Tale of an ALMOST Responsible Girl Scout

As the parents of a child with Type 1 Diabetes, we are becoming braver.  We never used to let Ally out of our sight!  If she had an after-school activity or a birthday party to attend, one of us went along. 

She began voicing that she really doesn't want mom or dad hovering.  So, I'd sit in the car.  Maybe I'd go fill the car up with gas or get a car wash, but for the most part, I'd be just outside if they needed me.

We are becoming braver and she is becoming more responsible.  So we have begun making new plans for these activities. 

Ally is a Brownie Girl Scout.  They meet twice a month for an hour and a half.  The plan for her Brownie meeting was simple.  Her awesome Girl Scout leader sends me a message letting me know if/what the snack will be each time.  This week, the snack was going to be a pre-packaged Rice Krispy Treat, 17 carbs and a Roarin' Water drink pouch, 8 carbs.  Ally had checked her sugar before the meeting and her CGM was dead on.  So, she would not need to re-check her blood sugar at snack time.  I told her to look at her CGM to make sure that she was above 115 and that she wasn't headed down.  Then, enter 25 carbs just before eating the snack.  We wrote >115 and 25 carbs on a small index card as a reminder.

Great plan.

Only there was a snag.  She may be responsible, but she is only 8!

The girls were cleaning up as I arrived an hour and a half later to pick her up.  I asked her if she remembered to enter the carbs.  She looked at me with a panicked look..."MOM!  I entered the carbs, but we never had the snack."

They never had the snack!  I checked her pump's bolus history.  Sure enough, she had bolused (1 unit of insulin) for the 25 carb snack - 30 minutes earlier!    She thought that it was snack time and was trying to be responsible and entered her carbs.  The troop got sidetracked and jumped to something else rather than having snack at that time. 

I quickly gave her a snack and looked at her CGM.  It read 100, no arrows.  That could have been a lot worse!

I realize that I was a bit complacent.  With her recent independence, and amazing maturity, I had no doubt that she could handle this.  And she ALMOST did!  For a minute, I forgot that she is still a child.  She made a mistake.

Hopefully, we both learned a lesson from this.  I know that I did.  I think I know the next plan that we make, will be modified a bit!   (Like, make sure the food is sitting right in front of you before you enter the carbs into your pump - for starters!)  However, I still want to encourage her independence.  So, we will continue striving to find that balance.

Are you afraid of the dark?

Are you afraid of the dark?  Why is it that things that we are completely comfortable with when it is daylight, become scary or uncomfortable during the night?

During the day, my blinds are open, the doors are unlocked.  At night, I close the blinds and lock the doors.

I also become uncomfortable with going more than an hour or two knowing what Ally's blood sugar is.  I think the most logical reason for this is that when she is awake, she is aware of how she is feeling and mostly catches her lows before they get to be dangerously low.  When she is sleeping, she does not awaken to a low blood sugar (or a high for that matter).  She wears a CGM, which I thought would make me rest a little easier (you know, like carrying a flashlight in the dark), however it does not alarm loud enough to wake her.  Even when it starts vibrating after alarming for so long, she sleeps through it.  The baby monitor on her nightstand does not wake us either.  So, we set alarms to wake us up a few times a night to check her blood sugar.  But lately, I wake up before the alarm.  If I wake up, I have to go check her (or at least look at her CGM).  I can't let it go.  I don't check her this many times during the day.

Recently, on more than one occasion, we have awakened to realize that she had been alarming low for an hour or more.  For me, the fear of her having another dangerously low blood sugar overnight may never go away.  No matter what technology we have, I will always have that fear.

With that being said, if there is something that will make my nights a little less scary, I'm all for it!  My friend, Meri at Our Diabetic Life, has been sharing her experience with Medtronic's new mySentry.  If you have not yet seen her posts about this awesome new technology, I encourage you to check them out!

mySentry and myDisclosure

mySentry: My diary of the first 3 days.

Continuing the mySentry Dialog

How many is too many?

Blood glucose meters, that is.  The other day, I picked Ally up from school.  As we were driving to her after school activity, I realized that we had 4 meters with us in the car!

1) In My Purse.  I always carry a small meter in my purse in case we forget to grab Ally's diabetes bag on our way out the door.  I am trying to teach her to be responsible for making sure that we leave the house with her supplies, because one day it will be her responsibility.  But an 8 year old does forget things, so I carry a backup in my purse.  Plus you never know when the battery in your meter might stop working.

2) In Her Backpack.  The first year that we sent Ally to school with diabetes, I was told that she could not carry a blood glucose meter and lancing device on the school bus because the lancet was considered a weapon.  I followed the rules.  She did not carry a meter, just glucose tablets with her.  And then one day she stepped off the bus with a very low blood sugar (despite them checking before she got on the bus).  So year #2, I didn't ask.  I just put a meter in her backpack.  She also carries a card in her backpack with our phone numbers and the most important safety information about her diabetes. 

3) In Her D Bag that she takes with her to the after school activity.  Her diabetes bag that she carries with her when I am not along contains: meter, test strips, alcohol wipes, glucose tablets, glucagon, extra battery, cell phone, emergency card with T1 information and our phone numbers.  (But don't worry, other than when she is at school, she is never away from us for more than an hour or two at a time.  And even on those occasions, I don't go very far!)

and 

4) A Backup Meter that I Keep in the Car (for the same reasons as #1).  Who knows if it would actually work if we needed it.  The different temperatures that it is subjected to in the car (extreme cold in the winter and heat in the summer) must not be good for it.  But it is a backup to a backup (the one in my purse) after all!

Are we over-prepared?  Maybe.  Now, I don't intentionally carry 4 meters with us everywhere we go.  But I guess it's better to be over-prepared than to find ourselves in a pickle with no meter at all.

You Don't Know What You Have Until Its Gone

I know, that's kind of cliche.  But that doesn't mean its not true.

Let me tell you about some of the things that I have recently (well today mostly!) realized that I did not fully appreciate until they were gone.

My dishwasher.  Do you know how many dishes a family of 5 produces in one day?  I never really paid that much attention to it.  Just rinse, load, add soap, push a button or two...and Voila! clean dishes.  I have been going through these motions over and over (and over and over) again with my dear dishwasher for the past 10 years.  Never once did I say thank you, or even truly appreciate her hard work.  Until today.  She decided to go on strike!  :(  Can I just say that I hate washing dishes!  My hands are already so dry from the cold weather.  And those commercials that say "Tough on grease but soft on hands"...I don't think so!

My car.  Wow!  The miles that baby has carried us in 6 years.  I have appreciated some of the sweeter perks of my van over the years.  Once, when we were on vacation, we rented a mini-van.  It was then that I realized just how much I appreciated those automatic doors on our own van, you know the ones that close with just the touch of a button!  Love that!  But I have never really just appreciated the fact that I can get up and go whenever and wherever (almost!) that I want.  Tonight I went to pick Jessi up from an after school activity where I was left stranded in the parking lot because my car would not get up and go.  (Thank you to my dad for coming to our rescue so quickly - before we froze in the car!)

My husband!  Now I can't really say that I have never appreciated him (although I'm sure he'd love to argue that one :)  I appreciate a lot of things about my husband; and when he travels for work we all miss him.  But this week, I've realized how much of a team we make when it comes to managing Ally's diabetes.  Sure, I am home during the day, so I handle much of the regular routine of it.  But when it comes to making decisions about adjustments, or figuring out what is happening on a crazy day of numbers (like today!), it makes it so much more bearable when we can talk it through.  Much like the support I have found in the DOC, bouncing ideas off of one another gives us both confidence and helps us learn.  I don't see diabetes as the kind of subject that you cram for like we did in college for a chemistry test.  If that were the case, I'd be good at managing it.  There are so many facets to this challenge we were given.  And with each new food, or tummy bug, or physical activity, or growth spurt, or ... it is ever-changing.  Today, I realize how much I appreciate the team that my husband and I make!

I guess it is true, we don't truly appreciate the things that we have until we have to live without them.

CGM Blips

Why is it that the CGM always decides to give up on me, right when I need it most?

Ally had a 2 hour cheerleading clinic this morning.  We have a pretty good routine established for her usual one and a half hour practices.  They are normally after school on a week night.  AND her regular cheer coach is the one who is the most "in the know" about Ally's diabetes needs.

Since today was a little different, I wasn't sure how her blood sugar would be affected.  Would the insulin kick in before her breakfast?  Or would she spike, as she sometimes does with breakfast foods?  Does her body handle morning exercise differently than it does in the afternoon?  And then I worried because the clinic was given by a different cheer coach, not her "in the know" coach.  I was talking myself in circles.  Then I reminded myself that she will check her blood sugar half way through (after the first hour), she has her cell phone and that she is wearing her CGM which will help if she drops unexpectedly.  Ok, I will breathe a little easier.

That relief lasted all of about 10 minutes while we were driving to the clinic.  As we are nearing the gym, I hear her pump alarming.  Me- "Are you alarming?"  Ally - "Yep!  Change sensor." 

Ay yi yi! (Bold because, yes I screamed it!)

I have not been having great luck with the CGM sensors on her arm.  At our last endo visit, they recommended trying the sensor on her arm, instead of the bum where she had been exclusively wearing it.  The main reason was that her blood sugar numbers are so much better with the pump site in the bum.  She is too thin to use her tummy and her upper leg is more muscle than fat, so we don't get good numbers there either.  The endo reminded me that the most important thing is for her to get proper insulin absorption, so we said we'd give it a try.  She is doing great.  At first, she was nervous about inserting it on her arm.  The needle is like a harpoon and I admit, at first glance, I thought it could go right through her arm!  Ok, I'm exaggerating!!  But, it is a big needle!  She is past that now and doesn't seem to mind us inserting it there (with numbing cream, of course!).  However, since we have started using the arm, I've had sensors give up on me around the 4th day several times.  I've tried sensors from different boxes, so I don't think it is a bad batch.  Any ideas??

The good news is that she is now home from the two hour cheer clinic and I can breathe a little easier again!

Feeling Hopeful

A little over a year ago, I wrote about some Medtronic "hopefuls" that were coming down the pipeline.  I call them "hopefuls" because hearing about ideas and actually seeing them come to fruition are two different things.  I often get my hopes up when I hear of a new direction the hunt for a cure is taking.  I also get my hopes up when I hear of advancements in technology which will improve diabetes management, until that cure is found.  I never lose hope, but sometimes my initial excitement fades over time.

Well, let me tell you why we should never lose hope!  I found an email in my inbox this morning, letting me know that Lorraine had posted a new blog post over at This is Caleb.  She posted a video explaining Medtronic's new mySentry Remote Glucose Monitor.  I only had a couple of seconds to check it out, but after seeing it, became so excited that those seconds turned into hours!  I encourage you to visit This is Caleb and view that video!

This is a piece of Medtronic's news release, describing the mySentry:

mySentry is used in conjunction with the MiniMed Paradigm® REAL-Time Revel™ System, an insulin pump with built-in continuous glucose monitoring. mySentry can be placed in the bedroom or in any room throughout the house so all important information is just a glance away. mySentry provides flexibility and a wide range of uses including displaying all of the alerts and alarms available on the Paradigm Revel insulin pump: predictive alerts, continuous glucose monitoring (CGM) graph, insulin pump battery life, amount of insulin remaining, and time until the next glucose sensor calibration

(Yeah, yeah!  That is a better explanation than the one I gave back in November of 2010, where I called it "something like an alarm clock".)

Why is this new gadget so important to me?  I went back to find this old post I had written, linking to Beta Buddies and a wonderful post written by Reyna about Dead in Bed Syndrome.  I have revisited that post a hundred times in my head.  Reyna said it "out loud", but it is a fear that all DMamas live with on the inside.

Medtronic's news release stated "An estimated 75 percent of all episodes of severe hypoglycemia in children occur at night."

My husband or I wake up a minimum of two times every night to check Ally's blood sugar.  Our biggest fear is that Ally will suffer from a severe low at night while we are sleeping.  We also choose to check overnight blood sugars because we don't want to miss a high blood sugar, letting it go for 11 hours untreated.  This mySentry Remote Glucose Monitor will alarm if Ally drops too low or runs high.  You can even set it to alarm, predicting a low or high blood sugar (if you are using these predictive alarm features on the CGM).

My favorite thing about the mySentry is that it has a volume control!!  There have been one too many nights (including one this week!) where we awoke to check Ally in the night and have heard her CGM alarming low as we approach her room.  A moment of panic!  The alarms on her CGM are just not loud enough to awake her when she is sleeping.  We even have a baby monitor sitting next to her bed and we still can't hear the alarms when we are sleeping. 

I am so excited about the possiblities for safer care for my girl...and maybe even a better night's rest for Mom and Dad!

For more information, visit http://www.medtronicdiabetes.net/mysentry.