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

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