Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Dear New Friend (The one whose child was just diagnosed with Type 1 Diabetes),

Your sweet child (no pun intended) was just diagnosed with type 1 diabetes. I know you woke up today in the haze of this whirlwind, and I realize you may wonder if this is actually reality, or some weird dream-like state of consciousness you never knew existed. Whether you are familiar with what type 1 diabetes is or not, you are probably in shock and doing your best to take in the enormity of the situation without panicking.

In the coming hours, days, weeks, and months you will have information thrown at you from a million directions. When you turn to the internet, it’s possible you’ll end up tripping and falling down a rabbit hole you never saw coming. In this age of technology, there are a million people with a million opinions waiting behind every click. Unfortunately, not all of the information at your fingertips will be helpful — or accurate, for that matter.

2015 marks the 10th year since my daughter’s Type 1 diagnosis. She was diagnosed about three weeks after her 2nd birthday, and we’ve stumbled around this block a time or two. From being told to “suck it up” to a suggestion to try feeding her camel’s milk (because I always wanted a pet camel, right?), I’ve heard a lot of stuff on this journey.

With that in mind, I wanted to give you 10 useful tips (in no particular order) to help you figure out how to plant your feet in the right direction:

BUT FIRST!!!!! This is a long post. I mean…it’s been TEN years for us…so TEN tips adds up. I just want to say that if you don’t feel ready to read this right now, that’s okay. Type 1 diabetes is here. It isn’t going away. You can always come back to read this another day.

1) You will, no doubt, deal with a range of emotions as you go through the motions of adjustment…and beyond. I want you to know that it’s okay if you aren’t feeling “happy happy joy joy” every minute. It’s okay to be angry. It’s okay to cry. It’s okay feel frustration over the financial toll, sleep deprivation, and stressful impact type 1 diabetes will have on your family. Pretending any of that doesn’t exist won’t make it go away. Acknowledging the challenges doesn’t mean diabetes “wins”. It means you’re facing reality.

Whenever possible, face it – don’t fake it. Your emotions are validated. Justified. Heard. But you are also the parent, and that means you won’t allow life to fall apart either. You’ll do what needs to be done — even when you’re feeling down — because that’s how you roll.

{Further reading: I wrote this post detailing my emotional journey when we got to the 5 year mark — now we’re standing at the brink of 10 years, and not much has changed.}

2) There isn’t a magic cure. Well-meaning people will offer up all kinds of solutions to try to help your child. I say “well-meaning”, because I’d like to think they aren’t intentionally suggesting you try things that could kill your child. I won’t link to some of the outrageous propaganda here (because I don’t want to give them click stats, and also because I don’t want to send you down the wrong path), but cinnamon won’t cure your child…neither will any special combination of foods…or eliminating a food group altogether…or trying an exotic essential oil…or giving your child a variety of supplements…or trying a specialized exercise program.

Insulin is NOT your child’s enemy. Insulin is a hormone essential for life-sustaining function. Without it, people die. It is the ONLY treatment available for the management of type 1 diabetes. Remember, prior to the discovery of insulin, T1D was a universally fatal disease. No one survived…despite trying every herb, every oil, every diet, every exercise, every everything…everyone died. No one was spared.

Insulin saved your child’s life too.

{Sidenote: You’re child may enter something called a “honeymoon phase” after being diagnosed. For awhile, it might seem like diabetes has disappeared, but it hasn’t. I’m sorry.}

3) There will be no shortage of advice. Once you begin to integrate online, you will find there are as many opinions about every detail as there are details. Remember when you were a new mommy and got sucked into the vaccine debate? Or the breastfeeding debate? Or the cloth vs disposable diaper debate?

Yeah. Like that.

Do you change your lancet with every poke? Did you check ketones with every BG over 250? DO YOU — USE AN ALCOHOL WIPE FOR EVERY INJECTION????? The list is long, and the commentary is longer.

Here’s a tip: Don’t pay attention to any all of it. Do what works for your kid, and let another mother do what works for hers. Take what you find helpful, and leave the rest behind. That’s all there is to it. Pick and choose what (and who) you want to spend your energy on.

Along those lines, be aware that sometimes people will interject themselves into your crisis. And, make no mistake, right now — in the aftermath of your child’s diagnosis — this is a time of crisis as you adapt your new normal. There are some people who are just constantly in a state of drama. They come on strong, act like they know everything — been there/done that, and monopolize your time with their theatrics.  They’ll constantly compare your situation to theirs. They turn every conversation around to be about them, and they never stop to listen. Every day is a new dilemma for many of them, and you’ll grow tired of listening to all of their struggles while trying to balance your own.

You don’t have to make time for all that right now — or ever, for that matter. It’s okay to avoid them. Unfollow. Defriend. Block. Whatever it takes.

Catch your breath.

4) Ask for help. You are going to need someone who can check your child’s BG, count carbs, and help give insulin. You will need someone who can watch your child for an hour or two at some point in time. I know it might feel impossible right now, but be honest when people ask you what you need.

Sure you can always use help with dinners, and errands, and all that good stuff…but for the long haul, you will need someone to be willing to step up in this area. Tell your friends and family you need them to learn everything they can so they can help you take care of your child.

Not everyone will be willing, but someone probably will. You might be surprised who it is.

5) Technology is out there.  When it comes to diabetes technology, there’s a lot of information to absorb. From glucometers to insulin pumps to continuous glucose monitors (CGMs), there’s plenty to learn. While I feel inclined to tell you to cross those bridges when you’re ready, I also feel obligated to let you know that technology has, literally, revolutionized this journey for us.

#1 – The precise micro-dosing offered by the insulin pump helped us stop the horrible low blood sugars that were causing my little 2-year-old daughter to pass out repeatedly. {She wears the Animas PingHERE’S WHY, if you’re interested.}

#2 – Yes, she did begin carrying a cell phone at 9 years old. It was a game changer, and my only regret is we didn’t get one for her sooner. Putting a cell phone in her hand gave us a direct connection for the times we couldn’t be together…like, for example, when she was Toto in the school play and stayed after school twice a week for most of the school year; and that time she went to her 1st sleepover (which didn’t go very well, btw); and all the weekend services we’ve spent apart during church worship. These days, she goes to the park with her pals, rides her bike around the neighborhood, and calls me anytime she’s dealing with a BG issue she feels like she needs help with. I love that we have cell phone technology in this day and age of parenting — and diabetes management.

#3 – Finally, the peace of mind offered by her Dexcom Continuous Glucose Monitor (CGM) is second to none. Dexcom measures the interstitial glucose levels using a very thin sensor placed just beneath the skin. It displays a glucose reading every 5 minutes, along with an arrow to indicate which direction the glucose level is moving. We’ve found it to be incredibly accurate, and would consider it one of the most important tools in our tool box.

Currently, I’m able to remotely monitor my daughter’s Dexcom data using Nightscout. This means I can see her numbers on my laptop, smartphone, and even on my Pebble watch (using an Android app) no matter how far apart we are! Ten years ago, the idea of being able to remotely monitor my daughter’s glucose levels would have been a dream come true…and now here we are. {Nightscout is actually a bit more complicated to set up than I’m making it sound here, but it’s pretty amazing and worth the investment of time.}

If you are a family of iPhone users, the Dexcom SHARE might be a great option for you. There isn’t as much set up required as Nightscout, and you can still remotely monitor your child’s glucose levels. Unfortunately, Dexcom didn’t make their remote monitoring software available to Android users (something I have a pretty big problem with — a soapbox I’ll rant on another day), so I can’t give you a firsthand account of the experience, but I think it’s going pretty well for iPhone users who have been able to use it.

Finally, have hope in the technology of tomorrow. In the summer of 2014, my daughter wore a closed-loop artificial pancreas called the Bionic Pancreas. She wore it for five days as part of a clinical trial, and it completely controlled her glucose levels — like, she didn’t count carbs, she didn’t correct highs, she didn’t deal with lows. It. did. eve.ry.thing. I’m not even making this up, people. I know it sounds very futuristic-scifi-the-stuff-that-movies-are-made-of…but it was real. She really wore it. You can read more about her experience with the Bionic Pancreas HERE.

Oh, and Encapsulation. You need to be excited about that too…it’s a little implanted device that would eliminate the need for insulin for up to 24 months.

Yeah. Read that again: “eliminate the need for insulin for up to 24 months”.

Good stuff is coming.

Get on board with technology.

6) Get involved. You cannot take a passive role in your child’s future. You have a very finite amount of time to shape tomorrow, thereby ultimately making a long-term impact on your child’s destiny.

One day your child will grow up to become an adult with type 1 diabetes. Their ability to carry health insurance, avoid discrimination in the workplace, access technology (as well as what that technology will be), and the ability live as normal a life for as long as possible will come about, because of  advocacy efforts that are happening TODAY.

There are organizations working very hard to secure a better future for your child, but it’s not just about tomorrow. Children today are able to access insulin pumps and CGMs because of advocacy organizations who have worked hard with the FDA and insurance organizations. Our children can go to school with protection under the American with Disabilities Act, complete with a 504 Plan (or IEP, depending on your child’s needs). Today’s children are benefiting because of yesterday’s hard work. It’s a circle effect.

You must become part of the momentum, because we need ALL HANDS ON DECK. Get involved. Start a walk team. Sign up to share your story with lawmakers. Offer to come to the office. DO SOMETHING…but whatever you do, don’t do nothing.

JDRF

ADA

Here’s a great article that highlights some others.

7) There are no bad numbers.  There are a lot of numbers. Many days are like a roller coaster…up, down, up, down…but there are no “bad numbers”. There are high numbers. Low numbers. And target numbers.

Let’s say a BG of 439 pops up on the meter. What do you do?

Frown? Scowl? Grumble?

Does your child think you’re frowning, scowling, and grumbling at them? Are they now worried that they’ve disappointed their parent because of something they have absolutely no control over? Their body doesn’t make insulin. Regardless of whether that number is the result of forgetting to cover something or not calculating correctly, the fact remains that…well…they’re 439 because their body doesn’t make insulin.

Listen…the last thing you want is for your child to tie that number to their self-worth. It’s a number. It’s a piece of data — that’s all. 439 simply means your child needs insulin. Period.

Fix the number, then objectively try to figure where it came from. Don’t lash out. Don’t hurl accusations. Don’t place blame. Just work together to problem solve.

Each number — whether high, low, or target — is merely a point of data on a graph. There are no bad numbers — just data. Use the data to make decisions about what to do next, but do not use the data to place any sort of value on your child.

Your child is so much more than a number.

{By the same token, remember these numbers are not a measure of your parenting either. Data! That is all.}

8) Doctors often don’t get it. You will be surprised how many times you encounter a doctor (or other healthcare professional, nurses included) who will ask you if your child uses insulin. Um, yes. TYPE 1 DIABETES infers the use of insulin, but it’s just not that simple. They will insist your child needs nutritional counseling or start an exercise program to “control their diabetes”. They don’t get it. THEY JUST DON’T GET IT!!!!! And you can educate them until you’re blue in the face, but they will probably just argue with you.

Truthfully, I didn’t really get it either. I was a nurse for 10 years before my daughter was diagnosed, and nothing in nursing school prepared me for this. I was SHOCKED when I learned what this life would consist of. I’m embarrassed to admit this…but I said that…and this patient taught me so much.

I don’t know how to fix the problem at large, but felt you should know so you wouldn’t be caught off guard. Most healthcare professionals have no clue about T1D, so don’t let them start making decisions about your child’s insulin until you’re confident they know what they’re doing.

{Further reading: No one should die because they are misdiagnosed or not diagnosed in time.}

9) Get on a 1st name basis with your school nurse. And your school’s custodian. And the cafeteria workers. And the front office staff. And the crossing guard. And anyone else who is willing to look out for your child during the school day. Love these people. You are on the same team. It takes a village, and they will be there when you aren’t. Everyone matters.

10) Your child was diagnosed, but everyone in the family is living with type 1 diabetes. This is going to be life-changing for everyone. Siblings will go through adjustments. Marriages go through adjustments. Family routines go through adjustments. In some ways, a bomb has just been dropped in the middle of your living room.  In other ways, the ultimate team challenge has just been presented to your family.

Everyone’s experience counts. No one is less important, and there’s most certainly a job for everyone. Youngers can help keep track of juice boxes, and Olders can help learn how to give injections. From learning how to check glucose levels to learning how to count carbs to learning how to weigh and measure food, there’s something for everyone.

All of that being said, sometimes it won’t be so hunky dory. Sometimes siblings grow tired of the extra attention your child with diabetes (CWD) is getting. Sometimes your CWD may grow tired of it too.

After ten years, I wish I could end this post by telling you that it gets easier, but it doesn’t. Sometimes it feels like we’re living life one number at a time, just waiting for the next result so we can make a decision about what happens next.

The insurance hassles, prescription battles, and BG rollercoasters never seem far away. There’s always a challege lurking around the corner. Just when you think you’ve found the perfect insulin dosages, your child grows — or has a test — or exercises — or whatever. There are birthday parties, and sleepovers, and swimming pools, and bounce houses…and nothing is predictable.

It’s never easy…but you will look back and see how far you’ve come…at 2 weeks, then 4…then 3 months, 6…then before you know it, at 1 year, 5…10… You will stand amazed at what you, your child, and your family has overcome. You will look around, simultaneously shocked at how fast the time has flown, and how slow it has crept by at the same time.

No…it doesn’t get any easier.

YOU, my friend, get BETTER!

Animas: Our Pump Choice (Updated!)

The Animas Ping.

Welp.

Here we are.

The end of 2014.

Which means we’re 4 years removed from the first time I wrote about why we’ve chosen the Animas Ping to keep the insulin flowing around here.

Sugar’s pump warranty expires this month – on December 27th, to be exact. As usual, this time always rolls around and I find myself sizing up all the pump options available.

Please Note: A lot has changed in the insulin pump industry in the past 4 years. I’m going to tell you why Animas is the right pump for us and the reasons we’ve ruled out other pumps. What’s important to me may not be important to you. Likewise, my reason for ruling out an option may seem ridiculous to you. In the end, we can only choose one. I have to rule them out somehow! I’m not here to list a comparison of every advantage and disadvantage of every pump on the market, but here’s a great overview and another great one if you’re looking for that.

**Animas — Winner Winner Chicken Dinner!  I’ll start with the obvious…

The Remote: Simply put – We love remote bolusing! I hate overnight corrections, but love that I can just push a few buttons and be done with it rather than having to dig out her pump to do it. I love sitting across the table at a restaurant, and zapping her with a pre-bolus while she’s still perusing the menu. I love that she can wear a dress and not have to worry about lifting her skirt to access the pump. I love that she can hang out with her pals at a party, doing whatever kids do, and I can bolus her from across the room without interrupting. I could paint a million pictures about why I love — and need — remote bolusing in my life. In fact, I love it so much that we haven’t been able to give up the remote in exchange for CGM integration now that the Animas Vibe is approved for kids.

The Pump Bolus: Yup. I love our remote (though I do feel it could use a makeover), but I love that we have the option to administer a bolus from her pump too. I can’t count the number of times the remote has accidentally been left at home, in a different bag, at school, at a friend’s house, etc, etc, etc. When you consider how long we’ve been using it, I suppose it really isn’t all THAT many times, but enough times to really appreciate the option of administering a bolus from the pump.

The Tubing: Yup. You heard that right. We *PREFER* having the pump – and the ability to perform all essential pump tasks – attached to her body.  Sugar has been pumping with tubing since she was 3 years old. It doesn’t get in her way…ever. Period. End of story. In eight years, the tubing has been the least of our concerns when managing type 1 diabetes. We also love that she can disconnect and reconnect easily whenever necessary.  Not to mention that she likes the camaraderie that comes with being spotted by (or when she spots) another pumper in the wild. At this phase in her life, she’s proud of her pump, and really doesn’t care who can see it – tubing and all.

0.025u Basal/0.05u Bolus: Using undiluted insulin, can you draw either of those doses up accurately in a syringe? No. You can’t. Even if you have a syringe with a half-unit marking, you’ll still be guessing. Over the years, we have come to depend on the precise micro-dosages that Animas offers for both basal settings and bolus delivery.

Insulin On Board (IOB): Keeping track of active insulin to avoid stacking is something I have always considered a key safety feature for any insulin pump. I refuse to attach my daughter to medical device that doesn’t keep track of the life-saving (and, potentially, life-threatening) hormone it is infusing into her body. Along those lines, I expect the pump which is infusing such an essential fluid to recognize when her BG is below target and adjust dosing to accommodate accordingly. Expect. Per-i-od. You’re automatically off the list if you don’t do both of these things.

Sites: Sugar uses the 6mm/23 inch tubing Insets. They’re easy to insert, easy to remove, and easy to disconnect in between. We rarely encounter a site issue. After 8 years, I have come to the conclusion that they work great for Sugar and any pump we use would have to be compatible with them. Because the Animas cartridge (which is super easy to fill without air bubbles, btw) has a luer lock, users have the ability to try sites from other companiesif they so desire. The tubing is not proprietary, and I really appreciate that. In the first 2 months of our pumping experience, we were trying to use a different infusion set and it was disastrous. We actually began using the Insets with a different pump…more on that later.

Waterproof: Sugar has been tubing on a lake, romping around waterparks, running through sprinklers, playing on splash pads, and caught in the rain with her pump on.  During the summer months, we usually disconnect the pump and store it in a cooler while at the pool, because her BG tends to drop during swimming. (There we go again with loving the ability to disconnect.) I keep it in a plastic bag and just toss it in with the drinks…there’s been a time or two that water has leaked into the bag.  Suffice to say that I was very glad her pump was waterproof during those times! (Sidenote: The Vibe offers waterproof CGM integration. Dude.  Like. That’s freaking awesome.)

There are a few more things we really like about Animas — like the fact that it uses a AA battery (preferably lithium, but a regular battery gets the job done too), and I can grab them while I’m at the grocery store. Or steal one from a TV remote in a pinch. Not that that has ever happened or anything — but those features are most important to us. So, let’s move on. Here are the reasons we ruled out the other options:

Asante Snap: Asante uses prefilled insulin cartridges to load the pump. While I think that’s pretty awesome, they don’t offer an Apidra cartridge and Sugar uses Apidra insulin.

Next.  {Asante has left the industry since I wrote this post.}

Insulet Omnipod:  The first thing you’ll notice about the pod is that it’s tubeless. That’s awesome…if you’re into that kind of thing. As noted above, we like having tubing, so there’s that. You can’t administer insulin from the pod itself, nor can you change settings, set temp basals, blah, blah, blah. If you misplace/forget/whatever the PDM, the basal rate will continue, so that’s good news. You won’t go into DKA, but you won’t eat without a shot either. Aside from those things, we prefer a smaller basal rate than the pod offers (0.05u) — and beyond that, the ability to program a temp basal for an even smaller amount. You can’t disconnect insulin delivery without removing the entire pod or change a pod for whatever reason without losing all the insulin it still holds inside.  You also have to change the pod when the pod decides. Sometimes Sugar’s sites slip into a 4th (or 5th) day…{don’t lecture me}…I don’t need the thing yelling at me because we’ve had such amazing numbers that I forgot about the site change until the pump reminds me that it’s out of insulin and needs to be refilled. The PDM remote often has to be directly next to the pod/practically touching the darn thing for successful insulin delivery (might as well just push the buttons on the pump, eh!?!), and static electricity interferes with pod function.

If all that weren’t enough reason for me, the Omnipod meter has a notorious reputation for inaccuracy. In fact, the integrated meter uses test strips that have been called into question for accuracy concerns since 2010. From late 2013 through early 2014, there was (finally) a big confused mess of a recall.  The strips were recalled because the Omnipod PDM was reading erroneously low glucose levels…unfortunately, the recall came too late for this young woman who died.

At any rate, as you can imagine, many users prefer to use a different meter…which means they lug around the PDM to operate the device and another meter to use for glucose testing. Blah.

The pod also involves more adhesive and more adhesive involves more potential for irritation, rashes, and skin breakdown. I’ve heard a plethora of stories about pods that malfunction (A LOT of stories about malfunctions, actually), pods that get knocked off, pods that leak, pods that just start screeching randomly at inconvenient times for no apparent reason…the pod just isn’t the right fit for us.

Next.

Roche Accu-check ComboI admit that I don’t know a lot about this pump. I do know that I’d have to use a specific meter to communicate with the pump in order to program a bolus, and there isn’t an option to manually enter the BG if I so desired. I’ve also heard both the set changes and bolus delivery rates take way.too.long. For now, that’s enough.

Next.

Tandem t:slim: I would say out of all the other options, this pump was probably the closest contender. Unfortunately, it doesn’t adjust insulin doses until the BG is under 70. Sugar’s target is 120. If she’s any number less than that, I want the pump to take it into consideration — along with IOB — and subtract insulin accordingly. Waiting until the BG is 70 just isn’t cool with me. You also can’t just deliver a straight-up bolus without associating it with a BG number or carb count…if I just programmed 1 unit for a cupcake and now she’s eating a second one, I just want to program 1 unit again. I don’t want to mess with the other stuff. There have been rumblings of concern about this pump administering incorrect basal delivery, and some folks feel the onscreen buttons are too small, causing frustration when it times out because your fat fingers didn’t seem to hit the right one after three tries. I’ve heard a couple complaints that it’s easy to accidentally enter a BG where you should be entering carbs — thereby potentially administering insulin for 500 carbs when you really just wanted a correction for a 500 BG. I guess there are also a zillion confirmation screens — that sounds as annoying to me as having to scroll up from 0.00u when programming a Ping bolus. I’m used to one annoyance, and don’t want to get used to a new one right now. Beyond those things, this post sums up a lot and I’ve heard a few other horror stories about using Apidra insulin in this pump. Not to mention concerns about (any) insulin overheating when charging this pump (it doesn’t use batteries). Then there’s that whole upgrade thing (or lack thereof) –> basically, Tandem refuses to upgrade current users as they develop and release new technology. When I talked to one rep, he described set changes as “I get it set up – go take a shower – then come back”, because, apparently, it takes a while to prime the tubing. Getting a complete set and site change done at 2 am in under 5 minutes with the Ping is frustrating enough. For now, my sanity couldn’t spend a second longer dealing with slow priming in the middle of the night — or any other time, for that matter.

Next.

Medtronic 530G with Enlite: Lucky for them, Medtronic ruled themselves out as a contender in our home when they sued Cozmo out of business in 2009 over a minute detail they considered to be a patent infringement. I mentioned briefly somewhere up there that Sugar started pumping with a different pump originally. It was a pump we really liked. Sadly, dealing with the mounting legal fees imposed by Medtronic, combined with the flailing economy was too much to recover from. Cozmo employees lost their jobs, and Cozmo pumpers everywhere were devastated — including our family. In true bully form, they’ve sued both Insulet and Animas over “patent infringements” in the time since as well. Interestingly, however, Medtronic had no problem infringing on patents involving transcatheter heart valves — and, hey…KARMA’S A BITCH. <— yeah, that says “ONE BILLION”.

I’ll probably hold this grudge forever, but generally don’t make a big deal about it, because we ended up switching to the Ping and have loved it ever since.  You keep loving your Medtronic pump, and I’ll keep loving you anyway 🙂

Rant aside, there are a couple things I don’t like about Medtronic’s insulin pump technology.  For starters, could the bolus be delivered any slower? Cripes. When I want to get a pre-bolus started, I want it started N-O-W. Not 5, 10, 15, 20, whatever minutes from now. They’ll say people have complained about Animas boluses stinging, because it delivers faster {about a minute}. 1) That has rarely/practically never been an issue for my kid, and 2) A shot delivers faster than any pump out there, so… Moving on, Medtronic pumps are also notorious for “motor errors”. Anyway, I’m not a fan of their proprietary-tubing-thing either. You have to use THEIR products, even if you find one elsewhere that works better for you. It’s not waterproof, and the screen contrast is rather poor in comparison to other pumps. Lastly, Dexcom consistently outperforms Medtronic’s CGM technology when it comes to accuracy and sensor comfort.

————————————————————————–

In the end, there is one other detail that influenced our decision to stay with Animas. Before I mentioned it, however, I wanted to demonstrate that Animas has earned our business based on their own merit and solid record of performance in our home.

Last month, Mr. Rose completed his Bachelor of Science in Information Technology/Information Management and graduated after 5 long years of schooling.  His shiny new degree comes with a career change…which means we’ll be facing some uncertainty about how our health insurance situation will be impacted.

animas supplies

Right now, we have everything we need to keep insulin pumping through an Animas device around here…and that security is priceless.

P.S. (There will be one big change with our next pump order. Sugar will be switching from pink to green 🙂 Awesome color options are another reason she loves her Ping!)

**DISCLAIMER: I HAVE AN EXISTING RELATIONSHIP WITH ANIMAS. HOWEVER, CANDYHEARTSBLOG.ORG IS SOLELY OWNED BY ME, MYSELF, AND I. ALL OPINIONS EXPRESSED HERE ARE FROM MY OWN (CANDY) HEART. I WAS NOT COMPENSATED IN ANY WAY TO SHARE THIS INFORMATION WITH YOU TODAY**

Pumping BABAY!

Along this journey, there are a few dates that have stuck in my mind.

July 25th, for example.  And December 18th.

February 14th is one of them.

She was 3 years old.  At the time, insulin pumps were not being widely used in very young children, though they were certainly gaining momentum.  Our first endocrinologist was adamantly opposed to the idea, while our second endo began advocating pump therapy right away.  She knew that Sugar would benefit from the smaller dosages a pump could offer.

It still took me over a year before I’d even entertain the discussion…and a full 18 months before we were actually hooked up.

We had to fight with our insurance company to get it covered, and prove that a pump would be beneficial for our daughter.  Then we had to find a local supply company who could get us supplies.  I was faxing here, there, and everywhere.  Once we had the pump in our possession, it would be another 2 months before we could be scheduled for training.

I was convinced that anything would be better than those horrible lows.

It had to be.

There weren’t tubeless options or remote features.  CGM’s were just hitting the scene, and insurance companies were denying them right and left.  I did my homework, read a few books, and tried as best as I could to prepare.

I had a diabetic 3 year old, a 14 month old, and a baby on the way.  After the experience of trying to stick to a regimented schedule while nursing a newborn, I KNEW in my heart that we had a small window of opportunity to transition to the pump before the new baby arrived.

Ready or not….here she comes.

The demands of a third baby on top of a toddler (who, by the way was still nursing!!), and the all consuming reality of managing diabetes — mixed with constant anxiety about needing to conform to a strict eating schedule in an attempt to avoid those lows … well …

I just knew I couldn’t do it again.

If I was going to be the best mother I possibly could be, I would need a way to introduce more flexibility in our life.

And so, on February 14, 2007, we took that plunge.

The insulin pump revolutionized this journey for us.

It was an absolute game changer.

The transition wasn’t easy.  In fact, there were times I wanted to throw the entire thing away.

But I’m so thankful I stuck with it.

I just can’t imagine our life without her pump!

PS — To learn about the reasons Sugar is wearing the Animas Ping, click HERE.

Insulin Drama

Sooo…Sugar is Toto!

I know!  Such a big part for her first school play.  We’re very proud!  Drama meets every Wednesday after school.  For the past 2 weeks, her specials rotation has meant that she has PE on Wednesdays as well.  PE falls at the very end of her school day.  Her PE class ends at 2:55, and school gets out at 3.

She eats lunch at 12:30.

The school nurse leaves campus at 3:30.

Drama doesn’t end until 4.

Sooooo…

She needs to check her BG before PE…by then it’s been just shy of 2 hours since lunch. Experience has taught us that she’s likely to go low, so to compensate we give her a snack and cover it with insulin, minus 10 carbs, while taking the current BG/IOB (active insulin on board) into consideration before administering the final dose.  We’ve learned through trial and error that 10 uncovered carbs helps prevent lows during PE class, AND highs that strike from feeding carbs without insulin.

On any day, except Wednesday, I’d be there at the end of the day to follow-up after PE.

BUT…on Wednesdays she has drama.

So there lies the dilemma.

She’s just had a snack and a carb bolus an hour before the end of the school day, followed by intense physical activity for 45 minutes, and the school nurse is preparing to leave campus.

She needs a sugar check, right?  And probably a snack to cushion her from a potentially drastic drop in blood sugar.  But how much insulin should she get?

Remember, there’s still plenty of active insulin circulating from the pre-PE snack an hour beforehand (that may or may not have included a correction), and I’m not there to use the adult level critical thinking skills that keep her alive from one bolus to the next (okay, maybe that’s a tad dramatic — but this is a post about drama, after all!).  The school nurse will be leaving soon, and anything can happen with the peaking-insulin-post-activity-drama-adrenaline combo.

She’s on her own to choose a snack, consider the physical activity she just participated in (which could vary based on weather), and administer insulin while compensating for whatever BG pops up on the meter.

It’s a tough call for an adult to make, but it becomes more precarious when a child needs to figure it out.

She’s 8 years old and gaining increased independence every day.  I’m administering boluses and prompting blood sugar checks less often, while she’s stepping up and taking responsibility more often.  Learning to step back has been a struggle for me, but I know it’s necessary for her growth and well being.

Fortunately, her Animas pump doesn’t make this as much of a dramatic moment as it may seem.  The IOB feature will deduct insulin she doesn’t need from the dose while compensating for her current BG. She’s responsible for pushing the buttons, but we rely on the pump’s algorithms for keeping her safe.

Because, let’s face it, Toto is a superstar who needs her own personal security detail!

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