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.

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.

We are new to this and by no means experts. Having said that, my first action as a new type 1 parent was to check 7 books out of the library, order 3 more, and commence reading the entire internet. After a week or so, I was of the firm opinion that an insulin pump was the best available care for Ainsley given that it most closely simulates the action of a normal pancreas. I then wanted to get her on a pump immediately.

What’s the hurry? A lot of diabetes management is realizing that whenever your, or in this case your child’s, blood glucose is out of range, you  are doing damage to your body – irreparable damage – that puts you at higher risk for diabetic complications like blindness, kidney disease, heart disease, neuropathy, etc. As a mom, I read this as WE MUST GET TIGHT CONTROL OF AINSLEY’S BLOOD SUGAR. I picked up the phone and called my CDE (Certified Diabetes Educator).

I got pushback. It was annoying. Kaiser has rules and regs about pumps and they don’t like to give them out before 3 months post-diagnosis. I look at that as 3 months of damage we can’t undo. I met a mom who was diagnosed at Stanford whose daughter was on the pump within 3 days of diagnosis. I brought this up. I was shot down. This is common.

Still, we like and respect our diabetes team and realize that we will be working with them for the forseeable future. We are working towards a compromise. Next week will be our fourth post-diagnostic appointment. We are hoping to get the all-clear for the pump then. I am planning to take this article along with me:

http://www.jdrf.org.uk/page.asp?section=438&sectionTitle=Insulin+pumps

and this one:

http://www.ncbi.nlm.nih.gov/pubmed/12378187?dopt=Abstract

and this:

I would put a link here but Medscape won’t let me. If you’re really interested in a great article called “The Insulin Pump In Infants and Young Children”, go to Google and type in “medscape 462784″. The second link that appears should be it.

and this:

ADA Abstract #1887-P: Multi-National Study Highlights Benefits of Pump Therapy

In the study of Medtronic insulin pump users entitled, “The PedPump Study: A Low Percentage of Basal Insulin and More Than Five Daily Boluses are Associated With Better Centralized A1C in 1041 Children on CSII in 17 Countries,” 1041 children with type 1 diabetes (ages 11.8 4.2 years) were studied in 30 centers throughout 17 countries. A benefit of insulin pump therapy is that patients can deliver extra insulin (called a bolus dosage) at the touch of a few buttons to reduce excessive rises in glucose levels. In the study, children who delivered more than five bolus dosages per day using their insulin pump had significantly better A1C levels. Moreover, the A1C levels of 710 children with less than half of their total daily insulin delivered as a baseline rate of insulin (known as a basal rate) were significantly better than the 331 children with a higher daily basal rate. This indicates that by fine-tuning bolus and basal insulin delivery with an insulin pump, patients were able to achieve better blood sugar control. Additionally, study results indicate a low incidence of severe high and low blood sugar, as well as hospitalizations, for pump users.