What's up?

Let me open with some photos this time :) 

 

Hows everyone (everyone? really?) out there in internet land?

We've been sort of busy (as you can probably see from above!), and I've been sort of sucky at keeping up to date on things here in d-land. Frankly there are times when you sit down and stare and the screen and think "what can I really say? I mean... has anything REALLY changed or am I just going through the same motions and repeating myself here?".

There's always something, but it's hard to keep up with.

So much has happened since January and our last update!

We've traveled - to both Kona, Hawaii and Disneyland. Sierra pulled through both trips like a champ, even with a brief 24 hour flu bug hitting us on the islands. Disneyland was just a special trip for Sisi, myself and my mother. A nice bonding getaway, where she could be a normal kid dealing with an exceptional challenge enjoying one of the happiest places on earth. Disneyland was incredible, Kona was incredible, and we're gearing up for Maui in a week.

It sounds crazy right? Haha. We didn't plan both trips to Hawaii on purpose, one was a work reward for my husband and the other was a year in the works trying to get a trip planned with my husbands parents - it all came together around the same time and we just ended up doing both. Score.

We've also gotten a puppy. Why not add a little more madness to this crazy life??? He's only been with us for a week, but I can tell he's going to be great for the family. He already is.

Enough about the generals - lets talk diabetes.

We're now 4 months (almost) into the use of the of the Dexcom CGM. Honestly, I'm having a very hard time imagining life before this gadget, and it wasn't all that long ago. Quite possibly the most important piece of equipment we own for her, I'd even say more so than her insulin pump.

To further explain how amazing this "not perfect" device is - we had our most recent quarterly diabetes clinic visit two weeks ago. I believe I've discussed "A1C" numbers here on the blog briefly before - they're essentially an average of your combined blood sugars over a certain period of time. So they aren't a perfect science - not nearly - because a "good" A1C doesn't always relate to good blood sugar control. Sometimes you get a good number - but only because you had waaaaay too many lows (under 70s) and that counter acts any highs, thus bringing your averages down. However, we know her readings, we know her averages, and we know that we NAILED it somehow over the last 3 months.

Her a1c was already a pretty nice, standard for her age, clean 7.4 back in December.  The doctors prefer kids come in between 7.5-8.5 to avoid too many aggressive hits and thus a lot of lows bringing the number down. They ask you to try and keep in the uppers more than the lowers because lows can cause more problems with the brain (they believe through research currently, anyhow). We received the new Dexcom on December 24th, and started using it the following week.

Her A1C dropped to 6.6 between then and now. And not because of lows. We only had 6% of all readings as lows in those 3 months. We had 57% "in target". 57%.

To me, that sounds like a D-. Ew.

To the doctors? Well, we received a lot of wows, and a lot of fantastics, and a lot of good jobs. They were very happy with her ratios, her levels of in target were above most (I was told on average they see between 35-45% as in target, typically).

Just take a moment here and think about this with me, because it still blows my mind. In a disease, where the real battle is trying to stay 'in range' - being there ONLY HALF OF THE TIME EVER - is a great achievement. I felt great and also punched in the gut at the same time.

Mentally, I get it. This is a chase game and we get a 50/50 shot most of the time, if we're lucky. And a lot of those "in targets" ARE purely luck. You gambled, you won! You gambled, lost! It's a constant movement, and a constant chase. So yes, mentally, I get it - and I'm happy, and a little proud, and still exhausted but at least it was WORTH something. 57%. Hell yes.

Emotionally? Really. 50%? And that's literally being on it to the point of just constant monitoring. I mean constant. Like that screen is glowing back at me probably every 15-30 minutes. I see a trend? I jump on it so fast that diabetes can suck it! She starts to dip because I jumped the gun? BOOM here's some sugar - it all works out!

Exhausting. Worth every single second, but exhausting. Constant is an understatement.

And so, I find myself day dreaming about the future. About the school years. About when the time comes when I anticipate and fear that A1C will probably at some point go higher than it's been since we've started insulin therapy. When she'll push the boundaries. When someone else is with her (school) and she simply can't have a 1 on 1 mom-like person just taking it on step by step to keep everything perfect. No one can do that, I'm sorry, but me. I can do it. But it's not my disease. It's not my place or even right for me to think that forever I am going to be glued to her side doing all of this. She will want independence. She deserves independence. I will need to trust, and hope, and work with her school(s) to do their best within reason. One teacher, 30 kids? No teacher is going to be eyeballing the Dex every 15-20 minutes like I do. I just don't see how that would be reasonable. In school, safety will be their objective, and what I go for is beyond safety right now. I work for all of her years ahead.

I monitor and react and am constant to do my very, VERY best to keep the scary parts and side effects and downfalls of ill management from her shoulders as well as I can. I hope that every low prevented, and every high I managed to battle off more quickly than the last means a better and longer quality of life for Sierra.

It's going to be an interesting transition, sending her to school. Teaching her how to care, how to be aware, how be vigilant and proactive but not ashamed. Not guilty for the occasional 'oops I forgot', or "I'm burnt out on this!" or "WHY did that happen, I thought I had it right!"'s. They're going to happen. There is so much more to this disease than just the management... it's emotional toll is very different. You are in charge of getting the numbers right. That is your job.

Guess what?

57%.

So what about the other 43%?

How do you not berate yourself. Or just wonder what the hell went wrong? Or feel guilty for goofing up and putting more risk out there. Or mad at yourself.

How will she handle it?

How will we TEACH her to handle it without anxiety?

I want her to aware. I want her to be SAFE. I want her to be responsible.

But... I want her to be a person, too. She is not diabetes. She is NOT diabetes.

57%.

One number holds a lot of feelings. And while it shouldn't, we're only human. I really hope I can show her a balanced way... to protect the person she is, the person she can be... while maintaining her health as a priority, too.

It's not an easy task for anyone. I really hope we don't screw it up for her.