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.

I probably got a little ahead of myself yesterday in talking about the A1C before properly explaining about blood glucose (BG) levels.  Let’s start with a baseline example.

Those of us without diabetes could eat an entire chocolate cake and not see our BG go much above 140. Ainsley’s BG at diagnosis was 400.  This is why when I asked Dr. H if he was sure, he said, “I am 100% sure that your daughter is diabetic.” Now that I know what I know . . . yeah, no kidding.

Our goal in being Ainsley’s pancreas is to see her eat that chocolate cake and be able to dose her with such precision that she maybe doesn’t hit the 140, but she gets close.

This article does a nice job of giving us a more useful way to think about those day-to-day numbers and how they tie into the A1C.

Ah, the A1C. How quickly it has come to rule our life.  The A1C is known by other names but mostly we refer to it this way. Basically, it measures your average blood sugar over the last 3 months. Specifically, it looks at what percentage of your hemoglobin is coated with sugar.  Its purpose is to tell you how well, or how poorly, you are managing your diabetes. Or, in our case, your daughter’s diabetes. It feels a lot like a test. A very important test with a very important score.

An A1C in the 7′s, say 7.4, is common for a diabetic. In the 6′s is quite good. But it’s the 5′s, the 5′s are the Holy Grail we seek.  The 5′s would mean that her sugars are basically as good as other kids, kids with real live functioning pancreases (pancreii?). That would mean that her future health profile looks virtually the same as that of non-diabetic kids.

Ainsley’s A1C at diagnosis was 11%. Not good. My handy dandy A1C estimator tells me that she is now around 8.2 and was briefly as low as 7.9 before she got sick. We made a lot of progress in a short time. We have a long way to go. Our endocrinologist has advised us that for children of her age they don’t expect great control. He said we should shoot for an A1C in the low 7′s.

I say bollocks to that. Lorraine over at This Is Caleb demonstrated quite nicely in one of her videos that a truly dedicated mom who is willing to unleash her inner Anal Retentive can control sugars much better than that. Lorraine has taken studying specific foods and how they impact Caleb’s blood glucose to a science. She tracks it over time, along with the dosing algorithms she has tried each time, and is eventually able to hone in on a specific dosing schedule for each food that will keep Caleb’s BG in a good range. It looks like a lot of sleepless nights and a lot of pokes and a lot of work. But it can be done and, to me, it’s completely worth it. Every day we keep Ainsley in range is a day that no damage is done to her body.