Mostly I’m pretty positive about diabetes. It could be worse. I’m thankful that Ainsley never got terribly sick before we caught it. I’m thankful she was such a champion when we were learning to poke her a million times a day. I’m thankful for our pump and our cgm and that we have the ability for me to be home and give her good care.

But there are the times when it’s really challenging to be positive. As a stay-at-home parent of a toddler, you never get away from diabetes. My child doesn’t go to school. I don’t go to work. There are no babysitters, no trained caregivers. There’s my husband but he works full-time so he’s not in the role of primary diabetes manager.  Even when he’s home, I’m on call.

This is what is so hard about diabetes. You can learn to prime a pump, measure insulin, give injections, count carbs, calibrate a cgm. Any of you could learn those things if you had to. You learn it, you get used it, it becomes part of your normal life. The hard part is that you can never get away from it.  Any burden becomes crushing that is never alleviated. When that feeling reaches critical mass, we call it diabetes burnout.

I’ve been aware of this, although we haven’t really been dealing with diabetes for that long at 8 months.  We’ve tried to stave off full burnout in little ways – going out for dinner with a girlfriend, going to a party across the street (so we can still walk back and forth to do care), running to a movie when Ainsley’s very stable and my mom can watch her for a couple of hours.  Greg has his woodworking. I try to lose myself in my books.

What never occurred to me was staving off burnout for Ainsley. At 2 yo, she seems mostly oblivious to all of this. She runs and plays and has no idea what her blood sugar means or even what diabetes really is. I have completely taken for granted that we wouldn’t have to worry about how she feels about diabetes for a while yet.  More fool am I.

When she was first diagnosed, we were the luckiest parents in the world. She didn’t cry for injections. Never batted an eyelash for her first infusion set. Just looked at me when I (crappily) inserted her first Dexcom. Over time this has been changing. She has become the most resistent to Dex insertions to the point that we finally broke down and got a prescription for EMLA numbing cream and have been trying to retrain her that when we use the cream, the insertion doesn’t hurt.

Meanwhile she has also been  becoming more resistant to pump site changes. This came to a head yesterday. Ainsley got her sister’s flu. She had been complaining all day that her site was poking her. She eventually broke down and started crying over it and I decided something was wrong and it needed to come out. She now fears a new set so much that she didn’t want me to remove the old one even though it was hurting her. It didn’t help that she had a high fever, hadn’t eaten, and felt like crap. This turned into an hour-long drama with tears all around. I finally got the old set out only when Greg came home and held her while I forcibly removed it. It doesn’t hurt to take it out, but still I HATE IT when we have to forcibly restrain her to do something with her diabetes.

This was sufficient trauma that she ended up in my lap while I rocked her and she cried herself out. Then she looked at me with teary, trusting eyes and a sincerely hopeful expression and asked, “Mommy, if we wish on a star can we make diabetes go away?”

A few weeks ago we took our kids to Disneyland for the very first time. This was somewhat ambitious of us as Ainsley has only been diagnosed for 8 months, she’s only 2 years old, and she’s still wildly honeymooning.  Still, I have learned over these months that we cannot live in fear and that, as a parent, I will not allow diabetes to take the experience of life away from my daughter. Thus our mantra has pretty much become, “If we can’t get rid of you, then you’ll just have to come along.” And off we went.

We didn’t go without some serious preparation, however. The week before we left, I combed our support group archives, diabetes forums, Twitter. I read all the tips and tricks and, most of all, I read about mini-g. I had heard about it before and thought to myself, we really need to get set up for that,  just in case but I’d never done anything about it.  Before we left, I filled some extra glucagon prescriptions and we loaded up an insulated pack with regular insulin syringes and the glucagon. And thought no more about it.

I don’t know if it was the travel or the flu the week before or the alignment of the stars and moon but pretty much as soon as we set out on that trip Ainsley’s BGs went all to hell. High highs, plunging lows – we were on the BG Scream Machine.  Our first day in the park, I cried as I stood in the middle of Adventureland because I was watching the Dex instead of my daughters’ faces, and I couldn’t get Ainsley’s sugars under control no matter what I did, and I knew that she couldn’t feel well at a 400 or a 40, and diabetes was ruining the most anticipated trip of all time.

Eventually, a little bell rang in my mind and said, “Remember, when you’re riding the BG roller coaster and can’t get off, the basals are probably really wrong.”  Thank god for that small voice of experience. At her age  - and honeymooning –  Ainsley’s basals rarely stay the same for any length of time and on occasion we have seen this kind of thing happen when there was a big change. I decided to go whole hog and ratchet the basal way up because we were only in Disneyland for 3 days and I was damned if I was going to lose another minute. We reverted to known foods and low carb and that night I stayed up all night watching the Dex and tuning the basals. It’s important to note that I couldn’t have done this without the Dex. Not at all. It would have taken way longer and wouldn’t have been safe. I <3 CGM technology.

The next morning as we packed our diabetes backpack for the day, we agreed to pre-load some syringes with glucagon. Just in case. Off we went and we had a much better day. The new basals (double and triple her old settings) were performing great and we were seeing much less variability.

That night we had reservations for a (very expensive) dinner at Ariel’s Grotto which afforded us with premium seating to Ellory’s Great Disneyland Dream – the World of Color show. It’s a very cool outdoor show in California Adventure Park all done with giant fountains and light projections.  The dinner at Ariel’s Grotto is prixe fixe; I was prepared for this and had researched what would be served as much as possible. I knew a huge dessert tray would come out at the end. I even asked the chef if there was any possibility of carb counts – no go. Ainsley had been doing so great all day that we decided to just let the kids go whole hog and eat themselves sick. Ainsley was beside herself with joy – she ate tiramisu, white chocolate film strips, chocolate cups filled with mousse. And I sat by watching, tacking on another 10 carbs here, 20 carbs there, until we were done. We went off to wait for the show to begin.

The Dex was showing Ainsley to be in the 200s which I thought was pretty much to be expected and not too bad, actually. She and a bunch of other children were running around playing while we waited. Something about her behavior must have been off, some small thing that triggered in my subconcious and I thought, something’s not right. We tested and instead of being in the 200s, she was 90, now with double arrows straight down on the Dexcom. Not immediately a cause for panic, we checked the IOB  - 2.5 units onboard. For Ainsley, this is a very large amount of insulin. An amount so large that I didn’t think that at 90 with double arrows down we could catch it up fast enough with food, definitely not without a truly horrible low first. Greg and I looked at each other and jumped into action. I grabbed her up, he whipped out the glucagon, and in less than 10 seconds she was back on her way.

We tested and tested. The glucagon pretty much stopped her descent right where she was and held her steady throughout the show. We were able to hold our kids and enjoy the experience with them just like a major event hadn’t almost happened. It worked beautifully.

It chills me to think what might have happened. Without the Dex, we wouldn’t have immediately known her rate of descent. Without the IOB feature on our pump, we wouldn’t have known what a whopping huge amount of insulin was acting in her body. Without the DOC, we wouldn’t have been ready to go with the mini-g. That night could very easily have ended with her in the emergency room instead of oohing and aahing a spectacular light show.  We count our blessings.

Since then, we really feel like a load has been lifted. The fear has been taken out of glucagon, and that is no small thing. If you are thinking of trying mini-glucagon, the recommendations are as follows (and use a regular insulin syringe):

• ages 2 years and under: 2 units
• age 2 to 15 years: 1 unit  for each year of age
• age 15 years and older: 15 units

Disclaimer: I am not a medical professional. Information I share here is not intended to replace the advice of your doctor or other medical professional.

Following the suggestion of reader Carrie, I have recently tried a new approach to oatmeal. We use Bob’s Gluten-Free Rolled Oats. I cut Ainsley’s portion to half of what we used to give. I supplemented with cut up apple (about 5 carbs worth), chopped walnut (1-2 carbs), and added unsweetened Vanilla Almond milk for flavor. I bolused it as a 70:30 combo over 2 hours. She didn’t eat it all so I canceled the second portion and I shut off basal as soon as she made the turn and started to come back down.

This is today’s breakfast graph:

I call that success. One breakfast down.

Breakfast is getting the best of me. We’ve been pumping for nearly 3 rounds weeks now and had the Dex for nearly 2 and, though I keep getting back up, I still just take it right to the face and go back down. Or, I should say, Ainsley does. It feels like it’s me, but it’s her body that takes the real blows.

Every day without fail she spikes up to nearly 400 or above after breakfast. I’ve lowered her insulin-to-carb ratio (I:C). I’ve bolused earlier, I’ve bolused later. I’ve done basal testing. I’ve tried multiple combo bolus techniques. Once, ONE TIME, she spiked only up to 235, which is a heck of a lot better but nowhere near target.

Right now I am enjoying a Dex graph flatlined at a number so off the charts that all the Dex reports is HIGH HIGH HIGH. Thank you, Dex. This is what we D-parents @ the Twitter community like to call a #momfail.

Thursday, July 29th, was my sister’s birthday. Those of you who know me well know that I lost my sister to a car accident last August. This would have been her 27th birthday.

Lindsey was famously unlucky and it was a great family joke. She always swore that if anything could go wrong – or person get the shaft – that person would be her. Example: I recently shared a story of the last time I ever saw her. We were at our cousin’s outdoor wedding and it was ridiculously hot that day.  Thankfully, the area was largely shaded by enormous trees and when it was time for the ceremony to start we selected a nice shady row. Until we sat down and the sun suddenly burst through a gap in the trees to spotlight . . . my sister’s seat. She immediately turned to me and said, “OF COURSE I WOULD SIT IN THIS SEAT.” I can still see her quirked smile and hear her laughing. She had a great spirit.

Lindsey must be laughing now as it seems her legacy has remained or, I’m beginning to suspect, has been handed off to me. In the last 10 months, I’ve lost my only sister, had my husband diagnosed with celiac disease, and my youngest daughter diagnosed with Type 1 Diabetes. I was stung by a bee, which has happened before, but of course THIS TIME I would have a severe allergic reaction. And the list goes on. Oh, Lindsey. The irony is rich.

Thursday was a difficult day, as expected. Greg took the day off and we drove the girls out to my parents house a couple of hours away. We decided that instead of trying to just get through it, we wanted to forge ahead and try to celebrate her birth and life because we are all so very, very glad that we got to spend 26 years with her. I had a gorgeous bouquet made up in the style of her funeral arrangement: Bells of Ireland and purple Calla Lillies, her favorite. My dad brought white roses, a reminder of a beautiful gesture we received when she died.

Then we all went and chose balloons, some to keep at her memorial, and some to release, bearing our messages of love and devotion to Lindsey in that next place. There were gilded butterflies for her love of faerie and fantasy. There was green, for her favorite color, and blue for my mom’s signature color (“So she’ll know it’s from me,” she said). There was “Happy Birthday” and “Thinking of You”.  And there was mine, a golden star for the golden girl, upon which I wrote, “You Light Up My Life”.  Because she did and, I realize now, still does.

After we all wrote our messages to our girl, we gathered round her place and sang her Happy Birthday in cracking voices and we released those balloons into the sky and watched them float away. It was one of the most profound moments of my life.

Diabetes is crap but, as I often say, it’s an excellent distraction.  We stood around in the sun for a while while the girls picked flowers and played in the grass but it was getting close to dinnertime and Ainsley’s terrible pet was growing restless.  We went back to my parents’ house for dinner.

Her pre-dinner BG looked good at 129. She was served rice and beans and didn’t even get her dinner dose until after she had eaten her whole meal. We were so pleased we gave her a 4gram popsicle. Then we got the girls in their pajamas, kissed my parents goodbye, and got in the very clean, very brand new Rutabaga to drive the 2 hours home.

Ellory went straight to sleep but Ainsley was cranky and having a hard time falling asleep in her carseat. Understandable – she’s 2, it was bedtime, she hadn’t napped. She’ll  be fine once we hit the highway, I thought.  We hit the highway and instead of going to sleep she started projectile vomiting all over the back of the car. Vomit is unpleasant in any circumstance but in diabetes, it is dangerous and freaky. I was out of my seatbelt in a minute, screaming “Pull over! Something’s wrong! Something’s wrong!” Greg whipped into the next pullout, and we both exploded out of our seats, Greg ripping her from her carseat while I grabbed the water bottle and hosed her down so we could get a clean test. She was screaming, cars were flying by, vomit’s everywhere, but we just stood there and watched the meter countdown silently: 5…4…3…2… BG: 39.

39 is bad, very bad in a 2 year old, and definitely the worst number we have ever seen. Thanking Greg’s foresight (don’t ever tell him that), I leaped for the Pediasure he had put in my purse and let her chug the whole thing down. I checked her, and checked again, and again. She was coming up slow, but coming up. We sat, drained and terrorized, and told each other, “If she had fallen asleep instead, if she hadn’t thrown up, we wouldn’t have known for two hours. We wouldn’t have known until it was too late.”  We went over and over the dinner scenario. There was nothing there, nothing to help us understand how she could have fallen so far so fast.  We washed hands before the check. She ate all her food. She was dosed after eating. If anything, she should have been high.  All I can think is that at the moment in time when we got the 129, she was already falling fast, and a single stick doesn’t show that. Behold the beauty of the CGM.

A CGM would have shown me that she was dropping fast and, furthermore, would have alarmed when she crossed a BG threshold of my choosing. Had we somehow missed that, it would have alarmed again when she crossed the device’s safety threshold. We would have discovered it before she went into insulin shock.

By 11pm, she was up to 415 and we called it in. The on-call endocrinologist told us to leave her be (which killed me) and said, “You guys need some help, you don’t have the right tools to deal with this. She is too young and her doses too small and this isn’t working.”  Yeah. No kidding.

At midnight, I looked at the clock and called it a day. A no good, very bad day. As I closed my eyes, I watched Lindsey’s quirked brow and her smiling mouth. Of COURSE this would happen to us, she said, and I felt her arms around me.

After much anticipation we had our first pump “class” today, which turned out to just be a sales pitch for the Medtronic Revel. I did not actually learn anything I didn’t already know, so that was kind of a letdown although, in fairness, I have to say I was probably the only person in the room besides the rep for whom that was the case. Yes, I am that anal and have the read the internet that much.

The upside was getting to see and touch the pump and infusion sets and grill a real live person with questions.  The rep was very nice and knowledgeable. She was not a diabetic herself but has a sister with Type 1. She was also very definitely a salesperson. There was a lot of “we rule” and “Animas sucks”.  That is really annoying as a parent because we are there to make a decision about a device upon which our daughter’s life will depend daily, not to care about their business competition. I personally would like to see medical device sales limited to the same strictures as journalism; that is, pure unbiased reporting of the facts. I know, I’m dreaming.

So. The Revel is very, very similar to the Ping. It’s a small device about the size of a pager with only a couple of buttons on it. It has a simple black and green screen that is menu-driven. It’s a bit like using a really old computer. Or programming in Cobol. It connects with a tube to an insertion site on the body. One cool thing that happened was that a youngish boy about middle school age volunteered to let her do an insertion on him. He chose to have it on his stomach and didn’t flinch a bit. He said it hurt less than a finger stick. After witnessing this, the newly diagnosed 7 year old girl couldn’t allow herself to be one-upped so she volunteered for it as well. She claimed she couldn’t even feel it.  Kids are so stinking brave and amazing. Especially Type 1 kids

It was a relief to see that the pump installation isn’t a big deal. The Revel has a cool infusion set called the mio that directly rivals Animas’ inset. This device is so awesome for kids because it’s colorful and neat and, most importantly, looks NOTHING like a needle. It’s a round bobble that you set against your skin and click. That’s it – when you pull the bobble away, the tube is already inserted in your skin and there’s nothing left to do but plug it into your pump. Simple and not scary. I’m loving it.

There was also some valuable talk about CGM (Continous Glucose Monitoring) which we are becoming more and more interested in. The rep was absolutely adamant that CGM must become the standard of care and is invaluable in the treatment of diabetes. She noted a landmark study that was published last month in the New England Journal of Medicine demonstrating that CGM use in pediatric patients substantially improves A1C without increasing risk of hypoglycemic events (going low). We also were told yet again that Kaiser won’t cover it unless our control of Ainsley’s diabetes is so poor that she is regularly having seizures. Fantastic.  Out of pocket, a CGM runs between $500-800 but it’s the monthly costs that will kill you – about $300. Carwash, anyone?

Our endocrinologist tells us that he expects it to become the standard of care within the next year or two, so maybe we will just wait it out.  Her body is awfully small still to support two embedded devices. On the other hand, every day we see more and more how much a CGM could completely change our treatment of her. Example: I test her before breakfast and she’s got a good number. I count her carbs and dose her accordingly. I test her a few hours later before snack. She’s high, so I give her a zero carb snack (meaning zero blood sugar impact). I test her an hour later when she’s lethargic and find that she’s now low. With CGM I would have seen at the pre-snack check that she was high but coming down fast and I would have known to give her a few carbs to help balance things out. A finger stick is a snapshot and CGM is the video.

In the end, I wouldn’t cry if we got the Revel. I’m still very interested in the Animas meeting. I was discouraged, however, when I asked the rep today what the process looks like from here if we decided to buy her pump. She looked me dead in the eye and said, “You will have to advocate very strongly for your right to have a pump and in a timely fashion.” A part of my brain started screaming,  ”WHY?$&*#” and hasn’t stopped since. There are about a billion studies available showing that an insulin pump is the best way to control our child’s diabetes. Why in the name of all that’s holy would I have to convince the medical establishment of that at this point? I don’t. It’s an insurance thing.

When I got home and registered our team for the Walk For the Cure, I checked YES, please send me information on lobbying the government for diabetes funding and reform.