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.

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 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!

Not long after we got the pump, I was putting Ainsley to bed in her crib. Way back then (less than two weeks ago) and before her current obsession with being told The Very Hungry Caterpillar every single night, we used to sometimes do the Goodnight Moon thing. “Goodnight, Room!” we’d chant. “Goodnight, Fan! Goodnight, Butterflies!”

We did this and I tucked her in with kisses wishing her a good rest, as I always do. I turned and, heading out of the room, heard, “Goodnight, Pump!”

I’ve been terribly delinquent in my posting. So sorry. It’s all this life that gets in the way. How do people find the time?

Today is the day, the beginning of our pump-versarys. After working and fighting and striving single-mindedly and with such focus for so long, today we go live on the pump. I think we’re all ready. I wasn’t sure that we would be after the pump trial. Have I mentioned the pump trial?  I’ll back up.

So Wednesday, and with a lot of excitement, we went in to complete the next in our qualifications for the pump: a battery-less trial with a Ping wherein Ainsley was to wear the set and pump and prove to the team that she would, in fact, wear it without hysterics or trying to rip it out or anything.  I did a lot of talking it up and thankfully she had gotten to watch Greg and I try on infusion sets all weekend so she had some background there.

I chose the Inset infusion set for her to try as she showed less fear of it because it looks non-pokey unlike the Contact Detach which looks exactly like what it is. Our CDE was unfamiliar with how to install an Inset as none (none!) of their pediatric patients have chosen to use anything other than the  recommended Detach. Those poor people; we must be driving them wild with our envelope pushing. She grabbed another CDE to help and we crowded into an exam room where they approached Ainsley with trepidation and very high voices. I assured them that she would be fine and, sure enough, at the sound of the click!, she blinked at them a few times.  That was it. Oh, how they raved. They’d never seen such a calm toddler. All the little ones have hysterics when they get the set, apparently. See, I muttered in the privacy of my mind, I told you she could handle the pump. They gave us a stretchy Velco belt for the pump and we left.

When we got to the car, I started to realize all the ways the pump was going to change things. Her set was in her bum, as it normally is with toddlers, and her pump was positioned right above that. But how to strap her into a carseat with a thing the size of a pager in her back? We wrestled it around and found a comfy spot on the side in between sections of her 5-point harnass. We’re going to have to do this every time, I thought, a pouch in the back of her clothes isn’t going to work.  Ok, so we’ll  use a pump belt, no big.

And then it began. The negotiating, the accommodating, and, finally, the surrendering to this boulder in the middle of our flow. The pump band wouldn’t stay snug and would start flapping around as it loosened, annoying her and tugging on the set which hurt. Then she would begin complaining about the set and wanting to take it off at which point I would freak out and do anything and everything to keep her from deciding she didn’t like the pump. The pack was in the way when we went to use the potty, extra annoying because Ainsley is potty training and we really don’t need anything to make potty training harder. Where to put it when she naps when she starts on her side but moves to her back?  We opted out of bath even though we knew the set was waterproof.

Ainsley really handled all of it with aplomb, though. Truthfully, she scarcely noticed it unless it was being bothersome and she flexed around her new “buddy” as though it were old hat. It was me who revealed cracks under the strain.

I pick Ainsley up many times a day. I have done this for so long, so many countless times, that I have never noticed the smooth rhythm we have for this, where she stretches toward me like so, and I place my hands just here and up she comes onto my hip – never noticed until when I placed my hands there, there was something in the way and I had to be very careful when removing my hands not to get tangled in the tubing, and then had to carefully find a new and safe spot to grab and as I swung her up made sure to push the pack out of the way of my hip. It felt like it came between us, this thing, this thing invading the private world where Ainsley and I blend into one another.

That first day she wore pants and a t-shirt and I didn’t like how very noticeable the pack and the tubing was. I felt like she was wearing the scarlet letter of diabetes for all the world to mark her as diseased. The next day I decided a voluminous dress would be just the thing except it wasn’t. The pack was a huge square bulge beneath the dress and looked suspicious for even scarier, more chronic conditions. I hated it.

We perservered. We made it through 36 hours before I realized we weren’t going live on Friday and I wasn’t going to be able to leave a single set in for 5 days and so I ripped it off. And how I relished it. How I relished sweeping her up and squeezing her without care. I relished putting on her clothes and how perfect they looked. How perfect she looked. Like she didn’t have a disease at all.

But, of course, she does. Ainsley has a chronic, incurable disease that will kill her promptly if we do not give her insulin all day long every day. That is why we need the pump. That is why my baby needs to wear a pump, every day, 24 hours a day, until there’s a cure.

So today we go to be trained by the wonderful Animas rep and we will come home and install the pump ourselves onto Ainsley’s sweet perfect body. We will turn our faces away from what is lost and look forward to what we will gain from this: more days, healthier days, with my sweet girl. And that’s really all there is to want in life, more days with your sweet ones.

Ainsley’s 2 month post-diagnostic visit was Friday. It was the final in our getting-you-used-to-diabetes series. Now we go onto the every-3-months rotation that we’ll be on until there’s a cure.

Ainsley’s A1C is down to 8.4. I was disappointed by that although she has come down nearly 3 full points since diagnosis. I was somewhat shocked by their reactions to my disappointment. My CDE told me, “WHAT?! This is a perfect number for a child her age, I would be afraid if it were any lower”. The endo said, “I’m surprised and pleased that you managed to reach your target so quickly.” Our target? This ain’t even close to my target. More and more it’s becoming clear how much my expectations about what we can do with Ainsley’s diabetes differ from . . . many others.

Example: We were sitting in the waiting room across from another family with a daughter around 9, I would say. She got very excited when she saw me do Ainsley’s finger check and started saying, “Mommy! Look! Is she a Type 1 like me?” I smiled at her and said, “Yes, Ainsley has Type 1.” Her thrill at meeting another was sweet, and sad. The parents shared that they were diagnosed Memorial Day last year (Diagnosis Day is a handshake of sorts, among D-families). I inquired whether they were pumping or still on MDI (Multiple Daily Injections). The mother replied, “Well, we heard about the pump once and asked about it and they told us when she gets to be about 12, that’ll be a good age.” She shrugged.

I carefully maintained a blank face as I said, “Hmm. That’s interesting. Ainsley’s going on the pump this month. She’s 2.” and then we were called in and I wished them well and saved Operation Shock and Awe for once we were roomed. “Have they never read the internet?” I ranted to Greg. “Which doctor on staff would possible have told them that load of festering BS? How can they consign that sweet girl to YEARS of poor control and permanent damage?”

I understand it, though. The parents’ side of things at least.  Diabetes is overwhelming. It’s all-consuming. It’s much like a baby; it will take everything you have and keep on taking as much as you’ll give. I have given diabetes everything for the last 8 weeks, quite literally.  All of my free time. My sleep time. My waking time. My stolen moments. Everything. And there is always more.  It’s a learning curve that never seems to taper. I can easily see how you could feel that what you’re doing already is enough and you don’t really need to seek out any more.

That’s not me though and, for once, I am delighted by this driving facet of my personality because it is serving my daughter well.  I am freaked out when I don’t know what’s going on; this drives me to learn everything. Having learned things, I am energized to apply all of that knowledge to the problem. It drives me and so I find myself driving our health care providers.

We discovered Friday that Ainsley will be the youngest child their department has ever had on the pump. WHAT?! That’s the first time they’ve ever admitted that to us. Her daily insulin needs will be the lowest of any child they’ve ever put on the pump (but nowhere near the lowest of kids elsewhere who are put on the pump). Our endo told us, “This is new for us. We’ll be learning together.” Perhaps they’ve decided we’re a good teaching case. I don’t know, I’m just grateful that we’re finally getting somewhere.

Greg and I requested samples of infusion sets to wear on ourselves over the weekend so we could decide which we thought was best. I’ll post separately on that.  I called in today and reported that the trial went well and we’re ready to go. Wednesday she will wear a battery-less pump for 24 hours. By Friday afternoon, we should be training on a live pump.

Bring it on.

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.

I told myself last night not to read about diabetes anymore. I told myself to take a break and go do something to relax.  A few hours of painstaking trolling through forums later, I hit paydirt.

This bad boy is coming out in 2012 and it’s going to be very difficult to convince myself not to come out of pocket for it.  Of course, by then, I might have my heart set on one of the many other “patch” pumps that are on the horizon.

By comparison, the pump we will be getting will be this. It seems like a perfectly fine pump. It’s a small site connected by a long tube to a large-ish pump. You’ve got to thread the tube through the clothes and watch out to avoid it getting ripped out or snagged. The tube can get kinked or clogged. The tubing is connected to a pump about the size of a blackberry that has to be worn somewhere on the body. For Ainsley, we will have to sew a special pocket into the backs of all of her shirts so that  she can’t mess with it.

Contrast this with some of the new pumps that will be coming out that are close cousins to the nicotine patch  - a flat, disposable adhesive patch that gets replaced daily. Yeah, baby.

Today we have our 4th post-diagnostic appointment with our diabetes care team. Our team includes:

1) Child Life Specialist – she provides ideas to help the kids cope and shares information about cool non-profit support programs.

2) Social Worker – her job seems to be to make sure that Greg and I are coping.

3) Dietitian - she helps determine how many carbs Ainsley should be eating, her carb-to-insulin ratio, and lectures me on how my 2 year old should enjoy eating raw broccoli and bell peppers.

4) Case Manager/Certified Diabetes Educator (CDE) – this is our point person for daily questions and issues like dose changing, Sick Days, etc.

5) Pediatric Endocrinologist – he oversees Ainsley’s care and has the final say on her treatments.

Each visit is about 1.5-2 hours long. Whew.  After today, we will go from weekly appointments to monthly appointments. Then we will go to quarterly appointments and that will be permanent.

Today I expect to be talking about Ainsley’s recent illness and how we weathered that, her weight gain, how the new carb-to-insulin ratio is working out (I’ve made some changes to it), and – the biggie – the pump.

Since this is our last visit for a month, we are going to make a big push for the pump today. I know some of you have questioned why we are “rushing” into the pump. Let me give you an example.

Yesterday after dropping Ellory off at preschool, I came home and prepped Ainsley’s lunch, did her BG, and calculated and drew her dose. I thought that she would like the lunch (lasagna) and would eat most of it. I dosed her accordingly. She ate a few bites and then stopped. Typical for a 2 year old. I worked on her for a while but she wasn’t going to keep eating, so I backed the insulin with some Pediasure. She went off to nap.

Upon waking from nap, she came straight downstairs to her spot at the kitchen table and sobbed heartbrokenly upon finding that her lunch plate had been removed. She was hungry and wanted to finish eating her yummy lunch that she was now ready for. She sobbed harder when I wouldn’t give it back to her. I couldn’t. It was awful.

The reason I couldn’t give it back was this: I had dosed her and backed her dose. If I were to give her more carbs, I would have to give more insulin. But we were still within 1.5 hours of the last dose. Novolog stays active in the body for 3+ hours. If I were to add more insulin, it could go too far and she could plummet. I would be speculating on how much insulin to give her to cover the rest of the meal. So instead I told her I was sorry and gave her a stack of cucumber slices. She was so hungry she actually ate them.

This is the type of scenario the pump is for. With a pump, I could have given us a buffer zone by only giving her half a dose before she ate, in case she didn’t eat it all. Then I could have just given her the rest of her lunch after nap and bolused accordingly. “Bolused” is a fancy term for dosing that applies to the pump. It is a more appropriate word because it implies more precise dosing. Example: a pump would have told me how much insulin was still on board from pre-lunch and advised me accordingly. I could have then made a determination on how to dose for the second half of lunch which may not have been equal to the other “half” of her dose.

A pump is a more sophisticated and intelligent tool for managing diabetes, plain and simple. It is not easier to use, and we are very aware of this. It requires a reasonably sophisticated and intelligent mind to operate it well.  I think this is the primary reason our diabetes care team is reluctant to give it to us. Clearly, they don’t know us very well yet.