Nine Years

Nine years ago today, I took my first helicopter ride.  It was a gorgeous morning. The views of the coastline and the experience of flying low over the historic city were surreal. I made myself take it all in, purposely storing mental pictures which stay with me today.

I just wish I hadn't been in a medical helicopter, poised to land on the roof of a hospital where I would subsequently spend Christmas week with my child, enrolled in a crash course on diabetes.  In different circumstances, it would've been so much more fun.  Yet somehow I was able to separate myself from the circumstances to savor a few moments of that incredible journey.

This, in my humble opinion, was the right mindset with which to start our journey with diabetes. Though she's not nearly as ill as she was nine years ago today, I'm still worried about my child's health.  All of the time.  But I don't think about it all of the time.  If I did, I'd miss the better parts of life's journey.

Oops

On my way out of Walgreen's I checked the time.  If the nurse was going to call me about a snack-time blood sugar problem it would be soon.  I should be sure to have my phone handy.  And in that instant, I realized the horrible truth.

I forgot to bolus breakfast.

Approximately 40 grams of carbohydrate had been consumed on top of a blood sugar of 160, and no insulin had been given.  I was about to proactively call the school when my phone chimed.  A new voice mail.  Apparently I had no reception inside the store.

"Mrs. Osborne...please give me a call.  Your daughter's blood sugar is...very high."

By the time I called back, the nurse had spoken with my husband.  My daughter had figured out the cause of the problem, and a correction had been given.

However, I now had company throughout my Christmas shopping day.  At the bookstore, I received an update.  "She's still 360."

At the grocery store, I received the news, "She's down to 270."

At the dollar store, I learned she'd dropped below 240.

It was an awkward situation.  An unfortunate mistake turned into a situation a concerned medical professional legitimately took as a serious health concern. 

I certainly felt badly for having let her get to school (and through 2 hours of it) without fixing this problem.  On the other hand, this is real life.  Stuff like this happens.  Most of the time it doesn't, but faced with a week such as the one leading up to Christmas, it becomes difficult to juggle the details.  Unfortunately for my child, and for the peace of mind of our school nurse, my brain dropped this detail instead of forgetting the scotch tape at Walgreen's.

Cookies


"Cookie" was one of my daughter's first words.  She learned it at Christmas time, right after her first birthday.

She helped shake the colored sugar on a few cookies that year, and liked to keep me company in the kitchen while I baked.  Maybe because she scored a few cookies in the process.

Just weeks after she learned this most important of words, my daughter was diagnosed with diabetes.

I remember cookies being foremost on my mind as the childrens' hospital staff confirmed the diagnosis of diabetes on that December day.  We were facing a new life of finger pricking, injections, and constant vigilance, but a little piece of my worried and tired brain was elsewhere. What about the "cookies?"

Cookies are a huge piece of my family's Christmas tradition.  We usually make at least 6 varieties each year, both for ourselves and to give to family and friends.  I stood in that hospital room wondering if I'd ever get to share that treasured tradition with my only child.

Most of you already know this story has a happy ending.  Cookies, with their carbohydrates well counted, are a perfectly legitimate treat.  In fact, milk and cookies has been my daughter's bedtime snack choice since her days in the hospital, nearly 10 years ago.

By the following Christmas, each of my Christmas cookie recipe cards had the carbohydrate counts noted on them.  This year, I'm finding I even remember most of them without looking.

My daughter has been in the kitchen with me this week, baking and decorating.  Friday, her best friend will come over for a ginger bread cookie decorating marathon, a tradition I shared with my best friend when I was her age.  Each evening she samples one or two of our creations, and enjoys every bite.

With everything that changed with diabetes' arrival on the scene, the cookie tradition is one I'm certainly glad we could hold on to.

Excuse

We were on our way out the door on Sunday afternoon. 

My husband grabbed my daughter's meter and stopped to double-check it.

Him: "Hey...you put the vial back in here with no strips in it."



My daughter: "I didn't use the last one!"

A pause.

My daughter again:  "O.K.  I'll go get them."

It's an excuse that can work well in the right circumstances.  It can come in handy if you put away an empty milk carton or leave one tissue in the box.

But if you're the only person in the house with diabetes, there's really no way to make it work for you!

Now We Know

My daughter finally got her flu shot the other day.  "Finally" is definitely my characterization, not hers.  There was no eager anticipation on her part, though she was a good sport about it.

There are still, even after nearly 10 years, many diabetes moments which leave us scratching our heads.  This day reminded me, though, of how much we've learned over the years.  We've lived through the havoc of time changes, both daylight-savings and travel related.  We've handled swimming, hiking and softball.  We know what happens after she eats pizza, ice cream and cake.  While we don't suggest eating them all in one sitting, we even have a somewhat effective game plan to manage blood sugars if she does.

When you think about it, the post flu shot high is actually pretty logical compared to some of diabetes' other tricks.  Her body is fighting off the little bit of flu strain in order to create immunity.  Same idea as the highs we see when she's sick

Each year, our pediatrician mentions, "You know...this could throw her blood sugars off for a while...keep an eye on it."  Each year it impresses me that he thinks of it. 

If only he had warned us about bagels.

Lost!

Thursday evenings are hectic at our house.  Ballet is at 5:00.  An after school homework rush is followed by the changing into the ballet clothes ordeal.  We return home at 6:30, get dinner on the table and eaten, and then I have to leave the house again at 7:15. 

Last Thursday sounded like this:

"Did you leave it in the car?"

"No...I think I gave it to you."

I went out to the car to look, a task I usually make her do but she was already in her jammies, so I took some pity.

"It's not in the car, and I'm sure you never gave it to me, so where is it?"

"I took it out of my ballet bag and gave it to you at dance."

Looking through my purse in case I'd had a case of temporary amnesia, "Nope...I'm sure you didn't."

Crying, "I don't know where it is!"

The volume was escalating just as my husband walked in the door, at 7:00.  "What's going on?"

To him, "We can't find the ping."  To her, "Could you have taken it out and left it somewhere at ballet?"

"I don't KNOW!"

"O.k. ... just find the back-up meter and test."

The phone call to the ballet studio went surprisingly smoothly.  The receptionist seemed to understand that she was looking for a glucometer in a black case, and was able to find it in the dressing room.  She would be there until 9:00.

I inhaled my dinner and practiced for the Grand Am as I zoomed to the ballet studio.  Thanking the receptionist profusely, I dashed back out to the car and was miraculously only a few minutes late for my next activity, albeit a bit frazzled.

The next morning, my child said, "You seemed really mad, Mommy." 

"Well, I was kind-of mad," I said.  "That meter is really important!  It's the remote control to your pump, and it would be difficult for us to replace.  So it's something we need to be extra careful with, right?"

"I know, mommy...I don't know what happened."

Then I had to remind her she's not the only one who's done it. "It's o.k.  We all make mistakes.  Remember when I left it in that restaurant in the city?  And Daddy had to go back the next day to pick it up?"  She did.  "But you know what?  Since that day, if I've had it in my purse, I never leave somewhere without making sure it's still there.  I bet you'll do the same now."

"I bet I will."

Overheard

At the grocery store last week, there was a strange announcement over the loudspeaker.  Code something-or-another to aisle 5.  Still squarely in aisle one, focused on gathering my Thanksgiving fruits and vegetables, I figured whatever spill or security problem was occurring would be long gone before I made it that far.

Several minutes later, while I was still perusing the cranberries, an employee walked by and was stopped by the person stocking the apples.  "What happened over there?" she asked.

"There was a young girl...real little...with....you know?  Sugar? And she collapsed, kind of."

"What did you do?  Did you give her peanut butter?  I think that's supposed to be good."

"Well...her mother was with her and had something in her purse.  We got her a chair."

"Did you call the ambulance?"

"No...I don't know...Steve's still over there with them, but I think she was o.k."

I was taken aback at how little these people knew about diabetes, starting with the word itself. 

With my purse full of juice boxes, smarties, glucose tabs and glucagon, I made my way through the grocery store, on the look-out for this family.  As far as I know, I never encountered them.  Though if they'd picked themselves up and continued with their shopping, the diabetes would once again be invisible and they would have looked just like any of the multitude of Thanksgiving shoppers.


Stumped

Nope, it wasn't the stuffing that got me.  I counted the cranberry bread just fine.  Pecan pie?  No problem.  I'd done my homework and except for the difficulty of adding more and larger numbers of carbohydrate grams than usual, we cruised through Thanksgiving dinner and a few rounds of leftovers fairly smoothly.

Then Sunday morning came the offer of toaster waffles at Grandma and Grandpa's house.  I turned to head for the basement freezer to check the value-sized box for a number. 

"Oh...we took them all out of the box.  It's gone."

Maybe it would be in the meter's food bank.  Yes...one 7 inch waffle was right there.  Digging a tape measure out of the kitchen junk drawer, we learned these were 4 1/2 inch waffles.  Hmm.  Too much math for 7 a.m.

Out to the car in his p.j.'s went my husband for the Calorie King book we keep tucked in the door pocket.  Problem solved.

And now I'll probably never forget that 2 of Grandma and Grandpa's freezer waffles are 27 carbs.

Thankful

I am decidedly not thankful for diabetes.  It's an awful disease which negatively impacts my child and my family in many ways.  However, on this day, we're called to be thankful for things.  So here, in no particular order, is my list of diabetes-related things for which I am thankful.

1. People with diabetes.  We've met so many incredible people in the past 9 years, who we would not otherwise have had reason to know or to grow close to.  We would have missed out on some great friendships.

2. Insulin.  Insulin is not a cure.  It can, in fact, be a fairly dangerous treatment.  However, without it we would not currently have a beautiful, busy, happy child.

3. Technology.  Looking back even 15 years, the fact that my child has a glucometer which communicates with her insulin pump, contains a carbohydrate list, and can graph her blood sugar log is amazing.

4. Research Towards A Cure.  No, there wasn't a cure in 5 years as origionally promised.  But the progress over the past 10, particularly on the technology end, has been quite encouraging.

5. Medical Care.  I don't know if it's been our geographical locations or just great luck, but we've worked with the kindest and most competent endocrinologists and certified diabetes educators around.

6. The Internet.  Access to Children With Diabetes, JDRF, and a wide variety of blogs certainly lessens the feeling of isolation, and provides care ideas and perspectives to consider with our medical team.

7. Accessories.  Any parent of a girl will tell you the value of accessories, and with diabetes it's no different.  The choices of pump packs, infusion set colors, and medic-alert bracelets adds a bit of color to a dreary diabetes day.

8. Juice Boxes.  Clifford juice, Ernie and Bert Juice, Juicy Juice...it doesn't matter.  A measured low blood sugar treatment, complete with straw, makes things much easier.

9. My Child.  Nature or nurture?  Probably some of each, but this kid puts up with diabetes' shenanigans with such maturity and grace, it puts most of us to shame in how we deal with obstacles in our lives.  I know...the teenage years are ahead of me. But for right now, I find her amazing, and there are countless reasons why I am thankful for her.

10. Carbohydrate Counting.  Last, but not least on this particular day, I'm grateful to be able to count carbohydrates and deliver insulin accordingly.  We may not always do it perfectly, but it's hard to imagine limiting my child to one starch choice at Thanksgiving dinner.  Would it be the potatoes? Stuffing?  Cranberry bread?  Winter Squash?  Crescent rolls? 

Well, maybe on a day such as today I'm also thankful for the correction bolus.  It's like having an eraser when taking the math test which is our Thanksgiving dinner.

Happy Thanksgiving!

Tired

There's tired, and then there's diabetes tired.  The tired in our family comes in parent and child forms.

We experienced both at our house today.  Up at 2, I discovered a low blood sugar.  I gave my daughter a juice box, and was up again in a while to check.  I awoke once again around 5 a.m., and while I ordinarily might have rolled over and dozed off again, I wondered instead.  What if she was low again?  Or really high? If I checked her, would I wake her up for the day?  What if I didn't check and she was dangerously low?  There was no choice to but to get up.  She was fine, but by then I was wide awake.

I noticed my daughter was particularly tired before dinner tonight.  "What wore you out?" I asked. 

"I don't know...just a long day, I guess." 

Then I remembered the overnight blood sugar of 60, with an eventual climb to 280.  An aggressive correction plummeted her back to juice box numbers at school before eventually evening out.  That'll take a lot out of a person, I hear.

We can only hope for a turkey-induced nap in the near future.

Guess The Carbs

Yesterday, we enjoyed the last part of my daughter's birthday celebration, a trip to American Girl Place.

Our afternoon of shopping and exploring the latest dolls and accessories concluded with a late lunch at the store's cafe.  My daughter and her best friend brought their dolls, who sat happily at the table in special booster seats and enjoyed their very own cups of tea.

The four course meal concluded with this dessert trio:


Care to hazard a guess as to the grams of carbohydrate on this plate?

There's no way to tell where I went wrong, but somewhere between the first course of cinnamon buns, the soft pretzels with honey mustard, the chicken tenders with curly fries and a fruit skewer, and the above delicious collection of treats, I did.  By 5 p.m., she'd hit 380. A night of checking and bolusing ensued.  The sheer variety of carb-containing items served, as well as the unheard of consumption of three different dessert items were big contributors to my inability to adequately account for what she ate.

This was a once in a blue moon experience, which my daughter fully enjoyed. In my humble opinion, this celebration was worth the post-meal blood-sugar battle. By midnight, she'd reached the low 200's, and this morning, she was down to 89.  A little hard work and determination solved the problem fairly quickly.

Meanwhile, she and her  best friend will remember their  lunch with Kit Kittredge and Jess forever.


Eating Season

Halloween marks the beginning of the season I refer to as "eating season."  Coming on the tail end of birthday season, it begins with the candy and any Halloween party treats.  It continues into my daughter's early November birthday, for which there are usually a couple of different food-heavy celebrations.  We then move to Thanksgiving which includes for us a big dinner at our church, a feast at school and then the actual day.  And the subsequent days of leftovers.  Which rolls us (literally) right into Christmas cookies, holiday parties, and Christmas dinner.  We round out each year by eating our way through New Years Eve and day with dear friends.

I really like good food.  I like to cook it, read about it, and eat it.   I've raised a child who, despite her food-phobic compatriot diabetes, enjoys her food as well.  So this is a season of anticipation, but also of challenges.

She's excited to try the candy she salvaged out of her trick-or-treat bag.  She's already wondering what kinds of pies will be at Grandma and Grandpa's on Thanksgiving.  We're working out a date for her best friend to come over to decorate gingerbread cookies with us.  We're on the lookout for a new idea for New Years Eve dessert.

But it's time to dust off that carb book and reaquaint myself with the food index in her glucometer.  At the moment, I'd be hard pressed to guess how many carbs in a cup of flour to math out a recipe, or in a slice of apple pie.  This time of year I find my estimations are rustier than they will be after a month of eyeballing plates of turkey/potatoes/stuffing/cranberry sauce and coming up with a reasonable number. 

It's challenging, especially at the beginning of this season, to put in the work required to keep diabetes highs and lows at bay while enjoying the fabulous foods of the season.  It s a different way of living with diabetes than we usually abide by.  The measuring cups, package reading, and focus on healthy choices fall by the wayside a bit this time of year.  There's more educated guessing and much more testing to make sure we've guessed correctly.

But denying my child that slice of great grandma's home-made pie, or a second serving of stuffing is out of the question.  So it's time to study up, stick the carb book in my purse, and make sure we have a good supply of test strips. 

The Waiter

We had lunch at our local diner a couple of weeks ago.  My daughter started with a diet soda.  Then she ordered french toast and requested sugar-free syrup.  She tested her blood sugar at the table before she ate.

Near the end of the meal, our waiter approached.  Nodding towards my daughter, he asked, "She has diabetes?" 

"Yes, she does," I replied.  My initial surprise at this seemingly random question quickly dissipated as I thought through what she'd ordered.

"I also have diabetes, " he continued in his thickly accented English.  He proceeded to tell us about being diagnosed 30 years ago, give or take. He was about my daughter's age living in his home country, a then poor and undeveloped place.  He described his mother's tears, and the struggles of his family to obtain for him insulin, glucose monitoring, and medical care. 

"But here I am, thanks God," he continued.  "It's o.k.  You can do it.  You just keep going and take care of it.  You will be fine. See?  I am fine."

Indeed.  We have our moments when it all seems impossible.  Those moments are nothing compared to what this gentleman, and thousands like him have struggled through to manage diabetes in difficult conditions. 

We thanked him for sharing his story with us.  It's one we can return to for a bit of perspective on a seemingly difficult day.

The Big Blue Test

Despite forgetting to send my daughter to school in her diabetes-awareness-blue yesterday, we did commemorate World Diabetes Day at home.  We participated in The Big Blue Test.  This program, sponsored by Roche, raises money for the Diabetes Hands Foundation.  It involves testing blood sugar before and after 14 minutes after exercise.

Asked her preference, my daughter wanted to dance around the living room as her form of exercise.  So we cranked up the music, and did the first blood sugar check.  It was 217, shortly after a peanut butter cracker snack.

After 14 minutes of practicing our best dance moves, she checked again.  "Well that didn't do much, mommy," she complained.  "I'm 210." 

We logged her results into the website anyway, and then watched a video about how the foundation has provided supplies and medical care in impoverished and tornado-devastated areas of Alabama.  Knowledge that we had helped in this way would have to be the reward. 

Really, that 210 was no big deal compared to what other people with diabetes live with every day. There were vials of insulin in our fridge, stacks of supplies in our closet, and an appointment with our endocrinologist on the calendar.

We ended our World Diabetes Day thankful that we had all of the basic supplies and knowledge needed to adequately care for diabetes, and motivated to help those who don't.

Awareness Of What?

I've read a couple of pieces this week discussing what the purpose of diabetes awareness month should be.  Awareness is the obvious answer, but awareness of what?

Should it be awareness that people with diabetes can do anything people without diabetes can?  No foods are forbidden. There are famous athletes, musicians, and supreme court justices with diabetes.  My kid can come to your kid's birthday party, whatever it may entail.

Should it be  awareness that diabetes is a terrible disease to live with?  It involves piercing the skin with sharp objects many times per day.  Cumbersome equipment and its related management is a constant.  Horrific complications and impending demise are around every corner.

Should it be advocacy for a cure?  Don't cut national funding for medical research.  Allow scientists to use all the tools at their disposal to find a way to erase diabetes.  Donate to JDRF or DRI or ADA.

Should it be an increased sense of community?  Wear blue on Fridays, and today (she writes, realizing she sent her daughter to school in purple...).  Send postcards to each other with blue circles on them.  Blog more.

Or is it simpler than all that?  Maybe simple awareness, though obvious, is the true purpose, and any of the above will do.  Whatever it is that means the most to me, or you, is what we should do.  The important part is not how we share the message, but that we do it at all. 

Diabetes exists, and we'd rather it didn't anymore.  Please be aware of that.

World Diabetes Day Postcard


My daughter participated in a World Diabetes Day postcard exchange organized by Lee Ann Thill of The Butter Compartment

Above is the postcard my daughter created, inspired by a video on the website.  On the rear, she included her name, when she was diagnosed with diabetes, and that she walks each year for a cure.

Per the instructions, she also included a closing line:

"One word I would give to you and your family is HOPE."

And that, my friends, is what World Diabetes Day is all about.

Bring Out Your Blue

Support Diabetes Awareness Month by wearing blue every Friday in November.

And also on Monday, November 14th, World Diabetes Day.


Fortunately, Halloween was rescheduled to last Friday in our town, so my daughter's Smurf costume worked out perfectly.

Smurfy Diabetes Month!

Our Scary Halloween

Halloween is supposed to be scary.  And when you factor in diabetes, it's got some additional scary elements. 

Thanks to mother nature, we had a differently scary Halloween. 

Here in the northeast, we got "tricked" with a horror show of a storm.  Saturday afternoon and night featured a soundtrack of creaking, cracking trees crashing to the ground all around us.  Seven inches of snow piled up in our neighborhood. The power at our house went out on Saturday mid afternoon and stayed out until late Monday night.  By Sunday morning, there wasn't a house in town that didn't at least have a pile of branches in front of it, if not whole downed trees.  Many streets were, and still are, impassible.  The makings of a horror movie indeed.  Or a sign of the apocalypse.

Things are beginning to look up.  Most importantly, the power at our house is back on.  There is a fleet of 20 tree trucks using the nearby school parking lot as its headquarters.  The sun is shining and quickly melting the snow.

Everyone is challenged by a power outage.  It's hard to keep warm, fed, entertained, and connected to friends and family.  It's scary to wonder about the consequences if the basement sump-pump's battery back-up system fails, or if you're not careful enough lighting the gas stove with the lighter.

Keeping hearth and home together was the first priority during this storm, but  diabetes also needed attention.  Site change needed to be planned for daylight hours so we didn't have to juggle flashlights and sharp objects.  Panic set in when I realized we were down to the dregs of our last bottle of insulin.  Planning balanced meals without the benefit of refrigeration, ovens or light to cook by was an increasing challenge culminating in last night's pizza from the small stretch of our town's main street with power.  And complicated by the number of bagels which thawed out in the freezer and therefore "needed" to be consumed.

Our town has rescheduled Halloween for Friday, at which point we'll deal with the usual Halloween challenge of counting carbs in unlabeled "fun sized" candy, and the annual ironic low blood sugar while walking around the neighborhood.  But we'll be grateful to return to a warm home, where we can cook a healthy supper to counterbalance the snickers bars.

Changing Snoopy's Site


Last Halloween, my daughter dressed up as Snoopy. I attended the annual costume parade and the photo I took of Snoopy and Lady Gaga will surely turn up in a yearbook some day.  

A few minutes after returning home, I got a phone call from the school nurse.  “She’s 408.”  “Crap.  O.K.  It’s gotta be the site. She’s been high-ish since I changed it last night.  Not that high, but anyway…I’ll be right there.”  I trust the school nurse would change the site with the utmost skill, care and compassion, but since I’m just a few minutes away, I grabbed the stuff and headed over.

So there we were in the bathroom of the nurse’s office, where the toilet flushed every time either of us moved.  Me and Snoopy.  So cute with the floppy ears and half-wiped off face paint because it had started to itch.  Snoopy’s a trooper, let me tell you.  Usually, there’s a commotion at site change time about when we’ll do it, where it goes, what the reward will be.  Snoopy lifted her tail, closed her eyes and let me go for it.  “Good dog,” I said.   “Woof,” she said and rolled her eyes. And off she went back to class. 

Halloween Is Coming!

Halloween has come a long way for kids with diabetes over the past 10 years.  With the increasing popularity of the insulin pump, and the almost univeral use of fast-acting insulin to cover the carbohydrates, the days of forbidden foods have virtually gone by the wayside. 

Treats of all kind are allowed.  But they're still not all ideal. 

No matter how carefully covered, a package of candy will behave differently in my child's body than it will in her friend's.  Or maybe it won't but I have the tools to see exactly what happens to all that sugar. 

Candy will certainly behave differently than a slice of whole wheat bread with the same number of carbohydrate grams.  The candy will produce a spike in blood sugar soon after it's eaten. A healthier alternative will be slowly absorbed by the body, keeping her numbers on an even keel.

Since, however, I'm unlikely to convince my daughter to trade in her halloween candy piece-for-piece for slices of whole wheat bread, we'll have to compromise.

Every family with diabetes has a different Halloween game plan, but here's what we do:

Keep 9-10 favorite pieces.  She eats one per night for dessert.

Keep a supply of "fast-acting carbohydrate" candies to use to treat low blood sugars.  Smarties, sweet tarts and starburst are among those that get stashed in the pantry.

Donate the rest.  We have a dentist in town who collects candy to ship to the troops and pays kids $1 per pound for what they bring in.  A good deed is done, and the cash is usually spent for sugar-free gum on the way home.

Lastly, we focus a bit more on the other fun aspects of Halloween.  We have often gone to great lengths to procure or create the ideal costume.  We spend an afternoon carving a pumpkin and roasting its seeds.  We choose carefully the friends we trick-or-treat with so it's a fun outing. 

It all comes back to diabetes being a balancing act.  Fortunately, on Halloween, there are some really fun things to balance the candy with!

Time for a Tune-Up

Every so often it dawns on me that my child is desperately in need of a tune-up.  She has no tires to rotate or filters to replace, but she there's plenty of other maintenance to be done which will help her systems run better.

A couple of days ago, I realized she was overdue for an overhaul.  I'd received calls from the school nurse almost every day for a week.  Juice boxes were clogging up my trash bin.  A quick scan through the meter's memory confirmed that readings that began with a 1 were fewer or at best equal to  those beginning with 2's or those with only two digits.  My child was not running at her optimal performance level.

We could spend a lot of time debating how this happened. Illness, a growth spurt, or any number of other factors could have thrown her out of whack, but it really doesn't matter.  What matters is the need to figure out how to get back on track.

We've started by getting out the old-fashioned logbook sheets and writing it all down.  Modern technology is great, and the ability of her meter to sort, graph and average blood sugar numbers is very cool and often useful.  But there's something about writing it all down.  It makes us more cognizant of the problem numbers.  Writing those numbers that start with a 2 or a 3 over and over again brings focus to the problem.  Seeing a straight column of 2 digit numbers clarifies exactly where the issues are.Seeing a little star next to an outlier from last weekend reminds us of the bagel, or the forgotten bolus that caused it.

Now, starting today, we'll work our way through the day, noting patterns and tweaking basal rates and insulin:carb ratios as we go.  I can hear the endocrinologist in my head encouraging us to basal test, which we will likely need to do.

My hope is that with a little focus, and support from our diabetes team as needed, we'll easily get back on track. If only it were as easy as a 2 hour visit to the mechanic!

The Magic Pencil

"I thought I'd check because I felt unfocused.  I felt like I couldn't hold onto my pencil.  Or like it was going to start writing and scribbling by itself all over the page." Her blood sugar was 55.



It's an ongoing goal to help my daughter become more aware of her diabetes symptoms.  When she says, "I feel low, " we ask, "What do you mean?" or "How, exactly, " or "What are your symptoms."  When she tests high, we ask, "How do you feel?" or leading questions like "Were you thirsty?  Hungry?  Did your stomach hurt?" I'm certain these questions are very annoying.  And probably especially difficult to process when her blood sugar is low or high.

They're important to try to answer, though. A small child with diabetes relies on those around her to notice she's not o.k.  As a parent, I know to say, "You're crying about easy math problems.  Go check."  Her teacher knows that if she becomes pale and spacey to send her to the nurse.  A close friend's parent would suggest she check, or call me, if she kept asking for drinks.  

Every year she's in more situations where she's supervised by people who don't know her as well.  She encounters more teachers every day.  She goes to piano lessons without me.  She stays at birthday parties on her own.  We always make sure the adult in charge wherever she is knows about her diabetes, where her meter and emergency supplies are, and how to reach us.  But the reality is that my daughter is increasingly responsible for managing this disease and its related ups and downs. Those ups and downs can become dangerous if untreated, so it's important for her to be able to notice when she's not feeling right.

So it was significant for her to realize that it wasn't normal to think her pencil was going to scirbble all over her writing notebook.  Or throw itself on the floor.  That she recognized these as somewhat bizarre thoughts and took the next step to grab her glucometer is diabetes management gold.  After a juice box and a few quiet minutes, she regained control over her pencil and finished her homework. If only someone could guarantee me that every time she felt "unfocused," she'd have enough focus to check her blood sugar, I'd rest much easier.

Birthday Season


We are in the midst of what we affectionately refer to as the fall birthday season.  In the midst of this year's string of gift wrap, parties and cake came an unexpected moment.  My child attended a party without me for the whole time, and managed her own consumption of the birthday treat.

The party was at a nail salon where the girls were to get manicures and pedicures.  When I arrived, I learned that birthday girl was to be honored with singing sometime in the middle of the party, and that the girls would be eating their cupcakes whenever it was not their turn to be pampered. 

I had to make a game time decision.  My choices were to stay in a small nail salon crowded with 10 year old girls for 2 hours, to tell my daughter not to eat anything at the party, or to let her handle the situation herself.  As I looked around the salon, and experienced the (fun if you were 10) chaos, I quickly eliminated option one.  And given any option besides telling my child she can't participate in something because she has diabetes, I choose it.  So within a minute, it was settled.  Independence was at hand.

We eyeballed the cupcakes to estimate the carbs, and negotiated a couple of pieces of candy corn.  She stashed her bag with her meter and juice box in a safe but convenient place.  I gave her a kiss and left. And guess what?

She was fine.  She checked before her cupcake and bolused appropriately.  She also got her fingernails painted bright orange, with white glittery peace signs.  She had a great time with her friends, and welcomed the independence.

This success story was made possible by the convergence of a few positive variables.  I knew and trusted the parent of the birthday girl, and she was familiar with my child and her diabetes.  The cupcakes were easily countable, unlike an ice cream cake being carved up in randomly sized pieces.  There are certainly still parties to come for which she's going to need more assistance.

Eventually, though, my daughter's going to need to handle every diabetes situation on her own.  I know there will probably be some she doesn't handle as well as she did this one.  But for now, it's encouraging to see that independence will continue to come, and that she was able to handle this situation with skill and grace.

Visiting The Doctor

My daughter has visited a few doctors in the past month, including the pediatrician, the endocrinologist and a new specialist.  I find that my expectations of a physician visit have changed, based on our experiences with endocrinologists.

We’ve been blessed with three different excellent endocrinologists over the course of my daughter’s almost 9 years with diabetes.  When we visit, we are greeted warmly.  We are taken into a comfortable room and spoken with.  We are asked open ended questions and listened to.  A gentle physical examination is given.  We are given excellent feedback and encouraged to play a part in clinical decision-making.  We are educated about the disease and any new research or technology coming along.  We are not allowed to leave until the physician is sure we are comfortable with any changes in treatment.  We leave empowered and reassured.

When the endocrinologist downloads the numbers from my daughter’s pump, he doesn’t immediately start reprogramming basal rates or carb ratios.  First he says, “Look here….she seems to be coming in low at dinner time most nights.”  Then I say either, “You’re right, I can’t think of why that would be,” or “Yes…she had softball practice every day this week.  Next week it’s only Tuesday so I’m not sure that will be a pattern.”  Then he suggests treatment changes. We discussed over 2 visits the pros and cons of switching our fast acting insulin brand.  When lab results come in, they’re facing me on the desk with the doctor leaning over and explaining the numbers.

Therefore, I find myself expecting a conversation at my own and my daughter’s other medical appointments.  Too often, even with excellent physicians, a brief interview and exam will lead a doctor to a diagnosis and to begin to start talking about treatment.  “Wait,” I’ll say, “She didn’t mention that she’s also having occasional muscle aches too.”  Or, “Your diagnosis sounds very likely, but I’m wondering if you’d consider x as well because,” and I’ll state my reasons. 

I don’t always do this, of course.  When the strep test comes back positive, we take the prescription, do not pass “go” and head for CVS.  If there’s a cavity, we have it filled. But when I do start to discuss, doctors are often surprised.  I know they’re pressed for time.  I’ve just sat in the jammed waiting room, and can see the harried looks in their eyes.  I also know they’re not used to conversations about the diagnosis they’ve come up with.  It’s easier if I nod my head politely and assume they’ve solved my problem.  

I’ve learned however, that in the long run, a working relationship with a physician is much more useful than the more traditional model.  Not only is the doctor more likely to get all of the information about symptoms and concerns to make a more informed diagnosis, but I leave more comfortable with the prescribed treatment and therefore more inclined to follow through with it. 

Instruction Manual

In an attempt to fix a sticky drawer this morning, I removed it from my daughter's dresser and found a very detailed set of instructions.  I believe I wrote them up 8 years ago, and left them with my in-laws when my husband and I spent a night away at a friend's wedding.  It's a fascinating picture of caring for an almost 2 year old who's taking shots of NPH and Humalog for her diabetes.

Low Blood Sugar:  Usual symptoms of low blood sugar are repeating "cookie cookie, " clinginess, or laying down on the floor.  If blood sugar is below 85 between meals, give her 2 oz. juice and half a sugar free yogurt.  If it's before a meal, give juice but no yogurt.  If she won't take the juice, give one teaspoon of cake icing.


High Blood Sugar:  Unless she's sick or high for a couple of hours, we do not give extra insulin.  Encourage  extra fluids (water, crystal light, sugar-free jello), and a little exercise.  We find that tantrums can lead to high blood sugar.  These highs seem to self-correct after a couple of hours of calm.  The correction dosages are on the fridge with the other insulin information.


Refusing to Eat:  Missing up to 4 grams at most meals won't usually make a huge difference, so we don't usually quibble too much over the last bite or sip except at mid-morning snack and bedtime.  If she doesn't finish the mid-morning or bedtime snack, or if she won't eat at all, try these options:
  1. Distraction:  A new book or picture album or toy to look at while she eats
  2. Changing the scenery:  Snack on the sofa, kitchen, or outside
  3. Joining Her: Have someting to eat or drink too (maybe an alternate option that she'll want to try and think she's stealing from you)
  4. Offering an unusual alternative like cookies for morning snack or cereal for supper
  5. If desperate, give the equivalent carbs in juice, or if really desperate, frosting

Giving Insulin and Checking Blood Sugar:  We do all blood sugar checks and injections in our bedroom with the t.v. on tuned to Noggin.  She prefers to sit on a lap for these.  This also makes it easier to keep her still.

Thankfully, the instruction manual has gotten shorter as she's gotten older.  The flexibility of the pump and her ability to manage so many of the details by herself, even at the age of 9, make it much less complicated to leave her with a family member.  There also aren't as many tantrums, though I realize the teenage years are still ahead of us.

Walking Again


Our family is walking in this year’s Walk To Cure Diabetes on Sunday, October 2nd.  We’re dedicating this one day to our daughter and the many kids like her because for them, diabetes is every day.

 Our daughter has had diabetes every day since December 21, 2002. Every day, she pokes a finger 8 or 10 times to test her blood sugar level.  Every day, she wears her pump which is continuously giving her the life-sustaining insulin most of us make easily on our own.   Every day, before she eats, she stops for a math exercise in which she adds up the number of grams of carbohydrate in her meal.  Every day, before she takes a walk or plays outside, she stops to consider whether she needs to adjust her pump or have a snack to prevent a low blood sugar reaction.   Every day, she carries a glucometer, a juice box, and an emergency kit with her wherever she goes.  Every day, her parents sent an alarm clock for a middle of the night blood sugar check in case dangerous low or high blood sugars need to be taken care of.  Every day, we worry about diabetes.

 We’re dedicating this day to our daughter with the belief that some day will be the last day for diabetes.  JDRF is an organization which was founded by parents and which has become the leader in research on Type 1 Diabetes.  We continue to believe their claim that the day is in sight when people will live without the day-to-day responsibilities and anxieties of diabetes. 

This letter went out to our friends and family asking for their support of JDRF, in honor of our daughter.  Some walk with us every year.  Others donate.  Some can do neither, but are generous with hugs and kind words.  All help us maintain our hope that a cure will come some day.
I believe Invisible Illness week was last week, but better late than never, here are my responses to a meme I found over on Six Until Me


1. The illness My Daughter lives with is: Type 1 Diabetes

2. She was diagnosed with it in the year: 2002

3. But she had symptoms since: Maybe a month or so before. We should have bought stock in a diaper company.

4. The biggest adjustment we’ve had to make is: Being unable to leave the house without a bunch of diabetes supplies, even for a quick walk around the block.

5. Most people assume: That her diabetes is “under control” and that her day to day care runs on autopilot. 

6. The hardest part about mornings are: Making sure she gets out of the house with lunch, snack and a note for the school nurse. Too often, we’re 2 for 3 on that one.

7. My favorite medical TV show is: I can’t watch them.  We’ve got enough medical drama at home.

8. A gadget my child couldn’t live without is: A glucometer. 

9. The hardest part about nights is:  It’s maddening, and also quite challenging, to give a sleeping child juice at 2 a.m.

10. Each day she takes 0 pills & 1 vitamins: And infuses insulin constantly. That’s really the most important part, no?

11. Regarding alternative treatments I:  Roll my eyes.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. It’s nice to be able to hide it as long as your pockets are big enough.

13. Regarding working and career: I think child labor is still illegal in our state.

14. People would be surprised to know: That I could tell them how many grams of carbohydrate are on their plate.  And that I think this would make a fun party game.

15. The hardest thing to accept about my new reality has been: That it’s not new, and that the cure in 5 years they told us about has been 8 so far in the making.

16. Something I never thought we could do with my daughter’s illness that we did was: I’ve always said nothing’s impossible, but our trip to Europe with its many changes in routine and loss of control over menu plans was an extremely fun accomplishment.

17. The commercials about my illness: Always feature a glucometer with a blood sugar of eighty-something. 

18. Something I really miss doing since my child was diagnosed is: Having the phone ring and not always assuming it’s because my child is having a medical emergency.

19. It was really hard to have to give up: Leaving the house empty-handed (see #4)

20. A new hobby I have taken up since my daughter’s diagnosis is: Blogging.

21. If my child could have one day of feeling normal again I would: Stick a wad of cash in my back pocket and go to a county fair where she would proceed to eat herself silly.

22. My daughter’s illness has taught me: Incredible math skills.

23. Want to know a secret? One thing people say that gets under my skin is: “She can’t eat that, right?” 

24. But I love it when people:  Call me and tell me their food plans before a party so that we can plan ahead.

25. My favorite motto, scripture, quote that gets me through tough times is: To everything there is a season and a time to every purpose under Heaven.

26. When someone is diagnosed I’d like to tell them: Diabetes is now going to tag along wherever you go, but you’ll be fine as long as you never give it the job of navigator.

27. Something that has surprised me about living with an illness is: How many really great people I’ve met because we live with this.

28. The nicest thing someone did for me when my child wasn’t feeling well was: Santa visited our hospital room a few days after my child was diagnosed.  Santa is the best.

29. I’m involved with Invisible Illness Week because: I can’t have an invisibility cloak like Harry Potter, so this was the next best thing.

30. The fact that you read this list makes me feel: Like maybe diabetes is a little less invisible, even though there are still days we’ll want to keep it in my daughter’s pocket. 
And grateful that you put up with my inability to fix the weird formatting.

A Tricky Balance

Before the first day of school, we had our annual visit with the nurse and this year's teachers.  There is a stipulation for this meeting in my daughter's 504 plan.  The purpose is to make sure the teachers understand what Type 1 Diabetes is, and how it affects my daughter's daily routine.  We review her low blood sugar symptoms, show everyone her pump, and discuss her need to pop down to the nurse's office on occasion.

It's a tricky balance, this meeting. 

On the one hand, the purpose is to make clear that diabetes is a serious thing to contend with.  Untreated low blood sugars could lead to confusion or even fainting.  High blood sugar during an important test could result in poor grades. Skipping morning snack can throw her out of whack for the rest of the day. Forgetting to bring the little bag with meter and glucose tabs outside during a fire drill or real emergency could, unnecessarily, result in an even bigger emergency.

On the other hand, we're trying to convey that my daughter is a regular kid and wants to be treated as such.  This is something she lives with every day, and if we were in a constant state of alarm or anxiety about it, we'd never survive. Once she gets the hang of the weekly routine, she wants to slip in and out of the classroom unnoticed.  If she raises her hand and says she feels low, a buddy needs to be assigned to quietly escort her downstairs, but there need not be a sense of panic throughout the classroom.  Her teachers should be concerned about her, but not asking her if she's o.k. every 15 minutes.  On a regular basis, she needs no special treatment or accomodation.

The essential message is this: "This diabetes thing is a really big deal.  Please don't make a really big deal about it." 

Tummy Trouble

If only my daughter would throw up before I bolus.  This one wasn't as bad as the stomach bug that hit half an hour after Christmas dinner, but still left us scrambling to undo a lunch bolus for 50 carbs. 

It may seem strange to a non-diabetes family to realize that as I was holding hair back and wiping tears, I was already scheming what I had in the pantry or fridge that my child could eat.  Under most normal circumstances, one would avoid feeding anything to someone who had just thrown up.  Maybe in an hour or two you'd offer a sip of ginger ale or tea. 

For my child, however, once she was upright on the sofa, she had regular coke and a straw in front of her.  The every 15 minute blood sugar testing began. 

150.  Good...a little wiggle  room.
97.  Not bad, have a sip. 
84.  Still ok...just keep sipping slowly, sweetie. 
68.  Hmmm...do you think you could get down some smarties? 
52.  OK...guess it's time to go for broke, hon.  Drink at least half the soda.
80.  An improvement! 
75.  I think the real sugar blue jello is ready...want some? 
134.  Finally!

She finished a 20 oz. coke, half a cup of blue jello and a role of smarties in the first 2 hours after throwing up.  That combination alone, without a stomach bug, would make me throw up, but she held out until later that evening when things had stabilized.

For the Christmas episode, we ended up mini-dosing glucagon as suggested by our endocrinologist and as described here on the Children With Diabetes website.  That bug was much more severe, and she could keep absolutely nothing down.  It was extremely effective and saved us an ER visit. 

Stomach bugs are tough enough diabetes-wise with their concurrent dehydration, ketones and change in meal patterns.  Let's hope the next one starts right before breakfast.

The Beach

I love going to the beach, and so does my daughter.  Floating on the waves, picking up shells, building sand castles, playing with hermit crabs, and taking long walks are among our favorite beach activities. 

Our constant traveling companion, diabetes, is not as fond of the beach.

We try to leave the pump plugged in as much as possible, when walking or digging in the sand for example, but there are long periods of being unplugged in the water.  The pump we have is waterproof, but given a choice, I choose not to put a multi-thousand dollar piece of electronic equipment in the ocean.  We try to compensate as possible with quick bursts of insulin to make up for the missed basal.  But it doesn't work quite the same, and there are often exercise-induced lows after these boluses and/or insulin deprivation highs which appear later in the evening.

None of our diabetes supplies like the beach.  Insulin becomes less effective when it gets hot.  Keeping the pump covered and the tubing enclosed is the best defense but sometimes sand castle building becomes a higher priority and we forget.  We've had the meter cease to function because it got too hot (which begs the question why they put them in black cases).  A few minutes in the cooler and it was back to normal, but even the temporary lack of information was a bit nerve-wracking.  The afternoon I spent picking sand out of our old pump grain by grain after my daughter had buried herself in a hole while wearing it was a long one. 

Nevertheless, we take diabetes with us wherever we go.  If it doesn't like the beach, tough luck.  It's not always easy, but it's much more important to dig the toes (and some days even the pump) into the sand.  If only we could set diabetes off on a nice sail into the sunset while we were there.

The Vacation Mystery

After several years of taking our annual beach vacation with diabetes in tow, I still haven't solved the mystery.

The first time we brought diabetes on vacation with us, I made a decision which I've stuck to in all subsequent years.  Before we left home, I decided the diabetes goal for vacation was to stay close enough in range to be able to enjoy the trip. Each year, I take a solemn  vow that 3 numbers in a row above 200 won't aggravate me like they did this morning, and that we'll be flexible about food.  There's no such thing as a complete vacation from diabetes.  But with some willpower, I'm able to step back from the obsessive nit-picking which I firmly believe makes diabetes management successful on a day-to-day basis.

Then, each year without fail, the most amazing thing happens.  Strings of numbers appear which are really quite good!  Actually, they're often stunning.  Like an essentially uncountable fried seafood plate for lunch with a 150 an hour and a half later.  'All that fat will surely catch up to her ,' I thought(unobsessively, of course).  She never got above 200.  She eats ice cream, pizza, clam chowder (creamy, buttery, potatoey New England, of course), and even candy!  She unplugs her pump for an hour or two at a time to swim in the ocean.  And rarely does it catch up with her like it does after every birthday party, restaurant meal, pool visit, and ice cream outing at home.

So, my fellow diabetes detectives, what is the difference?  My money's on exercise as the primary one.  We walk, swim, visit playgrounds, shop our way through town, make up silly games before dinner, and tour new places.  Looking carefully at the whole picture, though, there are other things going on.  There's absolutely no stress on this vacation.  Stress can result in high blood sugar, and even at 9, there's stress of schoolwork, friendships, sports, and more which can come into play at home.  I also find that in a new environment, and when we're trying new foods, I count carbs more carefully than I sometimes do at home.  I have my Calorie King book handy in the car to look up restaurant foods.  I measure the new variety of rice pilaf I've prepared and count it exactly instead of my relying on my memory. 

Whatever the reasons, the lesson to be learned is clearly that vacations are really, really good for my daughter and that we should defninitely be spending more time enjoying them!

Packing

Summer includes a couple of annual trips for our family.  They're simple road trips compared to our international adventure last year.  But there's really nothing simple about traveling with diabetes.

When I stop to think logically about the 250 test strips I've packed for a 14 day trip, I have a hard time envisioning a situation in which we'd consistently need 17 test strips every day for 2 weeks. 

I can't remember the last time we had a glucometer die, yet I've packed 3 "just in case."

While the most it could take is 3 days for the pump company to ship us a new one in case of failure, I've got enough syringes to last a week.

Theoretically, we'd plan on 5 site changes during the trip.  We're prepared for 12.


Contact info for our endocrinologist,  pediatrician, pump company and pharmacy are plugged into my cell phone.  But I also know where the closest branch of our home pharmacy and the local hospital are.  I have printouts of all of our current basal rates, and ratios.

My daughter is just hoping there's still room in the car for her beach toys and her trusty stuffed rabbit!

The Infusion Set Review

We’ve used the new infusion set twice now and the reviews are positive!  The first time we used one, my daughter actually uttered the words, “I like it, Mommy.”   For a mechanism containing a spring-loaded needle I’d call that high praise indeed.

What is there to like about it? 

It’s much faster.  With the inserter, the site pops right in.  When I do it by hand, I take my time, making sure the angle is correct and that my hands are steady.

The speed with which it’s inserted decreases the pain.  The painful part is the insertion of the needle.  Even though the needle must stay in for a few seconds while tape is secured, once it’s all the way in it no longer hurts, at least not much.  She still says “ouch” when it goes in, but it’s quieter.

The connection between the tubing and the site works either way.  On our old sites, the connector on the tubing could only fit into the site with the smooth side up.  This was not usually a big deal, but at the pool or beach when trying to reconnect underneath a bathing suit it was inconvenient.  Add an impatient child, glaring sun, or blowing sand and it became near impossible.  This one pops in either way.

Last thing to like, but not least if you’re a 9 year old girl, is that it comes in a variety of colors.  The plastic part stuck to her skin, and the end of the tubing are available in pink, blue, green or grey.  She wants pink because it will match her pump but is considering writing the company to request they make more choices.  Orange is her favorite color and an orange site would be very cool, she thinks.

So we’ve ordered a shipment of new sites.  I’m not sure how to fit them in my closet, but it’s worth the effort.   Anything to make site change a more pleasant experience is well worth it!

Ice Cream Pellets

This weekend, we went to a local minor-league baseball game.  My daughter is a big baseball fan, and was excited to attend the game with my husband and I, and her grandpa.  We've been overdosing on junk food lately, and the end is not in sight. Therefore, we decided to have dinner at home, and just a "treat" at the game.

My daughter quickly picked out her gametime treat. "I think they have dippin' dots there.  I really want to try those."    Grateful she had made this decision to try something new before we got to the park, I quickly looked up the carbohydrate information for dippin dots ice cream online and compared my results to my calorie king carbohydrate book.   Both indicated approximately 20 carbs for a half a cup.

Around the 6th inning, with the home team winning by a lot, we made our way to the concession stand.  She ordered her choice of flavor (mint-chocolate chip), and immediately dug in.  It was a different brand, but an identical looking dish of tiny ice cream pellets.  I estimated there was about a cup of them in there, and bolused accordingly.  She enjoyed every bite.



An inning later, grandpa returned from the concession stand with his own dish of pellets.  He is an ice cream connoisseur, and had to try them.  He's also always curious about what company makes the things he purchases and therefore began perusing the top cover of his dish.  My daughter had ripped off and discared her top cover before I realized there was one.  Grandpa's cover,  it turned out, had nutritional information on it indicating the whole dish contained 13 grams of carbohydrate.

Oops.

She started with a small juice box.  By the end of the game/start of the fireworks, she was into the glucose tabs.  Upon our return home, a small glass of o.j. was in order before bed.

But nobody panicked.  We had enough carbs with us to keep her upright. But I found it reassuring that the cotton candy guy was passing our seats quite regularly until we left the park!

The Infusion Set Experiment: A Preamble

This week we visited the Diabetes Educator at my daughter’s endocrinology practice to learn about infusion sets for her pump.  The infusion set is the part of the pump system which is inserted just under the skin.  It consists of a plastic piece which connects to the pump tubing, adhesive tape, a tiny rubber cannula which ends up under the skin, and a needle to insert it which gets removed upon insertion.  A new one is inserted every 3 days.

The one we currently use looks like this:



We’ve been using this set since my daughter started pumping nearly 6 years ago.  She’s had no problems from a functionality perspective.  The actual process of changing the site is what led us to consider alternatives. With our current model, I insert the site by hand, taking a pinch of flesh in one hand while inserting the needle at a 30 degree angle with the other.  Inserting that long needle by hand causes psychological and physical trauma which we hope the newer alternatives may somewhat alleviate.

The alternative we’ll be test-driving this week looks like this:



It comes pre-packaged in a spring-loaded device.  After a bit of unwrapping, and pulling back the “trigger” (which makes it sound decidedly unappealing, but we’ll move on), it’s held against the body in the desired location.  A gentle squeeze on two pressure points causes action which inserts the site.  The entire device is then pulled away from the body, removing the insertion needle and leaving the site in place. 

Sadly, there’s no way to make the process painless or even remotely pleasant.  Any way you slice it, it involves inserting a needle under the skin every 3 days, however briefly.  Our hope is that this new site will at least be quicker to insert, and slightly less painful.  Some day it will also be significantly easier for my child or teenager to do by herself. 

It’s taken almost a year of convincing to get my daughter to the point of trying this new site.  Understandably, she’s inclined to stick to what she knows, despite the possibility that new is better.  However, she’s finding site changes increasingly stressful these days, so finally agreed to give it a go.  Stay tuned…I’ll let you know how it goes!

The Hike

This past weekend, we hiked a mountain.  According to my probably inaccurate online research, the mountain's elevation is about 1800 feet, and the vertical climb from where we parked was a little under 1000 feet.  If you're a hiking novice like me, the statistics which will mean more to you are that it took about an hour to hike up with 5 adults, my 9 year old and my 5 year old nephew.  The children set a rapid pace, taking their responsibility of finding the next trail markers very seriously.

After a bagel breakfast (a rare treat for her), my daughter's blood sugar was about 250.  I resisted correcting, and up the hill we headed.  Halfway up she was down to 150.  At the top, she was 90.  We enjoyed the beautiful vistas, and grazed on the tiny blueberries we discovered at the top.  We even managed to pick enough to bring back for pancakes the next morning. Those and a small granola bar fueled her up for the trip down.



We made it up and down the mountain with an end result around 150, which continued to drop as the afternoon wore on. 

Of course I think my poor husband, the self-nominated backpack carrier, was secretly hoping for a low somewhere along the line.  Prepared for any eventuality, we had what by any standards would be considered an excessive amount of juice boxes, glucose tabs and snacks on hand. 

On the one hand, it's sort of a non-story, diabetes-wise.  We hiked up, enjoyed the top, and hiked back down without incident.  On the other hand, we had to plan ahead with a hearty breakfast, pack like we were camping for days instead of taking a 3 hour hike, and regularly scout out flat rocks upon which to occasionally stop and check.  Prior planning and a little bit of divine intervention both need to come together to make a day like this one a diabetes success.

Summer Music

This is the first week of my daughter’s summer music program.  She’ll be at our town’s high school 5 mornings a week, beginning to learn the clarinet.  The program is run by a couple of our town’s music teachers. Kids receive a daily group instrument lesson, sing in a chorus, and take a music theory class.  As they get older, they can also participate in band, jazz band, and a musical theater production. 

My daughter began participating in the program last summer.  She had started piano lessons during the school year, and was developing a real interest in music.  It seemed only logical to give her this opportunity to immerse herself in music for the first month of her summer.  She loved every minute of it, as I’m sure she will this year too.

Here’s the thing:  summer music doesn’t have a nurse, or anyone who acts as a nurse.  They probably have a stash of band-aids somewhere, but that’s where any interest in medicine ends.  So it was with a pit in my stomach that I made the decision to send my child with diabetes to this program last summer. 

The first day she went last year, I packed her up with a cell phone, meter, juice box, diabetes bracelet, and a note in her backpack with every contact number I could think of.  I walked her in the door, and spoke with the hall monitors.  I’d already made sure the director was aware and would tell her teachers.  I gave her a kiss, said goodbye, took a deep breath, said a prayer, and went home.  For two of the longest hours I’ve ever spent. 

The story has a happy ending.  When I returned, she was alive, upright, and happy.  The rest of the weeks went the same way. She checked her blood sugar as needed, and called me if it was off.  She called me more, however, because she’d forgotten things and wanted me to bring them to her. 

When she was diagnosed with diabetes at 13 months, my daughter was helpless.  She needed an educated adult with her 24 hours a day, 7 days a week.  It seemed for many years that this would always be so.  It is with relief, and pride, that I continue to watch her grow into a responsible child.  I realize that not all 9 year olds are capable of taking on this kind of responsibility, nor should they have to be.

The decision to send her last year was a difficult one.  There was certainly less of a safety net for the many diabetes “what-if’s” racing through my mind.  On the other hand, I knew I would be only a few blocks away.  I knew she took on these responsibilities well at friends’ houses.  I knew that an extreme diabetes emergency was extraordinarily unlikely.   Most importantly, I knew that she really wanted to live and breathe music for a couple of hours a day in July.  So the answer had to be “yes.”  
This year, the decision was easy.  Another hurdle has been crossed.  Now we'll see how things go with the clarinet!