Continuous Glucose "MOM"iter

Chase's first report from the CGM. Gary and I like to sing, "Swing high, swing low, stupid, stinking diabetes." The goal is to have him in the green area. I'd sell my soul for a straight line in the 100 area:

I picked up a new book this week that has me enthralled. I love a book that is hard to put down - one that makes you think, laugh out loud, and sometimes cry. It's called Think Like a Pancreas. Really, it's good. I hope by the time that I'm done with it I will have learned some tips and tricks to manage Chase's diabetes better.

Every day with diabetes seems to be a learning experience. With the right tools and knowledge you might be able to make it through the day without a stiff drink (just kidding, sort of). A year ago we were finally approved for a continuous glucose monitor (CGM). Although it hasn't been all that and a bag of chips (HUGE needle which has left an abscess on two occasions), it is an invaluable tool.

We no longer make any adjustments to his pump without having the sensor on him for a couple of days. One quick upload to the computer and we are able to print out a graph of his blood sugar pattern for 24 hours. Amazing technology. Not perfect, but amazing.

With a tweak here and there, we are able to reign in his numbers. A little more insulin here, a little less there and hopefully we get a chart that doesn't look like a wild roller coaster ride. With the tighter control, I think we might have finally arrived at the time in this journey that I've been waiting for - he is able to feel his lows.

This is BIG. For six years I've been going off external cues from that kid. I have been his continuous glucose Momiter. At age 2 it was thumb sucking. And not your typical thumb sucking. It was "I'm going to suck this thumb right off in my sleep". Needless to say, Chase slept between Gary and me for a good year so we wouldn't miss that sign.

Then there was the "I'm acting naughty/goofy" clue. When he was 3 my mom came up to me and said, "Chase is in the basement pulling Kleenex out of the box, throwing them up in the air and saying, 'Fire! Fire! Fire!' Is that normal?" Um, no. A quick blood test revealed a blood sugar of 45.

Recently it's been the Little Sister Button. That girl can push his buttons like no other. While Gary and I find her singing precious, Chase finds it anything but. When Leah was belting out the tunes on a trip to Devils Lake and Chase wasn't reacting that revealed a blood glucose of 34.

Finally we are at the point where he grabs his glucometer and tests his blood because he feels low (can you hear the choir of angels singing?). Reigning in his numbers has been the key. When I downloaded his first report from the CGM it was heartbreaking. I can close my eyes and still still see the up and down, up and down, up and down marks. It made me sick to think how he must feel with numbers like those. I thought we were doing a good job managing his numbers. It was humbling.

With the CGM sensor I am able to let my guard down a little. It has been like turning the light on in a very dark room. We can finally see what we are up against. No day with diabetes is the same though, so even with the monitor we still have a lot to learning to do. So in the meanwhile, this mom won't stop thinking like a pancreas.

An Unfolding Universe

Front and center on my refrigerator door is a magnet with this quote: "And whether or not it is clear to you, no doubt the universe is unfolding as it should." It is my daily reminder that no matter how much I'd like to control my destiny and that of my children, I'm not in the driver's seat.

Flashback to November 29th, 2005. I'm sitting in Chase's hospital room listening to the laundry list of things we needed to do daily to keep Chase alive and well. I told nurse Maysil that my mantra whenever I was faced with life's challenges was, "this too shall pass". Since his diabetes wasn't going anywhere, I needed a new mantra.

It's taken me a few years to believe that the universe knows what it is doing. I can tell you that I absolutely hate diabetes but I love how it makes me take nothing for granted. Every morning that I see my little boy annoyed that I am waking him for school I am grateful. Dramatic? No. Google "Dead in bed syndrome". More nights than I care to admit, I lay next to him just to drink in the sound of him breathing. It is like sweet music that penetrates my soul.

I don't know why the universe has given us this challenge. Some days we are up to the challenge. Other days it breaks us one way or another as we wait for it to pass. And wait. And wait. In the meanwhile, it makes us Stronger, Healthier, Courageous beyond belief, and Grateful for every moment we share together on this planet.

Update on "G"

In October I wrote about our friend's little guy's diagnosis (The Rest Is Still Unwritten). I have to share what his mom, Lisa, wrote recently - it is truly beautiful:

"It’s been three months since Griffin’s diagnosis.

It’s hard for me to believe the progress we’ve made in this relatively short period of time. In the beginning, I couldn't even think about it, much less talk about it, without fighting tears. Then as the days turned into weeks, I would surprise myself by being able to hold a conversation about it without crying or without my lip trembling. Time helped with that, but so did the realization that many people didn’t know what type 1 diabetes is. A big part of my conversations with people ended up with me educating them about what it is (an autoimmune disease) and what it’s not (the “bad” diabetes.) As opposed to the good diabetes? Having to tell his story over and over and over out loud, explaining what it meant for him and us, helped me to see it for what it is as well as what it isn’t, and get to a less emotional place.

I tried not to cry around Griffin. The two exceptions I can think of happened pretty close together. The first was just after I took him in to have his blood sugar tested for the very first time, having been suspicious for a few weeks. The phlebotomist in the lab who took Griffin’s blood was in training. When she saw the number, she looked at her trainer and then at me with that expression I have seen many times since. The number was terribly high, and I knew what it meant. I kept my tears in check as we got his sweatshirt back on, and as we walked upstairs to pediatrics where they told us the doctor would be waiting to see us. The 2 of us sat in the waiting room, waiting for the Doctor to tell us what I already knew... what I had known on some subconscious level for weeks... But watching him climb around the bench we were sitting on and look out the window with his smile and his happy attitude, even as sick as his body was (this feeling had become his normal over the past few months) it made me well up to think that the next window he’d be looking out would be from a hospital room. I knew he’d be admitted with a number that high. He noticed me crying and asked why - and out of an absolute lack of any preparation for the question, and an impulse to tell the truth, I said, “Griffin, you have diabetes. That means your body doesn’t make insulin, and you need insulin to process the food you eat. And I feel sad about that right now but we are going to learn about how to keep you healthy and happy.” And he smiled at me and gave me a hug and with that, led me toward keeping my chin up. The second time I cried in front of him was about a week after he got out of the hospital. We were in the cereal aisle and he wanted sugary cereal and fruit snacks and I told him that those weren’t good choices for us. He cried and said, “I wish I didn’t have diabetes.” And I cried, too, and I said, “Griff, I wish you didn’t have it either. But you do, and we have to make good choices to keep you healthy.” I wasn’t crying because of the fruit snacks or sugary cereal--let’s face it, he’s better off without that stuff--but crying because of the magnitude of the issue, for the rest of his life it meant much, much, more. And we gave each other a hug and moved on.

I’ve spent an enormous amount of my waking life thinking about this, thinking about the now and the later, wondering how things will be for him, and of course, practicing acceptance. I have spent an extremely small amount of time hoping for a cure. I imagine once Griffin’s blood sugar management is more in his own hands, and after some of the initial life transition wears off, I may spend a little more time in that place, wishing. Hoping. But for now, most of the energy I have for this subject is tied up in learning more about it and planning and measuring and counting and watching the clock to figure out if he should test or snack or wait to eat so we can get an accurate test, etc. etc. etc.

People have remarked that he has responded to all of this very well, and that really is an understatement. He is easygoing about the blood testing (can do it on his own now!) and even about the shots. Every day I am thankful that he doesn’t push back with the needles. Since September 7th he has been poked about 750 times, between frequent blood testing and at least 4 shots of insulin per day. Yes, the needles are smaller than they once were. Yes, it’s great that he has a disease he can “manage.” Yes, he’s very young and this will always be his version of normal. All those things are true and are, most often, spoken by people who don’t have to watch their children go through this process every day, don’t have to approach every meal as a math problem, every blood test as a barometer of his health. And it’s not as simple as just insulin and food--activity and carb ratios and insulin sensitivity and blood sugar goals all have to be factored in--and can change on a dime. Since Griffin’s diagnosis, my empathy for parents of children with severe food allergies has gone through the roof. You can’t know the stress until you are in the situation. And we’ve been in the honeymoon phase! This is a legit and fleeting stage most type 1’s go through after diagnosis where levels are closer to normal... still a few beta cells hanging around the body that haven’t been killed off yet, doing their thing to keep his blood sugar normal.

One thing that helps tremendously is Griffin’s sense of humor. One of the first days we were home I was tearing up as I was getting ready for dinner. I was dreading the shot because the backs of his arms were covered in bruises from the insulin shots. I was feeling bad about having to poke him to test his blood, and after I did he squeezed his finger to get the blood out while saying, “Milk it... “ and putting his monitor up to the drop of blood on the tip of his finger while telling the test strip on the device to “Slurp it...” I had to laugh. He makes it easy to remember that this, while overwhelming and scary, isn't all that he is about. :)

Here’s what I know - Griffin’s acceptance of his diabetes and all that comes with it helps lead me toward practicing acceptance, too. His positive attitude shows me what work I have to do. And not just with his diabetes but with myself and my own challenges."

Six

Six years ago today. It feels like yesterday. Everyday we are still learning. Everyday we are still teaching. Everyday we are still hopeful for a cure.

(Our "D Day" story can be found here: A Retrospective To the Moon and Back)

I've kept this blog to record our journey and to educate. Below are the questions that I am asked most frequently:

#1 Most asked question - What were the signs?

Excessive thirst and frequent urination. Since drinking and peeing go together, it took a little while to realize something was not right. We remember vividly Chase sucking the juice out of an orange, asking for a 2nd, then a 3rd and then a 4th. Unknowingly, we were only raising his blood sugar higher.


#2 What is a normal blood sugar?

On average, I like to say 100. On D Day, Chase had fasted for 12 hours and his blood was 348.

#3 What is he not allowed to eat?

Nothing! We don't limit carbs, but diabetes has made us make healthier choices all around. I do believe that fruit snacks are evil and they are only used to bring up blood sugar numbers - much to my children's dismay.

And then, there are the questions I think that I should be not be held legally responsible for if I should say, hurt someone for asking:

He doesn't look overweight. Did he eat a lot of sugar as a baby?

Well, Gary and I used to like to give him a 2# bag of Crystal sugar and a spoon. Is that wrong? In all seriousness, it is the #1 most frustrating question I get. NO. NO. NO. It's an autoimmune disorder. His body attacked his insulin producing cells. It has NOTHING to do with weight or sugar intake. It is just a shitty card he was handed at far too young an age.

Will he outgrow it?

No (this is the most painful question to answer). Not until a cure is found...which is why I am so passionate to find a cure & educate people in the meanwhile.

And then, there are the comments:

"At least it can be managed."

Yes, with constant vigilance, it can. We test blood 5 or more times a day, count every carb that passes his lips, give insulin accordingly & change pump sights religiously in order to avoid comas, amputations, nerve, kidney and eye damage. All this is done while trying to manage whatever else life throws our way.

"I could never do that to my child."

It's a small price to have that little boy in my life. He is the double layer of frosting on a cake. He is that first sip of coffee in the morning. He is the most awesome Lego set ever created. Doing nothing or even just 90% is not an option. Until a cure is found, I will give 100% & more.

How to conquer your fear of needles

Insanely large glucose sensor needle (needle comes out leaving in a long strip of microchips to read blood glucose) replaced every 6 days. (Chase gets and extra hour of Wii time for sensor changes.) Infusion site needle (where the insulin comes out of from the pump - this one stays in) replaced every 2-3 days. All placed on the only fatty real estate the kid has on his body - his tushie.

Yesterday I thought of Chase when I had to get my flu shot. I usually wimp out and get the mist, but this year I had to get the shot. He's my hero when it comes to needles coming anywhere near me. If he can do it a couple times a week, I can handle a yearly shot. He's also considerate - he told me to do his sensor needle before his grandma came to our house because it gives her the "hebbie jebbies".

The Rest Is Still Unwritten

Last month it happened again. The call.

"Hey K. What's up?"

"Hey, Susan. L is at the clinic with G right now. Guess what his blood sugar is."

Immediately putting my hand on my forehead I say, "I don't want to."

"Just guess," he prods.

"You're going to make me cry. I don't want to."

"Just do it!"

"Fine, 101," I say bracing for the real number.

"Over 400."

"Crap," is all I can think to say. (I may have used another word.)

K asks me if there could be any other reason for a 400 blood sugar. I can't think of any other possible reason, but I ask him what his son's symptoms were that prompted them to take him in. Frequent urination and constant drinking. Crap. Crap. Crap.

Another call an hour later confirms my fear. His little guy has type 1. I promise to visit them at the hospital the next day.

As I lay in bed that night, my mind kept going back to little G and his family. A year ago this month it was our friends' daughter, "A's", diagnosis that shook me. Memories of Chase's diagnosis day came flooding back both times, yet, and each time I couldn't help but think, "I don't know what they are going through."

In a way, I had a slight advantage to G and A's families. My dad was diagnosed the year I was born. I grew up watching him give himself daily injections of insulin. Sometimes I even "helped" him give himself shots. I knew what insulin smelled like (it's hard to describe if you've never smelled it before). I was raised by a diabetic. I was familiar with the routine.

I consider us lucky in other ways, too. At the time of his diagnosis, Chase was our one and only child. I worked part time and was able to leave work for over a month to learn all I could about diabetes. My day care provider was ready and willing to take him back into her care when I was ready to go back to work. Yes, it really sucked at the time that he was only 2 years old but we were were blessed. He hasn't remembered life any other way.

After having been in this battle for nearly 6 years, it's hard to know what to say when someone else's child is diagnosed (other than "Crap!'). I can't assume to fully know what they are going through. I told A's family that, "It gets easier." The problem with that advice is that I'm not sure I believe it myself. Certain things get easier, but diabetes is always there. Day after day. Year after year. All I was able to muster to G's dad was "Crap." Not exactly the comforting words he wanted to hear, I'm sure.

What I remember from diagnosis day was mourning for Chase's childhood. Birthday parties, trick or treating, holidays, school, sports, traveling - all would be affected by him having diabetes. Oh, how I cried. In reality, though, we've been too stubborn to let it have the staring role in his life. We work around it and he is able to be a happy, healthy, and despite his mother, a normal kid.

I hope to never receive another call, but if I should, my advice is this: Your family story may have taken an unexpected turn, but it is a story still being written. Diabetes will take the role you give it. Don't give it a staring role. Your child will inspire, amaze, and make you proud every day from here on out. It's not the story you would have written, but it's better - it now has a super hero in it.

The Medtronic Store

Pet peeve #110 of diabetes - my closet resembles a Medtronic warehouse. When your husband's job is to preach emergency preparedness, you HAVE to have your shelves stocked with insulin pump supplies, sensor needles, test strips and lancets. The main problem - where do you put it all?

Get it. Got it. Good!

One of our 4 yearly trips to Medcenter One. Yep, that's normal.

Well, August came and left and I have to be honest and admit that I wished the summer away. Fall was the projection for the end of the flooding and life is slowly getting back to "normal". Life in our household is ever changing, so normal always deserves quotation marks.

Chase is back in school. Now that we have 2 years under our belt, making the transition back is getting easier each year. I feel truly blessed to have the full support of the staff at Solheim. They get it. They got it right away.

Getting people to understand type 1 is not easy. Either I get a deer in the headlights look when I describe what it takes to keep my kid healthy, happy and alive. Or I get the wave of the hand and an "It can't be that bad" comment or look. I'd rather have a deer in the headlights look because then I know they get it.

A few years ago I had a "wave of the hand" friend watch Chase for a couple days. After the first day she met me a the door and said, "I had no idea managing diabetes was so hard!" Part of me felt good to know that she finally got it. The other part of me wanted to ask, "What took you so long?".

I'm not sure why some get it and some don't. Maybe because when you see a child with type 1 you don't see a sick kid. They look just like any other kid.

Or, maybe you've never been around what a "normal" day looks like:

7:00 am - Grab glucometer, test strips and lancet. Pull back covers, grab foot, poke big toe for morning glucose reading. Do one of the following - treat high blood sugar on insulin pump (and wonder why he went so high during the night), wake sleepy child and force feed fruit snacks to treat low (and wonder why he went so low during the night), or tell sleepy child to wake up and get ready for school (always a good way to start the day).

7:15 am - Count amount of carbs in breakfast and give him insulin with the pump. Hope to heck that he eats everything otherwise he will have a low blood sugar later.

8:15 - Drop him off at school. Say a little prayer to God to watch over over your son. Wonder if watching him walk away from you is ever going to get easier.

8:45 - Arrive at work. Place cell phone on your desk just in case the school calls. Take that phone with you at all times - except into the bathroom because you learned a $150 lesson when he was in kindergarten that cell phones are not waterproof and that you don't need it with you at ALL times.

9:30/10 - Snack time at school. Have faith that your child is giving himself insulin for his morning snack.

11:30 - Have faith that his blood is being tested before lunch and that lows or highs are being treated correctly.

11:45 - Have faith that he is giving himself insulin for his lunch and that he eats all his lunch.

Noon-3:05 - Have faith that highs or lows are being caught and treated.

3:05 - Happy to have your little boy back in your care!!

3:20 - Keep nagging kid to give himself insulin for all the food he is inhaling after school.

5:30 - Test blood before supper. Treat high blood sugar or feed kid supper immediately if low. Count carbs eaten and give insulin accordingly.

7:00 - Nag kid to treat himself for any snacks.

8:00 - Test blood before bed - treat high with insulin and/or feed him a bedtime snack. Count carbs & give insulin.

Every three days - remove insulin infusion site, refill pump, poke kid in the butt with the infusion needle.

Every six days - remove sensor needle, find another spot on his little butt to replace sensor needle. Give the kid and extra hour on the Wii because that needle is HUGE.

That's a normal day and, though it may seem it, I'm not complaining. It's what I have to do to have that little boy in my life. I got it. I get it and life is good.

Four years of faces

Four years ago this coming Saturday the world was introduced to Leah Marie. The world has never been the same since.

Happy birthday to my little fire cracker. I love you!

Totally worth the wait.

A little girl with a thirst for getting into trouble.

And being slightly difficult & demanding at times...


And perhaps non cooperative?

Super silly

"Slightly" animated.

A bit goofy

Forever my beautiful daughter...no matter what silly face you give me!