trial and error really so we will try the endo’s advice now and see how that goes!

Anywho, what else is new?

Beau has been staying longer at preschool which he is LOVING! They have just been so amazing! The texts and photos I get help so much! He even went on a wee trip (walked half a block) to the local school playground for a play yesterday! All good, and easily managed with an extra snack box and his Diabetes kit!

I wish you could all really see what an incredible boy my Beau is. He just takes it all in his stride, still being crazy cute, cheeky, sweet, quiet, loud, movey, chatty and completely adorable! Beau Richie really is turning out to be an amazing role model for me. Completely rocking it, barely even pausing to think about it, let alone worry about what’s going on and how his life is different now. An actual superstar.

Cooper announced to me this afternoon, “I wish I had diabetes.’

I was like WTF!!!!

“Uumm, do you mate? Really? How come?”

“Because Beau gets lots of treats.”

“He actually doesn’t my darling, the little bits of sugar we give him are because he is feeling really sick and they help his levels rise and you get ACTUAL treats that Beau can’t have!”

ARGH! 5 year olds! It must be so confusing for him.

Coops always gives us ‘finger pricks’ with pens (like biros – not insulin pens lol!) lying around. We have had some pretty tough times with him lately, but hopefully we can continue to spend the time he needs with him and help him to feel secure. He is also very lucky and has had great experiences, presents, toys, treats, food etc these holidays!! Cooper is just the best big brother and cares so much for Beau (and us!) and notices a lot about what’s going on! My Coops will always make Beau laugh if he is upset or not wanting to have his jab etc. (although now they have started to fight over who puts the lid back on the insulin pens!!! It’s Beau cos that’s just what he does as he is the one who gets the injections!!! But now Cooper wants a turn and Beau doesn’t want to give up his turn! lol!)

Also, I’ve been thinking. I really think that Type 1 Diabetes and Type 2 Diabetes should just have completely different names lol I know they are the ‘same’ but they are not and it would save a lot of confusion for people knowing that Beau can’t help this, it wasn’t our fault, his diet had nothing to do with it! Also that now he needs sugar, he needs carbs, he is rocking it and we are proud! Ok!?!?!?

Another kinda off topic thingy, it was mine and KW’s 7th wedding anniversary this week. My mum came in and watched the boys so we could go out for dinner! It was amazing! Much of our talk was around T1D as that is the biggest part of our lives right now. Hopefully one day it will just be another part of our lives but for now, it is the most important.

A couple of people have asked me recently about our relationship since the added stress of a chronic lifelong disease/health condition/whatever it is, and for once I can say that it has brought us closer. We are a pretty amazing team, (I’m so grateful for this!) and while having children threw its challenges on our marriage, we love each other and our family so much and would do anything for each other. With Beau’s diagnosis, we are a complete partnership, and I feel so blessed that we can and will tackle it together. In saying that, I know that it is early days, I know what sleep deprivation can do, but I also know we got this.

Till next time! x

Ugh.

Well, we are here. I am breaking. Lots of people have commented on how well we have been handling this, and how well I have been coping.

Not anymore.

I have tried and tried and been flexible for change, and TRYING not to beat myself up about Beau’s BGLs not being in range 100% of the time (totally unrealistic, but the goal nonetheless! )

Then we had the infection on Christmas eve in the site where the glucose monitor sits in his arm. Then on Christmas day, he was running on the path after the park and he face planted and gave himself a fat lip.

It’s ok. We can do this. I thought. Small things. Let’s not get hung up on everything else ON TOP of Diabetes. I kept repeating these things. Everything seems that little bit worse because it is on top of Diabetes.

Runny nose. Then  2 constant green slugs for over a week. It’s fine, it’s nothing. He’s happy.

Then while we were camping I accidentally put a sunscreen on him that wasn’t the family one (fuck, I accidentally got a normal one, not the ‘family’ one that my hand reached for when buying it!!!!!!!) and he came up in a terrible rash on his neck from it! Cue antihistamines for him.

(Cos we have antihistamines. For both children, Cooper has allergies in the hayfever way, but Beau is allergic to egg and peanuts. Of course.)

Ok, that’s ok. I can still cope. I am doing well. Camping is a huge stretch for me, especially with a newly diagnosed Type 1 Diabetic child, but we are ok. It’s fun. The kids are loving it!

Then his ear leaked overnight. And was full of gunk the next day.

That’s ok, he’s happy.

Apart from the fact it did it for the next 2 nights too.

Fuck.

Drs are open today, so this morning, off we went to the Drs…

The first thing the Dr did was listen to his heart. He kept moving around the stethoscope and stayed quiet for a few minutes so I knew something wasn’t right.

I thought this just meant he had a chest infection or something, re the runny nose and sore ear.

A heart murmur.

A. Fucking. Heart. Murmur!!!!!!!!!!!!!!!!!!!

ARE YOU FUCKING KIDDING ME RIGHT NOW?!?!?!!?

Apparently, it might just be cos he is sick right now, with an ear infection. I had one when I was younger too (as I was also an ear infection child) but I grew out of it.

So we have to go back in 2 weeks, when he is well, so the Dr can hear if it is still there or not, and if it is, then we will need to get the Paeds team at Christchurch Hospital to further investigate.

Honestly.

HONESTLY!!!!!!

Also, his grommet has of course come out of that ear that has lots of fluid behind it.

So now, I am broken. I am at my wits end. I am a person who usually finds things like this really challenging but I just feel like now THIS on top of Diabetes is too much.

So previously I might have handled this better.

And yesterday I might have been coping with Diabetes in an ok way.

Today, I am not. It is yet another challenge in the fight that is my son’s health. My baby! Why the hell is his body being so mean to him??

So now, Beau has to have:

6.5ml of antibiotics 3 times a day (for a week!)

2-3 antibiotic ear drops in his left ear 3 times a day (for a week!)

Novorapid insulin 3 times a day (ongoing!)

Lantus insulin once a day (ongoing!)

I may also be being dramatic about it because I am so tired from the constant night checks and camping tiredness. So, my apologies for that!

I rung the Paeds Diabetes team and let them know, thankfully we have our next clinic appointment in 8 days so they will give Beau a good checking over then.

In the meantime, I’m so appreciative of my husband who continues to be my rock and my constant calm!!!!! And my wonderful friends and Mum who listen to me rant and rave. One amazing friend has even taken Cooper for the night to give us a slight reprieve from the extraness that is right now.

UGH.

Hopefully I will feel better tomorrow after some sleep tonight.

And coffee… allllll the cofffeeeeeeeeeeee

 

 

Our first Christmas with Diabetes

I can’t even remember where I was up to with the last blog post, but I do know that since then, we have had our first Christmas with Diabetes.

In the lead up, I hadn’t been thinking about it really, trying not to OVERTHINK it I mean, just shut it out! lol

We just had my Mum here, and KW’s Dad, us and the boys. It was lovely! Perfect! I wasn’t worried about anything that Beau might eat as we were prepared to let him go for gold and give him any insulin corrections (extra injections) as needed.

Funnily, on Christmas eve one of the Grandparents had asked if Beau could have something and I said no. Cooper was there and he said ‘But he can have treats tomorrow, that’s what the Dr at the hospital said. Birthday parties and Christmas are ok to have treats!’ Yes, my darling boy – you are right!

Anyways so on actual Christmas day we tried to give Beau a normal breakfast. Over the week leading up to Christmas he had been quite low which (in our 3 week journey) was quite unusual but he has a runny nose and wasn’t eating as much as normal. So he didn’t really eat his breakfast, then he had some scorched almonds, I mean to be honest, I couldn’t tell you what else he ate at what time! It was so crazy to not be worried!!!! Quite a relief!!! Better not get too used to it though!! We just kept scanning him and he actually spent most (or much!) of the day, in the range of 4-8!

Yay!

Although, I forgot to mention that on Christmas eve we had a hiccup…

The CGM (Continuous Glucose Monitor) disc in Beau’s arm lasts for two weeks and we had heard that the readings were quite unreliable for the first 24 hours. So on the 23rd we put the new sensor on his other arm, and continued to read off the old one until in ‘ran out’ on the 24th.

The morning of the 24th we took the old disc off and it revealed quite a red hard lump in the centre where the sensor was in his arm. It was infected! This could explain the low/random readings! Maybe even his runny nose?

I emailed a picture to the Paeds Diabetic team and then called them an hour or so later and they were arranging a Dr at the hospital to give us a script for antibiotics. Phew! Panic averted.

They were really back pocket antibiotics to use if it became worse as the next 2 days were Christmas and Boxing Day so nothing was open. I went to get the script and had 2 completely contrasting conversations with 2 staff at the chemist.

One was with the girl behind the counter who said at least Beau wasn’t 21 when he was diagnosed, like her friend who had to stop eating all this food. (Quite a myth actually, Beau’s diet hasn’t changed too much as yet, we are just ensuring (OR TRYING to make sure!!) he gets the right amount of insulin for the food he is eating.)

The second was with the pharmacist, who may have overheard the previous conversation but somehow brought up the Hb1Ac number and how we needed to bring that down to keep a close watch on his eyes and kidneys. She said ‘It’s all very well being diagnosed with Diabetes at 2, but if you have problems with your eyes and kidneys 30 years later, you’re only 32! But if you get diagnosed at 30, then you’re already 62 when having these issues.’

I found her great to talk to but I must admit when I walked out, I began to panic… this is all on us! WE have to get that number down. It is KW and ME. We have to work so hard to try our best (which we are doing!) to do this now for Beau so that he can live as normal, happy, healthy life as possible.

I guess at this point, the realisations keep happening. Like I said a few posts ago, this isn’t a short term medication thing to fix it. It is a disease with no cure. I guess you, the readers know that. And I know it too, but when it’s my beautiful baby boy with an incurable disease it can sometimes get overwhelming!

But he is great, he has been great. Such an incredible wee boy just getting used to his new normal. Getting woken up in the night to eat some of a candy cane then toast, while watching Moana on the iPad is just becoming something that happens every couple of nights.

We are tired. We are managing this together, really being such a good team, but man, we are tired! (I know I have previously covered this, but a warning – I will still repeat it!) getting up to check him a few times every night is ok and we do share that part a bit, but the treatment means being awake for about 45 mins and that can be hard!

Tonight we had quite a significant low in the early evening. He usually has them during the night, so we can’t really see the symptoms as clearly as we have to wake him up! But we gave him insulin before dinner and then he didn’t eat his dinner (of course!) then we gave him toast, which he didn’t eat (all these bad toddler habits we learnt the hard way with Cooper a million years ago that we haven’t done in years and years! But we need Beau to EAT THE CARBS WE SAID HE WOULD EAT!!!!!) and then a wee bit of banana, so then he crashed. He was following me crying, then I sat on the floor to cuddle him and his eyes started to shut so I quickly scanned him ‘LO’ it said, so I skin pricked him ‘2.8’ I needed to get some candy cane into him.

Meanwhile, Cooper is standing there ‘Why does Beau get a candy cane and I don’t? You love him more than me. He always gets the treats and you are always in bed with him.’ Not now my Coops, not now. I know it must be so tough for you buddy and we are all trying our very best but obviously it’s not good enough right now. My darling big boy, we are so sorry we will make it up to you when we can, in the meantime, stop being a punk!

Anywho, Beau was crashing hard and it was freaking me out, he got sweaty and so droopy. He was crying and moaning and asking for chocolate, so then I gave him a wee bit before getting him onto something more substantial (shapes then a yoghurt!) he had dropped so hard as he had had the insulin on board for about an hour with hardly any carbs to match. Even though we didn’t give him a big dose of insulin. ARGHHHHHH.

He had a shower, which he didn’t like at all, then he came right and got lots of energy right on bed time! It’s so bloody hard to get this right!!

I can’t say enough how wonderful the Paediatric Diabetes team at the hospital are. They are just incredible. When I upload Beau’s data from his scanner, they call to discuss any changes etc or just to check in etc, and they are so nice! They keep saying we are doing so well, and it means the world to hear that! I don’t feel like we are, but maybe at times we are!

When I looked at Beau’s data yesterday he had about 800 readings in the right range, about 450 below it and 450 above it. Not too bad I guess, still early days and there is room for improvement!!!!!

He is still in the ‘honeymoon phase’ making some of his own insulin, so tonight we have dropped his long lasting insulin again to hope that we stop the overnight hypos (lows). The injections are measured in units, and you can give them in half unit increments. Beau is so small, and I guess producing some of his own so his wee jabs have not much at all in them! The long lasting insulin was 4 units when we left hospital and now we are trying 2 units tonight! The others vary depending on food eaten, but it’s usually between 0.5 of a unit to 2 units before meals. They are such teeny tiny amounts it’s crazy!

We are off camping on Sunday just for 3 nights. I’m not a camper, we are totally unprepared (but will be prepared for anything Diabetes related!!!) so I am quite anxious about how that’s all going to go! At least we aren’t going too far from Christchurch, so the hospital is close-ish. Wish us luck!

Our gorgeous little candy cane lover on Christmas day!

Our 2 week Diabetes anniversary

The 3rd of December 2018 will forever be etched in our memories as Beau’s ‘Diabetes Anniversary’. Sucky anniversary! I have been thinking about it a bit today as it is our ‘2 week anniversary’. I thought this morning, 2 weeks ago today I was at work etc etc, our lives were normal, Beau was ‘fine’!

But we can’t live in the past, so here we are today! Beau is 2.5 years old today exactly! This morning Facebook memories shared with me some super cute pictures from his 6 month date, and 1.5 year date. Super grateful for our delicious wee boy!

What’s new this week? Well, we had our first Diabetes Clinic on Friday. We were second in at 8.40 so that was a good first induction.
First Beau was weighed by the nurse, and his height measured. Funny as we were only in hospital last week where they recorded that info! But, amazingly, he has put on 400g since then! So that is good news!

Then we went back to the waiting room before being called into the diabetes nurse room where Beau had a skin prick done to test his HbA1c level, which doesn’t mean a lot to us now, but will start to give an overall look into how his insulin treatment is working with 3 monthly averages of his BGL (Blood Glucose Levels). I actually find this quite confusing, but it’s to do with the long standing issues of having high glucose. In the next few months this will become very important to us, but right now, when they talk about it, it still seems confusing!

The endocrinologist, who is a Dr that specialises in hormoney type things (I just googled that, I thought it was a diabetes Dr! lol!) Then saw us, for quite a while which was good as we really needed to check how we were going with things now that we actually know what all the education in hospital was teaching us!

We were worried our insulin injections weren’t working well consistently as sometimes there was a drop of insulin left on his bum, sometimes there was a bit of blood and there are a couple of bruises! Thankfully, he said not to worry and we were doing it all right, these things happen all the time as the needle might get a blood vessel or something! Phew!

There were a lot of questions from us (me!) cos ya know, no question is a dumb question!

We really really need to get Beau on an insulin pump ASAP as his BGLs are still so high and low! Unfortunately, there is a back log and a long wait. Seems so unfair when he’s only 2 and his wee body is still obviously struggling.

Lastly we chatted with the dietician just to check a few things that we are doing, so that was helpful too!

We are having quite a bit of trouble keeping Beau’s glucose levels in the range of 4-8 and he’s usually waking up quite low and in need of sugar, then he has insulin before his breakfast and his BGL all of a sudden shoots up really high! The Dr was saying this is what we need to focus on, he has a different amount of insulin already for this breakfast spike than he does for lunch and dinner but for some reason this is still happening!

It’s so frustrating for someone like me who likes to get things right and do what I am told etc etc for Beau’s BGLs to be low and high and then low and high again and not really in the right zone for very long at all. I always feel like I am failing! I know I am not though, and KW and I are working so hard to do everything the Drs and Diabetes team say and keep Beau as healthy as we can but apparently, it’s the ‘nature of the beast’ people keep telling us.

Sometimes I can feel myself getting fed up with it, and that I’m not good enough to be a ‘Diabetes Mum’ but other times I’m all good and I see it as a challenge to try our best to make it to the range. Really, we just keep on keeping on!

KW has been amazing, I honestly feel like he is the best person ever to have in my team. We are working so well together and this is making it much easier to deal with! (Don’t get me wrong, we still bicker about where the BGL reader is, or ‘have you not given him his shot yet?’ etc) but wow, I must say, I’m beyond grateful to be in this with him.

And Beau… well my beautiful baby boy Beau is blowing us (and everyone!) away with his amazingness! He is so good and lays down for his insulin shots and most of the time takes them without any fuss or anything! It’s pretty incredible to think our 2 and a half year old crazy baby boy, who had barely had any injections previously, and now has 4 daily (plus skin pricks) is handling it all like a boss! If I ever need to find strength from anywhere, he’s right there. Showing me how to smash it!

As for Cooper, he has taken to reading the BGL scanner really well so he loves going and scanning Beau and reporting back to us what the number is, and what the arrow is doing (it shows which way the glucose levels are headed… down, up, steady etc) He is beginning to feel even more left out than usual (as Beau is such a Mummy’s boy) so the school holidays have come at a really good time (again!) as today, I dropped Beau at preschool for another couple of hours and took Coops out for a fun Mummy/Son date – to TimeZone (his fave), fluffy (my fave) and to choose a christmas present for his brother! I will continue to work hard to prioritise this time as it’s super important!!

So as I said I dropped Beau at preschool today, and while we were at the mall I got a call from them. Someone had brought in some wee gingerbread cookies to share and Beau got upset when his teacher said she didn’t know if he was able to have it, and she would have to call me. Ohhhh, my heart. My poor baby! I was like ‘Awwww, just give it to him!!!!!!!’ and made a plan – give him the sugary cookie, make him exercise outside after it and I would get there ASAP to give him an insulin shot if needed. It wasn’t. He was fine! (I still went! It was pretty much time for home anyways!)

I spoke to the Diabetes team tonight about it and they (thankfully!) said that it is so important that he doesn’t feel different and is included in things like this where possible! Ah music to my ears, the last thing anyone wants is their children to be left out! Especially because 2 weeks ago, Beau could have (and would have!) smashed a tiny cookie like that without a second thought!)

One thing I did do this week, which I didn’t think I would do for a long time (and feel a bit guilty about!) – I went out! And had….a few….(too many) drinks! KW had the boys so I didn’t need to worry as he was able to handle the highs and lows of Beau’s BGL probably better than me! It really is a team job and I so appreciated the opportunity to let my hair down and celebrate the end of the year with my teaching whānau. (THANKS BABE!!!! Especially for the much needed extra sleep the following day!)

The past week

So I realised I had left quite a bit out of the hospital stuff, and that’s ok, cos it was so bloody mind boggling, and now a lot of it has since just merged its way into our lives…

The support we’ve received from our family and friends has been so incredible and it really has meant a lot! One of my friends took Cooper to school each morning we were in hospital which was amazing!

So on the Wednesday morning in hospital, things began to slow down in the hospital, the ward filled up and my anxiety about getting out of there grew! I needed to go home! WE needed to go home! I felt like we were just stuck in our room, or the learning meeting room and that was it! Beau was definitely getting cabin fever and even Moana restarting and restarting was getting old for him. Thankfully, on this day I finally discovered the wifi password! Duuuuuuhhhhh (it’s the small things that we can miss when our brains are busy dealing with something of this magnitude!)

Anywho, so no-one really cared about us, I had to go and chase up his breakfast and the nurses, because Beau couldn’t have his breakfast until he had his insulin, and even though we had the insulin in the room, we had to wait until 2 nurses were there to administer it, or in this case – watch me do it!

It was after 8am by the time this happened and my wee man was hungry!

My Mum and Kodie came in soon after, with coffee (yay, happy dance!) and John came in to work with us again. First up, he gave Mum a quick run down. Of course, we hadn’t really had a chance to fill her in on anything so she was thrown in the deep end! It was good though, man, she coped so much better than I thought she would! She practiced skin pricking on herself and really surprised me!

We had another dietician come and explain to us about counting carbs – and I think this is SO important to understand – it isn’t actually the sugar in foods, it’s the carbohydrate content. So that’s what we look for on labels to calculate Beau’s food. There is a lot of weighing and portion control involved and it’s kinda feeling like learning a new language in a way!

In the afternoon, John spoke to us about how to handle ‘sick days’ with Beau and this is tricky to manage. This is something that petrifies me! Kodie and I straight away make a pact that when Beau is sick, we are both on deck to deal with it. I asked if the hospital admission rates are higher for sick children who have Diabetes and, of course – they are! Uggghhhhhh..

He also told me we were now pretty much joint to the place as we have to take Beau to regular clinics there once we have been discharged from hospital. Eventually 3 monthly appointments on a Friday. Our first one has already been made for the 14th December!

I was OVER hospital (did we cover this?), there were more and more ‘yellow signs’ appearing on doors in the ward warning of ‘contact precautions’,  (arrrggghhhhhhh!!!!) I was shattered and Beau and I really both needed our own surroundings, bed and shower etc.

Finally, we were given the go ahead and could go home!!! Now those of you who know me well, know I don’t like my house very much – well let me tell you, I was soooooooo excited to be home in it haha. Beau was saying that he didn’t want to come home, but obviously he didn’t know what he was saying!

Kodie dropped Beau, Mum and myself off and went to get Cooper from school.

While he was gone, there was a knock at the door. It was Beau’s preschool teacher, his primary carer with her son and some beautiful flowers.

I can honestly not tell you how much this meant to me! I have always struggled with my babies moving to the Over 2’s room at preschool and have missed the closeness we had with their baby teachers, but this gesture meant the world to me!
She came and said whatever we need, they are happy to do and they will welcome Beau back with open arms when we are ready. Then we swapped numbers, because obviously now this relationship between home and preschool is so much more than it ever has been before. There is a huge trust for us to send our baby, our sick baby, to preschool to be looked after by other people for 3 days a week!

In that moment, I knew we would be ok. I really feel I can trust them and I know that they have my baby’s health and best interests at heart.

Kodie and Cooper arrived home, Cooper had a gorgeous bunch of flowers from one of my workmates (honestly, the support and love we have received blows my mind!!!! THANK YOU SO MUCH!!!!!!! We are so lucky!) Kw began looking at some dinner – here begins the measuring and portioning! Good old spag bol, never looked at a jar of pasta sauce so hard!

Well, to be honest, KW sorted it all out, cooked it, then divided it into 4 bowls to see how much a serving size would be etc etc.

I remember in this moment, having a wee quiver – I was so tired. Can we do this forever? How can we? It seems to involve such energy and brain power that I just don’t have. Luckily KW is clever with maths etc and maybe all that kinda stuff can be his job? YUSSSS!! Or not, cos he works full time. And I don’t. And I am not working till next year. So tomorrow I will have to give it a go. Tomorrow will be ok.

It’s now been over a week since that night, so now I can give you a rundown of a day for Beau (SO FAR!) in our Diabetic world…

Wake in the morning:

  • skin prick before breakfast
  • calculate how many carbs we THINK he might eat for breakfast
  • give him an insulin injection for that amount of carbs – based on current BGL (Blood Glucose Levels)  (from a chart made for him)
  • wait 10 minutes and he can then eat his breakfast
  • skin prick before morning tea to check his BGL
  • morning tea snack that is less than 15g of carbohydrates
  • skin prick before lunch
  • calculate how many carbs we THINK he might eat for lunch
  • give him an insulin injection for that amount of carbs – based on current BGL (from a chart made from him)
  • wait 10 mins then he can eat his lunch
  • skin prick before afternoon tea
  • afternoon tea snack that is less than 15g of carbohydrates
  • skin prick before dinner
  • give him an insulin injection for that amount of carbs – based on current BGL (from a chart made for him)
  • AND another insulin shot of a different type of insulin that lasts for 24 hours
  • wait and eat his dinner
  • skin prick when we go to bed
  • depending on if it is high/low etc set alarm for another hour or 2 to check. Or just one/two if it is ok. Repeat till the morning.

So you can see there are lots of things to take into account and think about, as well as factoring in exercise and what to do if his glucose level is high or low.

I wish I could say more about that, but I can’t as we are still trying to figure out what is going on with it all!

Yesterday I went into to school to see my class and team’s final assembly, a production that has been a work in progress for the whole term. I got so emotional at the end, it was bloody brilliant, I was bursting with pride for the kids, and the teachers! It was amazing to see the kids faces when they saw Beau and I in the audience! :) I miss them. A lot.  I am focusing on my son and our new lives, and WOULD NOT be anywhere else, but I do miss the normality of work and our old lives. I’m missing out on being there and saying goodbye to the kids in my class and clearing it out and spending the last couple of weeks with my amazing co-teachers. It’s ok, life is different right now, I need this sick leave, but I am still a bit sad. I obviously will always and forever happily put my own family before work, well ANYTHING and EVERYTHING, but in the interest of being transparent, open and honest in this blog – these are my thoughts as the 2018 teaching year draws to a close.

Our FreeStyle Libre – CGM (Continuous Glucose Monitor) arrived last Friday. It took us until Monday night to be brave enough to put it in Beau’s arm! His wee arm is so tiny and each wee disc costs $100 and is supposed to last for 2 weeks. So it’s a big deal!!!! We did it though, and he was super brave! Now he has a white circle disc sitting in the back of his upper arm! All the time! It’s so cool how you just swipe the reader on past, and it takes his glucose levels but it hasn’t been very accurate with reading the same as his skin pricks yet. We are finding we are still needing to skin prick quite a bit. Hopefully this settles down soon!

I guess, his glucose levels are still all over the show so it’s hard to know what’s going on. We had our lowest low (3.2) this morning (Thursday) and it is so hard to manage when he doesn’t like the Dextrose tablets or jellybeans!!  Whyyyy doesn’t this kid like lollies!? Lol we need to sort that out! Or SOMETHING to fix these lows…

I’m beginning to feel like I’m failing this. Failing Beau and his health. Why can’t we get the predictions right for his food intake versus his insulin shots? Why are we having so much trouble with the injections looking like they are working properly? Why was I up like 6 times the night before last monitoring him as he sat around 4, petrified that he would go ‘low’ (he didn’t!) and last night I slept from about 12 and didn’t check him and he actually went low!!!! For fucks sake.

I am tired.

I am tired in my bones. And in my head. And in my face.

My eyes can barely open in the mornings at the moment and I need 2 triple shot flat whites a day to break even with the normal world.

It’s ok, I’m ok and we will be ok. But it is hard. I guess last week this was all a crazy new ride, and almost like medication for a week, you know, antibiotics.

Maybe this week, it’s real. It’s ongoing. It’s forever. It just might have dawned on me and it’s a lot. It really is a lot.

On Monday Beau and I went to his preschool christmas show, it was cool and afterwards, he wanted to play outside. This was actually another big wobble for me, as it was shared kai…. It broke my heart that he couldn’t have any food. I wasn’t ready and hadn’t factored any different intake of food or anything! So I distracted him and we played for a bit outside. I really felt sick here, that my precious boy was missing out on all the food others were taking for granted.

Tuesday we went back for a play for an hour just to get him back used to the environment and it was fun, he enjoyed it. The paediatric Diabetes team really strongly recommended getting back into a routine as soon as we are able… So these are the necessary steps we needed to take, as much as I resisted, it’s what’s best for Beau!

So….in positive, and ground breaking news, this Mama left her baby at preschool today!!!!! I dropped him about 8.30 with the instructions to do a skin prick soon after and then one just before morning tea. I left his morning tea snack. And I did jobs. On my own. I actually surprised myself I wasn’t worried. I had two of Beau’s awesome teachers messaging me the whole morning and I felt confident that he was in good hands and it was what’s right for us. It felt good to know that it’s positive for Beau to get back into his normal routine, which is preschool without me there! I picked him up 3 hours and 20 minutes later. He was in the sand/water tray and loving it!

I am so proud of all of us! Me, Beau AND the teachers at preschool! It was a victory!

They skin pricked him again (his pre lunch one) and I worked out the amount of insulin and gave him his jab while we were still there so they could see. We are letting him choose where he has them done there, he chose just on the floor in the main playroom. A couple of the other kids came to see what was going on. Beau coped so well, he flinched a bit and I’m not sure if this is hindering some of the injections, as some work well and some don’t seem to? Anyways I guess that’s a question for the clinic tomorrow.

One of his amazing teachers became upset watching Beau have his insulin shot and it was another reminder of just how massive this journey is. What this means for our son. For his whole life. This isn’t just for a week or two. Bless her, and bless you readers for having us in your thoughts recently. It’s a new world and we are grateful for the medicine that will help our boy stay healthy, we are grateful for our wee Team Wixon and we are grateful for our family and friends, workmates and preschool peeps.