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.

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.

(For those of you who don’t know, #dfeast is a twitter event for the DOC where we swap diabetes-friendly recipes. This is my first one!)

I have a 4 and 2 year old who are fairly picky eaters. Our breakfast options are pretty limited. Cereal does a number on Ainsley’s blood sugar as does oatmeal. And neither one of them is great about eating eggs. ACK.

Then I saw this recipe and decided to give it a whirl. I am planning to try a gluten-free and gluten-free/reduced-sugar incarnation but the original went over so well I thought I’d share. Enjoy!

Ingredients

• 1/2 cup all-purpose flour (I used white whole-wheat)
• 1 pinch salt
• 2 tablespoons white sugar
• 1/4 cup milk
• 2 eggs
• 1 large banana, sliced (extra for topping, if desired)
• 2 tablespoons vegetable oil
• Dusting of powdered sugar for topping, if desired

Directions

1. In a bowl, combine the flour, salt and sugar. Gradually pour in the milk, stirring constantly, until a smooth batter is formed. Add the eggs, one at time, stirring well each addition. Stir in sliced bananas.
2. Heat oil and butter in a nine inch non-stick skillet over medium heat. Pour the mixture in by spoonfuls, spreading the mixture evenly across the pan. When the bottom has turned a golden brown turn the frittata and cook over low heat until golden brown on the other side. Sprinkle with powdered sugar and add additional sliced banana if desired. Serve.

I think she likes it!

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.

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.