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.

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.