Month: January 2019

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!

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

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