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.

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.

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.

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.

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.

It means that part of Ainsley’s pancreas is dead or – more likely – dying. Her own immune system is killing it off.  The part it’s killing is the part that enables her pancreas to make insulin, something your body does for you all day long every day. Every time you take a mouthful, that part of your body is activated, keeping your sugars in check, keeping you from falling into serious illness and eventually death.

My first impulse upon learning this was, we must get her into a clinical trial NOW. Perhaps they could save what was left, I reasoned. Perhaps they could. There were no trials for her age group open that I could find, and the more deeply I looked into it, of the ones that were happening, I’m not sure I would have risked enrolling her.

So. We have accepted that the beta cells in Ainsley’s pancreas will die and we will lose them. Our hope now rests on a method that can grow them back. Until then, she will require insulin 24 hours a day for the foreseeable future. We will endeavor to be her pancreas for her, checking her blood sugar through finger sticks as often as possible without turning her into a human pincushion, and responding with the antidote that keeps her alive. We will check before meals and between meals and whenever she exercises or sits out in the hot sun. We will check before we go to bed and sometimes during the night.

We will weigh and measure all her food. We will count carbs religiously. We will carry a glucagon emergency syringe in case she passes out or has a seizure. We will stand a good chance of landing in the hospital anytime she gets a common virus.

That is what Type 1 Diabetes really means.

I had noticed that Ainsley was powering through sippy cups for a while but she had always been a bigger drinker than her older sister, Ellory. I think. It’s hard to remember the little stuff like that. In any case, it didn’t really start to capture my attention until she started wetting through her diapers. Leaks happen. She drinks a lot. I moved up a size.

It moved up my attention scale when the new size didn’t stop her wetting through her pants and I began proactively changing her diapers almost hourly to prevent it. I felt like I had a newborn again. I started to worry, just a little. Then there was the day she threw up after breakfast and was fine for the rest of the day. I decided to send an email to her doctor.

Our very excellent pediatrician, Dr. V, emailed me back saying she was pretty sure it was nothing but we should do a urine check just to be on the safe side. Reassured, I didn’t rush. When I couldn’t get her to pee in the cup in the lab, I just took it home with me. I threw my neck out, badly, and the cup sat neglected on the counter for a few days. We noticed that she was whiny and crying more. Then she threw up after breakfast again. We took the sample in the next day.

Dr. V called me at home in her very cool, very calm way.  ”Hi, Alicia, the lab results are in and her glucose was a little high. I’d like to do a followup.”  ”Ok, that sounds good. When?” “Could you bring her in right now?”  Bad Sign #1.

They took us at lunch when they don’t normally see patients. Bad Sign #2.  The nurse who roomed us did a quick finger poke. She turned away from me while she checked the readout and wouldn’t look at me while she asked, “Has she been very thirsty or wetting a lot? Has she thrown up at all?” Bad Sign #3. She never did look at me as she left the room and said, “Dr. V will be right in to discuss this with you.” Bad Sign #4.

By the time she came in I was expecting it, but I still closed my eyes and turned my face away when she said, “I think there’s something going on. You have an appointment with the Pediatric Endocrinology specialist in an hour.” She was so kind and gentle. We never used the word diabetes. We never used it once.

I held it together until I got Ainsley safely buckled into the backseat and then I sobbed as I drove out of the parking lot. I called Greg first. He took it well and we agreed I would pick him up. I called my mom next. She was stoic but I knew she was just holding the tears at bay. I called a friend next and asked her to pick up Ellory from preschool. She said, “I’m so sorry.”  It was the right thing to say. It felt so final.

I cried all the way to the Pediatric Subspecialty Clinic and through the pharmacy where we picked up the 8 prescriptions they had asked us to bring to our appointment. We met our Pediatric Endocrinologist and I stupidly asked him, “Are you SURE?” I assured him (begged is more like it) that I would put her on any diet, do anything, to make it go away. We were assured that Ainsley’s diabetes was not that kind. Then we got a crash course lasting several hours on everything Type 1 is and is not, how to check blood glucose, how to draw and administer insulin, how to feed her, when to feed her, what to do when things go wrong. And, we were assured, they will go wrong.

We practiced on pillows. Greg and I gave each other saline shots. It pinched. And there, out of nowhere, I gave my seemingly healthy baby her first dose of insulin. I didn’t flinch from it. She didn’t cry. We looked at each other, me wearing the face of grim, and her wearing wide, trusting eyes. They sent us on our way and we took Ainsley home and began our new life with her.