Before we left the hospital with our newly diagnosed daughter, a wise diabetes educator suggested we designate a place in our home for diabetes care.
Particularly with a 13 month old baby, this was incredibly important advice. My daughter obviously did not understand why she was now being subjected to pokes from sharp objects many times a day. She only understood that she did not like it.
The suggestion was specific. We should choose a place where she did not otherwise ordinarily go. The idea was that the dining room table, the kitchen, her bedroom and the bathroom would remain safe places, with happy connotations. She could sit on the living room floor playing with her blocks assured that mommy would not suddenly appear with a syringe.
Our bedroom became the diabetes room. Blood sugar checks, insulin injections, and subsequently site changes all took place there. The hook to lure her in there was that the t.v. would be on. She'd then be distracted by the t.v. while her blood sugar was checked or her shot was given. She watched hours of Little Bear, Oswald, Oobi and Blue's Clues, all in five minute bits. The existence of Noggin, now Nick Jr., played a huge part in our early diabetes experience.
By her choice, we gradually progressed to blood sugar checks taking place wherever it was convenient, and she keeps those supplies in her room now.
To this day, though, she still prefers to do site changes in the spare room of our current house, with the t.v. on. The shows are different, but the idea remains the same. This bit of diabetes care is confined to a room my daughter doesn't often frequent. Out of sight, out of mind.
Diabetes Optional
The American Girl Store sells a variety of medical and dental accessories. Depending on her needs, a doll could have her own allergy-free lunch, a wheelchair, a hearing aid, a retainer, or glasses. These items allow children to make their dolls a bit more like themselves, or like people they know.
My daughter was perusing the catalog one recent afternoon, dreaming of all the items she'd own if we had a dedicated 'American Girl Wing' in our home. She was considering whether her doll, Kit, would ever need a wheelchair.
"Maybe some day, they'll make an insulin pump for American Girl dolls," I thought out loud.
The reply was instant and adamant.
"I wouldn't want one."
A pause.
Then, "Why would anyone want that?"
"Why not?" I asked.
"I wouldn't want Kit to have diabetes," was the quick reply.
"No?" I prompted, thinking about how much Kit has in common with my daughter. She has a ballet outfit, a softball uniform, her own instrument and music stand, and tons of tiny books.
"Can you imagine me telling her she suddenly had diabetes? She'd be so upset. I wouldn't want to do that to her. She wouldn't want to have diabetes."
Of course she wouldn't.
Indeed, who would?
Analysis
The January Diabetes Social Media Advocacy blog carnival post asks me to fill in the blank: 'Stiving for ......... in 2013.'
'Analysis' is the word which best fills in the blank.
I tend to go in spurts in terms of how much time I spend on my daughter's diabetes. I don't think this is unusual. I would imagine phases of simply reacting to numbers and moving on occur for many people who live with diabetes. There are other things going on in life, and many of them are more fun or at least more interesting than sorting through a week's blood sugar log.
To be clear, we don't ever stop managing her diabetes. The finger sticks, carb counting, and bolusing continue all day, every day. The 2 a.m. checks happen. I continue to be alarmed by and to react to very high or very low numbers.
What I don't do consistently is stop to evaluate the overall picture. I'm certain we could eliminate more highs and lows if patterns were picked up earlier than they often are.
Eventually, something will move me to action. It could be a week of constant calls from the school nurse's office or a series of sleepless nights. I'll then take a long hard look at the numbers and make some adjustments or call the endocrinology team. Yet analyzing those numbers more regularly could quite obviously lead to better blood sugar control, resulting in better health.
With a growing 'tween,' adjustments are needed more often than ever. Therefore, 2013 seems like the perfect year to adopt a goal of weekly blood sugar reviews.
What will a consistent weekly diabetes analysis yield? Fewer calls from the nurse's office? More sleep? Fewer hours of my daughter feeling sluggish from high blood sugar? A grocery savings on juice boxes? More productive endocrinology appointments? A lower A1C?
I hope it's all of the above.
“This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/january-dsma-blog-carnival-2/“
'Analysis' is the word which best fills in the blank.
I tend to go in spurts in terms of how much time I spend on my daughter's diabetes. I don't think this is unusual. I would imagine phases of simply reacting to numbers and moving on occur for many people who live with diabetes. There are other things going on in life, and many of them are more fun or at least more interesting than sorting through a week's blood sugar log.
To be clear, we don't ever stop managing her diabetes. The finger sticks, carb counting, and bolusing continue all day, every day. The 2 a.m. checks happen. I continue to be alarmed by and to react to very high or very low numbers.
What I don't do consistently is stop to evaluate the overall picture. I'm certain we could eliminate more highs and lows if patterns were picked up earlier than they often are.
Eventually, something will move me to action. It could be a week of constant calls from the school nurse's office or a series of sleepless nights. I'll then take a long hard look at the numbers and make some adjustments or call the endocrinology team. Yet analyzing those numbers more regularly could quite obviously lead to better blood sugar control, resulting in better health.
With a growing 'tween,' adjustments are needed more often than ever. Therefore, 2013 seems like the perfect year to adopt a goal of weekly blood sugar reviews.
What will a consistent weekly diabetes analysis yield? Fewer calls from the nurse's office? More sleep? Fewer hours of my daughter feeling sluggish from high blood sugar? A grocery savings on juice boxes? More productive endocrinology appointments? A lower A1C?
I hope it's all of the above.
“This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/january-dsma-blog-carnival-2/“
We
"We forgot to bolus that second piece of toast."
That was my daughter's reasoning for the somewhat elevated blood sugar at her 10:17 lunchtime today. She was probably right.
What struck me about the conversation was not the forgotten toast or the need to add a correction to the lunch bolus. These things happen when we must live our lives concurrently with living with diabetes.
What struck me was the 'we.'
Up until fairly recently, the sentence would have been, 'You forgot to bolus that second piece of toast.'
That 'we' forgot hints at my daughter's increasing ownership of managing her diabetes.
Some day, it will be 'I forgot.'
For now, 'we' is just right. She realizes that she has some responsibility in this, and wants to take it. She also knows that her parents, school nurse, and other trusted adults will help her whenever she needs it.
Teaching her to manage her diabetes, as she ultimately will need to do independently, is important.
Meanwhile, she also needs to be a kid. So, yes, 'we' forgot the toast. She remembered to read the comics while she ate it though, and to clear her place when she was finished. These were her 'be a kid' responsibilities.
I value her increased interest in managing her diabetes. Yet, truth be told, while 'we' forgot, I'm the one who should have remembered.
Her ultimate job was to enjoy her toast and today's 'Mutts' comic strip.
That was my daughter's reasoning for the somewhat elevated blood sugar at her 10:17 lunchtime today. She was probably right.
What struck me about the conversation was not the forgotten toast or the need to add a correction to the lunch bolus. These things happen when we must live our lives concurrently with living with diabetes.
What struck me was the 'we.'
Up until fairly recently, the sentence would have been, 'You forgot to bolus that second piece of toast.'
That 'we' forgot hints at my daughter's increasing ownership of managing her diabetes.
Some day, it will be 'I forgot.'
For now, 'we' is just right. She realizes that she has some responsibility in this, and wants to take it. She also knows that her parents, school nurse, and other trusted adults will help her whenever she needs it.
Teaching her to manage her diabetes, as she ultimately will need to do independently, is important.
Meanwhile, she also needs to be a kid. So, yes, 'we' forgot the toast. She remembered to read the comics while she ate it though, and to clear her place when she was finished. These were her 'be a kid' responsibilities.
I value her increased interest in managing her diabetes. Yet, truth be told, while 'we' forgot, I'm the one who should have remembered.
Her ultimate job was to enjoy her toast and today's 'Mutts' comic strip.
The Delayed Opening
This mess caused a delayed opening of school today.
The delayed opening caused a bigger mess, blood-sugar-wise.
Causes of said mess included:
- Neglecting to check blood sugar before finishing most of breakfast. The excitement over extra pajama time distracted us terribly.
- Spending an ordinarily sedentary half-hour scraping ice off of our car and driveway.
- Lunch at the civilized but unusual hour of 11:14.
- Gym following lunch in a more rapid fashion than usual.
Soon I will drive her home in what is now just a wet mess, with ice turning to slush and fog. Things will presumably begin to take a more ordinary course. Homework, piano, then perhaps a few pages of her book before dinner.
Hopefully diabetes picks up quickly on this return to routine.
Bits And Pieces
I've run across a few bits and pieces on the internet which will, perhaps, be of interest:
Lee Ann Thrill has started the VIAL Project, a website designed for people with type 1 diabetes and mild to severe food and body issues. If disordered eating and/or body image issues are part of your or your loved one's experience with diabetes, please check this project out.
Tandem Diabetes and JDRF are working together on a new 'dual-chambered' insulin pump, explained nicely here on DiabetesMine. As I understand it with my limited grasp of things technological, one chamber is for insulin, the other for another pancreas-related hormone such as symlin or glucagon. I just picked up the glucagon refill and considered again how complicated the mixing of it is, and how terrifying the needle is. Boy wouldn't a little resevoir of it right in the pump be awesome? And of course, this is another step towards the closed loop artificial pancreas we're all waiting for.
Lastly, from the 'diabetes role models' department, this was a nice piece about Jay Cutler on Yahoo Sports. He is the quarterback for the Chicago Bears and a sports hero to many, including Ruby, our stuffed bear with diabetes.
It's encouraging, I think, to learn what people are doing when it comes to diabetes. These three bits represent but a tiny sample of those out there doing their part to help.
Lee Ann Thrill has started the VIAL Project, a website designed for people with type 1 diabetes and mild to severe food and body issues. If disordered eating and/or body image issues are part of your or your loved one's experience with diabetes, please check this project out.
Tandem Diabetes and JDRF are working together on a new 'dual-chambered' insulin pump, explained nicely here on DiabetesMine. As I understand it with my limited grasp of things technological, one chamber is for insulin, the other for another pancreas-related hormone such as symlin or glucagon. I just picked up the glucagon refill and considered again how complicated the mixing of it is, and how terrifying the needle is. Boy wouldn't a little resevoir of it right in the pump be awesome? And of course, this is another step towards the closed loop artificial pancreas we're all waiting for.
Lastly, from the 'diabetes role models' department, this was a nice piece about Jay Cutler on Yahoo Sports. He is the quarterback for the Chicago Bears and a sports hero to many, including Ruby, our stuffed bear with diabetes.
It's encouraging, I think, to learn what people are doing when it comes to diabetes. These three bits represent but a tiny sample of those out there doing their part to help.
Butter?
Our insurance now requires us to get a 90 day supply of insulin at a time. There are reasons to like this change. I don't have to plan ahead as carefully to be sure there's one for the school nurse's office, or to leave at Grandma and Grandpa's house. I don't make as many trips to CVS and am therefore less tempted by chocolate bar sales and cheap holiday decorations.
The problem is that I now have nowhere to keep my butter.
REALLY?
My mouth hung open and all I could seem to utter was, "REALLY?" when the doctor shared my daughter's A1C yesterday.
It was a good 'really.'
It was an absolute surprise.
There was no correlation with the 90 day average on the glucometer.
There was even less correlation with my sense of how things had been going.
With the numbers in front of us, it became a little clearer.
"See here? The middle of the night numbers are good, and wake-up is good. She's coming down well after breakfast too. That shows us that she's spending a great deal of the day in range."
Unfortunately that 'great deal of the day' is not the time I actually spend with her. From mid-afternoon through the evening, we're battling one 280 after the other, and we're testing constantly. To me it feels as though she's constantly over 200. Every attempt to reverse course has hit a dead end.
We left the appointment with some new strategies to get the latter part of the day under control too. We have hope that high blood sugars will soon stop haunting our afternoons.
It's easy to beat ourselves up over bumps in the road which is diabetes. If you're like me, it's then easy to turn these bumps into maddening, anxiety-producing mountains.
The silver lining is that yesterday, I had a very pleasant surprise.
It was a good 'really.'
It was an absolute surprise.
There was no correlation with the 90 day average on the glucometer.
There was even less correlation with my sense of how things had been going.
With the numbers in front of us, it became a little clearer.
"See here? The middle of the night numbers are good, and wake-up is good. She's coming down well after breakfast too. That shows us that she's spending a great deal of the day in range."
Unfortunately that 'great deal of the day' is not the time I actually spend with her. From mid-afternoon through the evening, we're battling one 280 after the other, and we're testing constantly. To me it feels as though she's constantly over 200. Every attempt to reverse course has hit a dead end.
We left the appointment with some new strategies to get the latter part of the day under control too. We have hope that high blood sugars will soon stop haunting our afternoons.
It's easy to beat ourselves up over bumps in the road which is diabetes. If you're like me, it's then easy to turn these bumps into maddening, anxiety-producing mountains.
The silver lining is that yesterday, I had a very pleasant surprise.
The Year In Review 2012
Below is the second annual Adventures In Diabetes Parenting year in review. A first or last line from one post per month takes you through a few significant moments in our year, diabetes-wise:
January: Of the school JDRF walk: She'll be reminded that she's not walking on her diabetes journey alone; there are at least 500 footsteps beside her all the way.
February: Of flying: We take some solace in the kindness of many of the security agents, and in the astonished looks of passers-by as they watch a small child being patted down to secure their safety.
March: Of our Disney vacation: A combination of careful preparation ahead of time, and enjoying every opportunity while we were there, though, made it a magical vacation.
April: Of a low blood sugar: "Mommy, that was scary," she said later in the day.
May: Of independence at a party: The expression on her face Saturday morning reminded me of the one after she took her first steps.
June: Of an unexpected and undeserved blood sugar: While I'm happy when a moment like this comes our way, I'm convinced that much of it is just a lucky roll of the dice.
July: Of counting: But wouldn't it be fun to dive into that tray of chips and salsa at the next cookout without enumerating each one?
August: Of a change in school nurses: As with many things diabetes, just when you think you have everything figured out, it's time to start all over again.
September: Of diabetes in school: But it's comforting to know that, should an argument arise, there's a document to back up my daughter's right to available chocolate-covered pretzels.
October: Of a successful 504 meeting: Most importantly, it ended with an understanding that my daughter, the school's staff, our doctors, my husband and I are a team working together to keep my daughter's diabetes from getting in the way of a good education.
January: Of the school JDRF walk: She'll be reminded that she's not walking on her diabetes journey alone; there are at least 500 footsteps beside her all the way.
February: Of flying: We take some solace in the kindness of many of the security agents, and in the astonished looks of passers-by as they watch a small child being patted down to secure their safety.
March: Of our Disney vacation: A combination of careful preparation ahead of time, and enjoying every opportunity while we were there, though, made it a magical vacation.
April: Of a low blood sugar: "Mommy, that was scary," she said later in the day.
May: Of independence at a party: The expression on her face Saturday morning reminded me of the one after she took her first steps.
June: Of an unexpected and undeserved blood sugar: While I'm happy when a moment like this comes our way, I'm convinced that much of it is just a lucky roll of the dice.
July: Of counting: But wouldn't it be fun to dive into that tray of chips and salsa at the next cookout without enumerating each one?
August: Of a change in school nurses: As with many things diabetes, just when you think you have everything figured out, it's time to start all over again.
September: Of diabetes in school: But it's comforting to know that, should an argument arise, there's a document to back up my daughter's right to available chocolate-covered pretzels.
October: Of a successful 504 meeting: Most importantly, it ended with an understanding that my daughter, the school's staff, our doctors, my husband and I are a team working together to keep my daughter's diabetes from getting in the way of a good education.
November: Of emergency preparedness: Sandy is the first
storm for which we've packed a full diabetes 'go bag.'
December: Of Newtown: Then we take a deep breath, and send our children off into the world, trusting
those in whose hands we leave them to do their best to keep them safe.
Santa Knows. We Proved It.
One Christmas when my daughter was about 4, she asked me what would happen if Santa came down the chimney while she was awake with a middle-of-the-night low blood sugar.
After I'd blinked the tears out of my eyes, I reminded her of a favorite Christmas song. It's probably the one from which she got the idea Santa would skip over her if she was awake, but I managed to turn it around. "Santa will know if we're awake. But he also knows everything about you, including that you have diabetes. He'll just visit other houses in our neighborhood first, and come back when you're asleep."
The same conversation has taken place regarding the Tooth Fairy and the Easter Bunny, with significant anxiety around the issue.
Should your household have similar concerns, I hope the following tale will provide some reassurance:
On Christmas eve, around 9 p.m., my child was dozing off with a blood sugar of 110. A check at 10 had her up for juice to treat a 77. By 10:45, she'd balanced out to a nice 118, and around 11 we were all dreaming of sugar plums. Yet at 2 a.m., I was rummaging around Grandma's refrigerator for more juice to treat a 79.
We must have been asleep by 3 when my nephew claims to have been awakened by reindeer hooves on the roof. But at 4:30, I was awakened by my daughter fumbling with her meter in the little guest room we were sharing. She was 73. More juice.
We all (magically) fell back to sleep, and when we emerged to the living room around 7 a.m., the stockings were filled! Santa had come. Not close to 10, or 2, or 4:30. Despite so much wakefulness, he knew when we were sleeping, and that's when he came.
Maybe next year, if I'm really good, he'll put on a pot of coffee for me before he gets back in his sleigh.
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