December 12, 2013

Until There Is a Cure

"It's time to move beyond a mere offer of hope, it is now about delivering on a promise!"   
-Ed Damiano, PhD, Associate Professor of Biomedical Engineering at Boston University

At the Children With Diabetes Focus on Technology conference this past weekend, I had the opportunity to listen to Ed Damiano give an update on his research into building the Bionic Pancreas.  Along with his team at Boston University and Masachusetts General Hospital, Ed has developed a closed-loop bionic pancreas that uses continuous glucose monitoring along with a pump that will deliver both insulin (to lower the blood glucose) and glucagon (to raise blood glucose).  His goal is to have this bionic pancreas ready to go in just 44 months!  Just in time for his son to go off to college :)

Could this truly be a reality?

After we left the conference, my mind was spinning thinking about this bionic pancreas.  I was going over every word that I had heard over and over again.  But I had to get through the rest of the day.  Pack up our friends Wendy & Jason who came in for the conference, deliver them to the airport, switch into mommy gear and off to the basketball game with my peewee cheerleaders.  All the while, it never left my mind.  I had to work really hard to keep my emotions in check while I did my mommy duties.  Monday morning, all three kids were delivered to school and then I let my brain go there again.  I was home, alone, catching up on laundry...and bawling at the possibilities that lie ahead for my daughter.

It's through Children With Diabetes that I realize I'm not alone.  That we are not the only ones tormented with the burden that diabetes places on our child.  It was this CWD conference that restored my HOPE!  Ed Damiano is just like Keith and I.  (Ok, well HE is brilliant!, but I digress...)  What I mean is that he knows the same burden.  The burden that diabetes places upon his son...this is what motivates him.

I believe in him.

I got goosebumps when Ed began to speak at the closing keynote.  The first slide of his presentation said "Making Diabetes Management Disappear..."

He continued to explain how the bionic pancreas will work.  This technology does not require the person with diabetes to even know what their blood sugar is.  No counting carbs.  No adjusting basal rates.  The system makes decisions about how much insulin or glucagon should be given without the user's input.  It is completely autonomous.

Ed talked about the clinical trials.  Watch this amazing video about one of his out-patient trials.


He talked about results of these trials.  Amazing results!  In a 5 day experiment in adults with type 1 diabetes - walking around Boston not thinking about diabetes, they were able to achieve an average blood sugar of 131.  What was just as amazing to me was the fact that, in all 20 subjects, they experienced blood sugars below 60 less than 2% of the time.  BGs below 120 - 60% of the time.  And BGs below 180 close to 90% of the time.  This was only a five day period, but the predicted A1C for these folks would be 7.1%.  And remember, this was the bionic pancreas working autonomously.  They didn't have to think about diabetes at all!

I was already cheering him on at this point.  But, it was when he spoke about the emotional aspect of this technology, this is when the uncontrollable tears flowed for myself and Wendy (and many others as I looked around the room).  He said,
"It will be a whole different world for people who have been living with diabetes.  They will not take this for granted."
I encourage you to click these links and learn about the bionic pancreas.  I encourage you to follow the clinical trials and ask questions.  Years ago when I heard "artificial pancreas" talk, I blew it off.  It sounded like another empty promise of a cure.  I have now done a 180 in my thinking.  THIS is it!  This is a game changer for people living with diabetes.  It is NOT a cure.  But I believe until there is a cure, THIS will be the BEST option for my daughter.  It will "unburden" her life.  No, diabetes won't go away for her.  No, the need to be cautious won't go away.  No, the need to wear a pesky medical device to keep her alive won't be gone either.  But the day to day burden of managing diabetes will be taken off of her shoulders.  This "unburdening" is what makes me cry.

I want this for Ally.  I want her to experience this "unburdening of D."  

I believe in Ed Damiano!  I have hope in this research!

Listed below are a few links to resources about the bionic pancreas.


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  


3..2..1..GO BIONIC!







October 22, 2013

In Loving Memory of Shamae and Her Crazy, Happy Life!

This is an impossible post for me to write.  It feels impossible because I feel like I'm writing something that just can't be real.

Shamae passed away in her sleep.  I read those words on Sunday and have been trying to come to terms with it since.

Shamae and I first met online in early 2010 through a group of Dmoms.  It had been just over a year since Ally's diagnosis with Type 1 Diabetes.  I had spent the first year after diagnosis just getting by.  Shamae reached out to me.  She encouraged me to start a blog of my own.  She gave me courage and 2010 and ever since!

We continued to get to know each other through reading each other's blogs, written mostly about our families living with diabetes.  We connected because our daughters with type 1 diabetes were the same age.  Syd and Ally became pen pals and it changed the way that Ally looked at diabetes.  She felt less alone.  Funny, because that's exactly what my friendship with Shamae did for me.  I felt less alone.

 My very first blog post Celebrate You, was dedicated to Shamae.  She played a major role in moving me from the overwhelmingness of that first year to learning to live again, just in a different way.

I am inserting an excerpt from that first blog post because I was speaking specifically about Shamae.

 I want to celebrate that so many of you have reached out to me, welcoming me into this group of people who understand what our life is like. I want to celebrate that some of you forced me, ok...encouraged me to write this blog. I think it will help.

In fact, it already has. You see, I was only introduced to you and your blogs a couple of weeks ago. Once I started, I couldn't stop reading them. As I read some of them, I felt like you were writing the thoughts right out of my head. Others were compelling, some were shocking! I have smiled, laughed and cried at your blogs.

Ally noticed that I couldn't pry myself away from the computer and she asked me what I was reading. I explained that I was reading about other families who have children with Type 1 Diabetes. She was interested. "Mommy, can I read it too?" So I let her write a note to a couple of girls her age. She received a note back from both of them and is ecstatic! (Thank you ladies!) She wants to know all about them. She made me print their notes and she ran to find an old binder that she could keep them in. They were so special to her that she would not let me punch holes in them, so we had to find page protectors! She is scheduled to be Star of the Week in her 1st grade class in a week or so. She has been waiting for her turn for a long time and has about 20 "special" things that she wants to take in to share. This afternoon she told me that her MOST special thing is now her binder with her "new friends" in it and she can't wait to take it in to share with her class. :)

So, again, let me CELEBRATE you! Connecting with others who understand is already making a difference for me...and even better, for Ally!!

Shamae, thank you for sharing your life with us.  You were an inspiration in many ways.  I admire the way you lived your crazy, happy life.  I admire your passion for being a mother and a wife.  I remember that you once wrote "Being a mom is so fulfilling."  I admire your dedication to educating others about Type 1 Diabetes...your dedication to finding a cure...your dedication to making a better outcome for Syd and all those with Type 1 D.  I will always cherish the "Why We Do It" video that you made because I know how much love you put into making that.  (Video has a permanent home on the bottom of my blog!)  Thank you for being supportive to me and lifting me up when I needed it most.  You will always have a special place in my heart.      

A friend of mine saw my post on facebook and said, "You know I can't help but believe that God has a bigger plan for Shamae.  What if she can do more on the other side?"  I believe that Shamae has earned her right to fly among the angels...because to me she was an angel on earth.  I bet she even asked to have a blue circle on her angel wings :)

Shamae made an impact on so many lives.  I believe she will continue to do that.  I miss her presence here on earth already, but I will never forget her!

Join me today in once again, Celebrating Shamae and her Crazy, Happy Life!


August 7, 2013

A 10 year old's review of Superstar Dreams

As you probably know, Lilly Diabetes and Disney partnered to create a series of books about kids living with diabetes.  In case you have not seen this series, or if you'd like to see the newest books added to this collection, visit Lilly and Disney's Type 1 Diabetes Book Shelf page.

While at the Children With Diabetes, Friends For Life conference in July, we were lucky enough to receive a couple of the new books in the series.  Ally very quickly read Superstar Dreams and wanted to share her review with you.

Superstar Dreams


This was a GREAT book. It was about a girl named Morgan who was newly diagnosed with type 1 diabetes and had trouble making friends at her new school.

 When she finally met Lizzy and those 2 became very good friends, Lizzy’s BFF, Naomi, suddenly didn’t like her because she thought that she was trying to steal her friend away from her.

Her new friend has a sleepover birthday and she can’t decide whether to go or not because she isn’t sure she feels comfortable going because of her diabetes.

  Eventually everything worked out and Lizzy, Morgan, and Naomi all became VERY, VERY, VERY, good friends.

            How I can relate to that

 She doesn’t check her sugar at night but her lows are a lot worse than mine and she feels them when she is asleep.  In the book it says that Morgan feels light-headed and it feels so bad. I check my blood sugar at night no matter what.

I would love to go to a sleepover but my Mom would be the one who wouldn’t feel comfortable. I’d feel comfortable because I know how to manage my diabetes well and I have lots of good friends comfortable with it who would help me with my lows.

Love to tell you more but don’t want to spill the beans. :)  If you want to know more, then you may like to read the book yourself. ;D

I was going to add my two cents here, but I think I will save it for a post of my own!  I will translate one line, for the record!  "I check my blood sugar at night no matter what."  Actually means, "Mom or Dad check my blood sugar every night!  :)

(To read Lilly & Disney's summary of this book, click HERE.)

We are grateful to Lilly Diabetes and Disney for giving us our very own copies of a couple of these books.  If you have not been able to get your hands on any of these books, check out where they will soon be adding digital versions of some of these titles.

You may also like to visit for tips on family life with type 1 diabetes.


May 18, 2013

Saturday Diabetes Art

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!
This was easy.  Ally made this in Art class at school this year!  Do you recognize anything??

This has been my post for Day #6 of Diabetes Blog Week.   Check out some other amazing D-Art here: Diabetes Art - Saturday 5/18.


May 16, 2013

Accomplishments Big and Small

We don’t always realize it, but each one of us has come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

Yes, we've come a long way since Ally was diagnosed with Type 1 Diabetes on February 10, 2009.

Let's Celebrate!  I don't ever expect us to be perfect when it comes to managing D.  But I certainly think that it is important to celebrate the small stuff. 

Ally celebrated the day that her CGM arrived in the mail.

I celebrated on the day that Ally returned from a week at Diabetes Camp!

We all celebrate a beautiful flat line on her CGM graph.

(Wendy likes to celebrate 123!)
 While I celebrate every time that our cgm and blood glucose meter match!

We celebrate the birthday of Sir Frederick Banting, the man who discovered insulin.

 In our world, this "small stuff" is pretty outstanding!

Our BIG accomplishment of this year has been writing and implementing Ally's 504 Plan at school.

I have talked about how wonderful our nurses and staff have been to work with many times.  Honestly, until this year, Ally's needs were being met even without the 504 plan.  I have known for a while that I should have one in place for her and my goal has always been to have one before she went to the Intermediate building (6th grade) where she would have multiple teachers.  After our frustrating go at Standardized Testing earlier this year, I knew that it was time to initiate the 504 process.  I am very happy with the 504 that we developed along with her teachers and school staff.  By the end of year state testing, I was like "Bring it!" :) 

This has been my post for Day #4 of Diabetes Blog Week.   Please take a minute to check out the other great posts about  Accomplishments Big and Small -Thursday 5/16.


May 15, 2013


Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

There are a few BIG moments that hog my memories when I think about the time since diabetes has been a part of our family.

Ally's diagnosis day is one of those days that plays over and over again in my mind.  I can remember so many of the details, from the look in her eyes down to the exact words spoken by the care givers in the hospital.

Several months later when Ally confided in me that, when she heard the pediatrician tell me that Ally had diabetes, she had thought she was going to die.  During the car ride from the pediatricians office to the hospital on her diagnosis day, she started talking about my uncle who had passed away a few months before that.  I remember thinking that she was talking out of her head!  Suddenly, after she confided in me months later, I realized that she was talking about him because she thought she too was going to die.  "Die-abetes."  Why hadn't that crossed my mind?  That is one of my least favorite moments as a parent.  I am so so sad that those thoughts ever entered her mind.  And so sad that it took me months to know that she thought this so that I could make her feel better :(  Still brings me to tears thinking about it.

The day that Ally started pumping.  It was a day of much anticipation and excitement.  No more shots!!  Woohoo!  But I remember the gut wrenching feeling of seeing the insulin pump attached to my 6 year old, thinking about how this was a forever kind of thing.  She will be attached to this thing 24/7...indefinitely.  As a parent, that was a hard day for me.

The day that we dropped her off at Diabetes another day that I will never forget!

And although those BIG, not incredibly happy moments do hog my memories, we continue making memories every day. 

Last summer when we had the opportunity to attend Friends for Life, I experienced my happiest D moment yet!  Moments after checking into the hotel, green bracelets (indicating T1) all around, Ally untucked her insulin pump and displayed it proudly for all to see.  That moment when she found "same".

Ally loved meeting her longtime T1 penpal in person at FFL!

Someday, BIG moments like this one will overshadow those BIG moments from the past.

This has been my post for Day #3 of Diabetes Blog Week.   Now go read what other bloggers had to say about Memories - Wednesday 5/15 .


May 14, 2013

We, The Undersigned

Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

I would petition the powers that be!  Lol!  Because I don't really know who makes these decisions.  (I guess if I'm going to change it, I'd better find out who really does make these decisions! :)

My petition would be that glucagon be removed from the list of medications that my child is not allowed to carry on her person in school.  That glucagon not be on a list of medications that can only be administered by certain individuals. 

Emergency medication must be accessible at all times.   (I read that somewhere, sorry can't remember where I saw that.)   Yet, students, nor teachers are allowed to carry glucagon.   It must be housed in the health clinic.  (Side note: We have gotten around this with a note of medical necessity from our doctor.)   But why does this policy exist in the first place?   It's a life-saving drug that is used in an emergency! 

We are talking about a life saving medication here! (Oh, did I already say that?)  Glucagon is a hormone that is naturally produced in the pancreas.  It is used when a person is experiencing severe hypoglycemia.  If it is needed, it is needed right now!  Not in five minutes when someone can locate the appropriate person, who then has to unlock it from the designated medication cabinet.  Like RIGHT NOW!

I'm not sure how much of this is state law driven and how much is school district policy.  So, please don't quote me on this.  But here goes my best understanding of the glucagon situation (at least in our school district, here in the state of Ohio).

Ohio Revised Code 3313.713 requires training for employees who administer prescription medications.  This medication administration training must be conducted by a licensed health professional.  It also states that the school board's policy may provide that certain drugs or types of drugs shall not be administered.

I understand that medication around children is not to be taken lightly.  I understand the school's liability and that proper precautions and documentation is necessary.  But here's the thing.  We are talking about glucagon.  Glucagon is a life-saving hormone, that is naturally produced by the pancreas!  (There, I said it AGAIN!)

Our previous school nurse (who is awesome, by the way!), is now district nurse for our school system.  She went through special training to become a "trainer for Medication Administration training."  That wordiness means that she is now allowed to train other school staff to administer certain medications.  From speaking with her, I believe that glucagon is on that list.  She is planning to include glucagon training in the beginning of the year staff training (typically includes epipen training and the like).

Why do we have to jump through so many hoops?  I am thrilled that glucagon administration will be shared with our entire staff so that, if it is ever needed, anyone will be allowed to administer it, and at least be somewhat familiar with it.  But, I consider myself one of the lucky ones.  We have an amazing district nurse who gets it!  If it were not for her, I am not certain that this would be happening.  And I'm thinking that other districts (in our state anyway) may not be so lucky.

If my child needs glucagon, I pray that it is within an arms reach and that someone - anyone - will be willing to administer it!
Oh how fun it is to participate in Diabetes Blog Week!  Now go read what other bloggers had to say about We, The Undersigned - Tuesday 5/14.


May 13, 2013

Share and Don't Share

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see? 

First of all, I'd like to say that our endo is outstanding!  I love that she really does try to get the full picture in the few minutes that we see her each quarter.  She also makes herself available to us anytime that we need something in between those visits.  Granted, it is just a few minutes every three months!  So, to all of the members of our health care team, I say...

If you could be a fly on the wall: 

~You would see that we try to keep up with our log book, really we do!

~I wish you could see the hurt in her eyes when we do site changes and insert new cgm sensors, so that you would understand why the numbing cream is still necessary.

~You would certainly notice the thoughtful planning that goes into her meals and snacks, so that you wouldn't question the random lows or after meal spikes.  Sometimes I just don't have an answer!

~I want you to see how hard she plays outside with her friends, so that you will understand why I take baby steps when adjusting her basal rates.

~I know that you would hear how many times the school nurse calls me to help make judgement calls about bolusing for carbs, or treating lows, or treating highs, or the special surprise birthday treat, etc.

Looking at blood sugar numbers on paper or a cgm graph (as awesome as it is to have), never tells the whole story!

On the other hand, I hope that, if you were a fly on my wall, you had at least one eye closed (how many eyes does a fly have anyway?):

~That time when I was just too tired to do a set change, so we let it go for one more day.

~When we forgot to bolus her for a meal.

~I don't dare tell you that we let her run a little high overnight that night because we just couldn't get out of bed to do the correction, even though the MySentry is staring back at me with a big 200!

Believe me, I'm embarrassed to admit any of these things.  But life happens.  And one thing that I know about D is that we can do everything right and still have days where it seems impossible.  Sometimes it has to be ok for us to not be perfect!

This has been my submission for Day 1 of Diabetes Blog Week.  Now go read what other bloggers had to say about  Share and Don’t Share - Monday 5/13.


May 12, 2013

Happy More Than a D Mom Day!

I'm laying in bed, pretending to still be asleep, listening to the hustle and bustle going on outside my room.  I hear, "Dad, can we give Mommy her presents this morning?"  Followed by the rustling of gift bags coming down the stairs.   I hear them planning a surprise breakfast for me.  I hear one little one whispering to "close Mommy's bedroom door so she won't hear us."  Lexi asks if she can make Mommy a card.  The others remind her that she already made something for mommy, pointing to the adorable handprint card and bookmark that she made for me at preschool.  "Yeah, but I already gave those to Mommy.  Can I make another card?"

I'm going to stay here in bed a little longer and soak it in :)  I can hear the love!  All of that stuff is the best Mother's Day gift ever!  But Shhh...I didn't hear a thing!

Do you ever dream, Forrest, of who you wanna be?  Forrest:  Who I'm gonna be?  Aren't I gonna be me? Jenny:  You'll always be you.  Just another kind of you.  You know?    (from Forrest Gump movie)

When Hallie invited me to join her Mother's Day marathon of blogging about "More Than a D Mom," I thought of this quote from Forrest Gump.  I decided to join her and the other wonderful D Moms that have gone before me in this blogging series.

I will always be me. Just another kind of me.
I like that!
For Mother's Day, I'd like to give myself a gift.  It's a reminder that, while D seems to consume my thoughts most days (Wendy said it best here!), it should not consume my life.  It should not be who I am

At Friends For Life conference last summer, one of the things that the awesome PWDs taught Ally was that she could do anything, even with diabetes.  And in one of my favorite blog posts ever, a guest post from Sara, she wrote a letter to Ally telling her to remember that diabetes does not define her.

So, my Mother's Day gift to myself is to rewrite my personal definition of ME.  I think I've found it...

I will always be me.   Just another kind of me.

That is the perfect evolving definition!

It's important to remember where I came from.  As well as the journey I have taken to the kind of me I am today.  (It's ok to laugh at me!  I sure did when I found some of these pictures!  And sorry for the poor quality, I'm older than digital photos!!)

I am a daughter.

I am a sister.

I am a wife.

I am a mother.

I am a friend.
I am a soccer player.
(Well, I played soccer for close to 20 years anyway!  Couldn't run to save my life today). 
I am a grandaughter.  I am a teacher.  I love being involved in service projects.  I like to cook.   I love chocolate!!  I prefer a relaxing vacation over an active sight-seeing one.   I am a stay at home mom.   I love to snuggle with my girls.  I enjoy ironing - I know, crazy right?  I write lists.  If I have accomplished something not on my list, I write it in so that I may cross it off.   I love a good party.  I love laughing with friends.   I like craft projects.
The top row are pictures from high school.  The bottom left was a picture from my first year of teaching.  My grandma and me are in the middle.  And the bottom right picture is from the day that I met Keith!! 
 All of these things have made me the kind of me I am today.
And we all know how my definition of me changed on February 10, 2009.  The day that I became a D Mom. 

I will always be me.   Just another kind of me.
I am a D Mom...and so much more!

This "More Than a D Mom" series has been brought to you courtesy of Hallie.  Check out Hallie's post, along with these other awesome friends - Meri, Lora, Wendy, Tracy, Donna, Heather and Nicole, who are all so much more than dMoms to me!


Happy Mother's Day to all of the wonderful Mother's and D Moms out there! 

P.S.  Here is the extra card that Lexi made for me today :)  Notice the bags under my eyes??  Lol!


March 7, 2013

Angel Wings Too Soon

My heart hurts for the family of 13 year old Mark Deary, who died from Type 1 Diabetes without even knowing he had it.

According to ABC channel 13 WHAM, he "was sent home from school on Thursday with what appeared to be a stomach bug.  By Sunday, Mark Deary had lapsed into a coma and died."

It pains me so much to know that, if someone recognized the symptoms of Type 1 Diabetes, he may not have received his angel wings too soon.

I don't blame anyone specifically, I didn't know.

When Ally was diagnosed with Type 1 Diabetes, I had no idea that extreme thirst, frequent urination, drowsiness, increased appetite, sudden weight loss, sudden vision changes, sugar in the urine, fruity odor on the breath, or heavy or labored breathing were symptoms of Type 1 Diabetes.  I didn't know that Type 1 Diabetes can mimic other illnesses, like the flu.  I knew something was wrong, but diabetes did not even enter my mind.  Nor did I know how serious the disease was or how quickly it could take the life of someone who went untreated.

I have since heard story after story of children who were sent back home from the doctor with a diagnosis of "the flu" or "a possible UTI", and by the grace of GOD had a parent who just knew it had to be something more.  I have also heard of many sweet children who were misdiagnosed and sadly died before receiving the proper treatment. 

A simple urine test can check a child for diabetes.  Why aren't urine samples a part of all children's annual physicals?  Parents, please request finger sticks and urine samples.  You have nothing to lose by checking, but EVERYTHING to lose by missing a diagnosis of type 1 diabetes because of skipping these simple tests.

Please share the Warning Signs of Type 1 Diabetes with all of your loved ones!  I didn't know.  The Kuehl Family didn't know.  The family of Mark Deary didn't know. 

I have written about the Warning Signs before.  Please read about them again.  And again.  And even again.  And then pass them on.

Lets Take Control of Diabetes Now where I shared the story of the Kuehl family who lost their precious baby because his T1D diagnosis was missed.

Ok, so I freaked out! and checked my non-D kid's sugar, because now I know the symptoms of T1D all too well.

In Educate and Re-Educate I shared how Ally's diagnosis could have easily been missed...or too late!  Once the flu like symptoms are present, Type 1 Diabetes moves quickly.  Don't waste time!  Ask for the simple tests in case the medical professional doesn't think of it!

Rest in peace sweet Angel!


February 21, 2013

Standardized Testing

This momma is stressed out!  Standardized testing can be stressful for kids, but don't forget about the moms!  Especially, moms of children with type 1 diabetes.

Ally has standardized testing for 2 hours and 15 minutes each morning this week.  We do all the things to prepare for a testing week that the other students in her class do.  We have a good dinner the night before, get a good nights rest, start off with a good breakfast, sharpen new pencils.  But all that is not enough for someone with type 1 diabetes.

You will note that I emphasized morning above.  Many think testing in the morning is a good thing.  But for us  morning is a difficult time for managing blood sugars because we are dealing with the dawn phenomenon. (Our body secretes hormones in the pre-dawn hours which cause our bodies to be more insulin resistant. Your pancreas would naturally release a little more insulin if it were a properly functioning pancreas. We have to adjust Ally's basal rate to deliver a little more insulin during these hours.) It has taken some hard work (and often continues to be a challenge) to manage Ally's morning blood sugars while avoiding a drastic spike in blood sugar after eating breakfast.

Another thing we have to consider when going into a testing week is how Ally's high and low blood sugars will effect her ability to perform on the tests.  Cognitive ability is most definitely impaired when your blood sugar is out of range.  These are just two small excerpts that I found to support this:

From The Effects of Diabetes on the Brain by Barb Nefer, eHow Contributor
Short-Term Effects of Hyperglycemia (High Blood Sugar): A University of Virginia study showed that hyperglycemia in diabetics can slow down their brain function and reduce their cognition. Their verbal ability is impaired, as is the ability to perform simple tasks. The issue resolves itself when the proper blood sugar level is restored.

And from Symptoms of Acute Hypoglycemia  by Stephanie Ellen, eHow Contributor
(Low Blood Sugar)
 Excitability:  Heart palpitations, racing heartbeat, anxiety, tremors and shaking can occur when blood sugar drops.

Altered Mental States:  When blood sugar is low, there isn't enough fuel to allow the brain to function properly. Appearing drunk, staring into space, lethargy and refusing to talk are all signs of acute hypoglycemia that may mimic signs of stroke, epilepsy or a brain aneurysm.

Psychiatric Problems:   Agitation, combativeness and confusion are relatively common in acute hypoglycemia. According to the Department of Psychiatry at the Nassau University medical center, seven percent of patients who are seen in the E.R. for psychiatric problems actually have acute hypoglycemia as the root cause of their ailments.
So, you can see why it would be so important for someone with type 1 diabetes to not only get a good night's sleep and eat a good breakfast, but also to maintain blood sugars in range during testing.  Easier said than done.

Ally is able to make-up the sections of the test that she misses if her BG (Blood Glucose) is out of testing range, however, once she starts a section of the test she may not leave the room or make it up if she is unable to finish it.  The plan was to check her BG before testing begins and in between sections of the test.  That way if she was out of range, she would not even start that section and would be able to make it up at another time.  Her CGM (Continuous Glucose Monitor) has also been very cooperative and is very close to actual BG.  So, we are relying on the CGM once the actual test has begun.  If she is feeling low, she will check her CGM and, based on a little cheat sheet that we made together, will pop a glucose tab or two if she is trending down.  (Please note, we do not usually make a practice of treating blood sugar based on CGM readings alone.  We typically test with blood glucose meter first.  However, since this standardized testing time cannot be stopped, we have to work within those guidelines.)  And, of course, if CGM says less than 80, she must STOP testing and check with blood glucose meter - and forfeit the remainder of that test section.  It is what it is.

Testing Day 1:  Her AWESOME teacher sent me emails in between each section of the test letting me know what her BG was and what, if anything, they did to maintain that.  First BG check before testing, 183.  I'll take that!  She had some IOB from breakfast, so no correction and they told her to sip on her water. :)  At the first break, she was 143, let her eat a quick snack while class stretched and took restroom break, then on to the third section of the test.  She came into lunch at a perfect 120, just after finishing up all the testing.  Day 1= Success!

Testing Day 2:  She went to bed at 130 the night before.  That is always a bonus, because if she wakes up at a good number then her breakfast spike is manageable.  But as the night went on, I would wake and glance over at the MySentry only to find her trending up.  Darn it.  I checked her BG, gave a correction dose of insulin and dozed off for a couple more hours.  Only to wake to the same or higher number in 200s.  Grr.  I checked, corrected, set temp basal and went back to sleep.  By the next time I woke up to see the number still trending up, I decided to do a site change.  I knew that having her BG start off at a good place was critical for testing day.  New reservoir of insulin, new site, correction dose, temp basal back to sleep for 2 hours until my alarm goes off, confident that her number will be in range by then.  WRONG!  :(  She woke up in mid 200s.  Not a good way to start off a day of testing.  Sure enough, I get a call just before the first testing section begins...she's 350 and being sent to clinic to hang out while rest of class begins testing.  I'm so frustrated!!  I finally decided to open a new bottle of insulin (even though the opened bottle was only 18 days old) and go over to school to change out her reservoir again.  It took so long for her to come down into range that she missed the whole morning of testing.  Poor girl sat in the school clinic for over 2 hours doing busy work.   

Same dinner. Same breakfast. New site. Bad insulin?? Stress??  Has the ear infection from last week not cleared up yet?  All these things are running through my brain at a speed of about 500 mph.  How can one day run so smoothly and the next feel like such a failure?  I give up win today!

Here's hoping I'm up for the battle tomorrow and the next 2 testing days.  (Oh yeah, and now the make-up test day too!)


February 12, 2013

Turning Four

We've got turning four on our minds.  Lexi will be turning four in a few months.

But that's not all that's turning four.

This week  Diabetes turned Four in our house too!
Ally, just before diagnosis                                Ally & her 4 year old D
            age 5                                                                     age 9
For the first time, I did not focus my thoughts on Ally's diagnosis day.  Instead, I spent the day thinking about how proud I am for how far we've come!  We all let Ally know that we are proud of her and that she inspires us every day.  And of course, we ate ice cream!

As I remember with anticipation about the characteristics of 4 year olds, I reflect on what our 4 year old diabetes looks like.

Four year olds feel good about things that they know how to do.  They are beginning to gain self-confidence. 

We have much more confidence in ourselves and in our diabetes decision making four years later.

Four year olds are willing to try new adventures.

We are beginning to let Ally and her 4 year old D take new adventures without us.

Four year olds still need to be watched closely as they are capable of some interesting things when you turn your head!

We've come a long way in four years, but I'm still not willing to turn my head on D...and probably won't for quite some time!

Our 4 Year Old Diabetes means that our doctor kit includes pretend blood sugar meters, lancets and test strips.  

Our dress up closet includes insulin pump pouches.

Everyone gets excited about trying out a new blood glucose meter...even our non-D kiddos!

We have all made lifelong friends.

We accessorize with bags of all kinds!

The characters in our picture books even check each other's blood sugar!  (At least that is Lexi's interpretation of what this dragonfly is doing to the dog's ear :)
And Four Year Old Diabetes meant that Ally rode on the
Girl Scout float in the Christmas parade (without me).

4 Year Old Diabetes has become a blended member of our family.

It hasn't always been that way though!  Read my thoughts about our 3 Year Old Diabetes here: Three Years Already?  Or Ally's thougths on our 2 Year Old Diabetes here: Two Years Ago Today.  And read a little about our diagnosis day here: Educate and Re-Educate.


January 19, 2013

Out of Line or On Point?

I was reading the article High Blood Glucose What's Behind the Symptoms? on Diabetes Self Management and I, once again, began blogging in my head.  (I'm going to try to get it out here this time though, because my brain is kind of crowded these days.) 

It took me back to shortly after Ally's diagnosis.  Our lives had been turned upside down and we were on information overload.  We were learning the difference in high blood glucose and low blood glucose.  Heck, we even had to learn what blood glucose meant - for real!

We were at a follow up appointment at the endocrinologist's office.  The nurse educator stopped in to continue our diabetes education.  After all, the 8 hour crash course we received in the hospital at diagnosis couldn't possibly cover all things diabetes.  She asked me if I knew about neuropathy.  I did not appreciate her concern on that day.  I was five months pregnant, brand new to diabetes, tired, overwhelmed, sad...I responded, "Yes, I have read about it, but honestly I have blocked it out.  That's the way I'm coping for now, blocking out all the bad things."  She did not like my response.  In fact, she responded in a downright rude way.

Maybe I deserved it.  Maybe she just wanted to make sure that I understood that there are serious complications of diabetes.  Maybe she didn't like my attitude.  Who knows!  But what I do know is that she was not wrong for trying to educate us about the long term complications of diabetes.  I think that, in the moment, I thought that I did not need to worry about these complications.  I think that I was sure those things would never happen to us, or at least I didn't need to think about them for many years.  I was wrong.

You see, high blood glucose causes permanent damage to your body.  It doesn't happen when you are a certain age.  It happens slowly over time.  But each and every high blood glucose contributes to these complications.  The nurse educator was not out of line for "putting me in my place".  She was giving us the knowledge and tools to keep those complications at bay for as long as possible.  She was making sure that we understood the importance of keeping blood sugars in control.  She was on point, and for that, I am grateful.


January 17, 2013

Hello? Is this thing on?

I have been blogging in my head for months now.  Trust me when I tell you it is some great stuff!  Only problem is that you couldn't hear it could you?  (I think the microphone was on mute.)
Well, you are lucky enough to hear what's on my mind today!  Insurance!  I am so grateful for our health insurance, really, I am!!  But sometimes it causes me undo stress.  Why does it have to be so confusing?  I don't get that.
Our insurance has not changed.  Not even the copay amount, which seems to have gone up each of the past several years.  Nothing changed.  They sent us a new card, actually 5 new cards!  Yep, I have to carry a separate card for each individual member of our family.  And each of these cards now has a new ID number.  Nothing about our insurance changed.  However, because the ID number changed, EVERY SINGLE doctor, pharmacy, medical supply company, etc, etc, has to re-enter all of the insurance information.  I keep getting calls saying that our insurance is not valid.  It is, they just need the new number.
This week, I get a call from the medical supply company that ships Ally's insulin pump supplies along with her CGM sensors.  They need the new info before they can ship her supplies this month.  No problem.  I had to call back as I had missed their call.  After waiting 40 minutes on hold, I spoke with a customer service individual, who had to transfer me to another department because there are sensors on her order...and those are "specialty" items!  After waiting another 40 minutes, I was irritated knowing that they only needed my daughter's new ID number.  Pink cheeks. 
The kind woman tells me that we are all set.  "How would you like to cover your copay?  It will be $6 hundred...blah...blah...blah."  Sorry, I didn't hear anything after the words six hundred!  She said that our insurance pays 20%.  Wait!  Our insurance pays 90%!  Pinker cheeks.
I told her not to process the order because that cannot be correct.  I immediately called our insurance company and waited another 20 minutes on hold.  She confirmed that nothing had changed on our insurance and her supplies were definitely covered at 90%.  After another call to supply company and another 40 minutes of waiting, I finally got it all resolved.  Same exact copay that I had been paying for the past year plus her deductible.  So basically, I spent over 2 hours unnecessarily.  Red cheeks!
I realize this is not the insurance company's fault.  Well, maybe if they hadn't changed those silly ID numbers!  It is just so frustrating!!!
This little incident has me thinking about Ally's future.  Funny how so many things have me going there in my head...she's only 9 for goodness sakes!  As I sat there, in my flush-faced frustration, I thought to myself Ally will have to deal with this for her whole life.  And then I began thinking about how I will prepare her for this part of managing her diabetes, so that one day when she does have to handle these insurance incidents, she will handle it with more grace than I did! 
So, when I figure out how to understand insurance and get organized with it, I will most definitely begin a plan for preparing Ally for this stuff!  The only notes I've made in my notebook to future Ally are 1) Know your insurance!  Know your deductables, and plan ahead for those - they will surprise you every January if you don't.  Know your copays.  Know what is covered, and at what %;  2) Pay attention!  Pay attention to the EOBs.  Pay attention to the bills that come.  and 3) Be organized.
That's all I've got!
In the meantime, feel free to share your ideas for the future Ally about staying on top of insurance :) 



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