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!)