Oh, oh HAI! Time files, am I right?

Good grief! I have legit dropped the ball for the past, what, 3-ish years?

There have been so many changes, advancements, adventures and dramas in our little life I can't imagine attempting to start rewinding and bringing it all back. So here's a little cheat sheet for catch up purposes:

Sisi is now a goofy, thriving 8 year old just about to finish 2nd grade.

Her little brother? He's totally 6. .. whaaaat? His first summer after kinder is upon us shortly too, godspeed self.

We've officially been on the Animas Ping insulin pump for 4 years this July. 4 YEARS. I'm certain it's impossible I've aged that much, but it happened folks and here we are.

All in all? The pump has been perfect for life with a young child, things get forgotten (cough, like every day at school practically, cough) and having the pump on her at all times has often saved the day on that 5th return trip to school to frantically run to the classroom in hopes the teacher is still miraculously in attendance on a Friday so that we're not left without our kit bag for a weekend.

We're still rocking the Dexcom - G4, because I don't really feel the need to upgrade yet and the phone vs receiver thing is moot - she has both and the teacher understands and knows the receiver numbers up in her face. I like that, too.

Some developments that have changed over the past few years are basically these:

Full time nursing staff at our elementary school.

Nope, you didn't read that wrong. This is a public California school, and we have full time (almost) nursing staff on site. We have our fabulous district nurse on the short Wednesdays, and two LVN's (retired nurses) who have been hired to be onsite from 9:30-1:30pm. Amazing, right? I am counting my lucky stars here team. We have to be one of the most stoked groups of t1 parents ever, or at least in our immediate area, hands down.

Not only do we have the coverage, we have a team effort. They are flexible, they are helpful, and they've worked with me to build essential a technical network of information available to all of our fingertips to keep our kids safe at school.

"They"? Yup, we have 5 diabetics in our grade school, which has roughly 500 students. 3 of these students are now up and running on my next exciting info drop: NIGHTSCOUT.

If you're in the diabetic community and you have yet to hear about The Nightscout Foundation or "CGM in the Cloud" (#wearenotwaiting) - you've just landed on a goldmine.

I stumbled very luckily upon their Facebook page in the infancy of development - July roughly 2 years ago when I believe there were about 1000 members (there are 10x+ that many and globally now!). I dug in and set up our databases and websites and hacked our Dexcom and guess what? BEST THING EVER.

No really, and this is probably old news at this point in time for many, but this was absolutely GAME changing for our family. While I have a semi-tech-nerd background I am not what you would call a true techy and am grossly out of practice, but I did it, you can do! And I suggest going there right now if you have a moment, because even if it seems completely overwhelming at first - YOU CAN DO IT. And they'll help you. We all will. I've helped two families at our school get online (or at least learn about how it works so they could do it themselves). It's free info, it's free support, and I can see my girls numbers no matter where she is or where I am, any time in real time.

On my wrist. (Thanks Pebble watch!)

What does this really mean? Is it stressful? I guess that depends on your personality. I like glancing at my watch, knowing what's happening, and knowing that if I don't see a change I can shoot a quick text to her teacher or friend or my mom or the nurse - whoever - and give them a heads up. Often it's not necessary if I breath for 5 minutes and see a change I need to see to feel better. I love it. It took some hidden weight off of my shoulders that I don't think I realized was there. The "not knowing". Even with just a dexcom, the sense of relief I gained from Nightscout was tremendously more.

What about DexShare, you say? I know, getting data anywhere anytime is old news now that Dexcom has released the G4 Share and G5 - still, I prefer the data coming from Nightscout, which is more comprehensive and trends are easier to read.

Currently there is a huge bout of people trending to build their own Artificial Pancreas (Henceforth: AP cause I'm lazy). Check out "OpenAPS" if you're curious. I'm not tech savvy or brave enough to try it myself, but it's just going to keep getting better now that it has tech eyes on it from people who CAN do this and can find ways to make it accessible to everyone. It's what they do. #wearenotwaiting.

What aren't we waiting for? The FDA. The for-profit companies to figure out things that our members are CRUSHING right now with pretty impressive success rates. Sure, it's nice to have the FDA trying to keep things safe, but they're also the crusher of all things progressive until it's no longer progressive. At least, a lot of the time. And frankly, they know nothing about day to day life with Type 1. The lack of sleep. The constant thoughts and stress that can sometimes consume you. The worry for your child or other loved one. While these technologies run to the shelves successfully in Europe, our FDA waits. I get it, that's our system, but OpenSource is legal, and our medical choices are not and cannot be mandated by the government - our bodies and health is our own, and if you know what you're doing, more power to you.

Still, if you aren't tech savvy enough, like myself, to go full AP at this point - no worries! It's looking like 2018 is going to be a big year for us friends. Several companies (BigFoot, Beta Bionics,  TypeZero and now we see notices from companies like Omnipod and Medtronic trying to get their options out as well) are in the race to produce the winning AP solution. Sweet. Market drive! I like it.

So this was basically a re-entry post to just say hey - yay - stuff is ACTUALLY happening guys. YES. We've been hearing it forever, but change is coming.

Speaking of change, because it's time for a new pump through insurance Sisi has decided she's fed up with tubes - onto the Omnipod we go!

Anyone have some tips or experiences for me? Seems pretty straight forward and I'm excited for her. I'm also excited to not have to attach and prime tubes at 2am, so there's that.

Above all please remember: You're crushing it. It's not crushing you.  And though sometimes you may feel alone, you are so NOT alone. We're all out here, warrior-ing alongside you.

Until next time, which shouldn't be 3 years from now.

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.

It's here! We're live... but what does it all mean?

My (our) Christmas wish came true - well, at least my husbands' and mine. I can't say Sierra is overly thrilled with having a wire stuck into her abdomen on top of set changes for her pump - but sadly until she's a little older and can make medical decisions for herself (or unless she REALLY protests a ton) we're sticking with the CGM for a while.

It showed up on our doorstep around 4pm on Christmas Eve - how magical is that? Pretty green, white and orange boxes lined with medical advancement goodies for us to help keep our little diabetic safely in range - or at least respond more quickly and with more knowledge than we've been able to in the last year.

The transmitter was a little large than I was expecting - but I suppose never having actually SEEN the Dexcom 7 (that was the previous version - this version, the G4 platinum was just released about 2 months ago) I'm not sure why I would understand or know what to expect in the first place. Sometimes you just make things up in your brain, I tend to roll with it. I'm often wrong. It's ok, I'm very accepting of the way this works.

Here we have the transmitter - the 'little' gray chip that connects to the set (see that creepy looking medieval looking torture device that is sure to terrify young children and adults alike? That's what we use to attach her Dexcom CGM set, fun right?) and sends wireless data from her cells blood sugar readings to that nifty ipod looking receiver.

The insertion seemed easy enough, when you don't really count the wiggly, scared 4 year old that you can to place this thing on, and really DO NOT want to mess up, because you will not be forgiven for a very long time if you have to stab a darn wire into someones stomach twice.

Ok I make it sound awful - but in reality we're pinching up on the fat stores on her little tummy, it doesn't go very deep so we're (theoretically and in the act ATTEMPTING...) to stay away from any nerves or muscles and only inject in the fat cells. When we originally tried a trial run on the Animas Ping pump, both my husband and myself put a set on ourselves for a few days to see what it really felt like so we could gauge reality with a screaming 4 year old who naturally doesn't like needles. I mean, honestly, if you could just scream every time something pinched you and someone else was behind the proverbial steering wheel don't tell me you wouldn't feel better about it. I would. Sadly, it's not really socially acceptable and we're told as adults to suck it up.

Anyway, it's a small pinch. It's not as bad as it looks. That isn't to say it's comfortable, but it's no worse than the things Max throws at her head almost daily either. So we persevere and keep going.

I tried to prep her through conversation, but apparently didn't do too well, because when I pressed down on the set (which is frustratingly NOT spring loaded, so it takes a minute to pull out.. ugh) to insert the wire she flipped the f out. Understandable, it doesn't feel good and this probably feels differently than her normal set - not quite as fast, not quite as fluid. It scared the crap out of me! I went stoic and finished up as quickly as I could so I wouldn't scare her with my 'omg I just totally stabbed my child with a wire and it clearly scarred her for LIFE' expression.

After a few minutes I was forgiven, Squinkies were given as reward, and we (impatiently) waited for the 2 hours necessary for the information to start flowing on the new fancy G4 screen.

The good news about these sets, according to what is FDA approved vs what many many diabetics (and even doctors) have mentioned - these little gadgets (the sets) can actually work if all of the planets align anywhere from 7 (FDA approved) to 10 or even *14* days. Yeah. People have successfully re-booted the transmitter (which auto-shuts off after 7 days, since that's how long the FDA approved/tested for) for an entire extra WEEK. I felt like 7 days was awesome after knowing we change her pump sets every 2-3 days already. 7 days felt like a huge relief. But after doing some research, I may see how we do on 10 days. It took us about 2 days before we really starting seeing relatively accurate readings (meter vs CGM).

The good news? It's prevented (through alarming us) roughly 6 lows already.

Yep. 6. That's huge. Lows she didn't have to reach because the CGM warned us it was coming.

YES.

That is gold, diabetic parent GOLD. I really couldn't explain it better if I tried.

Sadly, prior to all of the illness we suffered in December (lets just it was pretty much all of December between stomach flu, respiratory cold/fever virus, and an ear infection) caused us to increase her insulin amounts over the course of 3 weeks and now we're "healthy" - she's crashing back down and I'm trying to reduce responsibly, even a little aggressively but she's still having more lows in day than she'd had in 3 weeks before all of this hooplah.

Good timing for the CGM. I'm still working out some kinks, but so far I'm so happy to have it. Not only has it prevented a few things - but seeing a lovely graph over 1, 3, 6, or 12 hours helps me TREMENDOUSLY to see what her insulin (especially at night - basals) are doing. Before this CGM, I knew that she dropped heavily "some time" between 2am-8am. But where to make the change and when to ease up? I could only guess. Today I know for a fact, that drop happens at approximately 4:45am. Meaning I can head it off with less insulin 4:30am-6:30am and she shouldn't wake up low or have any early morning lows once I find the perfect dosing period.

This is tremendously helpful. It's like getting a cheat-sheet before a big test.

Well, her diabetes is sort of the biggest test I have day to day, so I'll take these cheat sheets and proudly use them.

We're only on day 3 of use, but I can see what a helpful, amazing aid this is going to be. Especially as we learn more about it's little tweeks, how to really dive into these graphs and use them to find the best ratios for her, and that annoying, beautiful alarm is a huge bonus.

Maybe one day I'll be able to not set my own alarm once we settled into a reliable routine now and then? The night time alarm is pretty awesome, even more so if we place the receiver next to a baby monitor :)

I'll keep the updates coming as we learn more, for now though, I'm optimistic. (Well, about everything but the next CGM set change, but we have to do what we have to do....).

Belated Merry Christmas to you all!

Holi-daze.

Oh wow, look at that, a month and a half later I'm back :)

We have a good mix of news here on the home front.

First and foremost - we SURVIVED HALLOWEEN. Actually, we did better than survived, we sorta thrived. She had a great day, enjoyed some candy (and a piece a day a few days following, too) and her numbers were fantastic. Probably because we were checking a little more frequently - but even then, it was fun to see her take part in the day and just enjoy being a goofy little girl in a cute mermaid costume.

(obligatory gratuitous kids in costume photo:

 Max always picks his nose these days, so this photo is totally legit.)

After Halloween I have to admit November is a bit of a blur. We've been working on getting approval (read: COVERAGE) through insurance for the brand spankin' new G4 Platinum Dexcom CGM - that's quite a mouthful huh? We'll just call it the G4 or the Dex from here on out, ok? If you want a real view of what this handy little gadget is all about click on the link and watch the 1-2 minute video - it's actually pretty darn cool. We wanted to give Sierra a handful of months being used to having something attached onto her body before adding more to the plate, but with the level of control and visualization this tool could give us we think it's time.

A CGM doesn't replace the need for the finger pokes - however - it CAN *reduce* the need for so many. Remember, we do 9-12 pokes a DAY. No joke. Sometimes simply because she's acting like a 4 year old and we want to be sure it's not a high or a low. Understanding and seeing 24/hrs of data and trends will help us learn how to adjust and tweek her insulin amounts, how we administer for the really tough foods like pizza and pastas etc. I really think this could help us. It also alarms us if she's trending to go LOW.

Yep. It warns us. It won't always be 100% accurate, we'll have to calibrate every day and probably still do a fair amount of pokes - but if it's right on catching a low before it even happens even half of the time that right there is wonderful. 

It'll also take care of some of the guess work we really struggle with at bed time. Say she's 190 at bed - do we correct her (give her a dose of insulin to bring her into the 140-150 range) or do we let it ride because she's already on her way down? Or is she going up? We have absolutely no way of knowing unless we test her 3-4 times in like an hour and a half to see what it's doing. We're not going to do that every night, obviously, for many reasons. But it's guesswork and we're not always right. It's sort of a crap shoot. This will help us tremendously there! And an alarm to let us know if she's going low?? Yes please! 

The wireless 20ft range on the remote/viewer is also super handy! We can leave it on her most of the time, but at school the teachers can have easy access to see what's going on as well. 

I'm really feeling good about this! Not so stoked about having to stick another object on her body - but the good news is that this one doesn't have to be changed every 2-3 days like her pump set. These can stay in 10 days (some say 14 is no problem!). Due to the fact that there is no 'infusion' as there is with the pump giving insulin all of the time, these don't get irritated or inflamed like pump sets, thus allowing us to leave it be for longer periods of time. Bonus points.

Anyway, long story short - we were given a few warnings that our insurance is one of the most difficult to work with (figures) and that she'd need to have 3 BIG lows (under 50) every month for 3 months to qualify (we try to avoid those at all costs, hello!), that it may be a long battle.  Despite all of this, two days before Thanksgiving we were told we were approved and covered! YES! Only a copay and our monthly fee for the sensors :) 

This is AMAZING news. I was giddy. We're working through the process now and hope to have the new G4 by the end of December. Merry Christmas indeed!

For a bit more on the fam, things here have been up and down as usual. Sierra's numbers have been a little erratic ever since Thanksgiving. We drove up north to visit Franks family (Grass Valley) and at first I think it may have been the altitude that messed with her and gave her a bunch of highs, then it was just lots of rich and different foods. We did our best to keep it normal. What else can you do?

When we came back, Max came down with some kind of illness. I know now it was a 24hr flu bug :| Awesome. Our first flu. Despite Sisi and I both having our flu shots, she and I both got sick Monday night. It was not pretty. Not by any stretch of the imagination. Following this flu, which is thankfully almost completely gone now, her numbers have been running pretty consistently high. I have to assume it's because she's dehydrated so I'm trying to shovel as much crystal light lemonade into her system as possible, because she's sick of water. She's 4. I can't really blame her. I'm not a huge fan of artificial sweeteners in general, but you do what you need to do with a diabetic kiddo and when you need copious amounts of fluids ingested this is a good trick. It's working, anyway. Hoping her numbers level out soon.

Christmas is coming and we're all enjoying the season. The tree is up (she helped me - it was a mommy & Sisi tree day! Max was asleep and daddy was on a bike ride).

All in all we just keep keeping on with the new norm here.

Sometimes I feel bad I don't share very much here about Max - I guess the design of this blog is to explore our life with diabetes, which is obviously very Sierra based due to the obvious.  I hope as he grows we can help him always feel as loved, cherished and connected to our lives as Sierra is. And he is - so it shouldn't be too tough. But I guess I find myself worrying about him feeling like he's a little in the shadows due to all of this. I'll always do my best to be sure everyone is included day to day, that diabetes isn't our life but just one piece of it that requires frequent attention. I think it will be fine, but I also remember being a younger sibling, and what it's like in those formative years where for some reason it feels a little like a competition. Those who are involved in our 'real life' know how much my little man means to me, to us, so they probably know this is a fruitless concern, but as a mom I guess you always want to be sure all of your kids feel your unconditional love. Its not always an easy balance when you get lost in tasks, but that's what I want for them most.

Sorry, side step there. See, diabetes isn't just about the disease. Not really. It effects your daily life, your family life, the way you do everything. You have to really think about all of the things you do, what you need to remember ahead of time - basically try to be a step ahead (when technically with diabetes you're actually always a step behind :) ). It's easy to slip into the day to day and ignore the big picture - Sierra's life - just to make it through. Sometimes, still, if I take a moment to reflect on what this means for her as an adult, as an adolescent, as a mother, it's a little more than my heart can take. I like to think I'm a relatively strong individual, but having a child with a chronic illness that is bigger than you can grasp with both hands can take a toll. So for now, it's the day to day. I mean what else is there? So many what ifs - what if they find a cure? what if they find some kind of temporary cure that gives a few years reprieve? what if they create something that is nearly as good as a cure? - you never know. So I try not to think about those future years, and focus on what I can do now for Sierra, and for our family, to keep normal feeling normal.

Here's to the season, and what was I most thankful for on Thanksgiving? My beautiful children, and research and advancements in medical science.

Indeed.

Nearly a year ago...

It's sort of surreal to think it's already (ONLY!?) been a year since Sierra's diagnosis. It was October 21st, two days after our return from magical Kauai with a skinny, tired, ill little peanut on our hands.

What a difference a year can make, hm? Now she's filled back out, has the energy of a marathon runner, and can even do her own finger pokes (when we let her, which we do).

I've learned about the ups and downs of diabetes. Of literal, constant, change. I've learned more about sugars, carbs, and how your body uses them than I frankly ever cared to know. I can eyeball a helping of _____ and pretty accurately accrue the carb count just by sight. I can change a pump set on a wiggly, uncomfortable and scared toddler. I've learned about battling insurance companies, and sometimes winning. I know now how to be hopeful and defeated at the same time and really be ok with that.

I can see what diabetes is, and what it isn't.

A year ago I could not do any of those things, and I never dreamed that I'd have to. This 'anniversary' is bitter sweet. We have come so far, our girl is hanging strong and learning more every day about what she's living with and will live with until a cure is hopefully found. She is strong, she is healthy, she is growing and amazing. At the same time, it's only been a year and it feels like a decade sometimes. That's the bitter part. Ever changing, always on your toes, awake every night (I love that I really thought I'd be able to only get up for a few months until 'things evened out' - her night numbers are almost always the most unpredictable no matter what we do!), trying to stay a step ahead of this amazingly random and insufferable disease despite it's best efforts (often winning efforts) to fool you once more.

She will be fine. She will struggle. She will be (better be!) responsible. She will sometimes fall down and need to be picked back up. She will just be another person, with another thing, and she will learn just as I have.

And of course, I wish she didn't have to.

But this was the hand we were dealt.

One year ago today I was on an airplane leaving an awesome vacation about to be gut-punched in the worse way two days later.

One year later we're all stronger, and we're always doing our best.

One year later - we're off of the shots, onto a pump, hopefully with a CGM on the way.

I hope that in 10 years I can say some magic system is in place that makes everything we're doing now seem positively archaic. I hope that 10 years from now, Sierra may NOT need to learn *everything* I've learned, only the things that are necessary. Meaning I hope a lot of what we do will no longer be necessary.

This is a long road... to the end really, and I know she'll be a strong person for it. That's the way of character building, isn't it? You generally find yourself during the harder times than the easy times. I just have to trust that what we do for her will build her confidence, her comfort, and her respect for herself enough to matter and effectively show her that taking care of herself and staying healthy really is more important than most other things.

We'll be entering Kinder next year, and I know the real world and the beginning of real social interaction and new situations are going to become more apparent. I think we have a few more years before her genuine self awareness with diabetes may come into play.

I'm glad we have more time. I don't think I'm ready!

But I will be.

To those that follow us here despite my randomly spaced updates - thank you. It's been almost an entire year, and we just keep looking ahead.