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.

What white flag?

Last night, like so many random nights in the last year, I was really wishing there were a white flag I could wave to make it all go away.

Despite the help in preventing long and severe highs and lows for Sierra, and we are ever grateful for that from the G4 - it's saved too many to count at this point, it hasn't been a good friend to my already lackluster sleeping habits. I think since we've gotten it I've only "only" been up one time at night as I was previously (generally speaking) a handful of times. More typically these days, it's 2-5 times a night.

Yeah. 2-5. Last night was a 4 timer if you include me staying up until 11:30 trying to see if her number would reduce (PLEASE EFFING GO DOWN) before doing a 2nd set change of the day out of fear she'd run high most of the night and into the morning if I didn't.

What's worse? Waking a 4 year old at 11:30 to stick a tube in, or to wait until 2? I figured I'd be more sleepy/half alive at 2, and opted to just get it done with. We'd just done a new set roughly 3.5-4 hours earlier when she went very high ("spiked") after a great day and a VERY low carb dinner. Turns out she had a 'kink' in her tub. What's a kink you ask? Basically what it sounds like - somehow the tube has bent inside of her and isn't administering insulin properly (or at all).

Anyway, after an epic 30 minutes battle of wills between myself and the very tired 4 year old (I had to win, so it was really just war with my patience and ability to play the nice nurse instead of flipping out because I was really tired too), we managed to get the new set in. Sadly, upon just finishing up the new set I snuck a peek (for the 90th time) at the new CGM - low and behold, the number had dropped over 40 points in the last 5 minutes. Figures. The previous set was fine. The last 30 minutes was a waste of stress, sleeplessness, and my poor kid has another new hole in her.

WTF.

I hate this disease. Hate it. I don't really know how else to put it out there clearly. It is the most ridiculous, frustrating, helpless thing I've ever encountered and it just doesn't QUIT. It's like she wasn't *allowed* to have just ONE great day. Just one! Her numbers all day, for the first time in I don't know HOW long, were actually in range 95% of the time. I mean, that's downright miraculous if you check the logs for the last good while. Nope. Couldn't stick with it through the night.

With her finally coming down, I finally got to bed close to midnight... and was alarmed awake by the CGM at 1:39am. She's going low now. Guess that extra insulin REALLY kicked in over the last hour, 4 hours later (from when she got her last correction). Awesome. Shuffle through the cold house to get some sugar-filled things. Give her juice and a few goldfish (ie: wake her up. AGAIN). Ok. Good to go. Shuffle back to bad.

2:12am, the stupid monitor we use to hear her alarms at night decides now is a good time to beep annoyingly while 'searching for a link'. Something it does I dunno, not that often but enough to make me want to smash it with a hammer every damn time. Ok. Back to sleep.

3:34am, alarming low again. More juice. A tablet, and some crackers.

Finally, back to bed again. Finally sleeping. Frank is up 5am showering for an early work day. Back to sleep, Sisi is up at just before 7am, coming in to tell me 'wow I'm tired!'.

I hear ya girl. I hear ya.

I know we were missing a lot of these little highs and lows (at least the longevity of them) and having the CGM is invaluable to her health.

Unfortunately, some days I feel so much like the walking dead I'm not certain how much longer I can really hang in there waking up this many times a night. You expect it with a newborn. Even so much as through the first 9-12+ months of your childs(rens) life. Ok. I can do it. I can make it a year. Then it's cry it out time - BOOYA.

Sadly... this 'end of the road' stuff isn't in sight here, and it's disheartening after nights like last night. How do you function? How will SHE function if this is going to be her life, until or if or when they finally manage to find a system that can help while still valuing the very important nature of REST? What option do we have? "Ignore" what's happening at night? That obviously isn't the best course, for numerous reasons. I have a love/hate relationship with the CGM right now, as though it's the things fault I'm getting worse sleep than ever lol. I guess it is and it isn't. It's hard to be both grateful and spiteful at the same time.

I feel for all of my parents-of-little-diabetics out there. Those just starting, those years in, who know that without coffee we quite possibly wouldn't make it walking through the days sometimes. And thank goodness for partners who can pick up a night here and there despite THEIR work schedules and responsibilities too, so that at least when you hear the alarm you know someone else is on top of it and you can rest a little more.

So friends, if you see me today, or on a day like today, just know I'm not purposely zoning out or blinking into space because I don't care.

I'm just really, really, really effing tired.

Here's to hoping for a better night... or maybe 2.

The Dex.

We've had a little over a week and a half now of solid Dexcom G4 use... the big shining billboard right now prominently says "This thing ROCKS", but I think the jury is still out for Sierra - but she doesn't complain. And our second 'set change' experience was so utterly flawless that I was baffled and almost convinced I must have done something wrong and it wasn't inserted properly, because she proudly proclaimed "THAT DIDN'T HURT AT ALL!!!" Awesome!

I have mixed feelings. Most of them are very positive. I think we've managed to catch all but a small handful of lows in the last week (which sadly there have been many - but we caught them before they were under 70!) thanks to the Dexcom alarming us in advance. It tends to fall behind more than usual if she is rising or falling quickly for whatever reason, so it's not always fully reliable, but it's more reliable than no data point at all, so I'm pretty happy.

I'm still having to fudge with settings - and sleep has been worse, not better, as a result of our learning curve and constant alarms or alerts for various things.

I think once I get it really dialed in it's going to be hard for me to imagine life pre-Dex.

Sierra, I think, doesn't really notice it too much. Which is great. Because truthfully if I had that transmitter thing sticking an inch off of my body (when my body is especially small, like hers at only almost 5 years old) it would bug the crap out of me. We have limited resources, or I guess - fat store options - to place the set on her body, so currently it's stomach. We're running out of real estate fast. Her pump is taking turns on either bottom cheek, and we try to move spots a bit, but she still has a tiny little 4 year old butt. It makes moving it a little difficult. I've read on some adult reviews that they prefer to wear the dexcom set on the back of their arm - which does sound better for the most part. I guess, if we still have to use technology like this in 10+ years, that will be a little less obtrusive.

Somehow, perhaps optimistically, I don't anticipate she'll be using a set like this at all in 10 years. I'm going to hold on to that for now. It helps my mom-brain day to day. I can't look at it ALL of the time as a lifetime deal, it's just too big, too overwhelming to consider. Day by day. Week by week. And we look up and forward for technology and advancements that are very likely to come about.

Frankly, diabetes is slowly raising to epidemic levels in our nation. As a result, more R&D, money, and hopefully major advancements may follow. It's sad it has to get to this, and the rise in T1D being diagnosed is concerning because 'they' really don't know WHY, but if you do a little research the numbers are a little alarming.

I think when you are on the outside of a diabetic lifestyle, it's easy to assume that this - while cumbersome - isn't too bad. It "could be worse". Or at least it's "not fatal". I don't know. It's interesting the things you read sometimes. Sadly, it is chronic, it is dangerous, and it can be fatal without the proper care or if some kind of malfunction were to occur. I think it may even be easy for me to forget in the day to day grind that this is absolutely a dangerous illness. I'm not just talking scary long-term negative effects of poor blood sugar control (like blindness, loss of sensation, kidney damage, limb numbness etc), but just how easy it could be for someone living with it day in and out to just get TIRED. The diabetic, I mean. I know in life that most of us simply do what needs to be done - I mean, that's how we all survive on some level, right? Still... it's a lot. I find myself hoping despite the crappy-ness of experiencing childhood with this 'grow up fast and deal with things no kid should have to think about even remotely' stuff, that Sierra will be stronger and more able for it. And not just burnt out sooner.

The other night, she ran high for hours. When we pulled her out of her carseat around 6:30pm after dinner her tube caught on the belt and yanked - she screamed bloody murder but it seemed in tact and it looked like her number was still coming down a little, so we (I) didn't think it needed to be changed.

My bad. She was still level at around 270 come 1am, after two major bolus' corrections and an increase on her basals by 30% for 2 hours. She hadn't budged!

Try waking a 4 year old at 1:30am and telling them you need to stick a needle with a tube into their butt cheek. Imagine how warmly you are welcomed here. Yeah. Needless to say, as it never does, it didn't go well. She did finally let me get the new set on, and was quick to forgive (love that girl...) and give me smiles before nodding back off to sleep. But I stayed awake for 3 more hours (before my next alarm went off to make sure she didn't go LOW after trying to correct with a new set on) in bed lamenting about what a crappy pancreas I would make.

It went something like this:
Well, I guess I should've known the set was wrong when she didn't budge for 3 hours on a nearly carb-less meal at dinner. That really doesn't make sense. And that scream! Duh! Of course it was yanked improperly if she was screaming like that, why wouldn't you change it before bed and make everyones life easier? Also, why did you give her pizza at the birthday party? Yes, she loves pizza even though we think it's the damn devil when it comes to diabetes and blood sugar levels for HOURS. The cake, no problem with the cake, but that DAMN pizza! ARGH. Every time!! Anyway. I should've known better. What can I do about pizza in the future? Do I change her combo-bolus ratios again? More hours or less? More up front or more insulin in the later part of the bolus? Am I ever going to get it right or am I going to hand her the short end of the stick every single time by either saying 'no way, pizza is the DEVIL' or 'ok sure, but in advance I apologize for crap high numbers about 6 hours from now that will refuse to go down no matter how many corrections I give you'? I can't win. And I'm tired. Why am I awake thinking about this. It's a number, I did my best, it wasn't enough, but that's the game. Get used to it. Suck it up. Go to sleep for crying out loud.

Cue alarm. Saved by the bell... she still needed another correction and managed to hover just around 200 for the rest of the night even with it (when just the night before she went low at 4am, go figure) but what else could I do at that point.

I can't stay awake forever, adjusting every hour to make sure everything is perfect. And frankly, as the diabetic, in the future, she can't realistically do it either. We all need to rest sometime.

This disease sucks you in with it's randomly reliable numbers and spits in your face with it's tragic shifts and turns to mess with your head. It is humbling (our pancreas' are amazing. thank you pancreas today, because I can tell you that thing is a down right WORK horse my friend!) and it is infuriating in it's attacks. Sometimes relentless, often following no rhyme or reason. I know I complain to this tune a lot, but it's as though I cannot say it enough.

Diabetes is in control, and you are the one playing the game trying to win. Only... it's not that kind of game. You may be able to advance levels, but odds are at some point you'll be knocked back two stages again before you advance again. That's just the way it is. Sometimes it's easy to accept and go with - sometimes it's the most impossible thing ever.