Closing a Chapter (Or Slamming The Book Shut!)

After spending a cumulative 12 hours in two days at our hospital, I am wiped out.

My head feels like a ton of bricks and my body feels like it has been encased in lead.  I half-heartedly explained to my husband that I am now another ten-years older in spirit.  The gray hairs have to be popping out everywhere.

After taking my own personal inventory of emotional baggage, I reflected on what the past two days have done to my children.

Because you see, I am not even a patient.  I am merely just a bystander.

What has this surreal life surrounded by doctors and living in a hospital done to them?

To an untrained eye, the girls seem mostly like any other typical 8 and 10- year old.  A few days post surgery and our oldest daughter is already asking about starting swimming and our youngest is playing fashion designer and doodling on every scrap paper in the house.  They are happy kids and are always up for an adventure.  We are in stage 1 of tumbling a few unpolished rocks and are busy on training our very large kitty on how to perform a trick.  Life IS really good.

Why is it that I am nervous?

Partly because underneath that happy smile is wisdom well beyond their years.  They have witnessed life at its best and its worst.  They understand that sometimes their most trusted grown-ups can't fix everything and that life is ever changing.  Much like the magician that pulls a rabbit out of a hat, life can pull the rug right out from underneath you.  With unsteady gait or sometimes even a fall, you have to work very hard at getting back up and learning to stand on your own two feet.

Now this is where I look at them even more carefully... has any of the past two days events caused them to falter and fall?  Do they need a hand in standing back up or are they OK to learn to get back up all on their own?

And this is the hardest part of parenting.  Not knowing when to swoop in and help and when to watch them  do it by themselves.  Even at their young ages, sometimes I have to hold myself back and do nothing more than watch and wait.

Which is what I am doing right now.

The second surgery is over.  The A1c is over.  Christmas is over.  That leaves us with only the eve of a new year and a possible new beginning.  I can take that chapter from the past few days and close it (or do what I really want and slam it shut).

I know that I can't take away from what my children have had to endure.  This is part of their history and childhood.  While none of this is what I had in my hopes and dreams for them, it is our reality and we can't pretend it didn't happen.  Teaching my children to embrace ALL that life brings them and to be strong enough to deal with it will always be my goal... diabetes and surgeries aside... this would have been part of my parenting map under any circumstance.

Understanding this moment, I allow them to take their own chapters and do what they want... close them, slam them, re-write them.  Whatever their needs may be, they are the owners of their own life story.

Watching them, I witness this... our oldest daughter recalls her moments before the surgery and after with a few tears sprinkled in.  She asks when things happened and our youngest daughter fills her in as best as she can, admitting that she had to leave the room when the IV line was inserted and during the rough recovery that brought all of the doctors back to her bed.  To that, my oldest daughter hugs her and offers support by explaining that she felt the same sadness at seeing our youngest daughter in the hospital years ago after being diagnosed with type 1 diabetes.  They talk about how hard it is to see each feeling hurt and how they wished none of that had happened. 

Wisely, I simply listen.  They are expressing their grief and validating each other's experiences.  This is not the moment that they need me to give them answers.  This is the moment that they need comfort and love and they need it from each other.  As a mother to them both, I am there for them both for endless love too.  But it would be wrong for me to break this precious moment.  This is what bonds them close.

This circle of events has brought them even closer.  The relationship between the two girls goes beyond sisters and even deeper, as closest confidantes.  They are connected deeply through some of the most difficult moments a child has to endure.  As I watch them, they hug each other and youngest daughter plants a gentle kiss on oldest daughter's bandaged arm.

Seeing and hearing this, I have a feeling that this new beginning is going to be even more amazing than any of us could imagine.

We are afterall, closer, wiser, stronger and grayer.... who can beat that?  And because I can't resist a moment more... I do swoop in and cover them both with hugs and kisses.  To which they laugh and giggle and tell me what they really want to do is play another game of Barbies.

I think we are going to be alright.

Friday Funnies - 12/30

A1C Day (2 for 1 Special!)

Today was our three month A1c appointment.  I've written about the parent report card before and how I try to encourage our family (and others) to not look at this as though it were a graded exam. 

This is hard to do.

Very hard.

As soon as I think of the appointment, I start analyzing all of the ups and downs that we had during the past quarter of a year.

"What about that missed bolus?"

"Hey, remember that night that we went out to eat and under-guestimated those steak fries?"

"What about the surgery recovery highs?"

"Oh no!  Not right now.  We are still dealing with illness!  That is going to make our charts look crazy!"


Ok, so all of those moments are not exactly "ups" but more like the reality of living life while dealing with type 1 diabetes.  Unless we climb back under our rock, we are going to have to face all of these very real situations head on. 

That tricky little A1c doesn't represent everything that happened.  It is merely a number and a swiftly changing one at that.

We need support not judgement from our endocrinologist team to acknowledge that we are doing our best as second-rate actors in a recurring pancreas role.

With heavy hearts, we went to our appointments.  With both girls, I like to joke that we are a 2 for 1 special at the office. 

We arrived.  Turned in our blood sugar logs, had the children weighed and measured.  Blood was taken from their fingertips from the comically oversize doctor blood glucose/A1C meter and we were ushered into a room designed to fit a sparrow's nest.

And then we waited.  But while we waited a great thing happened. 

First our favorite social worker popped her head in but only to make small talk with our family.  She came simply because she knew we were in the building and wanted to say hello.  After marveling over the girls, she told us about things happening in her own life.  It felt comfortable as we have known her for quite a while.  It was conversation as we would have with any of our friends.

Our hearts grew a bit lighter.

Then, a moment more and one of our favorite endocrinologists stopped in because she saw that we were on the schedule and wanted to see how we were doing and to see if we needed help with anything.  She also brought our nutritionist and we chatted about the holidays and each of our own families.  We exchanged anecdotes on raising children and being parents with a healthy dose of diabetes care thrown in.  We told her about the many events that had transpired with the girls and she listened and encouraged all that we had done with their care.  Instead of the judgement that my husband and I so feared, we felt nothing but positive reinforcement.

Another moment more and our scheduled endocrinologist, whom we treasure as well, came in and while we did discuss diabetes, we were also told that we were doing things right.  We were offered suggestions on improving areas but asked for feedback on those suggestions as well.

It was a team discussion.  We didn't feel reprimanded or isolated in our care choices.  In fact, we felt encouraged that we had been on the right track.  Maybe our performance as a second rate actor for a pancreas could actually get us some credit!

Another one of our favorite nurses came by with some personal diabetes experience as she also has type 1 diabetes and we listened to her sage advice.  Not just addressing the adults in the room, she made a point to talk to the girls and to get feedback from them as well.

Throughout our three hours in the clinic, I noticed that my girls seemed happy.  Yes, I am sure that they would rather be off playing or running around, but they seemed to enjoy seeing all of the friendly faces that we have come to know so well.

For the girls, their experience has been nothing but positive.  They view the a1c appointment as a chance to see the doctors, nurses, nutritionist and social worker as part of their inner circle.  People whom have known them for over half their lives and have witnessed them growing up in leaps and bounds.  They see the endocrinologist team not just at the clinic, but at our JDRF events and even during the week-long diabetes camp.  Sometimes, we even see them while we are out and living life.  Nothing like a big hug at the shopping mall from a world-renowned medical specialist!

As our time came to a close, my husband and I looked at each other and breathed a sigh of relief.  We laughed a bit too as we felt the stress and tension release from our bodies.

We have to remind ourselves that diabetes isn't about one visit to the clinic, a random a1c or a list of everything that we did "wrong". 

Diabetes is a journey.

Which we walk together.

With a team who have become our friends and friends who are on our team.

We are not alone.

We are in this together.

A Christmas Miracle (Or My Mind Wanders)

Our Family's Traditional Christmas Morning Orange Rolls

One for the record books!  This has definately been an unusual holiday break for our family.  

A few days before Christmas, our youngest daughter contracted a stomach virus.  On Christmas Day, our oldest daughter battled a migraine which led to sniffles and coughing the next day. 

Two separate viruses appear to be floating around our home and neither one we want.  Hello, Lysol!

Oldest daughter's common cold is our typical norm for illness.  The kids seem to pick this type of bug up once or twice a year.  Blood glucose tends to raise, sometimes uncomfortably, but we feel in control and with a few minor changes to either basal rates or extra bolus corrections, we can get that pesky blood sugar under control.

Because of the stomach virus, youngest daughter's blood glucose has remained low. Crazy low.  The kind of low where we actually had to decrease basal rates to 20% of her normal for 8 hours on Christmas Eve.

That's right.  -80% basal rate change.  I know.  Shocking, isn't it?

We have also decreased her boluses by about 30% too.

This is not the honeymoon period.  She has had diabetes for five years.

So what is this phenomenon? 

I have scoured the Internet and found nothing. 

Is this a Christmas Miracle? 

Obviously kidding but I did let my mind wander there around 2:00 a.m. a few days ago during one of her CGM alerts of a low blood sugar.

Lucky for her, (after the first night) she actually feels good and has a great appetite.  So maybe this is her special gift.  A chance to eat without bolusing much insulin and without having any rebound highs. 

Her gourmet menu of choice has included cookies, fudge, macaroni and cheese, Hawaiian rolls, cheesy potatoes and a sweet potato casserole which was really a dessert.  Last night, she indulged in a plate full of gooey cheese pizza at a new restaurant.  This morning, I surprised the girls with Monkey Bread. 

Through all of this, she has been low.

And even though our oldest daughter has battled her cold, because of our lovely Apidra insulin and basal rate changes, she has been able to eat everything as well.

Maybe that is the Christmas Miracle?

Christmas arrived and celebrated with gusto in spite of blood sugars high and low.  And maybe, just a little more so! 

Monkey Bread, anyone?

Merry Christmas!

From the Naturally Sweet Sisters,

Merry Christmas!

Classroom Holiday Parties (Or What Stinks?)

Lately, I find myself writing about life with diabetes in a way that sounds like Heloise Helpful Hints.  Except I am not Heloise and I sincerely doubt that Heloise even understands our kind of diabetes.  So for Heloise and anyone else interested, I am going to give you my take on the classroom party. 

First off, let me get this right out in the open. 

Most classroom parties are fun.

Mother's Day is my favorite.  I am sure you can guess why.  Who doesn't enjoy reading love sonnets about themselves and sipping tea with their child?

I also enjoy Valentine's Day for the same creativity that my girls put into their thoughtful sentiments to friends.

But one party makes my hair literally stand on edge and my head instantly pound:  The Classroom Holiday party.

Classroom holiday parties stink.

Oh, I know.  This really doesn't sound like me.  I mean, I love, love, love everything that is fun and festive. Sadly though, I have to admit...classroom holiday parties really do stink.

Let me give you some background before I give you my perspective on this one.  After my first full year with diabetes I learned a few things:

1.)  Kids first, diabetes second.
2.)  Parties can be fun.
3.)  Make happy memories to replace the not-so-happy ones.
4.)  Who eats crafts anyway?
5.)  Prepare for the unexpected. 

You may be asking yourself why I think parties stink.  That learning list doesn't seem like anything is really bad about parties. 

And that is true, mostly.  Parties are fun, EXCEPT for this one.

Classroom holiday parties are so over-the-top in a way that makes a child (and a parent) lose their mind.  While I do try to instill the belief that kids are first and diabetes is second, this isn't just a quick party.  It is a day (or three at my oldest daughter's school) packed with games, movies, sampling every religious tradition, Santa visits, singing, AND excessive eating.  Worse than Halloween, Thanksgiving, Valentine's Day, Easter and Fourth of July combined, holiday classroom parties are one big nightmare.  It is exhausting.

At this time of year, even the most well-behaved children easily become unglued (even my own!).  Kids are hopped up on magic, surprise and excitement.  They know a candle is going to be lit or a big guy in red is coming or maybe that Elf on a Shelf is going to drop off a secret present.  Whatever it is, kids are wired from the moment that they wake up until they literally, collapse into bed at night.

This leads to what I like to call 'The Bad Behavior Effect' or why holiday classroom parties stink.

It can strike at any moment but generally appears during the holiday classroom party.  This generally sucks the joy out of thinking that parties can be fun.  Have you ever listened to whining while driving from Michigan to Florida.  My friends, that is a 24 hour long trip and let me tell you, the classroom holiday party always have a couple of children that will relentlessly whine.  By the time you are out of the room, it will have felt like you should be entering Florida.

My favorite moment is when kids start stuffing in frosting and candy from the craft project (either decorating sugar cookies or mini gingerbread houses).  Once one child does it, the entire classroom does it.  Blood glucose immediately rises in the children with healthy pancreases and once their natural insulin kicks in, the kids find themselves in tears over who gets to sit next to Sally wearing the blinking elf hat.  This is most surely why no one should be eating their craft project. 

Ironically, this is one of my own child's most favorite memories.  She still giggles in a way that is much too old for her eight years and says, "Isn't it funny that all of that frosting made Jo go crazy?  I knew he shouldn't be doing that!  He needed some protein!"

In my own child, one without a working pancreas, because the festivities go on all day long in the classroom, her blood sugars never get a break.  Her numbers stay uncomfortably high all day long - even before eating - as the day is just packed with entertainment. 

Until Newton's Law kicks in.  What goes up must come down.

Which they do drop.

Big, ugly, drops.

Beyond the swinging blood sugars during holiday classroom parties, there is also this other effect of surprise additions to the menus.   Some overly zealous parent will bring in a sneak attack of food.  Even thought I am prepared to expect it, I am never quite prepared for exactly what will happen.  One year, a mom actually handed out full sized bags of m&m's to each child.  I am not talking about the 1 oz bag either, but the actual large bag of candy.  Another parent brought in bakery donuts AND bakery cupcakes.  Obviously that caused a stir with parents dealing with nut allergies but in general, this is what is so difficult with the classroom holiday party.  No one is ever satisfied.

Unlike any other party we attend throughout the many months of the year, this one puts us all on edge.  Maybe it is because there are 25 students, with an average of 10 extra siblings, and 15 parents hanging out in the classroom too.

With the heat on.

In a space of about 25' x 25'.

With the hallway door closed.

Yes, maybe this is the number one reason why classroom holiday parties stink.

Friday Funnies - 12/23

Belly Rolls (Is Proactive Care A Joke?)




 


I was going to publish a post that I had written on school holiday parties but it didn't feel right after yesterdays' "belly rolls" (trying to avoid the big P-word because my own stomach is in a bit of an upheaval today).

Instead I am choosing to write on something else that feels more important.

Proactive Type 1 Diabetes Care

I know.  Weird, right?  I mean in the world of type 1 diabetes, pretty much everything is at some point reactive. 

For example, you take a blood sugar reading and suddenly out of nowhere you are staring at a 353.   What do you do?  REACT.  Drop in a dose of insulin either through a syringe or through an insulin pump.

Your child refuses to eat all of their dinner and suddenly you are faced with a deficit in carbs for the pre-bolus that you gave 20 minutes ago.  What do you do?  REACT.  Against your better parenting judgement, you reach into the pantry for something out of the Halloween candy bag and offer it up.  You need carbs in that belly and they need to go in now.

The middle of the night blood glucose check reveals a low, low, low of 47.  What do you do?  REACT.  Lights on, juice in mouth and a couple of glucose tabs for good measure.  And if you are like me, you also react by not sleeping for the rest of the night because you are still on edge.

After all of that reacting, it is hard to feel like you can be proactive.  But sometimes you can.  You can almost beat that diabetes monster at his own game.  I say almost, because we can't completely cure it. Yet. 

Here are five proactive type 1 diabetes care tips that I have found helpful.    I hope you do too.

1.)  Supplies, supplies and more supplies.  You can never have enough.  Stuff those supplies everywhere.  Places we keep testers include the car, my husband's office (won't tell the whole story on this but once met him on the highway on our way to an amusement park because we had no test kits!), the neighbor's house, school, purse(s) and Grandma's house.  I am not an alarmist by any means, but I do keep a backpack loaded and ready with supplies in case we need to leave in a hurry. 

2.)  Bedtime snacks with fat and protein.  If your child can eat dairy, this is your opportunity to become parent of the year.  1/2 cup of ice cream has this magical quality of being the perfect combination of carbs/fat/protein that can usually sustain a small child through a night of fasting.  With my own girls, I can really see a difference on the nights that we do this.  Better glucose numbers = sleeping for all of us.  Thank you Mr. Breyers!  Oh, peanut butter sandwiches and cereal with milk work great too.

3.)  Plan for the unexpected.  I am sure that most likely you do.  I feel like a girl scout every single day when we leave the house.  Beyond the bags of supplies stashed everywhere, I also keep food in every single corner.  Kinda like a rogue squirrel, I literally have a bag of nuts AND candy.  Let me tell you, our family is fun on a road trip.  We know how to really, really picnic.

4.)  Use that technology.  First up is the wonderful combo bolus.  My friends, this is the best feature on an insulin pump.  It really helps not only with buffets, but certain problem foods like pizza and pancakes.  A little insulin now and little delivered later when the slow carbs are still being released.  Another simple item is the cell phone.  I am not in the least bit embarrassed to say that my oldest daughter received a cell phone at age 9.  It has kept her safe time and time again.  Nothing feels better than a text telling me what she is eating and bolusing for.  She does this without me prompting because it also feels good to her.  Lastly, the Continuous Glucose Monitor.  Even when blood glucose numbers are shifting quickly, the CGM spots trends that clue you in on the direction.  Not to mention that it alarms.  The middle of the night is still scary, but it is entirely LESS scary with our friendly CGM. 

5.)  Don't be afraid of Glucagon.  Have a plan worked out with your endocrinologist on how to administer mini-glucagon shots and WRITE IT DOWN.  This is one area where I need to improve.  When the time came to knowing exactly how much to dose, my mind went blank.  Thankfully, I had a good friend in the DOC who could walk me through it.  I will be writing our plan down and taping it on the wall next to the emergency contact list.  I am also going to share our story one more time with the endocrinologist's office to see if there was anything I could have improved on.  It never hurts to have a second (or twenty) pair(s) of eyes reviewing what you have done.

When you can proactively kick the Diabetes Monster before it can kick you or your child, I can most assuredly say nothing feels better!

Oh Glucagon, Oh Glucagon, How I do Love Thee

Title is cute, right?

Last night was anything but cute.

Youngest daughter came home from school feeling tired and asked to go into my room to watch TV and snuggle under the covers.  This is not normal behavior for a small child who loves to cook dinner, play with her sister or perform a singing/dancing number to entertain us all.

Sometime after dinner, she came back downstairs and was visibly shaking.  With a meter check, her BG was 53.  I quickly gave her a mini 14 carb juice box and had her drink it.  Immediately, she started to complain of her stomach hurting. 

Let me pause and explain that at this moment my instincts kicked in.  Although a blood glucose of 53 isn't low enough to warrant glucagon, it is actually what I immediately went for.   I knew a storm was brewing and could just tell that she was headed for the inevitible sunami of belly pains.

But my mind went blank on how many units to dose.  And this is where having friends in the DOC is most important.  My husband was still at work and I had no one except our oldest daughter to bounce ideas off of - which would have just scared her at the mere mention of glucagon.  I picked up my cell phone and immediately called a mom who has done mini-glucagon injections for her own child.

While on the phone, I mixed the glucagon and drew up 5 units ( apx. 3 less than the recommended one for every year of age due to the juice box) using one of our own 30 unit syringes.  I injected it and after saying our good-byes over the phone, my dear friend offered me support for the entire night.  That simple and kind gesture restored my calm and I knew that I had a friend 'in it with me'.

A bit later, we re-checked youngest daughters blood glucose.  The peak was around 100 but random testing everying 10-15 minutes showed that she was going back down.  She was wearing her CGM too but the lag time made it impossible to keep up with real time numbers, so all we could do is look at the trend arrows.   After seeing a second set of double arrows pointing down, I knew it was time for a second glucagon.  Again, drawing up a second dose and cutting it back to avoid inducing vomitting, I injected her with another 5 units.  I also decided to reduce her basal rate by 50% for four hours.

Throughout all of this, her face was as white and translucent as it has ever been.  Her hands were uncontrollably shaking and she was very cold.  After injecting the glucagon, slowly (it felt like hours but was just a few minutes), her color returned and she became more expressive telling us that her green room had looked purple.   And these are the symptoms from a blood glucose never below 50.

My husband came home right about this time and witnessed the second injection.  I could tell that he was scared to see me do it but he trusted that I knew the right thing to do.  After seeing her color return, he looked relieved and gave me a small squeeze of reassurance.  We tucked her into bed and continued to check her actual blood glucose every hour.  It stayed stable at around 125 - 135. 

Then, before midnight, our daughter started vomitting. 

We held her and wiped away the tears and soothed her worries.  Before long she was talking and saying how much better she felt.

At this point her blood glucose was in the high 180s.  I knew that she was going to be ok.  The glucagon had already raised her blood glucose to a comfortable level and we weren't fighting any bolus insulin.

We put her back into bed and made plans to continue to check throughout the rest of the night.  Around 5:00 a.m., she peaked at 254 blood glucose, so we gave her a tiny bit of a bolus at .20.  Just enough to take the number down a little bit.  As I write this, I am letting her hover around 200 blood glucose to ensure we are still safe.  With a stomach virus, 24 hours in the norm for recovery which makes me want to proceed cautiously.

And I feel safe knowing that we have more glucagon should we need it. And most importantly, dear friends in the DOC supporting us.

A Gift (Should I Thank Diabetes?)

As a mother of two children with type 1 diabetes, I am no stranger to surprises.  We shift gears on a moments notice quite easily at this point - which really does scream against my natural tendency to plan.  The unexpected IS expected.  At least that is what I plan for.

So it is not a shocker when a very special moment occurred in a very ordinary moment.  What is a surprise, is that in a way, I really feel like ought to be thanking the Diabetes Monster.

While sitting in the waiting area of my oldest daughter's school lobby, I noticed a beautiful woman, presumably another mother, sitting across from me and looking in my direction.  I didn't recognize her and assumed that she was one of the many parents that I hadn't met.  Our school is quite large, so not knowing everyone (unlike the elementary school) comes with the territory.

The bell rang and I got up to go find my oldest daughter as she continues to need assistance with packing and carrying her things due to that pesky broken hand. 

After an hour, my oldest daughter and I drove over to the elementary school, where we actually do know everyone, to pick up my youngest daughter.

The same woman that I had earlier noticed in the lobby was also at the same school and staring at me while I wrote on my child's sign out sheet. 

Which now makes me giggle, but I was seriously wondering if I had something embarrassing attached to me.  Any kick me signs?  No.  Toilet paper on my shoe?  No.  Lipstick smear?  No. 

Well, what then????

Just as I am about to leave and walk back to my car, the woman quickly approached and asked me if I had a daughter in the school.  I said that I did and that I also had another daughter in the middle school. 

She started to smile broadly and said, "Wait, is your oldest daughter is Mrs. L's class?"

I said yes and asked if she had a child in the same class.

Quite excitedly she said, "Yes!  My oldest daughter is the same class.  We just moved here from another state and my oldest started school a week ago."

Then she said, "My daughter said that your oldest daughter has juvenile diabetes.  Is that right?"

At this moment, I feel my smile stiffen a bit and I am prepared for a miscommunication and a story about type 2 diabetes or a story about a cousin's neighbor's brother or heck, even a cat.

But then she said, "I have it too.  Since I was 7."

When I told her that I actually had two children with type 1 diabetes, her smile lit completely up and she got right down at their level and pulled out her own silver insulin pump.

My girls both did the same and for about 60 seconds, three insulin pumps hung out together, like a completely typical moment in the school pick-up lounge.

Except it isn't typical.  It is wonderfully surprising.

Here is the thing.  It is hard to feel completely happy to have someone in your club (because who wants anyone else to have type 1 diabetes) but really, the truth is that I WAS excited and so was she!  Another friend for my daughter and another friend for me.  I am sure that she felt the same way.  These are our kind of people.  The people that get us and the people that we get too.

Since that meeting, our girls have had a few play dates.  The mom and I have also met for lunch - and even had another lovely mom of children with diabetes join us.

I love that my daughters have another friend who understands the need to test bg before eating and waits patiently while they do so.  I also love that I have an adult friend who can tell me stories about life on her own.  And I am more than happy to share that she is truly living a full, well-traveled and complete life as a wife and mother of three healthy and happy children.

Which is really one of the best gifts that I could hope to hear.

And for that, thank you diabetes monster.







 

Christmas Party (Combo Bolus Rocks!)

Our family recently attended a wonderful Christmas party given by a few of our dear friends.  This party was amazing with buffets in various rooms set according to theme... appetizers, entrees, beverages and my personal favorite, desserts.

And did I mention that the desserts buffet had a melted fountain of chocolate?  And with things to dip like potato chips, mini marshmallows, strawberries and pretzels?  Oh yes!  It did!  And yes, we tried it all. 

Back in the beginning of our arrival into type 1 diabetes land, this type of setting would have made have made me break out into a cold sweat and feel instantly nauseous. 

How could a parent safely let a child with type 1 diabetes eat without numerous doses of insulin?  I thought I had to grab a plate, measure food, carefully count carbs and then limit my child from eating anything else during the party.

And then I had to pretend to have fun while stressing over the fact that my child was not in the least bit satisfied with one small serving and was whining for more. 

In a nutshell, parties stunk. 

Somewhere along the way, I realized that unless we wanted to become hermits, I needed to get a handle on dealing with parties.  Since parties are part of life, really, I needed to learn to embrace LIFE.

At the time, I was doing a lot of reading on type 1 diabetes.  How in the world did other people manage?  One of my favorite books was written by Gary Scheinder, MS, CDE  and entitled "Think Like a Pancreas".  If you never get the opportunity to read his book, one of the most important and thought provoking ideas is right in the title... think like a pancreas. 

Without risking becoming too deep in thought, just thinking like a pancreas made a lot of sense.

Party food isn't eaten all at once, so why bolus only one time? 

If I just think like a pancreas, that one dose of insulin isn't really how my daughter's own pancreas would have handled the onslaught of carbohydrates. 

And how could we manage this problem in the real world? 

Enter in the magical Combo Bolus on our Animas Ping insulin pumps. 

A combo bolus allows the recipient to enter in a total amount of carbs and then dose a percentage over a set amount of time. 

Putting some numbers to this, I can provide a real-life example of the way this works in our family. 

My youngest daughter usually eats about 60 carbs for a meal.  At dinner time, she is at a ratio of 1 unit to every 15 carbs of insulin. 

To combo bolus her at the party we went to,  I applied 60 carbs of carbohydrates which equalled to 4 units of insulin.  Instead of giving her four units at once, I gave her a ratio of 1/2 of the insulin at the start of the bolus and 1/2 of the insulin at the end of the bolus, set in the pump for one hour later. 

And because it is an automatic process, once we entered it, we could just tuck the pump away and not have to bother with it again. 

Because she is 8, I was able to allow her a bit of freedom in counting her carbs and working her way up to the 60 total carbs.  As she my daughter, I knew that we wouldn't have a problem reaching the 60 (oh those yummy desserts) carbohydrates. 

She kept a running tab for the 60 carbs.  In our family, we usually start at one carb and work our way up to sixty, but I have met other families who start at 60 and count backwards.  To keep count, you can either trust your memory or another strategy is to make little tears in your napkin for every ten carbs eaten.  The nice thing is that a napkin can be folded up into your pocket and no one is any wiser of what you are doing.  One of my adult friend uses toothpicks.  She pockets the toothpicks and counts that way.  Whatever works. 

My oldest daughter loves to combo-bolus because she feels like it allows her to feel less bogged down with diabetes.  This is a HUGE concern of mine.  I want her to feel positive about managing her type 1 diabetes so that she doesn't one day (especially during her teenage rebellion years) decide that it is just easier to ignore diabetes. 

She also loves the way she feels.  Less spikes and higher numbers.  One of her favorite times to use the combo bolus is when she decides to eat pizza.  The slow release of carbs from the pizza is difficult to manage with the fast acting insulin.  Without a combo bolus the insulin is done working before the pizza is done fully digesting.

The end result of our party???  Well, the chocolate fountain was just wonderful!  Oh, and blood sugars were very, very good with a nice 159 when we got home.

The best part was the ability for our entire family to mingle and enjoy the moment without the diabetes monster taking over.

Cookie Party! (You Can Do It!)

Over here at the Naturally Sweet Sisters house, we are gearing up to start baking season.  This is the time when we make about ten different kinds of cookies from cut-out cookies to peanut butter kiss cookies. 

While the kitchen becomes an official disaster zone, our final product makes it so worth the mess of flour, butter and sugar everywhere.

It is just old-fashioned fun!

This a great time to figure out how to deal with the dozens of cookies that either you are baking or becoming the lucky recipient of.

Helpful Cookie Tips:

1.)  Recipe websites are popping up all over the Internet.  Some have carb count information already posted at the bottom of the recipe.  Be sure to double check the amount against your own calculations.  A few times, I have discovered inconsistencies that would surely have caused an "off" blood sugar later.

2.)  Keep a binder or a notebook with all of your favorite recipes.  After going through the work of calculating the carbohydrates in the recipe, be sure to write it down by total and per piece so that you can skip that step the next time.

3.)  Don't be shy!  If you are gifted cookies, ask your 'giftor' for a copy the recipe.  You don't even have to explain why.  I can guarantee that the person giving the cookies will be flattered that you liked them enough to ask.

4.)  If you exchange items in your recipe, consider the effect of what you are replacing it with.  For example, sometimes I exchange oil for applesauce in order to have a lower cholesterol product.  By doing so, I am increasing the amount of carbohydrates, which ultimately means more insulin.

5.)  Going to a cookie swap?  Once you get home, pull out your trusty Calorie King book for some examples of cookies that are similar in content.  Write everything down a list and tape to the top of the cookie container.  Keeping the carbs handy helps to reduce the amount of anxiety and stress and really, that is the most important tip.

Enjoy the moment.  The holiday season is seemingly never-ending, but once it is over, it is over.

Well, at least for 364 more days!



Friday Funnies - 12/16





 

12-15-09

Two years ago, our beautiful oldest daughter asked to be tested with her sister's blood sugar meter.

In less than sixty seconds, our world was irrevocably changed.

And that is that.

Because at the exact moment of knowing that both of our children now were facing type 1 diabetes, we realized that there was only one choice.

Our choice was only one... which was to pick ourselves up and make the best of every moment.

Our world is full of diabetes and we know we can't run away or hide from it.  We have to accept it's existence.  Even when days go terribly wrong or perfectly right, we are still living with diabetes.

In learning that she had been diagnosed with type 1, sometimes people would ask my oldest daughter if she could remember what it was like before diabetes came to be.  She was after all, 8 years old.  Plenty of time to remember a childhood without pokes and checks. 

She used to say "yes". Sometimes even referring to wondering what it was like for her younger sister who had been diagnosed as a toddler.  Although our oldest daughter had grown up with diabetes, she didn't really understand it until she, herself, was actually diagnosed.

I happened to be with her during the last time someone asked her that same question; Do you remember what it was like before you had diabetes?

Imagine my surprise when she simply said no.

"No."

"What?"  I asked surprised.

"No.  I used to know but now it is just foggy.  Should I remember?"

I thought about that for a few days.  Should she remember what it was like?  Does it matter?  Is it better that she forget life without diabetes?  Or should she try to remember so that she grows up with empathy and compassion for understanding others struggling with life change? 

And then with a hope that I dared only think of to myself... yes, you should know so that you understand how to re-enter life once a cure is found.

Again, there is no real answer for any of my questions.  It just is what it is.  Her memory is fading of life prior to diabetes and yet, she is still growing up into a lovely, beautiful, strong and smart young lady.  Diabetes or not, she is so much more than a diagnosis and I am sure that she will be the person of strength that others seek out for a hug or two. 

By choice, we are letting the memories fade and by choice, we are replacing them with new happy ones.

Two years later and all I see is one very amazing person.  I am so proud that she is my daughter.

The Domino Effect of Type 1 Diabetes

Something that I started to realize on early on was this sort of domino effect of having a child with type 1 diabetes has on the world.

"Oh, your child has diabetes?  Well, my aunt's cousin, who is twice removed, has a cat with diabetes too.  We have sooooo much in common!"

Or-

"Is that insulin?  I know all about it because yesterday I watched Dr. Oz and saw him talk about it and I ran into your neighbor who told me all about your family."

This probably isn't limited to diabetes.  I think people tend to try to connect with each other through commonalities. 

For example; if you like fishing, I might try to find something on fishing to share with you.

After mentioning fishing, I find that we have built a connection and now feel a bit closer to one another.  Maybe the next time we see each other we might smile and ask each other if we caught 'the big one' yet and share a couple more fish-tales.

Except for, having type 1 diabetes is not something that we do for fun.  It is not a hobby.  Type 1 diabetes is not limited to the weekends, the shopping mall or television. 

The reality is that this is a non-curable auto-immune disease and unless you have it or live it, you can't really make relatable small-talk.

Which is why I said this today.

"Is that so?  By the way, did I hear that you like fishing?  Hey, did you know that Bass Lake has a fish somewhere deep down in the bottom that is supposed to be ten feet long and weigh 1,000 lbs?  My cousin's brother's uncle just told me."

Reason #2: Sharing Supplies

This title really isn't clear.

Reason # 2:  Sharing supplies.

You might be thinking, "Reason for what?  What is this crazy lady posting about now?  Blog, blog, blog!"

Our youngest daughter had ballet class apx. 1 mile down the road from our house.  The class is a mere 45 minutes long and she always tests and eats a snack before we leave.  In her ballet bag is a test kit and fast acting snacks should she need to have a little extra glucose.

Ballet (unlike her high energy soccer practice) is about fluidity, flexibility and grace.  During the class, she practices positions, learns a bit of french and comes out feeling happy and relaxed. 

Today was a bit different.

Today was the last class before a two-week holiday vacation.

And so, of course, there was a celebration.

And so, of course, a celebration means food.

The beautiful ballerinas in their pastel leotards were given cookies with big brown, ooey and gooey chocolate chips.

Which was fine.

Except the cookies were distributed BEFORE starting ballet class

And...

our youngest daughter did not have her insulin pump because it was safely left on the kitchen counter at home.

Which leads me to Reason # 2:  Sharing supplies.

The second best part about Naturally Sweet Sisters is that our oldest daughter did have insulin.   Which meant that her younger sister could also have enough for a tiny bolus  to cover a cookie and still come out of class feeling happy and relaxed.

The irony is that those beautiful pink ballerinas became little brown spotted leopards when the class was over.  Chocolate chips and pink tights do not go hand in hand.

Want to know Reason # 1?

They will always have each other.

Changing with Change

A while back, one of our DOC families put together an innovative way to address the need for change in the world of type 1 diabetes.

The idea was to create a virtual wall of change through persons (children AND adults) with type 1 diabetes by gathering together pennies, nickels, dimes and quarters for donation to the Diabetes Research Institute.  But before sending in the money, to lay out the change in a way that shows how many years the person has been diagnosed with diabetes. 

Together, the pictures have been placed together on The PumpWear, Inc. blog site, forming a beautiful mosaic of real people dealing with type 1 diabetes.   The corresponding money is sent off to DRI for use in furthering diabetes research.  All details are included on the PumpWear website - which also, offers a variety of great products for diabetes!

As this is a special anniversary week for our family, we decided to participate too.

Here is the result:

If we do nothing and wait, change may never happen.

However, together, we may certainly make change.

12-11-06

And here we are.  Five years later. 

Today has been a thinking day for our entire family.

Youngest daughter, for whom this day is most personal, had a moment of teary eyes while discussing her stay in the hospital.  Even though she was just three-years old, she remembers with astonishing clarity, little details and moments that happened.  From the impromptu visit from several airline pilots to sampling her first taste of chili, she remembers it all.  And most of all, she remembers that there still is no cure.  So hitting a milestone like half a decade is a bit anti-climatic.  Maybe that is what brought out the tears most.

Oldest daughter reflected on the milestone like this... "I was sad when I saw my baby sister in the hospital.  It scared me because I didn't understand diabetes and I really did think she was going to die.  Isn't that funny?  Now I know.  She is OK.  She is still the best sister in the world."

And for my husband and I...

We woke up this morning and thought about it over our shared morning coffee. 

"Wow."

"Five years?" 

"It just doesn't seem possible."

After taking a few moments to sink in, we realized that the date is very real and so is the diabetes. 

While we do not have a cure, saying nothing has changed isn't correct either.

We are smarter.
We are tougher.
We are wiser.
We are more tired.
We are also more focused on the improvements in care than in actual cures. 

We are choosing to live in the now.

Which is really the most important part of having an anniversary as significant as this one.  Somewhere along our journey, we made the decision to focus on the moment of right now and no longer worry about the future or what happened in the past. 

We learned to say no.
We learned to put our kids first.
We learned to put our family first.
We learned to enjoy the little victories and are learning to let go of the small hurts.

We also decided to give a voice to dealing with diabetes.  We aren't going to let diabetes speak for us or decide what, when and where we will be.  We choose our life adventures and bring diabetes along for the ride.

As I didn't want to let this day slip by without doing any special (because really, it should be noted and remembered as this is part of our core foundation), we took our girls out for a special family date.  We went to a craft class and made little ornaments for our Christmas tree.  Each one has been dated and marked with a '5' to commemorate the moment. 

After decorating, I took a moment to admire the artwork that my girls had created. 

Beautiful and happy.

Which is exactly where we are five years later.