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.

So, what does that all mean, anyway?

It occurred to me late one night when my brain wouldn't shut off post-2am-check, that a lot of what I say here may make sense - and a lot of it probably does not. This is going to be a pretty detailed post, thus long, so bear with me if you can (or dare!).

I say things like "a set change" or "adding up her lunch" - which sure, sorta makes sense in a very basic manor, but my goal is to really give friends, family and followers of this blog a real insight into what our day to day journey is like.

I decided to get a little in-depth with you today, I hope you don't mind.

Recently, during some random conversation about a post I made on facebook (which my husband says I'm 'prolific' on... I'd say I'm an average user but who knows :P), I'd mentioned how math was a pain in the butt when you're tired and trying to make lunches for preschool.

Someone had responded, understandably, "can't you just throw a PB sandwich and some fruit in her lunch bag??".

Unfortunately, no, no I can't. In order for her days to go smoothly (on purely a glucose level related note) I need to know the near exact number of carbs she'll be consuming prior to every meal. And because we don't live off of fully packaged meals 24/7 - that means adding, subtracting, measuring and weighing to figure out what most meals mean.

Sure, I've been doing this long enough now that I know *OUR* PB & J sandwiches (which include a low carb per slice, 100% whole wheat, no crust calculation by moi) are 32 grams of carbs. That's with low sugar (no sugar added) jam, her bread, and a normal amount of peanut butter - which you don't have to count because it's high in fiber (which you typically subtract from carb counts if a given food is over 5g of fiber per serving).  Follow all that?

The fun part is fruit. I'm great at strawberries, ok at bananas (they're all so damned different in thickness and length, it can add up QUICK with weight on bananas!), and grapes are a snap (1g carb per grape essentially, unless they're monstrous, then I add it up a bit).

So, lunches aren't that bad, I think that day I was just feeling sorry for myself. The real trick is going OUT to eat once in a while. You know, like normal people and families do? That's quite a test for me, and sometimes I feel like the king of the world while others, a horrible, horrible failure. I don't really beat myself up about it, but I do feel bad when I royally screw up my eye-balling of restaurant fare. To be fair to myself, I think I'm actually pretty good at it MOST of the time, but it helps to have things like Calorie King (app for the iphone), and go off of the general count similar foods have to help me out.

We have a digital scale (The Salter 1470 I believe is the model) that you can actually type in the kind of food (over 1000 in the database), press enter, put your food on the scale and it will tell you how many carbs are in it - that has been a LIFE saver as far as fruits go, and sometimes pasta, too.

Speaking of pasta. Dear EVERY SINGLE DRY PASTA MAKER ALIVE: *WHY* do you think it is AT ALL helpful to put the *dry* weight amount for measurement? Really? So I need to cook 2oz of your spaghetti, measure it cooked, then be sure to write down your specific type and how many carbs are in it that way?

Who eats spaghetti dry!?!? Who measures out spaghetti dry for a meal? I mean honestly? SO annoying.

Rant over, sorry.

Here are two examples of pretty normal meals in our house - breakfast and lunch in this case:
Breakfast: Greek Yogurt w/ peaches in it (1/3 cup) - 8g carbs. Two turkey bacon slices: Free! It's all protein baby. Meats are free treats. 1/2 slice of toast: 7g; 3.5 strawberries: 3g; 4oz 1% milk: 7g. - Ultimately, a 25g meal. That's actually pretty low for most things, but with breakfast it's pretty easy. Eggs are a free food too! And cheese, olives, most veggies (under 1/2 cup - because most have fiber up the yinyang).

 

Lunch: PB & J: 32g carbs - 24 for bread (without crust), PB is free, 1 tablespoon(ish) low sugar jam: 6g (regular has 13-15g!!), 8 (yep we count it all) sommersault seed snacks - 1g each - 8g; one slice cantaloupe (weighed) 4.3g and finally 4oz Original Silk Almond milk - 4g. I like almond milk as an alternative once in a while because it is much lower carb and has a lot of good stuff in it (extra calcium, vitamins etc).  48g lunch - a little higher than I like, but she needs a full meal so it is what it is. 

I typically try to keep most meals between 25-40g. When we go out we have the occasional 50-55g meal, and it's not the end of the world, but at home we keep it pretty simple. She eats a ton of veggies, lots of fruit, and lots of meats.

We also do this: (Finger poke, blood check - Sisi's actually getting very good at doing them herself with us watching. She can't read #s yet, and doesn't know what they mean, but she can poke her own finger and collect the blood in the meter strip!) 10-12 times a day, and always before food.

I'll end the food portion of this on that note. This is going to be a long post :)

On to the 'what does that MEAN exactly' portion of her pump usage... today I'm covering a set change. Make no mistake, it deserves bolding. It's a pretty foreboding thing for a 4 year old, but she does her best (and so do we, it's hard not to get frustrated when you're trying to be sure everything goes in right and they're freaking out or wiggling away... if it messes up, you start ALL over and that isn't fun for ANYONE).

I decided to keep my iphone handy today while we did our every 2-2.5 day set change so I could take a few pictures to guide my way through this. So here we go...

Step 1: We fill a new canister tube with fresh insulin that will replace the one we put in 2-3 days earlier. Insulin can stay at room temp for roughly a month, but in a pump it runs a little warmer (especially on hot days or against a childs body 24/7), so it's best to change it out if needed when you do the set change (at least for us).

Step 2: This is the not so fun portion. This is the set device we use, you can see the needle tip, and about a centimeter down (I think you can click to enlarge the photo) you can see the small casing around the needle - that's the cannula tube that is inserted into her body with this needle). This device is helpful because we push down on the sides and it injects the needle quickly, more or less at the correct angle needed to get into the fatty tissue but not hit muscle etc, and then we can quickly pull out the needle while the tubing stays injected. You'll see an image of this together and set up towards the end so you can eyeball how it stays after it's in. Obviously, we always wash our hands and prep the area with alcohol wipes. Infection is hard to avoid as it is, or at least irritation, so being extra clean is pivotal. 

 Step 3: Remove old tubing from the pump itself, remove the old insulin canister (almost empty) and insert the new one. From there, we prime the new tubing and her new set so that insulin is delivered exactly as we expect it to be. This also removes any air bubbles that may have been too difficult to get out of the insulin cartridge originally.

 Step 4: (This is her last set - same idea though) - Plug the new tubing into the new set on her bottom (or tummy, we rotate areas).
 

 

Step 5: The most important step: Sugar free chocolate square for 'not freaking out'. Nice work, Sisi!

She wears her pump nearly 24/7 (not in the tub, though technically they say it's waterproof...) in a spibelt fanny pack made for kids. It's perfect! She loves it. 

So there you go! Hopefully it makes a little more sense now :) Usually it goes ok, some days it goes horribly, other days it's a dream. At 3am, it's not very fun, but so far that's only needed to happen once when the site was kinked (bent cannula inside - it was on her tummy and too close to the muscle when she moved so it got clogged and wasn't delivering her insulin, so she was high all night!)

If there are any questions you have about things I put out here, feel free to ask... I live it, so sometimes the littlest things don't occur to me.

We're hanging in there, she's doing great, that's the best we can ask for.

Camping - Pumps - End of Summer!

What a whirlwind. Summer is officially crazy with two small children :)

I want to give a quick update while these two wild children are allowing it!

Life on the pump has still generally been pretty great. It has it's downsides, but I still feel like we see far more upside than down.

We recently (ok, a handful of weeks ago...) took a family camping trip to Lake Tahoe. We live at sea level, so we weren't sure what the change in elevation would (or wouldn't) do with Sierra's blood sugars. We packed up loads of extra supplies and crossed our fingers.

During the 3 night camping adventure, we stayed in the joint-family Tent Trailer. Which I have to admit was a nice step up from tent camping, and the kids were stoked to share a queen sized bed on one side all to themselves.

We floated the truckee river with our 2.5 and 4 year old - and it was fun. We took a sky-bus up to the top of Squaw Valley resort to the 'high camp' and went to their pool. All in all, it went pretty well. I'm not a great camper with small kids - sadly - but my husband will tell you it was a total blast (it was probably fine). I'm working on it ;)

Sadly, one of the big down sides for me were Sierra's numbers. She was high high high, then she'd slam low out of no where. I think between altitude, excitement factors, heat, and random vacation food she was just all out of sorts. We had a few pretty amazing melt downs as a result, and what can you do? It's not her fault, it's just the way it is.

I wasn't a huge fan of set changes in the dirty wilderness, either, but that's another story. It wasn't a HUGE deal, just one more thing to think about.

We've found, unfortunately, that Sierra needs to have her set changed out every 2-ish days now or the site itself gets very irritated (and I think near infection) and thus not only painful for her, but less effective for insulin delivery. That means a big shot every two days vs every 3 days, which probably doesn't sound like a ton to the adult population reading this, but for a 4 year old it's not the most pleasant scenario. According to Sisi, though, it's still far better than daily shots, so we go with it. Sugar free lollipops have been aiding my attempts at 'don't freak out and wiggle like a crazy person while I'm trying to inject you with a tube'. It's been pretty successful. I don't mind bribery at all in this situation.

What else? We still go through a pretty standard "pretty good for a few days, then a random bad day" cycle, but we're growing accustomed. I like that we're able to keep her within range much more often now - with far fewer lows than before we were pumping. That's all looking very good.

Max now asks if he can eat when he sits down for a meal ("Mama I can EAT?") - Sierra asks every single time after her pump "motors" (that's what we call it when it delivers insulin because we have it set to a vibration mode so it sounds like a motor to her). It's pretty cute.

I am continually impressed with Sierra's aptitude for really understanding a lot about her disease, her ability to listen and go by the rules for her pump (a tube + a light up thing WITH BUTTONS?? 24/7?? so tempting!!) and for eating/foods that are ok. She's an amazing little girl. Sometimes I still have a moment of panic thinking about the years ahead, but all in all, I know we're all just doing our best and she'll be ok as long as we're there to support her. That and science and research/development ;)

PS: Smores w/ sugar free chocolate was a HUGE hit!

A few pics from our camping trip:

A little behind... but two 'news' for us.

First, wow, my blog 'keep up' abilities are flailing during summer! Yikes. I feel like we've been constantly on the go with little time to really sit down and come here with some updates for anyone who's listening (reading).

Thanks to all of those leaving messages, I do get them, I do read them, and I do appreciate them. I hope to start actually being active in replying too - but like I said, my time here is somewhat fleeting between the two kids right now. I really do love reading your responses and notes for us, though, so please don't stop if you have something you'd like to say!

We're moving into 'month 2' (just barely) with our Animas Ping.

As with most things diabetes, having a continuous 'great' streak doesn't always seem to work out. Though I genuinely do believe the pump has leveled the playing field a great deal, there are still good days and bad days. Sometimes consecutively one way or another. We've had a few more ups and downs lately, but I think her overall averages are more predictable now than they ever were before.

I'm becoming very comfortable with pump functions, with the ablities given to us like temp basals (where you can temporary increase or decrease the continuous 24/7 drip amount at any given time for xyz hours by xzy%). I think temp basals are helping Sierra get more sleep on those nights when I check her at 2am (which I do, every night) and she's a little under 100 and I want to ease off on her amount for an hour or an hour and a half to let her come back up WITHOUT waking her and making her coat her clean teeth with sugar pills.

Since our last post we've had two, I guess you could call them, mini-victories.

The first was our first bout with a fever. A high fever (102.5-103) for about 24 hours. Sierra caught hand food and mouth from her little brother and it was a little nerve wracking knowing ahead what was coming. But after reading some helpful forums filled with advice from other parents of t1 kids and sickness, I learned that to battle the high numbers she was facing as a result (fevers/dehydration cause highs, which can be really difficult to get down since you can't really force-hydrate a 4 year old all night) with - you guessed it - temp basals! Just in the other direction :) I upped her dose about 30% for 4 hours here and there and we did pretty well. We made it! She was a trooper despite eating being a little difficult with her throat being sore for a few days. I was really worried but she was great.

Our second 'first', was Sierra being a flower girl in a friends wedding last weekend! Not really a diabetes related first, but taking her to a wedding (just she and I) and guessing at buffet food carb counts (right? good luck!!!) and - yep - CAKE! plus dancing and the nervous energy of walking down the aisle by herself... well, turns out it was a good mix for her, because she stayed between 90-150 ALL DAY.

Awesome. So awesome. And seriously, how cute was she in her dress?

She forgot to throw her pedals but the fact that she didn't 4yroldFREAKOUT on not having me walk with her was pretty epic on its own. I was very proud of her, she was a great date that night.

And not to leave Max out, he's started picking up on our habits with Sierra (she asks "Can I eat now?" pretty much every meal after her pump 'motors' as she calls it), and is pretty consistently saying "I CAN EAT!?!?" He's very curious about her kit, but knows not to mess with it's contents, which I think is pretty cool for a 2 year old.

Speaking of Max, for a moment, as he gets older I start to wonder about what it will be like for him in our little family and growing up with a diabetic older sister. I think a lot of good, solid character will be built in the long run, hopefully a caring, able little guy. But I guess the mom part of me worries about the juggling of attention, and how to let him know and always help him remember in the mix of the craziness that he, too, is important and loved. I don't doubt we'll do our best to show him, but I also know how easy it can be to get lost in the day to do juggle with all there is to do for our little diabetic. It is pretty consuming, and it does require pretty frequent attention and it does make certain things 'different'.

I just hope he doesn't ever feel too lost in the shuffle. That'd be such a bummer. They're both special kids.

Those of you without diabetics may wonder if we worry about Max being diagnosed at some point.

Hell yes, we do! But, not overly. Though his percentage of likelihood goes up slightly due to Sierra's diagnosis, I think worrying too much about it defeats the now. We are doing an annual test for anti-bodies in Max (and myself until I'm 40) to see if we may develop type 1, and so far we're both clear. It's a relief, at least for now, to know we can focus on this big learning curve and life change without the additional child thrown into the mix. It's not unknown for some families to have 2 or 3 children with the same diagnosis, which is daunting but I imagine much like we have for Sisi - you just keep calm and carry on. What else is there to do? It'd definitely add more complication to our daily lives, but it's sort of like adding a second child. At least we'd know what we were doing and that's half the battle.

(Well, ok, SORT OF know what we're doing, sometimes it's still a huge guessing game, but hopefully a few years from now we'll have an even better handle on more situations as we experience them).

For now, though, we'll just go with the flow and keep our eyes on the horizon.

On Semi-Cruise Control....

So, despite my doom and gloom fears of making 'the big switch' to pumping life, I have to admit. I'm still skeptically waiting for the big bell learning curve I've been so terrified of. Not to say it hasn't been challenging here and there, and required a little new routine change and mini-lessons adjusting to another new normal, it has, but overall I have to say I feel somewhat spoiled - at least so far. I'm afraid to put that out there in writing, but so far - honestly - it's been pretty wonderful having a pump.

We had one failed set change (looks like the site got a small infection and decreased the amount of insulin making it in or something...), a few confusing mishaps, but mostly I've just been making basal dose adjustments as needed (or at least how/when I feel they're needed.. so far it seems to be working) - those are the 24 hour constant drip rates from the pump. All in all, we've primarily been hovering between 80-130. We have a few highs, fewer lows, and I am at the moment just grateful for it! I'll take it as long as I can and keep rolling with the changes as they come - and I know they are constant, so that doesn't really bother me with this new technology. Adjust, watch, check - voila. Easier to see the adjustment and whether or not it's working now than I could with the single, 24 hour Lantus dose every day (shot) instead! Really pleased as punch over here.

Sierra still loves her pump, but doesn't have the same mellow anticipation for set changes (as I expected would happen...). Doing a site on her tummy is more difficult now because she sucks it in or tries to turn away while we're preparing to get it in there... I get it, needles - scary - suckage, but she still prefers it over daily shots, so eventually we get her still enough to make it happen.

The removal of sites was a big issue until I recently discovered Medi-Sol thanks to a few fellow T1D parents suggestions. Magic!! I am in love with this stuff and so is Sierra. It works wonders for her fear of removing old sites, it's painless and fast :) Woohooooo!

We had a field trip (family field trip) up to the city (San Francisco) to visit the Academy of Sciences last Friday, it was fun watching her explore, with the ability to correct her, or give snacks and cover them without the big shot-to-do we were used to. No big deal! This was her in the aquarium section getting a check (finger poke/blood glucose test - that's what we call them, checks or pokes) - she's such a trooper.

It can't be easy being 4 in a super cool place but having to stop to get your finger pricked, but she sure handles it gracefully most of the time. I am increasingly and always impressed with my brave, strong little girl.

So... I guess this is just a check in for us, the pump is going really well - we're still figuring out the finer points (like swimming and unplugging, covering and not covering, and how to tell when sites are bad or if something she had just needed a little more insulin than other things....), but I feel very strongly this was the right choice and I am sure Sierra agrees!

First Impressions...

As of today we've been 'pumping' for all of 5.5 days. It's been a little trial (and some error), but the general swing of things seems to be going relatively smoothly compared to what I was preparing myself for. We still have glitches we're going to need to work out, set changes that will go array, and the battle over taking the old set off (baby oil + hot bath are our friends - unfortunately we do that at night time, which isn't ideal for a new set because we need a few hours to be sure it's working properly!). Overall, though, I really can't complain.

I especially can't complain because my little girl LOVES her pump. I mean literally, she loves it. She talks about it all of the time, and about how great it is. She shows it off. She is pretty careful with it (for a 4 year old), she listens to the 'rules'. She expresses how happy she is that she doesn't need shots every day any more.

So really, who can complain about that? Like I said - it's not all puppies and rainbows, I may or may not have messed up a set and done a new one a few hours later that was questionable (but probably fine, but who knows?), I may have given too much or too little here with insulin - but generally, her few lows have been less severe (we haven't had anything below 59! That is HUGE for us! Mostly mid-60s if they're lows now which is much preferred to 40s). We've had a few highs which we're working the kinks out on, generally night time has been a little easier - we just have to get the dosing right and we should be doing pretty well.

It's early. I don't feel like throwing it out of a moving car, smashing it with a hammer, or anything else crazy yet. I hope this sticks. I want to knock on wood and hope the kinks we're seeing in the process that we're trying to iron out are the worst. It's a little frustrating but I knew there would be weird changes needed and to just roll with it. Not be afraid to keep giving and just watch what happens and learn from it.

It's been nice for us, and great for her!

Frank told me last night that Sierra had a little conversation with him about it last night - something to the effect of:

Sierra: "Daddy I don't have any diabetes any more because I have a pump now!"
Frank: "Oh, well sweetie you'll always have diabetes, but we don't have to do shots every day now, and that's great right?"
Sierra: *thinks about this* "Oh. Well. Yeah I guess that's ok because I love my pump and it's ok as long as I get to keep it FOREVER".

Sad and cute all at once.  What an awesome kid.

And so the journey continues...

Tomorrow is the day.

That's right! It's arrived... our pump start date.

For the last week, Frank, myself and even Sierra have worn her Animas Ping pump during our one week 'saline' trial. Where we learn how to properly load, inject a set (more on that later) and most importantly, see what it's like to be hooked up 24/7 (oh, and how to use all of the fancy buttons and functions of course).

This has been a long process for me, mentally and emotionally, I think. A lot of internal stuff going on, but while part of me feels a little sad to see the tube coming out of her little bum-cheek, a bigger part of me sees a little hope. A little more freedom. More flexibility (for her AND us). More control over smaller doses to help us when 1/2 a unit is just a little too much with a regular shot, but finding the right 'in-between' is a guessing game at best.

So far, I'm pretty amped about this change. Sierra had her set put on last night for the first time, and she was AMAZING about it. No numbing. No moving, she was awesome. She even said it didn't hurt (wow really? I felt a little sting when I had mine put on my tummy!). She's had it on since and been very good about it. She carries the pump in a child-sized "spibelt". Sort of like a tight, small fanny-pack that is popular with runners to keep their stuff on them w/o it bouncing around with each step.

She didn't like sleeping with it on, which I get, there are clips holding it together that are hard, so we let it just hang out, and it worked (fingers crossed here, knock on wood). She's at school today... I'm interested to hear how it goes :)

Anyway... tomorrow is the big one. We go into the doctors office and they work on all of her numbers with us and we go LIVE. We put insulin in and she's "shot free" aside from the every 2-3 day set injection we have to do with the pump cannula.

Here's the skinny on sets... essentially it's a slightly larger needle with a small cannula (tube) attached to it. We do a quick inject (the sets come with something that does this for us w/ the press of a button, more or less) and then pull the needle out and the tube stays in, then we attach tubing from her pump to the set. It's awesome! One click you're in! You can remove the tube/pump attachment and just keep the set in (safely) so she can get in water or whatever - even though it's water proof there isn't any real reason for us to keep it on her for a 15-20 minute bath here and there. Nevermind the ocean - sand trap!

I'm excited for this next step, even while I'm cautious and a little wary. This is not the end-all-be-all, but it's the best I feel we have right now, and hopefully I'm right and the switch from MDI (Multiple Daily Injections) to the pump will be a positive thing for Sierra and our family.

Sadly, this will not diminish or stop my nightly checks (Yep, still doing that!), but I'll have some options available through the pump now that can hopefully keep me from having to wake her for any issue. She can sleep peacefully if she's high while I instruct the pump to give her a little extra insulin, or I can slow down her constant trip if she's moving out of her safe-range and night so that she doesn't drop any lower (ie: I won't have to shove grapes in her half-sleeping mouth!).

These are good things. I anticipate (and have been told in all truthfullness to anticipate) that there will be a rough few weeks. Some have said I may feel like throwing the damn thing out the window after a week or two - but to stay strong, to know it's just a minor bump in a lifetime of aid.

I'm going to try and go in with that. Know that I will probably mess up, but I will learn, and I will learn as fast as humanly possible. For Sisi.

Wish us luck!

File this under 'bonehead'.

Well, I finally discovered the tricky problem we'd been having about Sierra's "mysterious" non-sense making highs post-lunch time at school until evening, when she'd drop low all night.

Despite my husbands request that I try to find a day to go with Sierra to school all day to observe and see what was going on, I had somehow convinced myself that would be futile. Not just futile but I'd all spend all day looking for everything wrong and stress myself out doing so.

Wow, I was wrong. Oops? Lesson learned. It's my fault she kept having the ongoing issue twice a week that hopefully (at least the nurses tell me it won't) harm her long term at all since it was only a few times a week for a couple of months. Still, I definitely have the guilt, but it's mixed with great elation and happiness that we discovered a very boneheaded mistake on my part was essentially causing the problem and now it's 100% addressed and she's back to normal. Just like that.

So what was it?

Well... so let me back up here. When I first trained and sent Sierra back to preschool for a few months I did all of the shots, went over I thought everything (and probably 'mentioned' that there were 2 kinds of insulin, however - since they'd only ever need to give her short acting at meal times I didn't go very deeply into that portion). As they started taking over the lunch time shots I sent only her Humalog (short acting) insulin to school because there was really no reason for both.

Then I got a nifty 'wallet' made by a friends grandma for Sierra's insulated lunch box "D-kit" and decided to include both kinds of insulin because there was special spaces for everything and that way if we ever wanted to just go out after school pick up I'd always have things for dinner if we needed it (when she gets her 24 hour dose of Lantus).

Brilliant! So I just started sticking it in there.

Major flaw? I neglected to make note of this to the teacher who does her shots. I didn't point it out. They both just say "insulin" on them. No indication beyond that. So... despite the different colored labels one would probably innocently assume I just put extra insulin in there as backup. Maybe we were trading brands? The vials are similar, I didn't mention it, so it must not have been all that important.

D'oh on me. Big time.

Live and learn.... live and learn. This is a constant adaption process, I'm just trying to keep up.

I'm glad we found the problem, even if it took longer than it should have and unnecessarily stressed us all out more times than it needed to. Moving forward...

This is titled 'Frustration'.

Ah diabetes. Diabetes, diabetes, diabetes.

What else is there to say?

This has to be one of the most frustrating, challenging, non-conforming, difficult 'thing' I've ever dealt with in my life. I am sad. I am frustrated. I am sick and tired of the constant shift in blood-sugar tides that my little brain can't seem to comprehend.

None of it seems to really make sense.

Writing something off as "just a number" doesn't seem to be a good solution for me. I can't see a 280 and just say "huh, there it is. Let's correct it and move on". Especially not when my little 4 year old bounces around like a tennis ball in a heated match. I can't keep up with the constant shift her body is making. I could do the same thing, the EXACT same thing every day of the week and see different results, everything I think I'm doing right being completely wrong with maybe one or two 'sorta right' moments in-between.

 I feel under-supported by my Endo-team. I feel like I don't have anyone to really 'talk' to about the numbers, and once every 3 months isn't near to cutting it for us at only 7 months in the game. The process of calling a nurse line, leaving a message, HOPING they call you back the next day (and if they do - it's always when you're putting someone to bed w/o your phone, or taking that 2 minute shower)...  I hate that I don't know the explanations or fixes for the issues we frequently run into (different issues, just frequent issues in general), and it takes weeks to get any kind of real response formulated.

Sometimes I hate that there are apparently NO good answers - just 'that's diabetes'.

That's not a good enough answer, damnit. Not by a long shot. Not when your 4 year old little girl depends on YOU to care for her because she can't and whatever you may be doing wrong now, or not responding to quickly enough, or often enough to, can cause her great trouble down the road. How long a high is too high? What if she has insulin on board - LOTS of it - but she's not going down for some unforseen (non-carb related) issue? What if it's NOT sickness and she's STILL high despite double, triple, quadruple her normal meal ratio of insulin being given?

I feel like throwing my arms up and calling a time out but there is no such thing. My brain can't shut it off. I can be in a conversation about any one of a million things and in the back of my mind I'm still thinking about carbs and what caused this or that or what else we should try to do to fix her 'highs after lunch at pre-school every single time' issue.

I'm tired. I'm only 7 months in, and this is her LIFE, and *I'M* tired. Really? I know that probably as an adult and once her constant state of growing, hormones etc level out it will probably a little less crazy, at least I hope for her it will be, but I'm already just burnt out and it's only the beginning.

I don't like not having the answers I need. I don't even know where to try and find them half of the time, and that's almost more awful.

Yeah, I'm that mom right now. I'm venting. I'm feeling sorry for us while still trying to figure out how to successfully 'fight back'. It's a constant struggle, it's a small breath of relief if we get a day, or even half a day of 'normal' numbers.  I feel like that's rare.

I'm still waiting for insurance to approve a pump we should clearly have. I started the process, which I was told typically takes 1-3 weeks, about 2 weeks before we left for Maui. So about close to 7 weeks now, we've been in this back and forth BS process. What a joke. And do these people have anything but FAX machines? Who has a fax machine! Get with the program! Welcome to fricking 2012.

I have a 2nd 'pump start' appointment for the end of June and I had better be able to keep it this time. I already had to move it back a month once, I don't see what the problem is here. Pretty standard process, we meet all of the criteria. It's just irritating. I feel like calling someone over there and asking if they'd like to be the one responsible if my child ends up having a seizure or in a low coma because of their stupid lazy paperwork process. She's a real person, and I want her on a pump to help try and achieve better, more manageable results. I'm starting to see the uphill battle we're all going to face from here moving forward. It's bleak, people.

Sorry for the downward post here, but it's my blog and this is where we are.  Add in a 2 year old who has found his voice (his voice mainly involving screaming, yelling in frustration, or crying hysterically over something) and uses it more than your average bear and I have to admit I'm at ropes end right now. I just need something to be easy. Just for a little while. Even just a little easy would be ok. Really.

One of 'those' moments.

When I say 'those' moments, I am probably typically referring to a time when I am remembering what it was like before diabetes. And it's funny, the little things that you take not necessarily for granted but just genuinely shouldn't and wouldn't have to think twice about under normal healthy-life circumstances.

Mothers Day for some reason felt bigger to me this year. I added a new badge (if you will) to my list of mommy duties... a pretty major one. Not just your bumps and bruises nurse badge, but the external pancreas badge. It's been very hard fought, and sometimes I still fight for it, but it's been a big deal in my mom-world life. No, I'm not trying to toot my own horn here, I'm trying to celebrate the ability to adjust and evolve! As a person, as a caregiver, and as a mommy to a little diabetic girl who really does need me every single day right now.

This is a big load to bear, worth it - obviously, however daunting and all encompassing it can be at times. I remember last year for my 30th birthday my very dear friend, Bethany, and I took a whirlwind 3 night vacation to Scottsdale for a spa weekend getaway.  We joked about making it an annual getaway (or at least making AN annual getaway!). It was fabulous! So much has changed since then. As much as I would love to get away I'm not sure how easily I could do it (and I don't mean logistically... I mean I don't know that I could do it).

Anyway, a wonderful day was set for me. I felt so appreciated and honored, so loved. I had time off (Yay!), I got hand picked flowers (double yay!) and a thoughtful card from my wonderful husband with a special surprise inside. In the afternoon we decided to go downtown to check out the antique fair going on - a very mothers day-ish thing to do, I was excited. Sadly, Sierra wasn't feeling it. Not because of any diabetes related things, she was just totally being 4. Ah 4. We lasted about 5 minutes in the fair before dragging her to gap to get new sunglasses because apparently it was too windy, and too bright. And she needed water because she was dyyyiiinnnnggggg of thirst right that minute. So we decide to go to a local pub, grab a beer and a water for her and just relax before dinner.

Here's the 'moment'. We're both hungry. We don't have her insulin on hand because it's a short outing and she had a snack before we left - and we're eating dinner in 30-40 minutes anyway. Sadly... the option to buy food for ourselves wasn't going to pan out very easily. What do you get? Theres nothing on a pub menu that she could nibble on (and what 4 year old wouldn't want snacky greasy foods placed in front of them on a platter anyway?). And there it was... ahh the blissfully easy days of pre-diabetes. Enjoy it folks. The ability to grab a snack for you and/or your kid at will without having to hunt down olives or string cheese or straight up meat is a time treasured thing I miss. Thankfully once we are on the pump we can work around this easily, but on our current program it's a little bit of a crappy reminder.

Anyway I digress, I don't know where I'm going with that. I just mean to say a lot has changed for all of us. Especially Sierra. Hell, our whole family. I wonder often how this may effect Max, I mean for better or worse he's along for the ride. I wonder about her future, hoping and thinking of a bright spot where she will be everything she wants to be in life. I wonder about her additional challenges, her relationships, her learning, the effect her lack of a functioning pancreas.

I think about all of these things on a fairly regular basis knowing full well I can only do what I can do, and so can she. It's still difficult to wrap your head around sometimes, even living it day in and day out.

These moments pop up now and then and really all you can do is shrug, give a sad smile, and move on. So I have to read every label, count every goldfish and grape - it could be so much worse. I'll take it. And she'll be fine.

Now if our pump would just arrive already...

Oh, hi! (or Aloha?)

Sooo, it's only been (nearly) a month since my last update. I know you've all just been on the EDGE of your seat waiting for a new post....haha... so here it is.

Hawaii has come and gone and after a good month of parental stress regarding traveling with a little diabetic I couldn't be happier to report a fantastic trip with pretty darn good numbers to show for it! Truthfully, for the first 4 days of our 7 day trip she was almost NEVER out of our desired 100-150 range. It was crazy.  That never happens four days in a row, nevermind with me having no true idea of how many exact carbs we're looking at during the breakfast buffet and random bread sizes etc we experimented with the whole trip. I'm feeling pretty proud right now, a moment of 'pat yourself on the back' if you will. I think we had one bottle of lantus go bad due to heat (although I carried an icepack in our insulated lunch box that we use for her supplies, I think one day at the pool it just didn't cut it).  She didn't have any lows under 60 - which is wonderful for us, and that didn't even show until day 5. So awesome. We did start to see some pretty high numbers when the Lantus petered out, but that was easily remedied with our backup! Preparation paid off!

This was truly a redemption trip of us, for those of you following (or new), you'll maybe remember that our last trip to Hawaii (Kauai) was October of 2011. That's right, the week before she was diagnosed and was clearly off. She looked thin, was drinking ridiculous amounts of water, and hardly sleeping. So... while I know we had a good trip and I wouldn't take it back - it's absolutely overshadowed by the whole coming back, finding out she was diabetic and spending 3 days in PICU thing. I see photos and know we were enjoying ourselves but think "oh, that was when she was pretty sick and we had no idea". This trip made up for it, Hawaii redeemed :) Like it's Hawaii's fault right? Hah!

I started the pump-obtaining process (Animas Ping) about a week and a half before I left. Theoretically we should've had it a few days ago so that we could get started and attend a pump start appointment on May 17th - sadly, it's still stuck with insurance so I don't have that pump in my greedy little hands just yet. I had to postpone, hopefully no later than mid-June but I'm waiting to hear back. I'm going to wear the pump for 7 days during the saline trial, then transfer it to Sierra for the remaining 3 days only (who wants to be the one to explain to a NOW 4 year old that we're going to wear the pump but still have to do shots for 3 days? Cruel I tell you! I get it, but cruel none the less).  That way I get used to pushing the buttons and doing a 'set' change (which is what they call when you put in a new tube/needle and fill the pump w/ new insulin). You typically only change every 3ish days, assuming all is going well, so that will be a big benefit assuming we do it correctly and don't have trouble with kinked tubes or other things I hear about. We'll hope for the best, it's going to be frustrating at times, as are shots - though I feel like I have a pretty good handle on those these days - but it's a learning curve and I'm prepared to take it on.

An interesting point out of left field for you - I still get up 95% of nights between 2-3am to do Sierra's blood sugar, often she now sleeps through the pokes (thank goodness), and she's great when I have to wake her for the random low so she can consume some sugar - but I think my body is sadly adjusted to never getting a full nights sleep. I'm used to just being tired, and maybe once or twice a week it completely catches up with me and I feel like crying when I have to roll out of bed, but I do it, and life goes on. Funny how you adjust, isn't it? Sometimes I just say up until midnight and if her number looks good I'll let both of us sleep a full 7ish hours, which is FABULOUS, but I try not to do it too often because then it's even harder to get up the next night at 2 again. I think the hardest part of sleep deprivation (even when adjusted to it) is the 3pm hour. Right when Max is getting up from his nap and I'm 100% ready for one. Ah well. What are you going to do, right? Those friends of mine out in the non-virtual world, if you ever wonder why I look so damned tired or 'busted' (as Frank and I lovingly put it) at times this is why ;) Makeup can only do so much some days! I'm usually ok though. We're adapting pretty well, I suppose.

And now? A virtual slide show!

Until next time... Aloha!

Movin' along.

We're continuing on here in D-land at a jagged, but somewhat steady, pace as usual. I think the difference of late is that I feel more adept and accustomed to changing things based on completely random elements like whether it's raining, if she had a few lows the night before, or if someone randomly sneezed in China. That sort of thing. I'm getting better at 'on the fly' ratio adapting. For those unfamiliar - I mean insulin to carb ratios (how much insulin she gets per grams of carbs). This has been a helpful adaptation, I think, because I feel a little less stressed about the unknown in regard to food situations and the like.

April has been a very surprisingly busy month both professionally and here at home with the kids, so I apologize for the lack of updates lately. I can't say that there have been any major telling swings here in our world, but I did put the paperwork through to get an Animas Ping pump lined up for our little diabetic hopefully upon our return from Maui the first week of May! This is exciting, I feel like we finally are moving forward with something we've painstakingly gone back and forth over for a good 3-4 months (rightfully, but still, it's tough to make that kind of decision). Ultimately I know that pump therapy is going to be another big crazy shift for us - and that it's the right move to make for Sierra and our family as a whole. I know there is a world of benefit that's going to come with this new curve ball, but at least I'm the one that threw it (more or less) by pulling the trigger and getting it all in motion. It feels good to have a 'plan' - thus far I feel like I've been in reaction mode. Ok, so technically you're ALWAYS in reaction mode where diabetes is concerned, I just mean in response to how we're dealing with it. Going to a pump is an educated guess WE made - and it feels good. It feels right.

We've also decided to contact the local Dexcom rep. We're going to start the process to hopefully get a 'CGM' (continuous glucose monitor). I could probably spend an hour trying to thoroughly explain what that is, and it may be interesting to .01% of you in that kind of detail, but suffice to say it's essentially another tool to give you an idea at a glance of a diabetics current blood sugar level. Sadly, these aren't 100% accurate and are typically running from what I understand anywhere from 10-20 minutes behind their current levels, do have false alarms, and need to be frequently calibrated (and doesn't replace the need to finger prick as often as we do already for the most accurate information) but those reasons aren't why we decided to go for it anyway. Trends. It shows you *trends*. Is she probably going up? Or is she coming down? Staying even stephens? GREAT! This information on trends is so important to us, especially considering how often we run into hypoglycemia (low blood sugar) in the middle of the night for random unexplained reasons all too frequently in my mind.

I can't say I've been super happy with Sierra's numbers lately, but we HAVE (typically on a larger scale) had fewer bad lows. We've also had more highs, but apparently we need to avoid the lows more at this point. An interesting thing about Sierra is watching her numbers on her school days. Maybe those of you with young diabetics can tell me if this sort of thing ever happens to you guys:

For a while, we noticed Sierra had MUCH higher numbers (despite the same or slightly MORE aggressive insulin amounts on school days - administered by the teacher after my training). We thought food might be the culprit so for the last few weeks I've been feeding her breakfast, sending her with lunch (with dosing info/carbs listed on the food etc). Her mornings have been better/normal - but now every single school day after lunch/nap - she wakes up pretty high. Like 350-450 high. What's interesting is that her insulin dose is almost to the point of being *doubled* for lunch on school days vs home days - yet she's still coming out high.

Then, inevitably at dinner she needs additional insulin (called a correction - insulin added to the measured for carbs insulin) to help bring her back into range - and then she ends up low all night. It's difficult because she does need some sort of correction, and her correction scale is very very scaled back - very low dose already, so I'm not sure what's up with the all night lows.

Last night I decided to go for it and stay up until midnight working, do Sierra's night check, then ahhh blissfully fall into slumber for an entire 6.5 hours STRAIGHT. That's right. UNINTERRUPTED 6.5 hours of sleep. Heavenly, right? I was foaming at the mouth at the idea, so I stayed awake and forced myself to work. She went to bed at a perfectly respectable range of something like 150-200, I can't remember the exact number and I'm not looking at that excel spreadsheet again today thank you very much. Anyway, I go in at 12:30, soooo ready for sleep and proud of myself for making it so long despite being a sleep deprived zombie mom, give her a poke - and am alarmed to read a glaring and somewhat scary 39 staring back at me. I fill her with a box of juice, a 4g glucose tablet (which usually in itself brings her up 40-50 points on her blood sugar reading - quickly) and two low sugar special fruictose sweetened cookies made for diabetics. Anyway, probably somewhere around 24g of carbs - which is no small amount for Sierra, but I wasn't risking anything less if I planned on sleeping at all that night.

I waited, she was up to 120 and finishing her cookies 20 minutes later so I felt that it was safe to let her go back to sleep and finally crawl into bed myself. Sadly, the dream I had about that whole 6 hours straight stuff was clearly smashed to smithereens. No, I set my alarm instead for 4am (it was 1am at this point). When I got up at 1am, stumbled pathetically into her room and ran another finger poke test, I was pleased to see a shiny happy 178. I felt she was safe to go until 7:30/8am when it was time to get up.

When I did get her up for breakfast around 8ish, she was 59.

*sigh*.

Her numbers have been fantastic today, last night was way over my head, as is this whole randomly high-post-school-lunch (no she doesn't swipe other kids foods, and she goes into circle time then straight down for a nap one lunch is over... whaat??) It's pretty much a giant mystery and a pretty frustrating one. Do I keep increasing her lunch time school day insulin? Or is that causing her to go low all night (unlikely but it's an interesting trend none the less)?

I hate these kind of diabetes mysteries. Its the same food she has here, more insulin, and theoretically she's MORE active at school (which typically LOWERS blood sugar)... so.... what the hell?

My brain hurts just thinking about it.

Sorry for the novel like entry, it's been a frustrating trend I can't seem to break.

Tonight I'm staying up again until probably midnight. Wish me luck, I sincerely hope to find her in a better range.