I’ve been trying to get Ainsley pumped up for the pump. Har har. I’ve been showing her the very impressive brochure over and over, emphasizing that she can choose whatever cool color she wants (always pink, despite my push for green). I’ve reminded her over and over that when we get the pump, we won’t have to do shots anymore. Now that we’re getting so close, I was really talking it up today. Ellory sat next to  us on the couch, in the background.

Fast forward to a few hours later when Ellory walked up to me and said, “Mom, when Ainsley gets the pump will that mean she doesn’t have diabetes anymore?” “No, babe, she will still have diabetes.”  ”Oh. Well, will it mean that she’ll be like a normal girl and she can eat whenever she wants?” A few skipped beats. “Yeah, babe, it will mean that she can eat whenever she wants.”  She smiles happily. “Ok!”

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.

Thursday, July 29th, was my sister’s birthday. Those of you who know me well know that I lost my sister to a car accident last August. This would have been her 27th birthday.

Lindsey was famously unlucky and it was a great family joke. She always swore that if anything could go wrong – or person get the shaft – that person would be her. Example: I recently shared a story of the last time I ever saw her. We were at our cousin’s outdoor wedding and it was ridiculously hot that day.  Thankfully, the area was largely shaded by enormous trees and when it was time for the ceremony to start we selected a nice shady row. Until we sat down and the sun suddenly burst through a gap in the trees to spotlight . . . my sister’s seat. She immediately turned to me and said, “OF COURSE I WOULD SIT IN THIS SEAT.” I can still see her quirked smile and hear her laughing. She had a great spirit.

Lindsey must be laughing now as it seems her legacy has remained or, I’m beginning to suspect, has been handed off to me. In the last 10 months, I’ve lost my only sister, had my husband diagnosed with celiac disease, and my youngest daughter diagnosed with Type 1 Diabetes. I was stung by a bee, which has happened before, but of course THIS TIME I would have a severe allergic reaction. And the list goes on. Oh, Lindsey. The irony is rich.

Thursday was a difficult day, as expected. Greg took the day off and we drove the girls out to my parents house a couple of hours away. We decided that instead of trying to just get through it, we wanted to forge ahead and try to celebrate her birth and life because we are all so very, very glad that we got to spend 26 years with her. I had a gorgeous bouquet made up in the style of her funeral arrangement: Bells of Ireland and purple Calla Lillies, her favorite. My dad brought white roses, a reminder of a beautiful gesture we received when she died.

Then we all went and chose balloons, some to keep at her memorial, and some to release, bearing our messages of love and devotion to Lindsey in that next place. There were gilded butterflies for her love of faerie and fantasy. There was green, for her favorite color, and blue for my mom’s signature color (“So she’ll know it’s from me,” she said). There was “Happy Birthday” and “Thinking of You”.  And there was mine, a golden star for the golden girl, upon which I wrote, “You Light Up My Life”.  Because she did and, I realize now, still does.

After we all wrote our messages to our girl, we gathered round her place and sang her Happy Birthday in cracking voices and we released those balloons into the sky and watched them float away. It was one of the most profound moments of my life.

Diabetes is crap but, as I often say, it’s an excellent distraction.  We stood around in the sun for a while while the girls picked flowers and played in the grass but it was getting close to dinnertime and Ainsley’s terrible pet was growing restless.  We went back to my parents’ house for dinner.

Her pre-dinner BG looked good at 129. She was served rice and beans and didn’t even get her dinner dose until after she had eaten her whole meal. We were so pleased we gave her a 4gram popsicle. Then we got the girls in their pajamas, kissed my parents goodbye, and got in the very clean, very brand new Rutabaga to drive the 2 hours home.

Ellory went straight to sleep but Ainsley was cranky and having a hard time falling asleep in her carseat. Understandable – she’s 2, it was bedtime, she hadn’t napped. She’ll  be fine once we hit the highway, I thought.  We hit the highway and instead of going to sleep she started projectile vomiting all over the back of the car. Vomit is unpleasant in any circumstance but in diabetes, it is dangerous and freaky. I was out of my seatbelt in a minute, screaming “Pull over! Something’s wrong! Something’s wrong!” Greg whipped into the next pullout, and we both exploded out of our seats, Greg ripping her from her carseat while I grabbed the water bottle and hosed her down so we could get a clean test. She was screaming, cars were flying by, vomit’s everywhere, but we just stood there and watched the meter countdown silently: 5…4…3…2… BG: 39.

39 is bad, very bad in a 2 year old, and definitely the worst number we have ever seen. Thanking Greg’s foresight (don’t ever tell him that), I leaped for the Pediasure he had put in my purse and let her chug the whole thing down. I checked her, and checked again, and again. She was coming up slow, but coming up. We sat, drained and terrorized, and told each other, “If she had fallen asleep instead, if she hadn’t thrown up, we wouldn’t have known for two hours. We wouldn’t have known until it was too late.”  We went over and over the dinner scenario. There was nothing there, nothing to help us understand how she could have fallen so far so fast.  We washed hands before the check. She ate all her food. She was dosed after eating. If anything, she should have been high.  All I can think is that at the moment in time when we got the 129, she was already falling fast, and a single stick doesn’t show that. Behold the beauty of the CGM.

A CGM would have shown me that she was dropping fast and, furthermore, would have alarmed when she crossed a BG threshold of my choosing. Had we somehow missed that, it would have alarmed again when she crossed the device’s safety threshold. We would have discovered it before she went into insulin shock.

By 11pm, she was up to 415 and we called it in. The on-call endocrinologist told us to leave her be (which killed me) and said, “You guys need some help, you don’t have the right tools to deal with this. She is too young and her doses too small and this isn’t working.”  Yeah. No kidding.

At midnight, I looked at the clock and called it a day. A no good, very bad day. As I closed my eyes, I watched Lindsey’s quirked brow and her smiling mouth. Of COURSE this would happen to us, she said, and I felt her arms around me.

The New York Times published this article a couple of days ago on the snowballing body of scientific evidence coming out regarding the extreme importance of Vitamin D in the human body. I’ve touched before on the link between Vitamin D and Type 1 Diabetes, so most of this wasn’t news to me (but may be to you, and is well worth reading). What was news to me, though, was this little tidbit:

“The rising incidence of Type 1 diabetes may be due, in part, to the current practice of protecting the young from sun exposure. When newborn infants in Finland were given 2,000 international units a day, Type 1 diabetes fell by 88 percent, Dr. Holick said.”

If you read my other post then you know that Finland is the country with the highest rate of Type 1 Diabetes, which makes a lot of sense from the Vitamin D perspective because they get no freaking sunshine up there at the top of the world.  So all we had to do was ignore every baby book and our pediatrician who told us 1) not to take her in the sun before 6 months old, and 2) then to always slather her with suncreen, and we could have prevented this? Drive a stake through my heart, why don’t you.

Now, of course, we know it’s almost certainly not as simple as all that. She needed a genetic component. She probably also had a viral component. Still – they dropped their rate by 88%.  Instantaneous death by mommy guilt. Somebody put me out of my misery.

One of the things that went through my mind on that first day as we were processing the ginormitude of everything we were having to learn was oh my god, we will never be able to leave her alone with anyone else.  Thankfully my CDE read my mind and said, “You might be thinking right about now that you’ll never go out again but you will go out again. You have to go out, now more than ever. You will find people who are willing and able to be trained and you will train them and it will be ok.”

She said this and it was a comfort but as we drove home, I still thought, how will we ever do this? Who’s going to be willing to stab Ainsley with a needle multiple times? How would we be able to train people for DAYS? There is so much to know. And, The Biggie: will we ever be able to trust someone to take her very life into their hands?

When I got home, I called my friend Ginette and spilled the whole ugly story. She listened and said appropriately awesome things like, “That BITES!” and “This sucks.” And after filling her ear with every gruesome detail, every chore, every burden we now bear, she said, “Well, listen, I just want you to know that when you’re ready, I want to learn how to do this. I’ll go to classes at the hospital, I’ll read the books, I’ll come over every day and hang out and watch what you do. I want to learn all of this so that I can watch Ainsley for you and know how to take care of her and do it right.  I’m not afraid to do it. I want to do it. We’ll do it together.”

I think I probably said something ridiculously understated like, “Thank you, that’s so nice” because I was busy trying not to fall over. Her attitude completely blew me away and I was deeply touched and humbled by her show of commitment and loyalty. That is real friendship. What a priceless gift.

That conversation bolstered my confidence and made me realize that there will be others – perhaps in  unexpected places – who will also be willing to step up and help shoulder the responsibility of Ainsley’s care. I stopped fearing it and started planning for it, and out of that the concept for this site was born.

So this one goes out to our beloved Nanette. In the immortal words of my sister, “You’re a good egg.”

We just returned from beautiful Lake Tahoe where we had our first D-vacation, and the firsts didn’t stop there. Lake Tahoe, of course, is at altitude; the area where we were was about 6200 feet. What a difference some feet makes.

Ainsley started running low the first evening we arrived.  The next day we battled it all day with extra snacks and extra checking, trying to keep things just right. I was actually pleased that she was running lower than usual and getting to eat more. That night I decided to check her earlier than my usual 10:30pm and she was at 64. I didn’t panic – I put some Pediasure in a sippy cup and came back to wake her and give it to her, something we do often when she’s lower than desirable at bedtime. Except I couldn’t wake her.  When touching her and calling her name had no effect, I started rubbing her chest and then pounding it while yelling, “AINSLEY WAKE UP!”  We turned on all the lights. Her head was just lolling on her neck.  We were at full panic mode and ready to break out the glucagon pen when she started crying, which was an improvement, but wouldn’t open her mouth for the drink.  Some piece of myself floated outside my body and looked down on the scene: me, trying to force my fingers into my 2 year old daughter’s mouth and pry her jaws open as she cries with her eyes rolling back in her head. That one is definitely going into the record books.

I was starting to think we’d have to use the pen anyway when we finally got her to drink up.  We gave her 4oz, which at home would have put her well over 200. She went up to 83. Another 4 oz only brought her over 100.  The next day, after consulting with a CDE, we took her off all scheduled insulin and just . . . waited. And tested. A lot.

Then commenced two days of getting our old daughter back. She ate what she wanted when she wanted. She ate entire bowls of fruit and even a gelato without issue. She positively lit up at mealtimes when I told her SURE she could have milk with that and NO PROBLEM she could  have extra french fries. She was energetic and cheery and always felt good. The difference was noticeable.  It was delightful. It was heartbreaking.

She began rising again before we even left. Since then we’ve been struggling to get back onto an insulin routine that keeps her pretty stable and it’s not working out well. There’s definitely some honeymooning going on, but not enough.  After that brief, bittersweet respite . . . no, not nearly enough.

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.

Why did this  happen? What kicked it off? Why do some kids get diagnosed at 2 and others not until they are 10 or 15 or even (as is becoming more common), in adulthood? These are questions with no good answers.

The first thing many people ask me is who else in our family has Type 1. Answer: no one.  Most people believe that Type 1 is a purely hereditary disease. That is so not true that in fact most of the Type 1 families I have met also have no one else in their family with Type 1.

The reality is that Type 1 has a genetic component but it’s only partly responsible. It may even be only a smallish piece of the puzzle.  Viruses look like good candidates right now, as do environmental factors. The viruses and the environmental factors may very well be be interrelated. And require the presence of a certain genetic component. Type 1 is a complex disease.

This website does  a beautiful job of collecting the major hypotheses and theories out there, as well as associated studies and information. I was particularly interested in the studies relating latitude with incidence of type 1. For example, Finland has the highest incidence of Type 1 of any country in the world. It turns out that, in either direction, as you approach one of the Earth’s poles, the higher the incidence of type 1. Closer to the equator = less incidence. It can be seen dramatically in Australia; the North end of the continent (closer to the equator) has a lower incidence of type 1 than the South end (closer to the pole). Weird, huh?

This ties into the Vitamin D hypothesis. Studies show that higher levels of Vitamin D have somewhat of a protective effect against Type 1. This correlates with living in an area that sees more sunshine. Likewise, low levels of Vitamin D have been found in diabetics.  Similar studies have been done with Omega-3′s.

Needless to say, Ellory can now hardly see her plate for all the vitamins piled in front of it at mealtime.

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.

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.