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.

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.