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: