Important Santa Information Revisited

Santa Knows. We Proved It. (A post from the past, but it bears repeating!)

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.

First Impressions

While it's just a few days 'til Christmas and I have mile long to-do list, I wanted to share just a few first thoughts about our new Dexcom.  Better formulated thoughts, perhaps even in complete and proper sentences, will follow after the first of the year.

What I like:  

• Finding trends and trying to fix them
• Knowing what happened during the school day
• High and low alarms
• Not worrying about her sleeping in
• Not checking a million times the day she had a stomach bug

What I don't like:

• The adhesive needs to be supplemented early and often.
• The receiver has spotty service in our bedroom. 
• The inserter is still scary.

What my daughter likes:

• The trend arrows help for better decision-making before gym, sledding, etc.
• A quick glance shows if a correction or low treatment is working
• Knowing it will alarm if she's low or high

What my daughter doesn't like:

• The sensor is awkward under a leotard
• Inserting a new sensor is scary (though the second time was better than the first)
• Worrying about the adhesive and whether she needs to add tape so it doesn't fall off

After the first one fell off (it had outlived its intended lifespan so it was fine) I wasn't sure what we'd do.  Our original agreement was that she didn't have to wear it all the time, that breaks were o.k.  All the pros and cons above are hopefully interesting and helpful, but the bottom line is this:

My daughter couldn't wait to start up a new sensor.  She was concerned she didn't have it while sledding at a friend's house.  "I wish I'd known which way that 102 was going, Mom."  If she likes it and finds it useful, then it's a keeper.

The First Time

Binge viewing videos about Dexcom sensor insertion eased my anxiety, but the person for whom it was being inserted was still pretty nervous about the whole thing.  Understandably.

Once I felt prepared, I gave her the choice of whether to start right away or wait a day.  I expected her to wait, but she decided she was so nervous about it that she'd rather get it over with.  So before we knew it, she was reclined on a pillow, belly exposed.  With one hand she had a vice grip on her stuffed rabbit.  With the other she was scrolling through pictures on the ipod.

The first obstacle was that she's very ticklish.  So every attempt to come near her, even with an alcohol wipe to clean the area, was a met with flailing hands (rabbit included) and giggly yelling.

Once we'd chosen and cleaned the area, we unwrapped the inserter.  We peeled back the adhesive and stuck the contraption to her skin.

This is when she balked.  "No!  I'm not doing it.  I can't."

Negotiations ensued.  See above for her arguments.  Mine included: 'We've gotten this far...we can't turn back now.'  'Let's just get it over with.'  Less helpfully, 'This thing cost us a lot of money...we're not wasting it.'  More helpfully, since it made her laugh, 'If you don't let me insert it, I'm going to leave the whole thing stuck to your stomach and you'll wear it that way for a week.'

We spent 20 minutes sitting on her bed, her with the giant applicator taped to her stomach.  At one point, she thought it might be easier if she pushed the plunger herself.  Ultimately she decided she'd rather close her eyes and strangle her rabbit.

Finally she did just that.

I pushed the plunger, heard the two clicks, and pulled the collar up for two more.  Except in super slow-mo. I'm guessing my hesitancy and wanting to be sure I did it all right caused it to be more painful than it will be once we get the hang of it.

"Did it hurt?"  I asked.

"YEAH, it hurt."

"Did it hurt as much as you were afraid it would?"

A half smile.  "No.  I guess it didn't."

The Decision

Regular readers will recall our 'mystery story' of a few weeks ago.  In a nutshell, my daughter was checking her blood sugar on a variety of meters at school and came up with numbers ranging from 140-348.  What I left out of that post was the tail end of the episode.  As we left the nurse's office, for her to return to class and me to try to remember what I had been doing before the phone rang, my daughter made a statement.

"This is why I need a CGM {continuous glucose monitor}."

We'd been talking about it on and off for a year.  The endocrinologist had given us his two cents and was ready to write a prescription if and when we decided to get one.  A friend of my daughter's got one a little less than a year ago and we'd both been watching her experience and asking lots of questions.  We'd been online, looking at the company's website and at personal experiences of bloggers.

We'd been going through a series of mysterious and challenging numbers. I was increasingly ready for Dexcom's graphs, predictions and trends, but we still had some reservations.

These doubts had mostly to do with having another 'site.'  How much would it hurt going in? Where would it go on her slim little body? Would it show under shirts?  Ballet leotards?  Bathing suits?  Would she care?  How much?  Would it be uncomfortable?  Would it get in the way?

There was also the matter of another device to carry.  She's already carrying a meter kit, juice box and cell phone. All of this fits into a cute little purse not too bulky to carry around at school or to a friend's house. The Dexcom receiver is small, but add a protective case of some sort and it gets bigger.  Would she need to ask Santa for a purse as big as she is?

Because these concerns were important to my daughter, they were important to me.  I needed her to tell me that she was willing to accept the discomfort and responsibility which would come with wearing another device.  I needed her to want it not just because it would help me and her medical team manage her blood sugars better.  It was important that she realize how it would help her in everyday situations, and indeed she did.

"This is why I need a CGM," she said.  That was all I needed.  I went straight home and picked up the phone.  We now own a CGM.  In fact (spoiler alert for future posts) she's wearing it right now.

And so far she likes it.

Research

It was tempting to rip the packaging open last Wednesday and click-click a Dexcom sensor into my daughter.  My cautious nature stopped me.

In fact Dex is still nestled in its packaging, though not as tightly as it was last week.  

I've taken it out and set the time, set up the alert parameters, and played with the different sound choices.

I've read through the start-up info and viewed the online tutorial.  

This is where I keep getting stuck:

This terrifying looking contraption will insert the sensor onto and underneath my daughter's skin.

Every time she looks at it, my daughter says, 'that thing's just scary looking.'  It's not really said with terror, just as a matter of fact. And she's right.  

I spent some time yesterday trying to alleviate my apprehension about this process by typing 'dexcom sensor insertion' into my trusty search engine.

Guess what?  It worked.

This video from Diabetic Danica and this one by One Happy Diabetic were the best for what I needed, which was to see how to use this thing on a real person.  I needed it explained step by step in a peer-to-peer sort of way. Watching multiple videos taken from multiple angles was helpful too.  One person, for example, made it very clear how to tell if the transmitter is clicked into place perfectly by checking the two little tabs in the back. Others showed helpful adhesive advice. This one from Arden's Day was uniquely great since it shows a dad putting it on his child.  It's the one I'll show my daughter before we begin.

Blogs were helpful too.  Bigfoot Child Have Diabetes' kid is in my kid's age range, and she's funny, so her recent dex experience was helpful to review again.  Diabetic Advocate's  tips and tricks were clear and practical.  As always,I consulted  D-Mom Blog and SixUntilMe too.  

I read and watched and skimmed countless other resources, and every one had something helpful or reinforced the key things to remember as we start up this week.  

So in a nutshell, 'Yay Diabetes Online Community!'  Advice from the manufacturer and our medical team is, of course, paramount.  But seeing and reading about real people using this gizmo in real life was the extra piece I needed.  My confidence has been built.  Thank you!

Wordless Wednesday: It's Here!

Too late to get it revved up for the big feast, but something to be thankful for nevertheless.

Happy Thanksgiving! 

For Me

This is where needed to be yesterday afternoon.  The 'to do' list was as endless as always but in a flash of wisdom I realized I needed to take a few minutes for myself.

It's been a long week. With my husband traveling, diabetes has been my responsibility alone. He generally takes late evening checks and every other overnight.  As a person who needs her sleep, I'm dragging. During daylight hours, I've been working through the paperwork for a Dexcom system, analyzing new trends in blood sugar numbers in child who's grown an inch in one month, and troubleshooting my fair share of random incidents such as this one.  

I could have done many things in the hour before school pick-up yesterday. I chose to take a walk.Views like the one above, the sound of ducks quacking, and the wind at my back were what I needed. The exercise sent me back energized despite my sleeplessness. 

I often forget to do things like this for myself, to fuel myself up for the journey. It's never the wrong choice though.  The to do list will still be there when I get back and I'll be better equipped to tackle it.

World Diabetes Day 2013

My daughter is excited about World Diabetes Day this year.   

She made postcards similar to the one above to send to 5 people around the country.  

She's wearing blue from head to toe (almost...she'd now like a pair of blue shoes).

Her second-ever instagram post went up last night.  She posted an image reading 'wear blue tomorrow for world diabetes day!'  

She scrolled through images tagged #WDD this morning, liking and sharing. She was excited to find so many and excited to post her own later this afternoon.

She's intrigued by the idea of buildings lit in blue tonight and other unique events to raise awareness around the globe.

She's planning to do the big blue test in gym.

She likes that there's a day set aside to spread the word about diabetes and why we need a cure.

I love that she wants to do all these things.  I love that she's not embarrassed to advocate for herself and the rest of the people in the world who live with diabetes.

May we learn from her example and find a way to raise awareness today, particularly beyond those who are already well aware of the challenges diabetes brings.

Sometimes We Forget

One highlight of last weekend's 12th birthday celebration was a day out with two of my daughter's best friends.  I took them to lunch, then a to pottery painting place. The party ended at our house with presents and brownies.

She checked her blood sugar as usual before her huge plate of french toast, and we guesstimated carbs as best we could.

We walked half a block over to the pottery place where the girls thoroughly enjoyed painting their own unique pieces.  Almost two hours later we headed home.

Presents were opened.  Happy Birthday was sung and brownies emerged from the kitchen complete with a candle.  The girls enjoyed two apiece with tea or milk.

My daughter was well into her second one, approximately three and a half hours after she tested for lunch, when I realized she hadn't checked since.

At this point, did I:

1. Stop the giggly conversation and send her immediately to wash her hands and check?

or

2. Let her eat her brownie and giggle with her friends, bolusing for the carbs and hoping for the best?

For a couple of reasons I chose 2.

First of all I couldn't bring myself to allow diabetes to break up this birthday moment.  She won't have another 12th birthday but diabetes will be a part of every day for the foreseeable future.

Secondly she appeared to be fine; not lethargic like she was very high and not out of it like she was very low.  I really did think this through, and if looking at the big picture I'd had any cause for concern then I would have called a time-out.

Thirdly (and maybe I'm just rationalizing here) she was well into the second brownie. What information, exactly, were we going to get from this check?  If she was high, would I correct the high and bolus the carbs?  Or would I assume the high was at least partially from the brownies?  If she was lowish, would I take off some of the carbs I would have bolused or assumed the brownies would shoot her back up anyway?

The end result?  Her 90 minutes post-brownie number was 148.

This is obviously not medical advice. We check before eating 99.99% of the time as recommended by every endocrinology team on earth.  We simply got lucky with the end result...a little extra birthday gift, perhaps.

Once I'd realized the mistake, the scene took on a bittersweet tone.  I guess this is how other kids celebrate their birthdays.  There's no awkward pre-cake pause.  No blood is involved.  There's no possibility that the dessert will be downsized due to an astronomical number. Nobody hovers as the candles are blown out to tally carbs and deliver insulin.

It was nice, if only for a moment, to forget.

A Mystery Story

The phone rang.

'School' read out on the caller ID.

When I answered, I could immediately hear the fuzzy echo of speakerphone.

My daughter's voice: "I don't know what my blood sugar is."

She has 2 meters at school, one with her and one in the nurse's office.  There are 3 other kids with diabetes and the nurse has a back-up.  There's no way this information wasn't available.  "What do you mean?"

"I checked with the one in my bag in the classroom and I was 195 but I felt really high so I came down here anyway.  I washed my hands and the one in the nurse's office says I'm 348.  I checked again with the one in my bag and it said I was 297.  Then we tried the nurse's spare one and it said I was 140."

The nurse chimed in throughout the story and concluded with, "We really aren't sure what to do next."

There I was, on the other end of the phone, expected to solve this problem.

Ultimately we decided that I would come to school with her meter from home, the one we use all day every day. She was instructed to drink some water and went back to class for the time it took me to get there.

I remembered on the way out the door that I had a bottle of control solution. I threw it in my pocket with the trusted meter.

Our meters at school checked out with control solution. The nurse's was a different brand so we couldn't test that one.

My daughter was called down from the classroom.  She checked on 4 meters.

Home:  290

Personal Nurse's Office:  260

Purse:  266

Nurse's spare:  254

We corrected using 260 as a safe average and sent her back to class.  I left her home meter with her for the day with newly opened test strips.

Meanwhile, Strip Safely anybody?  We need to keep encouraging the FDA to tighten standards.  I can't figure how this was caused by anything but technology failure.

Trick-or-Treating ON Halloween!

It's been 3 years since my daughter has gone trick-or-treating on Halloween.  First there was a freak snowstorm that put our town out of commission for a week.  Then there was Sandy.  Each year a different night was designated for trick-or-treat, but the experience lost some of its luster with the delay and the lingering damage we walked through as we navigated the sidewalks.

Below is the post I put together after last year's "Halloween." It shares our candy allocation system, which will be the same this year.  Rereading it, though, I was particularly struck by how it highlights our Halloween philosophy.  It's not about the candy.  It's about wearing a fun costume, being with friends and visiting neighbors. Combine those factors with the excitement of going out ON Halloween night, and tonight should be spookily delightful.

No...this post isn't late.  It's only the day after Halloween at our house.  Our sense of time and connection to the rest of the world continues to be altered a bit from the after-effects of Sandy.

Glad for the opportunity to trick or treat, my daughter the witch met up with a blue and green striped monster and a werewolf for a some fun last night.

As is our tradition, we came home and sorted the winnings into four piles:

From left to right, we begin with the dish of candy to keep and enjoy over the next week.  Next is the container of fast-acting carbs like smarties, sweet tarts and nerds.  Third is the container of pretzels and chips, great to throw in the lunch box or to snack on.  Last is the bag from which my husband and I will pull a few favorites before the rest gets donated.

I often get asked if Halloween is hard for my child because of diabetes.  I have two answers.  First, I clarify that she can enjoy candy in moderation.  Then I talk about all of the other fun aspects of Halloween like costumes, pumpkins, being a little spooked, enjoying friends, and walking around after dark.  Last night, we walked around a neighborhood which had only had power back for about 24 hours.  People were so happy to have the kids come by and to catch up with their neighbors. Doing something so fun and frivolous after the week we'd had made this Halloween extra special.

Sick Day Project

Yesterday was a sick day to recover from a cold.  So Ruby and Rufus came out 

to help us with a very important project:

We put together our cards for the World Diabetes Day postcard exchange.

The germs should die off in plenty of time to mail them.  Now if the glue would just dry in time too...

Having Diabetes and Trying Not To

This week finds us balancing the work of living with diabetes with work towards awareness and a cure.

A month and several packages of juice boxes later we're getting a handle on a low blood sugar trend.  It will undoubtedly morph into a high blood sugar trend very soon, requiring a restoration of the basal and carb settings as if the whole episode had never occurred.

Yesterday was our fall endocrinologist appointment.  My daughter's A1C was down, probably not just from the aforementioned low trend, so that was good news. The charts and graphs looked pretty nice. Bad news? It's time for annual blood work.

Meanwhile, we're collecting materials to make postcards this weekend for the World Diabetes Day Postcard Exchange.  This will be our third year participating.  It's fun to create and write our cards, and particularly fun to get mail!

The middle school had its annual JDRF Kids Walk last Friday.  My daughter has gotten involved in the club that runs it.  She made announcements and helped put up posters. She went around at lunch all week collecting donations in exchange for kids writing their names on paper sneakers. She learned yesterday that they raised over $1000.

This Saturday is our local JDRF walk. We've managed to recruit a few new team members this year, and our fundraising is going well.  It also looks like (fingers crossed) the sun will shine!

On one hand it feels like it's all diabetes all the time around here. Can we not think, talk, write about anything else? On the other hand, having these positive diabetes activities to balance the everyday burdensome ones isn't bad.  We're feeling supported and encouraged by our personal community and the diabetes community at large.  And we feel like we're doing something to change our circumstances in the long run.

Walk season and November's diabetes awareness month are when we recharge our batteries.  Like sponges, we suck up the kindness and hope.  The notes which come with donations, the surprise support for our walk team, the $1000 raised at the school, the postcards, the buildings lit in blue, the people in the media talking about and advocating about diabetes are all absorbed in the fall.  At 2 a.m. on a Wednesday in February when I'm standing by my daughter's bed surrounded by empty juice boxes and feeling defeated by this crummy disease, I hope I can draw on some of the hope and encouragement which surrounds me today.

Her Voice

Sometimes my daughter will treat a low at school and I'll find out later when the nurse has a moment to call. Other times, particularly when she's really feeling the low, I'll get a call right away.

The phone rang the other afternoon.

"I'm... 59," the voice at the other end of the line said.

There was a brief pause.   "I'm...I'm drinking juice."  Slurp.

"Good.  What were you at lunch?"

"I..I...don't know. Should I...go... back to class?"

"Um...no.  I think you should sit with the nurse and check again in 10 minutes."

"O.k.  Yeah.  I will."

I'm certain the nurse would have kept her there anyway, and that the phone call was mostly to hear my voice.

What was unsettling was to hear her voice.  It was quiet, hesitant, scared.  Her thoughts came slowly, foggily. It made me want to get in the car, drive over there, and hug her tight.

Ten minutes later, the phone rang again.  "Hi!  I'm up to 79.  Should I do anything else?"  The confident, happy, energetic, clear thinking kid was back.

"Chew a glucose tab just to be sure and check again between periods."

"O.k.  Bye!"

"Love you. Bye!"

And she was off.

Walking. Again.

Below are excerpts from the letter I emailed and facebooked to our friends and family last week:

This year marks the 10th year our family has walked for JDRF.  Our first walk was in Boston, 11 months after she was diagnosed.  We walked 3 miles through Boston in the pouring rain carrying a 23 month old who refused to sit in her stroller.  Despite all of that, it was an incredible day.  People lined the banks of the Charles River as far as we could see in either direction. They were all there because they knew what we'd found out over the past year.  Living with diabetes is painful and challenging.  They were hopeful that the research supported by JDRF would improve the lives of people with diabetes. That hope was contagious, and started us on our journey towards supporting this organization.

I'll spare you the paragraph about the how crappy it is to live with diabetes, and the one about the kinds of research JDRF supports. If you're reading this, you have at least a rudimentary knowledge of both.

Ten years is a long time.  Some of you have been asked ten times now to join us and/or donate to our walk team.  Maybe you're tired of being asked.  We're certainly tired of asking. Yet we hope you've caught a little bit of our hope that JDRF is making progress, and that one day you'll be able to join us in saying that we made our hope for a cure a reality.

Writing the walk letter gets harder every year.  I truly am tired of asking people to give money to JDRF.  I'm tired of organizing the walk-day logistics.  I'm tired of how difficult it is for friends to participate because they're overloaded with fall sports, activities and competing charitable commitments. I'm tired of setting aside the day every year on our calendar.  Every September, I find it harder to begin again.

Then I remember that I'm tired of the aforementioned crappiness of living with diabetes. So another walk season commences.

Before I know it, nice things start to happen.  People donate generously. Someone who hasn't walked with us before is able to come. An encouraging note comes along with a donation.

I begin to realize again that I'm not alone.  While these people aren't in the trenches with me every day, they care.  Before I know it, I begin to feel a bit of that hope I artfully described in my letter. 

It feels good.

Strips

Our latest shipment of test strips arrived the other day.  I opened the box to put them away but stopped, puzzled.  These boxes were smaller, about half the size of the usual ones.  Maybe there were twice as many boxes of 50 instead of the usual number of boxes of 100?  A quick count told me no, there were the same number of boxes as usual.  Dreading what I presumed would be an unpleasant call to customer service, I investigated further.  Was I missing something?

Indeed I was.  Once I peeled off the label which covered most of the new box, I discovered the secret.  This box held 100 strips just like the old ones.

They'd put 50 strips in each vial instead of the usual 25.  I happened to know this was possible.  When we've traveled, or gone on long, strip-intensive day trips, I've always combined two vials of strips.  It's good insurance against running out somewhere inconvenient.  It saves us digging through the diabetes travel box trying to find another vial at 2 a.m. the night we arrive at grandma's.  There's probably some reason the strip manufacturer would discourage me from doing this, but it's worked for us.

While fewer trips to the closet to get a new vial of strips will be very convenient for our family, this change makes me particularly happy for another reason.  This change means half as much waste.  We're tossing half as many strip vials and recycling boxes half the size for the same amount of product.  

Kudos to One Touch for packaging strips this way, and to our mail order pharmacy for sending them this way. The amount of waste diabetes creates in our household continues to bother me.  I'm grateful for any changes to lessen the environmental impact of managing this disease.

Junior Diabetes

I was waiting for the question.  The sneakers were up behind the counter. The cashier at Marshalls rang up my purchases. Then he looked up.  "Would you like to donate to the Junior Diabetes Foundation?" 

As you may be aware, there's an ongoing discussion in the diabetes community about the name for the autoimmune form of diabetes.  Juvenile Diabetes was the original.  Type 1 is the current.  Some think the third time will be a charm.

Despite the push to use 'type 1,' or an even newer moniker, 'juvenile' lingers. One reason is that it's featured in the original name of the disease's primary foundation.  JDRF began as the Juvenile Diabetes Research Foundation.  According to the people running our local walk kick-off event this summer, JDRF has chosen to shorten its official name to the acronym, but not to change it completely.  The concern is that brand recognition is imperative for their fundraising efforts. An explanation of their re-branding can be found on the JDRF website.

Their decision is understandable in some ways, but problematic in others.  When people see an acronym, they assume it stands for the organization's name.  JDRF has redrawn their logo to make the J and D resemble T1D.  Next to their logo are the words, 'Improving lives. Curing Type 1 Diabetes.'  Yet verbally, that doesn't come across.  Selling sneakers at the check-out is very much a verbal transaction. The cashier was stuck with an acronym: JDRF.  I imagine a training packet comes with the sneakers, with sales pitches to use.  I also imagine that if staff are actually trained, not much of it sticks.

So I was asked to donate to the Junior Diabetes Foundation.  It could have been worse.  Diabetes made it in there, which defined the essential purpose of the fundraising.  Anyone with a connection to the disease would probably have accurately translated the question.

I suppose I could have said something like, "It's actually Type 1 Diabetes.  The J used to stand for Juvenile, and the organization used to be called the Juvenile Diabetes Research Foundation but they changed their name to just an acronym because the disease was renamed and because people of all ages live with it."  I'm guessing his eyes would have glazed over pretty quickly.

So I simply donated and said,  "Absolutely.  And thank you for asking.  My daughter has diabetes and JDRF's research means a lot to us."

Vegetable Garden

Today is 'no d day' when we try to make it through the day without mentioning the d word.  For more info, to participate, or to read more no d day posts, visit Ninjabetic.

This spring we added a vegetable garden to our back  yard.  We bought a raised garden bed kit from Home Depot and built a 4 x 4 square, filling it with topsoil and compost.  We're still working on eradicating the weeds and vines which came with the house's existing garden beds. Starting fresh gave the plants a fighting chance with fresh soil and few weeds. 

Our plentiful crops of cucumbers and spinach are finished. What else did we grow? 



We're eagerly awaiting our next crop of lettuce.  The first round provided countless salads.

We grew herbs. Basil and parsley are pictured here.  We also grew mint and rosemary.  I love going out back to pick just what I need for a recipe.

These sweet little grape tomatoes just keep coming.  My daughter, who doesn't ordinarily like tomatoes, has been eating them off the vine all summer.

No, it's not a vegetable.  But it's a gardening success.  The seed for this sunflower came in my daughter's Easter basket.  We started it inside, assuming that like every sunflower we've tried to grow it would instantaneously die once transplanted.  I decided to help it along a bit by planting it in the corner of the new vegetable garden.  We staked it up.  More than once we thought we'd lost it.  But here it is...about to bloom!

We planted marigolds too, amongst the tomatoes to repel pests.  We had no tomato problems, but next year, I might not need so many marigolds. They kind of took over.

Next year?  We're seriously considering adding another bed.  We'd love to try growing green and yellow beans, summer squash, peppers and more herbs.  Yum!

Fall-ing Blood Sugars

During my daughter's first autumn with diabetes, almost a year after her diagnosis,  something weird began to happen. She started to experience low blood sugars.  Lots of them.  At all different times of day.  She wasn't eating less.  She wasn't more active. This new pattern seemed to have come out of nowhere. 

Stumped and worried, I called our Certified Diabetes Educator.  She instructed me to cut back the dose of long-acting insulin.  I agreed to do so, but asked if she had any idea why this might be happening.  She made a couple of guesses.  Maybe her pancreas was giving insulin production one last effort in what clinicians call the 'honeymoon period' of diabetes.  Maybe she'd been growing for a time and had stopped.  More likely, though, we'd never know.

We still don't know, but what's really curious is that it's happened every fall since then.  It makes very little sense. In fact logic would lead one to assume the opposite would happen.

Fall is the season of slowing down.  She's settled into a chair at school all day, and homework takes up a good chunk of every afternoon.  School leads to more moments of stress. Apple desserts, heavy dinners and in our family, birthday cakes should be leading to high blood sugars.  Yet usually around the first of October, this bizarre pattern begins.

Yesterday's mid-morning low blood sugar call from the nurse's office after a bowl of cereal and an apple for breakfast was unprecedented.  Monday's post-gym low was less surprising, but that she didn't crest over 100 again until evening was unsettling.  Eating a brownie covered in m&m's at noon on Sunday with a blood sugar of 110 an hour afterwards was pretty awesome, but disconcerting at the same time.  Last night's blood sugars of 65 at 1:30 a.m., 80 at 2:30 a.m. and 90 at 3:30 a.m. and their related juicing and basal rate tweaking were exhausting. 

Needless to say, her fall A1C is always the best of the year.  Disappointment inevitably follows when the inexplicable cloud of pixie dust has passed and the high blood sugars creep back in. 

A quick internet search revealed no documented evidence of this phenomenon.  Sharing of similar stories and amateur speculation as to the root causes are welcome of course!

When Is Enough Enough?

After our last endocrinologist appointment at the end of the school year, we decided it was time to look into a continuous glucose monitoring system.  We also decided that we'd wait until fall.  This decision honored my daughter's concerns about having things stuck all over her during bathing suit season as well as my concerns about keeping things adhered to her during the season of water and sand. 

At the end of the summer we visited the orthodontist.  The idea of some kind of braces sometime in the future transformed into definite braces this January.  These won't be just run of the mill braces.  We left the appointment understanding that she will be chewing with only her four back teeth for between eighteen  months and two years, and that she will be wearing head gear, thankfully only at night.

So here she is...about to turn twelve.  She's growing quickly, and at that adorable-only-to-parents awkward, gangly stage. She already has an insulin pump toggled to her at all times.  She already has to carry around a bag full of accouterments everywhere she goes.  Now we're going to fill her mouth with metal, make eating anything coarser than applesauce a challenge and attach head gear to her at night.

Can you see why her enthusiasm about the CGM is waning?  Tacking on another bionic piece and adding another item to her already overloaded purse doesn't sound so appealing, no matter the benefits.  Lets add that it will probably beep at the most humiliating times.

Can you see why, if she knew anything about 70's television, she would be asking why we want to turn her into the bionic woman? 

We'll still proceed with the CGM.  Once those crazy braces go on, it will probably be even more important to keep a closer eye on those blood sugar numbers, at least until she gets used to eating with them. 

But from a psychosocial perspective, I'm reluctant.  Everyone's awkward at 12.  How much equipment can we adhere to her before the balance tips from awkward to crazy robot girl?  When is enough enough?

Logbook?

I discovered something quite by accident the other day.

We haven't kept a logbook all summer.

It seems like this should have been a conscious decision.  It might have followed a period of diabetes contemplation and culminated in a dinner table conversation with the family.  "What if we took a break from the logbook this summer," I might have said, sounding very wise.  "The meter has a history, and even some charts and graphs we can use.  But maybe a break from writing down every number would be good for our mental health."

That's not what happened.  Instead we finished a packet of stapled together log sheets (our version of a 'book') and I recycled it.  Maybe we were headed on a trip.  Maybe I was quickly cleaning up for company. Whatever the circumstances, it simply disappeared.  And apparently that's the last I thought of it...until today.

I spent some time last week tidying the little area in our kitchen where we keep the calendar, the grocery lists, scrap paper and the most urgent of mail and school notices.  I got to the bottom of the back-to-school fliers and recycled a bunch of old notes and receipts. The area looked oddly empty, like there was more space than usual, but I didn't give it much thought.

It was when my daughter got home from school that it hit me.  As she checked her blood sugar for snack, I asked what her lunch number was. I felt an urge to write it down. Suddenly it clicked. That empty spot was where my eyes looked for that familiar chart.

Did I run right to the the computer to print a dozen more log book pages, happily stapling them together and scanning the meter's memory to catch up for the week?

Um...no.

We may ultimately end up returning to that little packet of paper on the ledge, but if it fell so quickly from our collective memory, perhaps it wasn't as useful as we thought it was. First, there are things to consider.

Do we really need to document every number in the first place? Or is a quick glance at the meter's averages by time of day enough to help me spot a trend?  Did this summer's lack of focus on individual numbers allow us to see the forest instead of analyzing every tree? Looking back, I know that I've made insulin adjustments despite the lack of handwritten data.

If we do resume a formal system, maybe it's time to consider some tech-based tracking options, like downloading software or an app. Maybe we'll even give the equipment that came with the pump another go. 

There are surely benefits to documenting numbers. There are 3 of us living here, all interested in my daughter's blood sugars, so it's a communication tool.  I can know the lunch number at school. My daughter can know what she was at 2 a.m.  My husband can check the dinner number before making a late night correction.  It also provides a historical picture, helping us spot changes in blood sugar trends and make needed adjustments.  It encourages smart choices when, for instance, a glance at the post-cider donut 300 provides a reminder to think twice before indulging again. 

While I realize these may turn out to be a rhetorical (ridiculous?) questions, I'll throw them out there anyway:  Do you love your logging system?  Do you have one you couldn't live without?  Should we just go back to our messy, easily forgotten log sheets?  Doing nothing but relying on the meter's memory seems like not enough, but I'm not sure where we go next.

Should I Be More Worried?

It's the first day of school in our neck of the woods.  And I'm not terribly worried about it.

My daughter is off to the same school.  She'll have the same nurse.  While her academic teachers will be new to her, the rest of the staff and administration is familiar with her.

Don't get me wrong. The baseline anxiety is a constant.  Anything can happen during the 7+ hours my child is out of my sight.  A low blood sugar could go unnoticed and untreated for too long.  A pump site could fail.  A student or teacher could give her a hard time about needing to detour to the nurse's office.

There's also the added first day of school anxiety.  How will the nurse's office visits fit into the new schedule?  Will she have lunch with the same understanding group of friends who always save her a seat?  Will she be so distracted by the newness of her classes and teachers that a diabetes issue will go unrecognized?  Will her teachers understand her needs and be supportive if necessary?

Last year's school start involved a new school and a boatload of anxiety for both of us.  I have to believe this year's challenges, should there be some, will pale in comparison. 

I have my phone at hand, well prepared for 'school' to pop up on the caller i.d.

I am planning a special first day of school dinner complete with a bolus-worthy dessert intended to smooth out any wrinkles of the day.

Yet I'm not that worried.  If I'm proven wrong, I guess I'll deal with it then.

Wordless Wednesday: Back To School Supplies

Revisiting 504 Resources

Some parts of the country are back to school already while some of us have a few fleeting days of summer left to enjoy.  Either way, it's time to think about 504 plans.  These documents outline the accommodations which will be made by the school to allow a child to manage a medical condition without compromising education.  Or do they allow for getting a good education without compromising on needed medical attention?  Either way, if a child has diabetes, a 504 plan is important. Knowing how to secure one and what to put in it can be tricky.  Below is a post I wrote last fall after updating my daughter's 504 plan at her then new school: 

Last week I met with our school's 504 team and finalized my daughter's plan for this year.  In the past these meetings were somewhat routine.  Going into a new school, with a more complicated schedule and a whole new cast of characters, I felt it important to do my homework and enter the process prepared.

Below are a few resources which might be helpful to parents who are entering the 504 process for the first time, or who are looking to make some significant changes or updates to one which is in place:

The American Diabetes Association has a Safe At School campaign.  This includes a publication which they will send to you and/or your school.  It provides comprehensive information about all kinds of diabetes issues which could arise and ways to handle them.  The Safe At School section of the website provides links to additional staff training resources as well as sample 504 plans, and good advice about working with staff to obtain the best support for your child at school.  There is also a very thorough section on legal resources.  It explains channels through which to proceed should you be unable to secure a 504 plan for your child, or secure the reasonable accommodations you wish to have in there.  Also helpful is a directory of applicable state laws which relate to diabetes in school.

The Juvenile Diabetes Research Foundation puts out a 'School Advisory Toolkit'.  It comes as a hard copy from your local chapter, or is easily requested to download yourself.  It contains an overview of the 504 laws and practical information to help put one in place at your school for your child.  There are helpful samples of 504 accommodations as well as sample forms for different circumstances, such as one for a teacher to leave for substitutes.

Both ADA and JDRF have helpful back to school webcasts which can be viewed anytime through their websites.

Children With Diabetes has a page on Diabetes At School.  It contains links to a multitude of resources.  These include sample plans and forms, legal information, SAT testing rules and advice, and links to a variety of publications and websites which also deal with this issue.  Unique to Children With Diabetes is the opportunity to look at past polls, message board conversations and ask the expert results around this issue.  Reading how real-life situations have been resolved can be helpful in brainstorming solutions for your own.

A common theme throughout these resources bears repeating and emphasizing. Taking the time to make sure school staff understand a bit about Type 1 Diabetes will go a long way.  Educate staff about the effects and dangers of high and low blood sugars and the process of keeping them at bay. Explain, with examples if you possibly can, how diabetes has affected your child's school day in the past.  Use this information as the basis for making your requests regarding how your child's diabetes is handled at school.

Our 504 process ended with a mutually agreeable plan.  More importantly, it ended with our school's staff having a better understanding of Type 1 Diabetes.  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.

CSI Summer Cottage

Setting:  A vacation cottage in a quaint New England seashore village.  Specifically  a child's bedroom in which all surfaces are draped in white and cream colored fabric including but not limited to the bedspread, rug, doilies, armchair cover and child's shorts.

Scene 1:  Mother prepares items for site change.  She draws up fresh insulin, gathers supplies from a large plastic bin.  Daughter assumes a position for comfortable site insertion and happily finishes a chapter of this summer's Harry Potter book. 

Scene 2: Unisolve adhesive remover is applied to the old site for easy removal and IV prep to a new site area for infection-free insertion.  Mother and daughter chat about the day's seashore adventures while the wipes do their trick.

Scene 3: Mother peels off the old site.  Blood shoots out of it, reminiscent of a fountain.  Mother screams, prompting daughter to scream.  Mother lunges for tissue box across the room, hands covered in blood.  She grabs a wad of tissues and presses it on to the gushing area.  Daughter performs yoga moves to elevate the affected area above her heart.  The bleeding slowly subsides.

Scene 4:  Damage is assessed.  Spots of blood are located on the white-covered chair across the room, behind the child.  A pool of blood is located in the bed frame in front of the child.  Spots of blood are also found in several areas of the rug, bed skirt, child's shorts and sheets.  Mother wonders aloud what cottage owners would assume had happened here if the blood could not be cleaned up.

Scene 5: Mother secures paper towels and cold water.  Scrubbing commences.  Daughter remains in a yoga pose with fresh tissues firmly pressed to the offending area.  The white arm chair cover seems most important to clean.  Blood is removed with surprising ease, giving mother hope.  Rug blood is scrubbed to the point of being difficult to detect.  The bed frame wipes clean easily despite a surprising large puddle of blood. The bed skirt is the only remaining item not belonging to the child.  This proves more difficult to clean.  Mother gives up and returns her attention to the child who still needs a new site inserted.

Scene 6: A new site is inserted without incident.  The old one has stopped bleeding but is covered in a band aid just in case.  More cold water, then a bleach pen are applied to the bed skirt, with adequate results. Mother then repositions it so a remaining faint stain is less obvious.  The sheets have blood stains already from nightime fingersticks, so mother decides they are not worth washing 2 days before vacation's end.  Spattered clothing is pre-treated and put in the laundry.

Scene 7: Mother and daughter have showered and dressed in clean clothes.  The family sips cocktails (and iced tea) at a semi-fancy seafood restaurant.  Mother continues to wonder what a blood spatter expert would make of the scene she has just cleaned up, and how much DNA evidence she has left behind.

Big Numbers

I'm afraid of big numbers.

Like any person who manages or helps to manage diabetes, I'm afraid of big blood sugar numbers and big A1C numbers.  Every day is a battle to keep those under an acceptable threshold.  Yet those aren't the numbers to which I refer.

What I'm really afraid of are big carbohydrate numbers and big insulin bolus numbers.

My guess is that it all stems from having a child who was diagnosed as a baby.  She was 13 months old.  We diluted her insulin because we couldn't possibly measure the tiny amounts she needed with an ordinary syringe.  Her total daily dose was about 4 units.

She didn't eat much.  Breakfast was probably the biggest meal, carb-wise, coming in at a whopping 22 carbs.  She'd have a quarter cup of cheerios(8), half a small pear or half a jar of baby food fruit (8) and half a cup of milk (6).  Snacks were 8 grams, maybe 4 crackers or 25 goldfish.

To this day it gives me great pause to bolus for more than about 25 carbs. 

I vaguely remember mentioning this to a diabetes educator once, who kindly referred to it as a 'healthy fear of insulin.'  It's not all bad.  I'm not prone to over-bolusing and causing severe lows.

What I am prone to is under-bolusing.  The rational part of me weighs/measures/eyeballs the food and thinks '80 carbs.'  Then there's a little voice which says, 'but she never eats 80 carbs.'  Or 'how could that one dessert be 80 carbs?'

More and more often, I'm able to close my eyes, hold my breath, and deliver whatever crazy amount of insulin is called for.  An hour or two later, I'm glad I did.  Yet I never do it without trepidation. 

You Should Really Call Your Vet

Diagnosed at 13 months old, my daughter started her time with diabetes on tiny doses of insulin.  The NPH was measured in half unit doses, so with the smallest insulin syringe we could measure that dose accurately.  The Humalog dose was often best measured in increments of .25 or less.  It was much safer and easier to prepare those doses with diluted insulin.

The pharmacy at the children's hospital diluted our first batch for us.  We did some research and discovered we had what's called a 'compounding pharmacy' very close to our home.

Per Wikipedia, "Pharmaceutical compounding (done in compounding pharmacies) is the creation of a particular pharmaceutical product to fit the unique needs of a patient. To do this, compounding pharmacists combine or process appropriate ingredients using various tools. This may be done for medically necessary reasons, such as to change the form of the medication from a solid pill to a liquid, to avoid a non-essential ingredient that the patient is allergic to, or to obtain the exact dose(s) needed or deemed best of particular active pharmaceutical ingredient(s)."

Initially, this service was ideal.  We got to know the head pharmacist well, and he took a shine to my daughter.  The pharmacy was also a fabulous gift and card store, and had fun toys to check out while we were there. 

After nearly a year of seamless insulin pick-up, the pharmacist retired.  He explained that other staff members knew how to dilute the insulin and that we should have no problem.

One afternoon, I picked up my insulin and brought it home.  I took it out of the box, and noticed it looked different.  It was full strength Humalog.  If I'd measured 5 units of that on my insulin syringe for my daughter's .5 unit dose, it would have been disastrous.

I took it back.  Someone diluted it.  The next time I checked before I left the store.  It wasn't diluted.  I pointed out the problem to the pharmacist.

"We don't ordinarly dilute insulin.  You should really be having your vet do that for you."

"My vet?"

"Yeah...they do that all the time."

My daughter was next to me, holding my hand. "I've never taken my daughter to a vet before."

A blank stare.

"It's for her," glancing down at my little girl, "not a pet."

"Oh...I'm so sorry, maam." 

At our next appointment, the educator taught me how to dilute my own insulin.  

Everybody's Different

Sometimes I feel as though we're the only family who does not yet use a Continuous Glucose Monitoring System.  Though we're inching closer.

If not, then I'm certaily the only parent of a child with diabetes who has not read and highlighted every one of Gary Schneider's books.

Unless we're battling something significant or dangerous, I don't stay up all night checking blood sugars. If my daughter's number is 200 at 2 a.m., I'll give a small correction and go back to sleep. Shhh.

Does anyone else out there feed their child (gasp!) cereal in the morning?

Are we the only family who's never been to Friends For Life?

I'm guessing I'm not alone.  Everybody's different.  It's what makes the world go 'round, in a general sense for sure.  It's what makes the diabetes blogosphere so great too.  We read eachother's opinions.  Sometimes we find soulmates who are quite like us.  Sometimes we get talked into trying a new tactic, or file an idea away for a particular situation.  Sometimes we're left scratching our heads.  But it's all good because regardless, we're made better by sharing our thoughts and ideas with eachother.

It's 'leave a comment day' in the diabetes blogosphere. If you identify with any of the above, leave a comment and let me know I'm not alone.  If you think I'd be better off for changing my ways, let me know that too.  I know you'll be nice about it.  Or do you have thoughts about how our differences make the blogging world better? Or if that's all too much, just tell me your favorite summer beverage...that's easy, no? Whatever it is, bring it on.  I'm looking forward to reading your thoughts!

An Ice Cream-Free Heat Wave

It's been HOT here for a week and we're reaching the end of our list of coping mechanisms.  The town pool has gone from refreshing to soupy.  The mall was fun once.  We finished the jigsaw puzzle.  We read entire books during our visit to the library. 

Food-wise, we've grilled and crock-potted.  We've enjoyed salads, partly from our little garden, and we've consumed lots of summer fruits.  The slushie magic I picked up at a steep discount as a site change prize incentive has seen a lot of action.

Frozen fruit bars and even mediocre popsicles made from low-carb gatorade have made refreshing treats.  Yet what would really taste good is a nice cone of ice cream. 

Sadly, that's where we've hit a dead end. My daughter's lactose intolerance has chosen now to flare up.

With good reason, I guess.  We were traveling the weekend before last, and didn't put the pieces together until it was too late.  The day started with cereal with regular milk. Lunch was a bowl of new england clam chowder (her favorite). Dinner was pizza.  Despite the little lactaid tablets, this was too much for her system.  It was way more than the one or two small servings per day she was used to.

The dairy binge was followed by several days of feeling decidedly awful and subsequent days worrying about whether the discomfort had gone away for good.

She went at least a week completely dairy free.  She's since had a sprinkle of cheese on a taco and a couple of other negligible bits of dairy products.  Yet she's (understandably) nervous about trying anything more yet.

So we're sampling treats like sorbet in ice cream cones (really, really sticky), and almond milk smoothies ("whatever you put almond milk in, the whole thing just tastes like almond milk").

I'm not much of a complainer, or dweller on negative things.  But a heat wave without an ice cream cone outing is making me a little sad. 

Since I feel compelled to find a bright side, not dealing with ice-cream's all night blood sugar revenge is a huge plus.  While a sweet sorbet will cause a spike, it gets itself out of the way pretty quickly. 

Snippets

 What follows are a few recent every-day moments made possible by diabetes:

I received a voice mail from a diabetes supply company about a bill.  When I returned the call and stated I had not received an invoice for the bill in question, the representative responded by asking me for the invoice number about which I was calling.  This went on for about 3 rounds before we got any further.

I attracted significant attention at a social event by holding an enormous Costco-sized tin of cookies over my head to read the carbohydrate information printed, inconveniently, on the bottom.

My daughter supplied the words for a Mad Lib which described the demise of dinosaurs this way: "Scientists think a giant trophy fell from space, creating a nutty wave of insulin and dust which destroyed these magnificent creatures."  This was followed by a discussion of how the dinosaurs would have slowly all passed out from low blood sugars en route to their demise. Which raised questions regarding whether dinosaurs were naturally insulin-dependent in the first place.

Unisolve saved the day once again.  It's perfect for removing pine pitch from one's fingers.

Those moments when diabetes' presence can amuse, or even assist, are refreshing.

Waterproof

 

 

My daughter took this picture from her kayak last weekend:

 





 

 

The outing was made possible by Ziploc bags.

 

It's unlikely that our kayaks will get swamped or tipped on this calm pond.  More of a threat are the drips from the paddles, and the wet feet going in and out of the boat. 

 

One gallon sized bag holds the meter, glucose tabs, a juice box and a small snack.  It will also hold a small camera.

 

Circling the pond can take a couple of hours, depending on how many frogs, turtles or loons we need to stop and watch, or how long we stop in the shallows to chase polliwogs.

Knowing the diabetes essentials are dry and at the ready allows us to, for the most part, forget about them and enjoy the water.

 

 

 

 

Stealthy

This article appeared in our local paper a week or so ago.  From the Associated Press, it describes Medtronic's 'smart pump' research, with its automatic shut off for low blood sugar.  While a furrowed brow is usually the end result of my reading diabetes articles in the popular press, this one seemed fairly well fact-checked. 

What caught my attention was this sentence related to fear of overnight hypoglycemia:

Parents of children with diabetes often worry so much about this that they sneak into their bedrooms at night to check their child's blood-sugar monitor.

I clearly need to change my modus operandi for 2 a.m. checks. 

My current method involves stepping on several squeaky floorboards on the way in.  I turn on the flashlight.  About half the time I manage not to shine it right in her face.  When I put a strip in the meter, it beeps.  I stab her finger, then squeeze it, sometimes pretty hard, to get blood on the test strip.  The meter beeps again.  A couple of times a month, I have to wake her up to give her juice.  I can't say I never drop something on the floor sometime during the process.

With a CGM midnight finger pricks aren't always necessary, but beeping and waking for juice are still standard parts of the picture.

Clearly I'm doing it all wrong.  I need to get myself a black ski-mask and memorize the squeaky floorboards.  I'll also need a 'diabetes device silencer,' but I'm not sure I have the black market connections to make that happen.  The outstanding question is how to sneakily give a sleeping child juice...

Upping The Ante

It's summer music time again.  This nurse-free program offers music activities every morning through July, with instrumental and choral fun.  I've come a long way since the first year she went.  I've even accepted the chaos which is the last day's honestly advertised 'Junk Food Fest.'

This year my daughter asked to add on the musical theater part of the program.  We've seen these musicals each year and they're amazing, and particularly so considering they're put together over the course of only 4 weeks.  She really enjoyed her theater experience at school this year. The only reason to say 'no' was diabetes anxiety, but our household's policy states that diabetes is not a good enough reason to say 'no' to anything.  So I signed her up.

Here's the thing: she's now at this program from 8:30-2:30 with nobody to help her with diabetes stuff.  The staff know she has diabetes, as do a couple of friends there, but the responsibility for checking, treating, and bolusing is on her.  It's a big responsibility. 

We've set up a system, of course.  She texts me when she checks mid-morning, and again at lunchtime.  I text back any advice.  Her lunch carbs are written down for her.  I can be at the school where the program is held within 5 minutes if I need to be.

This situation seems, at times, perfectly reasonable.  I'm not asking her to do anything that she doesn't ordinarly do on her own at home.  I am always but a call or a text away if she needs help.  She's proven herself responsible in the past, so I trust that she will do what she needs to do.

Yet somehow in the back of my mind (or in the pit of my stomach), I can't help feeling like I've bet it all on black.

Wordless Wednesday: The Glucagon Edition

Note the expiration dates.

I picked these up on the same day at the same pharmacy.

It's the same scenario every time I refill the glucagon there.

Every kit we have expires in a different month (or year).

I can barely keep track of when we last did site change.  How am I supposed to remember when to replace these?!

Needs More Insulin

We visited the endocrinologist this week. 

In the weeks leading up to a visit, I am usually motivated to keep a more detailed log and to scan through the meter's averages and graphs.  I try to identify any major issues we need to discuss.   Sometimes I am able to fix a few things or at least narrow down the issues to a few really tricky ones.  I do this so that we can spend our endocrinologist time on issues I really need help with.

This time I tried to think about it.  I really tried to weed through all of those numbers and find the places we needed to change things.  I didn't know where to begin.  I gave up.  It turns out my confusion was warranted. The doctor's initial impression?

"She needs more insulin...like most of the day."

Her A1C was up, only by .3, but after going down a couple of times in a row it wasn't great news.  It wasn't surprising either.

Many things had changed since winter.  She'd added height.  She'd added weight. Yet she was missing a sufficient quantity of a key ingredient.

So we added insulin to almost every basal rate.  We added insulin to almost every carb ratio.  We added insulin to the correction factor.

We've been doing diabetes for ten and a half years.  I'm able to tweak a basal rate here and there, or recognize when the correction factor is no longer correcting.   I'm a person who, given sufficient knowledge, tries to solve problems on my own before asking for help.

Yet once in a while, particularly with a growing child, the time comes for a major overhaul. In many ways, it was freeing to hand that whole pile of 'undesirable' numbers over to the endo and say, 'please fix this.'   Now we'll watch and see if he did, and hope he at least got close enough that I can trouble-shoot the rest from there.

Size Matters

*This post is my June 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/june-dsma-blog-carnival-3/  The prompt reads, "We’d like to know: How do you select the diabetes devices you use? To others looking into new or replacement devices, what would be your best advice to someone shopping around?"

My daughter was 2 when we chose her first insulin pump.  She was tiny, and she needed tiny doses of insulin.

Our endocrinology team had brand of pump they were most familiar with, but encouraged us to do our own research and to come back to discuss.  I ordered brochures from all the major pump companies.  Side note: that's a very old-fashioned sounding sentence and makes me realize how much the world has changed in 10 years.  There was precious little online research involved in this decision.

I spoke with people in the support group I was attending at the time.  I compared all of the information I got with my daughter's needs and my own concerns.  I went back and discussed our options with our diabetes team.  I concluded that size does, indeed, matter.

Size of dosing mattered most, and at the time Animas was the only pump which could deliver basal increments of .025 units.  In such a tiny person, the flexibility of really fine-tuning those basal rates seemed important.  Indeed it was. For the first year or so on the pump she had an overnight basal of .025 units for a couple of hours every night.

The size of the pump mattered too.  I needed to be able to tuck it away.  No matter which brand we chose, a pump pack would be its home.  Yet even a half an inch would make a difference in how much it showed, and how it fit under a shirt, dress or overalls.  Animas was best in this category too, being the smallest option on the market at the time.

Other positives came up in my research, including good customer service, good initial training, and forward thinking product development.  There was no difference in insurance coverage. The only downside was that this was not the pump our diabetes team was most familiar with.  Yet they were all for the tiny doses and tiny size of the Animas pump and agreed it was a good fit for our daughter.  We've been quite happy with it ever since.

So what advice would I give other diabetes device shoppers, the prompt asks?  Gather information from as many sources as you can, while considering your own unique needs. Recognize that your diabetes team's suggestions are based on experience.  That can be helpful, but could also mean they're suggesting primarily those products they're most familiar and comfortable with. Ultimately, the product will be yours, worn on your body, or carried everywhere in your bag.  It needs to have the features you consider the most important for you.

Another Site Change Twofer

As a rule, we have very few site change issues, and very few sites which conk out on us.  We had gone for many months with nary a hint of a problem.  Then we apparently entered the dark hole of terrible site issues.  Last week's glitch-ridden site change seemed like maybe it should fulfill our mishap quotient for a while?

Alas, somehow the diabetes gods did not get the memo.

Yesterday started as just a run-of-the-mill, because it was time, site change day.  The old site came out fine, and all of the pump-related tasks were uneventful.  Finding a new site is more challenging in swimming season since she really likes it to be under her bathing suit.  An acceptable spot was negotiated.  The 'o.k.' was given.  I squeezed the inserter, and it popped in.  Sort-of.

The tape bunched up into layers which I had to very carefully unstick before I could pull the inserter out again.  A closer look left me wondering.

"I think it's in."

"Whaddaya mean, you think it's in?"

Well, I can see a little more of the tubing than usual, but it's definitely in...does it feel in?"

"Yeah...I mean I think so?  Can you push it further in?"

"No...the tape's all stuck down.  And anyway...I'm not sure if that even could work?"

"I think it's o.k."

We finished the post-insertion details and headed upstairs.  Periodic questions about how the site felt were met with one word answers such as "fine" or "o.k."

Two hours later, just as I'm finishing  dinner, "I think we should change this site."

It was tempting to blurt out, "you're telling me this now???"  I'm certain my face said it, even though I held my tongue.  The rational side of my brain urged me to keep calm, to be proud of her for still thinking about it and recognizing the need to act.  Regardless of the timing, bolusing for a carb-heavy dinner with a questionable site seemed like a bad idea.  I did my best to put dinner prep into suspended animation and we headed back to site change central. 

The old one (from 2 hours before) was bloody and awful.  The new one went in better. While the tape bunched again (atmospheric conditions? any ideas?) the cannula was definitely all the way in and it felt 'great.'  High praise indeed.

I hope we've now fulfilled whatever diabetes karma debt we were up against.