It’s official – Greg is riding in the 8th Annual Tour de Tahoe/Ride to Cure Diabetes this September!!  Now all he needs is a real road bike and 3k worth of fundraising

Ainsley is too young to understand what this means to us, or for her. She’s just excited that Daddy’s riding his bike and she gets to watch. But one day I hope that she will look back at all the rides and walks and advocacy that we will do and feel the message that we, and the community of all those who love a T1, are trying to send:

People, many more than you’ll ever know, really do care.

There is always hope for the cure, and the certainty of ever-improving treatments.

With or without the cure, your life can and will be WONDERFUL.

We love you and we’ll be right beside you cheering you on every step of the way.

You can do this.

Ainsley just turned 3.  A 3-year-old’s mind is an interesting place. Especially when there’s a handy big sister to teach you new concepts. Ellory likes to pretend that there are monsters under the bed, spiders hanging from the ceiling, and witches in the closet. This used to scare Ainsley until Ellory also taught her empowerment. Their conversations go like this:

<Whispers>

“Ainsley, there’s a huge monster under the bed.”

“There IS?  OH NO.”

“It’s ok, Ainsley. We’ll get rid of that monster. We’ll wack him and smash him and chop him into 4 pieces and send the pieces to the middle of nowhere.”

Ainsley’s not afraid of monsters anymore, and her worst threat has become, “If you don’t stop doing that, I’ll put you in the middle of nowhere!”

This is the context for our conversation earlier tonight. Ainsley, for the very first time, ripped out her pump site. I’m not sure how it happened; she says she did it on purpose but I’d be surprised. Either way, she wears a steel set so it must have hurt like a mother.  Unfortunately, tonight was not a pump change night, so we had to do an unnecessary set change, something that, lately, is always a horrible undertaking.

I won’t drag you through the reenactment of my attempts to avoid the inevitable. It was the usual –  rationale did not prevail.

As usual, Ainsley became upset. She hid from me, she whimpered, she cried. I remained sympathetic yet implaccable. I try to keep it undramatic, at least from my end. A bit of good advice I heard once, that I always try to employ, is to make it just another chore, like brushing your teeth. It’s something you probably don’t love, but still something you’ve got to do. We try for that tone – let’s just get it over with and move on to something better.  That’s all well and good when you’re 33, and completely meaningless when you’re 3.

Finally, as usual, Greg had to pin her down while I applied her set as fast as possible. This makes her feel totally violated, understandably. She hates it that we force her to do something painful, something that she absolutely does not want to do with as much passion as its possible for a 3yo to have. But because we can overpower her, she has to do it. She doesn’t understand or care about any of the whys of it.

Afterward she locked herself in my room and I let her. I gave her some space and after a while she came out and asked me to hold her. Then,

“Mom, I want you to take me and put me in the middle of nowhere.”

“WHY, sweetie?”

“Because there I won’t have diabetes anymore or have to wear a pump anymore.”  Then her eyes well with tears as she says, “But then I would be all alone and I wouldn’t get to see you anymore and I would miss you.”

This is a conversation that should never happen. These are thoughts that should not be in the mind of a 3yo child.  In her world, the worst thing you can do to someone is to send them to the middle of nowhere, and she would rather go there than have diabetes. Worse, and so heartbreakingly bravely, she assumed that she would have to go it alone. Why? Because she’s the only one of us who has diabetes.  Now she’s thinking that she has to choose between having diabetes, and having a family. That is so fundamentally wrong, so horribly horribly awful, it crushes my spirit as a mother and as a person.

I lifted her up and looked her straight in the eyes and assured her of the only thing I could.

“Ainsley, you will never be alone. I will always ALWAYS be there with you, no matter what. We stay together. Ok?”

“Ok.” Looking greatly relieved and encouraged, she ran off for movie night. And then Greg and I went downstairs and cried.  This is what living with diabetes is really like.

Dealing with death is harder than dealing with diabetes, and I often remind myself of that.  The worst days are when I feel swamped by both at the same time.  On such a day recently I was driving in the car and thought, things have never been harder, and I’ve never been stronger.  They are both equally true, and embracing that, I suddenly felt  . . . victorious.

Looking back, I realize that I have been balancing on the head of a pin, waiting for the pain to end, waiting to recover, to get back to the way things were.  But, of course, the way things were is dead and buried with Lindsey. We left it behind in the Pediatric Subspecialties conference room at Kaiser.  Lindsey’s never coming back, and diabetes is never leaving.

I have often said that the only way to love Ainsley is to embrace her diabetes. When people are afraid of it and reject it, they reject her. It is an inseparable part of her, and it does not make her less desirable, less able, or less fun. Diabetes is a hideous hogbeast, and it is just as much Ainsley as her chubby cheeks and spunky personality.

I want her to see herself as such, as a whole person, not her and then that horrible thing. I don’t want her to fragment herself that way.  I know that if she does, she’ll resent the pain and the burden and the singularity of it more and more and grow bitter.  She might try to hide it, or ignore its demands and not take care of herself.  I want her to be happy and secure in herself and ok despite this shitty card she’s been dealt.  Hello Kettle, they call me Pot.

How shall I be bitter about the cards I have been dealt, and ask Ainsley not to be?

I will never be ok with my sister’s death or with the fact that we are totally dependent on the availability of modern medicine to keep my daughter alive. But I think my moment of victory marked a turning point for me, and for us. It was the point when I realized that I wasn’t balancing on anything at all; I was just standing still.

My hideous hogbeasts aren’t ever going away. They are me, and we are we.  Whole and ok we will be. Hogbeasts and all.

Yesterday I got a tweet from my D-friend, Lorraine, who lives far, far away and yet instantly near through the auspices of Twitter.

“Where are you? Everything ok?”

Good question.  It made me realize that I haven’t been present on Twitter for quite some time now. I’ve missed the last two, or maybe even *gasp* three, DSMA conferences – a weekly event that has approached the level of sacred around here. I’ve stopped reading D-blogs. Stopped clicking on links. Just kind of . . . stopped.

I’m still taking care of Ainsley. I still work hard. But I think I’ve just been kind of tuning out of diabetes.

It came full circle when we had our tri-annual endocrinology visit this morning with a new-to-us member of the team, Dr. L. Dr. L is a little more hands-on than our usual endocrinologist who takes the attitude of whatever-you’re-doing-is-working-I’m-just-going-to-leave-you-to-it. Dr. L says he wants to earn his keep as an endocrinologist and so he really dug into the data and tried to help with improvements. He noticed our recent trend of high blood sugars.  I became defensive and said, “You know, every time I get things just right, she changes again and I’m always running to keep up. There’s been a lot of upheaval lately. I’m working really hard but I just can’t ever keep up.”

Dr. L  smiled a gently knowing smile. “You’ve been diagnosed for how long now? A year?”  A year next month, as a matter of fact.

“You’re in the grind of it now. In the beginning, it’s all learning and motivation and hard work. And from here on out, it’s trying to STAY motivated to work that hard. There will always be upheaval and the BGs will never be very predictable. You’ll always be running to keep up. Now the hard work comes in trying to stay motivated.”

You’d think that would be depressing and, in a way, it kind of was. But having someone say it to me just like that, just like it is and always will be . . . I felt as though I’d been holding my breath and suddenly let it out. And breathed in again. I guess I’ve got my second wind. Let’s do this.

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.

This is a quickie post as a precursor to my next post on our mini-g experience. This is for all my peeps who are new to glucagon.

When your child is diagnosed with Type 1 Diabetes, one of the many items you receive that day is a Glucagon emergency kit. You might think of it like an epipen, which is used for people with, say, a severe peanut or bee allergy. Glucagon is what a T1D uses in case of a life-threatening low blood sugar. The kit looks like this:

The way it works is that you get the syringe and stick it in the little vial. You depress the plunger and squirt all the liquid into the vial, which you then shake and generally mix up. Then you draw the liquid back into the syringe and inject it in the upper tush. Voila. Now you know what to do if the situation ever finds you.

At diagnosis they tell you that you will probably never have to use it. But you should carry it with you just in case. You should have one in your purse, your car, both cars. Upstairs, downstairs, at your neighbor’s.  We were told only to use it if Ainsley was seizing or became unresponsive, and that we should immediately call 911.  It built up a pretty intense fear of a situation where we would ever have to use glucagon. This was unfortunate because, as we now know, glucagon is a great tool in the diabetic’s arsenal.

I understand why the guidelines are given the way they are. Hopefully, you wouldn’t ever have to use glucagon and, if you did, many people might be in an understandably panicked state. But the major reason for those guidelines is because the amount of glucagon in that vial would bring back a very large adult person from the brink of death. It’s overkill, particularly for a child. Instead of just bringing the blood sugar back to an appropriate level, a full vial of glucagon would send a child’s BG into the stratosphere.

Thankfully, intelligent and wonderful people out there in the world thought about this and devised a technique known as mini-glucagon or mini-g to address this problem.  Using this technique, you do not withdraw the full amount of glucagon from the vial. Rather you use a regular insulin syringe to withdraw a very small amount – specifically, 1 unit for every year of life – and administer that instead.  In this way, you can give timely, appropriate help without overdoing it and causing a completely different problem.

This knowledge has been circulating in the DOC for some time; more and more people have been sharing their stories of how they have used mini-g with great success, and, interestingly, for more situations than just a horribly low blood sugar. I won’t get into all of that here. Instead, I will just say I <3 THE DOC UTTERLY for sharing all of this with me. I read it, applied it, and it saved us during an unexpected situation. That story coming up next.

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.

This morning I emailed my fellow D-mom Lorraine in despair over our breakfast problem.  Lorraine has had great success in bolusing techniques and I admire her greatly. However, her son is 7 and Ainsley is 2. Upon hearing of my woes, she sent me to Laura’s blog whose son, Nate, is also  a toddler and – lo and behold – she has the exact same problems as us. Read through the comment thread below and – lowlier and beholdier – there are many of us. It must be something with the wee ones.

Fair warning: I am about to launch into full Diabetes Speak for the benefit of my fellow D-parents. The rest of you can just kind of let your eyes glaze over and go for the gist

Ainsley’s average basal rate during the day is .05.  She experiences Dawn Phenomenon: very early in the morning, we see an enormous upward trend in blood sugar. Her basal rate is increased to .1 to combat this and it mostly holds her steady until we eat breakfast. At any other time of the day or night, .1 would put her through the floor. Just for perspective.

Eating breakfast is where our real problems happen. Although I am diligent to prebolus (I try to do 15-20 minutes,  never less than 10), inevitably we end up with Dex arrows straight up, often past 300, sometimes all the way to the dreaded HIGH.  This takes hours to correct; meanwhile I hyperventilate as I imagine her kidneys marinating in toxic levels of blood sugar.  I have completely eliminated foods that cause the Dex to read HIGH and stay that way for any length of time. This includes cereal and instant oatmeal.

Ainsley’s list of breakfast foods now includes:

1) whole grain waffles with a yogurt topping and eggs or bacon or sausage

2) Banana frittata (this uses 2 eggs, 1 banana, and almost no sugar)

3) Whole grain toast with 1 tbsp jam and eggs/bacon/sausage

4) Gluten-free steel cut oatmeal with 1 tbsp brown sugar and some fruit

This is about as low carb as I can go and still get her to eat. She is in an anti-protein phase and it is a major ordeal to get her to eat her protein every morning but essential because it slows down the carbs. Although you couldn’t tell that anything was slowed from her Dex graph. It usually takes me 3-4 hours to get her back in range. At which point we will have a low if I don’t catch it with some food.

If you are unfamiliar with Type 1 Diabetes, perhaps this paints enough of a picture that you can kind of understand how this could MAKE. YOU. CRAZY. If you are familiar with this scenario – I feel your pain.

I am absolutely determined to overcome this problem. I have to, for my own mental health, let alone the preservation of Ainsley’s kidneys. In an effort to do so, I have begun keeping an extremely detailed food log as I experiment with Superbolus techniques. If you aren’t familiar with the Superbolus, you can read about it here.  If you are and you have a toddler, you may have tried it and found that it helped a little but didn’t really work.

It is my thought that the very low basal rates of toddlers – or at least my toddler – is the reason why it doesn’t work. Borrowing 2 hours of .05, or even .1, isn’t enough to combat the massive breakfast spike. I have tried borrowing 3 and 4 hours. It wasn’t enough.

What I have been trying lately isn’t right either, but has lowered the top of our spike by often 100 points and that’s an improvement.  Borrowing from the concepts of the Superbolus, I am front-loading a significant amount of extra insulin to reduce the spike, and then trying to control the tail by shutting off basal for a length of time after eating. I have tried providing the extra insulin in 3 different ways:

1) Bolusing X% of the pump recommended bolus as extra upfront, followed by shutting off basal for Y length of time. This works very well the more aggressive you are, but it comes down like a freight train. This approach could work well if it included a preplanned snack every day at, say, 2 hours post-breakfast and it was no problem to give the snack at that time.

2) Adding a temp basal of +X% (say, 30%) for 1.5-2 hours followed by shutting off basal for Y length of time.

3) A combination of the two.

What I’m finding is that different breakfast foods respond better to different techniques. For example, steel cut oatmeal responds pretty well to a 30% basal increase over 2 hours whereas that seems to  be working like crap for waffles with yogurt. I once bolused waffles with syrup (plus eggs and bacon) and just threw an extra .5 units on top plus a 10% basal increase for 1.5 hours and that was probably the best breakfast bolus I’ve ever had. I am positive that there is an algorithm out there that works, and it may vary by food, and certainly will vary by child. But something has to work.

I hope this information helps someone. If you’re trying these types of techniques and meeting with success, please comment back and share your strategy!

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.