"F" on the A1c

I guess I was expecting better.

Since our last endo appointment (3 months ago), I have really buckled down on C's mangagment. We've been more regimented in finger checks, site changes and carb counting. She even dealt with the aftermath of a flu bug for 3 weeks, not too long ago. She had so many low numbers in that time frame that I thought for sure it would affect the A1c result yesterday.

I feel a bit deflated. It's down. But only by .2. I know. It was so high back in December. Is it going in the right direction? Yes. But certainly not enough for me to celebrate.

The doc and I tweeked her settings just a smidge. We talked about all the parameters, again. I told her I wished she could see the whole picture...you know...what exactly she ate...when we gave her food with no correction...exercise...mood...the whole darn picture. We decided that's exactly what needs to happen, at least for a while.

So...I'll be writing it all down. I have to find a bigger better logbook to do all this. The plan is to do it intensely for a week and email in the info. Then we'll have a better idea of what to change.

Back in the beginning of the year, I posted about the shame and guilt I felt about this topic. I suppose I still feel it. And though I don't want my life to be run by guilt and shame, I do want to turn it into the driving force to help C "gain better control."

I will admit...we have not been as tight as we could have been regarding site changes, carb counting, saying "no" to the sweets. We have taken an aloof position at times. "Hey, it's a birthday party!" or "It's a holiday!" or "Hey, it's just one piece of chocolate!"

Our endo appointment said it all. I can't even bring myself to write down her A1c number. I'm ashamed. She's on the pump, for heaven's sake. I'm the grown-up. It falls on me. Please understand, I don't ever make her to feel it's her fault...but she could tell I was saddened by the number. I tried to explain about her A1c, at a 7 year old level. It was difficult. At times, I don't even understand it all myself. Our doctor is sweet and positive..but yet, underneath the sweetness, I could tell, she meant what she said. "Keep the site changes every 3 days"..."Measure food carefully"..."Let's up her basals AND boluses"..."Right now, it's up to you." Gulp. Okay, diabetes...it's war! It's a new day, a clean slate. Here's our chance to tighten up.

And...here's to all you type 1 parents out there...the challenge of diabetes is big, but the love for our kids is bigger.

Is That a Video Game?

I love it when I can sit back and observe C educating those around us about diabetes!

The other day, at one of my son's baseball games, there was a little boy sitting on the bleachers behind us. His brother was also in the game. He must be around 4, maybe 5 at the most. As I was scrambling in C's bag to test her and check out the snacky situation, I reached around to pull out her pump from her pack. For the most part, this strange routine does not get much attention from people. We've learned how to do it quickly and without much fuss. But this time, it really caught the little boy's eyes.

"What's that?" he said, loudly. "Is it a video game? Can I play it? Where'd you get it? Why does she have that?" He wasn't stopping with the questions! And by now, those immediately near us were also beginning to wonder about this cute little pink thing themselves.

I interrupted him. "It's a machine, like a little computer, to help give C medicine," I said. I glanced up at the dad and smiled.

Before anyone could say anything else, the little boy continued. "Oh, I got medicine today. I have a cough. But I don't have to have a machine. Could I play with it? Does it have games?"

I could tell that more explanation was needed. By this time, another lady told me she thought C was awfully young to have a cell phone. She laughed. I just wasn't in the mood for diabetes education at the moment. But C chimed in and told the little boy herself "It's not a toy. It helps keep me healthy. I have diabetes. And my pump gives me insulin through this tube. So, no, you can't play with it. It's not a toy." To that, the little boy said, "oh, okay." In a split second he hopped off the back of the bleachers and was wrestling around with some other kids.

I whispered to C "good job." She smiled at me. "Let's go to the snackbar!"

Bonnie Hunt Hosts Mary Tyler Moore

Did you see the Bonnie Hunt Show yesterday? April 22nd? Mary Tyler Moore was on it! We love Mary! Her new book came out last month: Growing Up Again - Life, Loves and Oh Yeah, Diabetes. She is so open and candid about her type 1 challenge. Do you know her story. She was diagnosed at age 30. She has been the international chairman for the JDRF for many years and is active speaking at the JDRF's Childrens' Congress in Washington, D.C..

She responded to a young lady's remark about wanting a book to read about diabetes that was personal, experience-based...not a "how-to" book. Mary wrote autobiographically about not only her struggle with diabetes, but also about different aspects of her younger years. I have to say, it does help tremendously to read and relate on a personal level with someone who knows exactly what the challenge is in your own life. Thanks, Mary!!

All of the proceeds from the book are going directly to the JDRF! So, go out and buy yours today...I'm going to!

...And...if you missed the show, you can still catch some clips of it from Bonnie's website!

A Dangerous Diet

Deliberate insulin omission as a unique and readily available means of controlling weight, by inducing hyperglycemia and glycosuria.22 Many groups have shown that deliberate insulin omission or dose manipulation is the most common method of purging among girls with diabetes7,10,23 and that this behavior becomes progressively more common as weight and shape concerns increase in young women.10

This comes from an article by Dennis Daneman, MB,BCh, FRCPC & Gary Rodin, MD, FRCPC

"Eating Disorders in Adolescent Girls and Young Adult Women With Type 1 Diabetes"

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We were just finished with our last endo appointment for C. We had gotten some bad news regarding her A1c number (but that's for another post). As we rounded the corner and headed for the Tiger elevators - I love Childrens Hospital - we came upon a dad and his teenage daughter. As they continued their conversation, I couldn't help but over-hear. Okay! I was eaves-dropping. But I'm so glad I did. This is scary stuff. Every parent of a type 1 girl (or boy, for that matter) should know about this not-so-uncommon issue.

"You've got to take to heart what the doctor said, honey."

"I know, I know, dad, but I've lost so much weight! So what if my numbers were on the higher side. I've gotten back down to a size 4!"

"Sweetheart, the risk for complications just isn't worth it. Your doctor knows what she's talking about."

"Dad, it's not like I'm gonna go blind tomorrow!"

There was a knot in my stomach.

Before I realized what I was doing, I chimed in: "Your dad's right. It's just not worth it!" I looked at the dad. He faintly smiled at me. I hadn't been invited into the conversation. But there we were, in awkward silence, traveling down to the parking level together. As the elevator doors opened I looked down at C and squeezed her hand. I glanced at the pretty teenage girl. I smiled. She smiled back at me, but her face did not look convinced that this diet of high numbers is dangerous.

As we drove home, I tuned into Radio Disney for C. But I was consumed by my thoughts. They drowned out the Cheetah Girls and Hannah Montana as I wrestled with them nearly the entire 45 minute drive home. I supposed all I could really do is hope and pray that C continues to grow a healthy and realistic image of her body. And that she will care enough about her life to fight the "good diabetes fight" -- to strive for those in-range numbers, to test vigilently and to be honest with herself and her doctors.

Wrong Carb Info

Like most families, I suppose, we have our favorite foods around our house. Sometimes, grocery shopping gets so monotonous. Some staples in our cupboard and fridge: Gogurt, string cheese, fish crackers, unsweetened applesauce, saltine crackers, sugar-free popsicles, no-sugar-added fudgesicles, baby carrots, granola bars. These are things I throw into the cart without thinking twice about the carb counts. I know them by heart. C is getting pretty good at it too.

But sometimes, products can throw us for a loop. My kids love love love waffles and french toast. I know they're carb-packed, but we count them and correct with the pump accordingly. We were so used to Trader Joe's French Toast...yummy. It's frozen and convenient. I finally had to come to terms and accept that their carb count on the box just isn't correct. I even mentioned it to the friendly guy at the cash register in our neighborhood TJs before. He gave me the blankest look. I smiled and said, "well, you know, my daughter - she's diabetic." Still blank. He smiled too. "Maybe you could let the manager know that the carbohydrate count on the box just isn't right."

"Okay," he said. "Need any help out with that Miss?" (This is why I like him. He calls me "Miss" instead of "Ma'am.)

"No thanks! Don't forget to tell your manager."

I don't know if I can really change anything here. I just really miss my Trader Joe's French Toast.

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Has anyone ever come across carb counts on nutrition labels that just don't seem to match up? Have you ever tried to do something about it? What were your results?

2009 Design Challenge

Do you like contests? Do you like a challenge? Do you like to win? How about $10,000?!

Over at diabetesmine.com, you will find lots more info about the 2009 Design Challenge. Remember Amy's letter to Apple's Steve Jobs? With all the cool, creative "tech-y" things available today, why aren't there cool options when it comes to diabetes?

Living with diabetes can be (is!) a challenge in itself! Do you have an innovative idea for a diabetes gadget, device or application? Submit your idea in a 2 minute video clip or 2-3 page write-up. Not only would you be helping people live better with diabetes, but you could win up to $10,000! Kids can participate too!

So go ahead...click and get on over to diabetesmine.com! Check it all out and submit your great idea! Contest ends May 1, 2009.

Diagnosis Day

“So, how did you know she had diabetes?”


Inevitably, if enough information about my family is exchanged in an introduction, a new friend will come up with that question. I don’t ever want to give a pat answer. I judge the amount of time left for my response and decide which road I’ll take…

#1 answer…(not much time)…She was very, very ill with flu symptoms and ended up in the hospital. We are fortunate that it was diagnosed.

#2 answer…(unlimited time & attention)…It was December 2003—all the usual hustle and bustle for the holidays. We would be hosting Dan's side of the family. I convinced him that we would need to paint nearly the entire interior of our home, add a patio cover and heat outside. So, the race was on! We would be using every waking moment (+ a few moments when we should have been asleep!) Juggling 3 young kids in and around all the commotion was a difficult task.

Although, we were exhausted by the time our family Christmas gathering date arrived, it was a great time. However, I remember the morning of…Claire seemed like she was under the weather…you know…kind of cranky, small appetite. I thought…maybe she’s coming down with a bug…but…the show must go on! She was asking for a drink of milk quite often, lifting her sipper cup up to the fridge with a “mmmm” as she would. I thought not much about it at the time. At least she’s getting some calories in her, I thought.

After our festive evening, things wound down. As we tucked the kids in for the night, we noticed Claire’s face flushed with fever and sure enough it registered on the thermometer as low-grade. She was asking for more to drink. So, a cup of juice then off to bed. It would make sense to keep liquids in her…she had a fever.

The fever went on for a couple days, so off to the doctor we went. After a short exam--flu. You know the routine...rest and lots of fluids.

Several more days went by...still feverish, drinking furiously, and now there were middle-of-the-night diaper changes. There was noticeable weight loss. That was probably one of the first nerve pings I got. This is more than a flu bug. Off to the doctor, again. Quick check...ears, nose, throat. I got a "look" from the doc--"Lady, the flu is going around." I shrank, scooped up my baby and went back home.

A couple more days of the same. But now, there was vomitting (one of the great tests of motherhood, in my book). But this was not your normal "vomit several times and then get better." She would vomit and then not for a whole day, but then do it again. It just didn't make sense. Another call to the doctor. "Rest and plenty of fluids."

Somewhere between doctor visits, Christmas day came and went. Daddy and Claire stayed home. And I remember calling home to see how she was doing and Daddy said she had seemed really hungry and ate a bunch of scrambled eggs and seemed better and happy! (In hind sight, we know why...)

Four days after Christmas found me visiting at my sister's house. I got a call from home. Claire had woken up from her nap, vomitted, looked glassy-eyed and Dan was concerned. Some kind of nerve sensation hit me like lightning and I raced home. It was the weekend, so I grabbed the diaper bag and Claire and headed off to Urgent Care.

When the "on-call" doc saw us, she checked her out and mentioned something about not having the right equipment in the office to check for this or that or "diabetes"...Our instructions were to take her to the Emergency Room across the street if she seemed any worse later that night.

Around 11 pm, I peeked in to check on the kids. Both boys were sound asleep. When I entered Claire's room, her eyes were open, but glazed over. Her breathing was so shallow and rapid, almost as a dog panting. It was as if God simply took over my actions and made me pick her up, get the diaper bag and head to the E.R.. With juice in sipper, we arrived about 11:30 pm. It was packed! They checked her vitals and then, we waited. She had her blankey. We waited. She drank more juice. We waited. I changed her diaper several times. We waited. Out of drink...nearly out of diapers. I wanted so badly to go home. We almost did. I sincerely believe God took over and made me stay. Thank you!

By 4:30 am, we were finally called back. I explained things as best as I could to each nurse and attendant that came by our little curtained off spot. I mentioned to the main nurse that the urgent care doctor had mentioned something about "diabetes" in a list of other issues. It was not even 5 minutes later that he came back, opened her diaper (which was on the verge of rupture!), held some kind of strip down into the moisture and said some number under his breath, something in the 500's. From that moment on...it seemed as if I was physicall moved, shoved out of the way while 8-10 people converged onto Claire's bed...doing what?...I did not even know. I just knew this was serious stuff and I lost it!

I called Dan. "We're being admitted. I think she may have diabetes," I said. I cried it. I didn't even know why I was crying. I knew nothing of this disease...except maybe the sensationalism of it in the movies...losing limbs...going blind...my baby!

Suffice it to say, we were admitted to the hospital and up in a room on the Intensive Care Pediactric floor by 6:00 am. My little girl and me. It was a whirlwind of education. I.V. hook-up. Finger pokes. Toe pokes. Blood drawn. Crying. Screaming. Doctor enters our room. He was a kind, older man. He explained to me that Claire seems to have type 1 diabetes and that she will need to begin with insulin in her I.V. as soon as possible. Insulin? All I ever had heard about insulin was that once a person starts on it, that's it...a lifetime. No, I didn't want that. I need to talk with someone. Someone who knows about this but who loves us. The doctor was so kind, but so stearn. He took me by the shoulders. "If we do not start her on insulin, she will die." I nearly collapsed. I sank down into the chair next to the metal, cold-looking hospital crib. I stared at Claire's innocent little face. She was finally sleeping. I nodded my head slowly and signed all the papers the nurse was holding. She scurried out of the room and was back in seconds. She fiddled with the I.V., said "there, she'll start feeling a lot better now." She turned to face me and gave me a long hug. "I'm so glad you brought her into the E.R.. You did good, mom."How did we know she had diabetes? We didn't. God did.

Ballerina Girl

Remember those little musical jewelry boxes from childhood? When opened, they exposed a tiny spring-based ballerina figure that would twirl when the bottom crank was wound. They still make them. I got one for my little girl this past Christmas. She squealed with delight when she opened it. She enjoys keeping her trinkets in the different compartments and gazing at the dancer turning round.

Little girl ballerina dreams ---It is so precious to watch the littlest ones look up to the elegant beauties who flutter across the stage. My daughter and I have seen several shows as her older cousin develops more and more into an exquisite dancer. The Nutcracker Suite is performed each year. Cousin continues to gain bigger and better roles with each new season.

The stage darkens. The crowd hushes to a silence. And the music begins. There she is! There she is! On her point shoes this time! Beautiful costume. It sparkles in the spotlight. Hair is perfect - not a wisp out of place. Her face looks flawless, relaxed, innocent. Her hands flow gracefully up, back and down. Up on points and a partner helps turn her round. Long, lovely legs, that many of us are not blessed with. Her torso stretches out and up. Elegantly regal. She is truly a ballerina!

And so today.....we are off to ballet class. We're running late...use the restroom --change your clothes. Tights, leotard, wrap skirt."Mom, help me with my pump, please!"Pull the pack out of the leotard near the upper thigh...

"Here...it'll be okay like this."Hair slicked back and sprayed. Throw the slippers in the bag. We're really late now. "Hurry up, honey!" Grab two bags. Jump in the car.

"Mom - I feel low." No way around it--we're going to be late. Check finger. Back out of driveway. Yep - 52. Here's a juice box. Do we have snacks left in the other bag? Yes. Okay.

"Wait until you feel better, sweetie."

"I know Mom."Get to studio. Feeling better?---a little. Let's go in. Re-check - 78 - good. Get slippers on. Need a snack.

"Mom, I'm late" Doesn't matter. Granola bar. Chomp it down. Brush off crumbs. Teacher just about to close the door --- There. Made it. Whew. Peek in viewing window.......My beautiful ballerina girl. If I look closely, I can actually see her in the spotlight of a darkened stage.

The audience silent in anticipation. Her hair in place. Her hands floating up, back and down. Up on her points. Her costume sparkling. Her face, flawless. Long beautiful lines. Her torso out- stretched. Up. Twirl. Gorgeous.

Then I blink. My heart sinks. Maybe I'm the only one who notices the bulge from her insulin pump just beneath her skirt.

The JDRF

The JDRF. Are you familiar with this organization? It stands for Juvenile Diabetes Research Foundation.

my pump gear just received a letter from our chapter of the JDRF today in the mail. It is a letter for vendors who plan to be at the annual walk in the fall. Along with all the business and insurance info they sent, the following comes from an insert that was included.

Committed to a Cure

Every 30 seconds someone is diagnosed with diabetes; more than 1.3 million people are diagnosed each year. Diabetes is one of the most severe forms of chronic disease that accounts for nearly $132 billion of annual health care costs in the United States. Over 24 million Americans have diabetes and as many as 3 million have type 1 diabetes.

Usually striking before age 20, type 1 diabetes takes a harsh toll - people with the disease are insulin-dependent for life, and suffer complications such as blindness, amputation, heart disease, stroke, and kidney failure. Insulin is not a cure for diabetes; it is merely life support.

Controlling the disease requires non-stop vigilance. It's a grueling regimen that involves eating a carefully calculated diet, checking blood glucose levels up to ten times a day (by pricking a finger), insulin injections (as many as six per day), or delivery of insulin through a pump - just to maintain life. It means children and adults with type 1 diabetes and their families must live by the clock, day and night, until there is a cure.

The mission of the Juvenile Diabetes Research Foundation (JDRF) is to find a cure for diabetes and its complications through the support of research. JDRF is closer than ever to finding a cure for this devastating disease. Together, we will be the people who cure diabetes.

We did the high-lighting! Whew!...that really stuck out to me. Sometimes when I'm hovering around school or showing hesitation at a playdate, sometimes...I just want to scream--this is our reality! So hard to explain. But there it is, in black & white (& purple!).

The JDRF. That's some great hope you got there!

Another Beginning

We're back in the blogosphere! my pump gear took a little hiatus with our blogging while the new website was being configured. Now that we're up and running again, we can breathe a little easier and have so much we want to write about too!

Since this really is a new blog address for us...let's first decide the intention of this blog.....

1). To be clear, my pump gear wants a CURE for diabetes!!! We have been immensely affected by this disease, like so many of you। It is of most importance that we work toward a cure। That is why portions of our proceeds go to organizations dedicated to finding that cure। These include such groups as the Juvenile Diabetes Research Foundation and Childrens Hospital Los Angeles. These two places have helped to lift us out of the darkness that this diagnosis brings. So... #1 is...find a cure! If we come across any current, relevant information surrounding a cure, we will certainly write about it and bring it to you!

2). We believe, at present, an insulin pump is by far the best thing out there to help people gain better control over diabetes. And, kids are our passion! Kids need all the help they can get to live successfully with diabetes. That was the starting point for our company. Our daughter was just 3 years old when going onto the pump...still potty-training...and we had to find a way for her to wear this device 24/7. "If she has to live with an insulin pump, let's at least make it functional and fashionable!" That was the status of our hearts in the beginning. After digging deeper into the manufacturing process, our passion grew from helping just our own child to expanding our sights and helping other children along the way. What wonderful families we have met on this journey!...So...anything about the insulin pump and how to live with it--that will be in our blog as well.

3). Another purpose is to bring awareness to this disease. We are always on the hunt for news and events that are specific to diabetes, type 1 specifically. We strongly believe that the precursor of a cure is AWARENESS. This disease is so misunderstood by the general public. We want that to change! Anything that helps bring about that change is fair game here!

4). Lastly, but not anyless important than the first three intents is simply support. The diabetes online community is growing stronger everyday. What support we have received from those in the same boat. Not only have we found support in the management of the disease, but we have found emotional support...hey!...we're not alone...that has been a great feeling! And then, there's humor!...and boy, we all need that! It is our hope that humor will be a big part of this blogging process.

And so...we, at my pump gear will use this blog to bring awareness, opportunity and hope in all things diabetes. We hope you'll stick with us and share in this support system in the great blogosphere...

Until there's a cure,

my pump gear