Three Years Sweet and Strong

Third Diaversary:  Three Years Sweet and Strong

February 20, 2015

I can vividly remember the day (s) all my children were born, and I can tell each of them their birth stories.  I can vividly remember the day our lives were forever changed when the pediatrician called me and said, “You were right.  Get Aiden to the hospital right now!”  It’s Diabetes’ birth story. Even typing it, three years later, I still get chills and tears well up in my eyes. 

Three years ago today, Diabetes officially invaded our lives. I can recall vividly the fear, helplessness, despair, worry, and pain of that day.  It still makes me cry. Although it’s now routine, no two days are the same. … it’s sort of like my job in Labor & Delivery.  Most days are fine; some days are great; some days just plain SUCK!  I’ve learned a tremendous amount over the past three years, and I know I’m light years away from knowing nearly enough.

Three years ago today, we were completely lost and devastated.  In three years, we have had approximately 292 pump site changes, 8760 finger sticks, 1532 insulin shots, one million carbs counted, countless late and long nights, and an infinite amount of skin rashes.  Three years ago, I only knew the basics to keep my son alive.  Through research, reading, information-sharing and sheer trial-and-error, I know enough to teach Aiden to care for himself.  I know enough to give Mr. Diabetes one hell of a fight, but he still sucker punches me now and then and doesn’t play fair. Over this course of time, I have learned enough and am involved enough to be recognized and asked to help others. Three years ago, I would have laughed at you if you told me this is where I would be now.

This disease is crappy.  Each “diaversary”, I cry when he is out of my sight; I die a little inside to be reminded how long we’ve had to deal with this.  But in front of the kid, we’re positive.  We celebrate Aiden’s life with Diabetes. I’m so proud of my Aiden, so proud to be his Mommy, and so proud that I still get to hold my baby every day.  He has grown tremendously physically and emotionally, and he’s on top of his Diabetes care. I set a standard on year One, now a celebration is expected.  So, today we celebrate.  We’re going to celebrate that Aiden has not been re-hospitalized with complications. We’re going to celebrate that he has been so big and brave in accepting his diagnosis. We’re going to celebrate how much we’ve learned.  We’re going to celebrate that it’s not worse (although it could be so much better).  We’re going to celebrate that we live in a day and time where treatment is available and a cure is on the horizon. Aiden easily asks 176 questions per hours, but I am so thankful to be able to hear each and every one, because the alternative sucks!  And, through the tears, we’re going to celebrate that my baby is still alive to live a full life!

.

Rhonda  

Year One:  http://twotoosweet.blogspot.com/2013_02_01_archive.html and http://twotoosweet.blogspot.com/2013_08_01_archive.html

Year Two:  http://twotoosweet.blogspot.com/2014/02/two-years-sweet-and-strong.html

CAKE

Cake

February 1, 2015

Spoiler Alert:  I’m going to talk a bit about the movie, Cake.  I don’t think I’ll ruin anything, but you’ve been warned.  You can always return to read this after you’ve watched the movie, although I don’t think I’m going to take away from the movie with what I say.  Moving on….

So, yesterday, Memaw took the kiddos, and my hubby and I spent our much-coveted time alone watching a movie and having a big lunch.  He chose the last movie; this time, I chose CAKE.  I absolutely adore Jennifer Aniston.  Brad Pitt totally stepped down when he left her for Angelina Jolie, but I digress.  I think Jennifer Aniston is a great actress, and I was eager to see her in a serious role.  All I knew about the movie was that it was a story about a woman addicted to pain pills.

Beautiful Ms. Aniston as Claire Bennett in CAKE

At times, the movie was a bit slow, but I feel it was necessary to demonstrate the despondency of the main character’s life.  In the movie, Claire Bennett was a high-functioning lawyer with a husband and a child.  She experiences a tragic accident that left her scarred, in chronic pain, and addicted to pain pills.  To boot, her son was killed in the accident, which precipitated Claire’s fall.  Physical and emotional pain completely did her in.  In a moment, her life completely fell apart.  I knew watching, I was Claire, sans the tragic event that caused her spiral into darkness.  Only one degree of separation.

Now, wait..don’t stage an intervention or anything.  I’m not hooked on alcohol or pain pills.  I don’t have chronic pain.  More so, I could see how someone seemingly so put together and strong could be so easily devastatingly taken down.  I equate it to Jenga.

My solid sturdy life

Claire was all put together, but someone removed one critical Jenga block and made her entire world, her whole tower, come tumbling down. Like Claire’s life, my life is a pretty solid tower.  I have a good family, decent kids, great husband, and we comfortably take care of ourselves.  However, what’s built me up are critical blocks.  Misplacing one can shake the whole tower.  And, it’s happened to me at times in my life.  Five Bad D’s have been the culprits that have moved blocks and caused my whole tower, my whole life, to wobble. Death. Divorce. Depression.  Deceit.  Diabetes. 

One critical block remains in place

 Somehow, some way, each time, I’ve been able to make the shaking stop and re-solidified my tower. That one critical block was left in place.  I credit having a loving husband, supportive parents, great friends, soothing Bon Jovi, my kids…and probably just some sheer pig-headed stubbornness for bringing me up when I’ve been down.

In the most seemingly solid Jenga tower, there’s always ONE brick that makes the entire tower topple. As with most mothers, the hugest part of my existence surrounds protecting the health, life, and safety of my children.  It’s on my mind every minute of every day.  Keeping them safe and happy is paramount to my existence, and it’s the one critical Jenga block that holds this tower completely together.  If even one was taken from me, my holding block would be gone, and I would topple into a pile of rubble.  No longer would my life look like a solid tower, but instead would look like a pile of blocks, no resemblance to the tower it once was.  I put myself in her shoes, and suddenly, I could see how I could become Claire Bennett.

I did not judge Claire.  I saw myself.  If I was a betting woman, I would bet on the fact that I would fall apart, too.  Lying in bed.  Searching for a reason to exist.  Trying to numb the pain.

And, that, ladies and gentlemen, is one of the many reasons I fight so hard and do what I do to manage my boys’ Diabetes.  Mr. Diabetes is the primary enemy trying to knock that block out of place.  One wrong move, and He wins…and I am Claire.  So when I talk too much; I am too tired: I am too eager; Ask too much; I am too aggressive....I'm keeping my Jenga block in place.

Pushing to keep my block in place while Diabetes pushes back

As I watched the movie, watched her cope with her physical and emotional pain, I just cried.  Perfect one day, destroyed the next. Rubble.  A life in shambles. I can only imagine, and I hope I never have to know for sure.  I may appear strong, but even Super Mom has her Kryptonite. 

So, watch the movie.  Tell me what you think.  Please don’t say, “Well, you have other children to live for, blah blah blah”.  I’m aware of that.  My point: I don’t know that I would be any different than Claire, and that really struck a chord close to my heart and soul.  Next time you see someone self-medicating their pain, be sympathetic not judgmental.

Rhonda

No Finish Line

No Finish Line

January 26, 2015

I had big hopes this time last year.  I was going to get fit! Diabetes had taken all He was going to take from me in 2013!   I was going to get back on track and return to the shape I was when I was at my finest…late 2010!  (Late 2010 was about 14 months before Diabetes decided to crash the party).  It was time to take charge!

The road to hell is paved with good intentions, and that’s basically what happened to me.  I tried. I meant well.  Work stress.  Tired from managing Diabetes.  Other drama I don’t care to discuss. Getting and keeping people healthy is exhausting.  Fatigue and life got in the way! But, instead of shaping up and losing a bit of body fat, I found more.  15 pounds to be precise.  I’ve never been this heavy outside of pregnancy in my life!  In the grand scheme of things, I realize it’s not too bad, but for me, this is wicked fat!

So, again in 2015, I have a mission.  I want to lose what I found and get in shape for our fall 15^th anniversary trip!  It CAN be done!

I am working hard at making myself go to the gym.  I have my gym trips planned, and I got a treadmill for Christmas to get a few extra steps in.  I have a new puppy to walk.  Last week, I was doing some cardio at the gym, cursing my mother and Jesus while I climbed the never-ending stairs!  I was feeling quite sorry for myself, and I started thinking.  You know…this is bull!  Why can’t we work hard to get to a shape we’re happy with, press a button, and then it just stays there.  Why does it require constant work? 

As I continued the pity party, it dawned on me.  Working out is not really much different from managing Diabetes.  I can be in tip-top shape, but I still have to watch what I consume and make sure I’m changing up workouts and exercising regularly in order to maintain. 

Well, Mr. Diabetes requires the same perseverance.  It’s a marathon with no finish line.  Ever.  Every day, I have to watch what the boys eat.  Every day I have to consider and adjust insulin rates given their meal, growth, season, activity level, stress level, etc.  Each day I have to monitor them closely in my quest for the coveted Hemoglobin A1C in the 6’s.  What?  Why are you laughing?

Just like a number on the scale (or calipers) and how I feel tells me I’m doing great with my own body, that A1C tells me I’m doing good battling Mr. Diabetes and keeping a steady pace in the Diabetes marathon.  You see, I have to.  The only finish line is death, and I don’t plan to see that in my boys while I’m still breathing.  Working out, I’ll never see the finish line.  The only way I’ll see a finish line in either race is if I give up and quit.  Quitting my fitness regime yields bad health and perhaps obesity for me.  Not an option.  Giving up on the constant vigilance that Diabetes demands yields bad health, complications or even death for my boys.  Again, not an option.

So, pity party over.  This is what I have to do.  Nothing good comes easy.  I’m going to make myself get back to my very attainable goal weight and shape…and maintain. When I have a bad day, I’ll start again the next day.

I’m going to continue to work hard, learn more, and be diligent with my boys’ care in the quest to keep them healthy.  When we have a bad day, we’ll make adjustments and start over!  I'm going to love the journey to help them learn to care for themselves and raise $ for those who can expedite better treatments and a cure! And maybe one day, I’ll see that A1C in the 6’s.  *Stop snickering*

Such is my life.

Rhonda

Tip of the Iceberg

Tip of the Iceberg

November 25, 2014

Type One Diabetes is like an iceberg; people do not see what is going on beneath the surface just to stay afloat.

I was inspired by this photo.  First off, icebergs totally freak me out; Diabetes freaks me out at times, too, and I could not think of a more fitting analogy.  T1D does not look like much above the surface, but underneath is a massive complex disease that requires constant vigilance to stay afloat.  Faltering leads to the iceberg breaking or sinking.

10th birthday,  Oct 2014

What you see when you look at my cute boys is only the tip of the iceberg.  Two little boys who, from the outside, are seemingly perfect and healthy.  Two beautiful boys who are funny, witty, and smart.  Two little dudes who make good grades and are classroom leaders.  Two little men who want to be doctors when they grow up. Two little guys who do not have one functioning pancreatic beta cell between them.

What you see on the outside is only the tip of the iceberg.  They look so good because of what goes on underneath.  In order to keep the iceberg afloat, a tremendous amount of work, worry, blood, sweat and tears occurs under the surface.

Under the surface is a Dad who takes full duty when Mommy is away.  He handles insulin dosing, pump changes, and monitoring with a side of fatigue and worry.  He works hard to analyze the available medical coverage so we can obtain all the latest gadgets possible to keep the tip of this iceberg afloat and majestic.  Under it all is a Dad who loves his little clones and spends the majority of his annual bonus in healthcare spending and a chunk of his paycheck bi-monthly so we can take care of ourselves. 

Mommy and Daddy Pancreas at the JDRF One Walk, 2014

Under the surface is a Mother who is worn to her core with worry, analysis, late and long nights, and fear. She has to put her own care and needs on the back-burner for the sake of all of her kids and is aging exponentially form the unrelenting fatigue. Under it all is a Mommy who still gets choked up when she remembers the day she heard, “Get him to the hospital now!” and "You've got another one!".

Under the tip of that iceberg is a load of math, voodoo, science, sorcery, and luck.  Every morsel of food that is consumed must be measured and considered.  How many carbs does it contain? How many fat or protein grams? How will this impact his sugar now?  Later?  Does he need insulin for it?  How much? Every. Single. Bite.  Nothing gets zero consideration.

Yep, that's me..with bigger boobs, trying to mix the right potion to make it all go away

Beneath the exterior are the gadgets we use to help make their complicated little lives just a little easier. An insulin pump to deliver insulin constantly (basal) to keep his organs working AND when needed for food (bolus).  An insulin pump that has to be changed every two to three days and requires a biting STAB for insertion. A device that is taped to their terribly sensitive skin.

Asa, forgetting he has an insulin pump on his right arm, Dexcom on his left

Also attached to their sensitive skin is their Dexcom CGM (Continuous Glucose Monitor).  This is a tool only to help us monitor rising and falling glucose levels.  Synced with NightScout, it wakes us in the night to alert us if something is wrong…in addition to the several times per night we wake up on our own and look at the screen.  Dexcom is a tool only.  We still have to stay up at times.  We still have to use our brains to process all the information.

On a rare "quiet" night, we still wake up multiple times to check

Under the iceberg’s peak are two home glucose meter systems (complete with meter, alcohol prep pads, strips and lancets) that are used 4-10 times per day to poke a tiny hole in the tips of their fingers, draw out blood, and give us a glucose measurement for the moment…this moment only.  It changes minute to minute.

Below the surface are two tired parents, two humans functioning as someone else’s organ, two brains that have to put it all together.  Every meal. Every day.  24/7. No vacations or reprieves.  Someone is always thinking.  What is his sugar? What is he eating? How many carbs? Dose the insulin based on the preceding three questions.  Watch and wait. Unexpected and predicted changes happen daily because Mr. Diabetes does not play fair.  What works today may fail tomorrow. Levels are impacted by stress, activity, age of the pump site, age of the insulin, color of his underwear.  Some days are good and it all works.  Some days make zero sense.  Diabetes does not play by the rules; He runs his own agenda.  It’s baffling at times.

Under the surface are siblings who care and who have to be on the lookout for their baby brothers and grandparents who work hard to help. Beneath it all are school teachers, staff and nurses who have to step outside of their comfort zones, with fear, and help two little boys stay healthy and safe while maintaining a piece of their normalcy and childhood.

Under the surface are quarterly venipunctures and Endocrinologist visits, $ . Annual (and as-needed) visits to the Pediatrician and Ophthalmologist to monitor for problems and keep them healthy, $. Beneath it all is a Momma Bear who will lose her marbles if you bring your “simple cold” cooties around her vulnerable babies, because simple for you can mean pain, complications, and hospitalizations for them, $.

Under the surface, despite it all, is a Mommy Pancreas who is so proud of these tough smart little boys and who is so grateful to be able to hold them and hug them every day.  Below the surface is a Mommy who is grateful to watch them thrive and grow, listen to their corny jokes, and referee their fights.  Underneath it all is a Mommy who is both proud and saddened by how much they know about their disease already.  Under the surface is a Mommy who can’t fix it and who would give her life to keep this iceberg afloat so that all outsiders see is the tip… two beautiful, smart, funny and otherwise healthy boys.

Rhonda

Another Gray Sprouted

Another gray sprouted

November 10, 2014

Another gray hair sprouted and another year off my life.  Because clearly I didn't have enough.

Yesterday, we picked the boys up from my mother-in-law’s house where they had spent the night.  Quite often, we find their sugars a bit high after being spoiled by Memaw.  (They deserve to be kids, deserve to be spoiled by grandparents, so we just deal with it).   However, when I glanced at the Dexcoms (Continuous Glucose Monitors), the last reading showed the glucoses levels quite normal.  It had not detected the glucose level of the boys in a few minutes however because they were out-of-range, so there really was no telling what the current glucose was.

Asa & Aiden were outside playing and were tickled pink to see their Daddy’s new truck. Activity and excitement can drive a normal glucose level down.  Or up…depending on the day, barometric pressure, last meal, and color of their socks.   (I know…that makes it simple, right?)  Regardless, I told Aiden to go inside and gather his belongings and get his shoes on.

A few minutes later, I walked inside to check on them, and all I saw were feet and legs laying in the entry way.  Dead-like.  Motionless.  Passed-out like.  My instant thought was, “Oh CRAP!  He passed out!  Where’s his stuff?  Where’s the Glucagon?”  I called his name as I approached him and he didn’t respond. When I rounded the corner, I saw the little turkey quickly close his eyes.  He was faking!

What was he doing?  Being a boy.  Pulling a trick on his Mommy…or Daddy…or brother…or grandparents…whomever was first to arrive.  Unfortunately, it was me.  He scared the life out of me and I was less than impressed. So thankful he was ok and playing, but now ready to kill him!

Proud Mommy moment…in a tone louder than usual (emphatic but not yelling), I told him he could pass out if his sugar was low, and that’s what I thought had happened.  Told him he scared me to death.  He apologized.  No more passing out jokes or playing dead allowed as long as Diabetes is a barnacle in our lives!

Drop-kicking him wasn't an option. So, clutching my chest, I went back outside and told my husband we were going to have to give Aiden up for adoption lest he kill me!  When I told him what I saw when I went in the house, his eyes about bugged out of his head.  So, yeah, my reaction was legitimate.  I think Jerry would’ve had heart failure, too.

Needless to say, I don’t think I’m going to make the “live to 100” goal I’ve had forever.  Diabetes and my kids are making sure of that by regularly depriving me of sleep and taking years off of my life in a single moment. At this rate, I should’ve died last week.

On the way home, I stopped and bought a new bottle of hair color to mask the new gray hair I sprouted.  As long as I have spunky little boys and Diabetes, I'll keep Miss Clairol in business.

Rhonda

Epic 4-0

Epic Bday Weekend

I’m a sucker for birthdays.  I love to make someone feel special, and I love a good celebration.  I wanted my 40^th to be big time!  Not because I’m a selfish brat, but….Because, life has kicked me down the past couple of years, and because…aren’t we supposed to be grown-up after 40?  I wanted to send my thirties off in style! I was not disappointed.  My birthDAY turned practically into my birthday week thanks to some cool co-workers, friends, and the Man.

I worked Tuesday night, and when I went to check on my co-workers in other areas, I babysat in the nursery so the nursery nurses could take care of stuff.  Usually they’re quite quick, back in 10 minutes or so.  10 minutes passed.  I called out to ask someone a question and they weren’t “available” to talk to me.  5 more minutes passed and the one of the nursery nurses returned but thought of something else to do, so she ran back out.  Don’t get me wrong, I don’t mind helping anyone, but after 20 minutes, I started wondering, WTF?  WHERE IS ANNA?  I called around to find her but nobody knew where she was and one person giggled at me.  Huh?  What’s so funny? When I left the nursery, I found my co-workers had decorated the break room and stocked it with yummy healthy food and pumpkin stuff! 

Work Birthday party

They REALLY surprised me!  In the past, I have seen someone carrying something in suspiciously, but not this time!  Back story…they forbade Anna, who is usually very efficient and fast, from returning to the nursery until they were done.  I was held hostage!

My friend Melissa messaged me and told me she was coming to pick me up on Thursday.  How to dress.  What time.  That’s all I got.  She arrived with mischief in her eyes.  She took me to a restaurant where we waited patiently for others to arrive. Because of the restaurant, I guessed who one attendee would be, but I really didn’t know who else was coming.  After a few minutes, 3 more co-worker friends arrived, bearing balloons, gifts and wine.  We were set!  I was quite surprised and delighted.  My “Pool Crew” all came out to celebrate with me! 

The Pool Crew

I knew my husband was making plans for me on Saturday.  I wanted NO details at all!  I did tell him that my birthday wasn’t complete without time with him, and initially we thought we would have a private date on Friday, but we moved it, due to Diabetes and babysitting issues, for the next weekend.  I was very happy with that given we had a plan!

Friday was my actual birthday.  Present #1 I requested:  Sleep.  I slept in, ran some errands, got a pedicure and manicure, then I watched a marathon of Parenthood.  Basically, I was quiet and did whatever I wanted to do, and it was fantastic!  My big boys had plans, so when the little boys and the Man got home, we had a small family dinner and brownies!

Small family dinner with brownies

Saturday.  The Big Day!  After working hard for months to convince me he didn’t give a crap, Jerry pulled together an amazing night for me!  We slept in a bit, and I got up and ran errands.  He told me to be ready by 4pm, so I was mostly ready by 3:15pm.  I sat around in undergarments and a robe only when my first friend arrived!  So, I had to dress in a hustle!  Birthday surprise:  The first guest was my friend who is ALWAYS late!

The rest of my crew (didn’t know who all was coming) arrived just ahead of a limo.  So. Fun.  The limo was stocked with adult beverages, and we took a long ride to a dinner location.  I felt like an infant riding backwards in her car seat because I could only see life after it had already passed by. Jerry sent us to a fancy steakhouse, very upscale, that I had never been to before.  I think he forgot who some of my friends are because immediately, the silliness and noise started!  We were having a ball, complete with dares and pranks. 

Limo crew!

The face a guy made when I went and kept his wife’s seat warm while she used the restroom was priceless!  He backed away from me like I had Ebola!  Anyone who looked like they had a stick up their butts was forced to come and take a photo with me and smile!  The Wine “Somalia” didn’t like that I asked her, “Somalia?  Like pirates, Africa, and AIDS?”  Whatever.  Touted herself as  a wine expert who doesn’t drink wine.  How does that even work?

To make it even funnier, towards the end of the evening, a manager-looking lady thanked us so dearly for our patronage and then politely asked us to leave.  CRAP!  We were ruining the atmosphere of the other patrons.  Well, I know when I’m wrong, so I was like, “Pack it up girls!  We’ve been kicked out!” Long story short, we weren’t kicked out and she didn’t even work there!  They pulled a fast one on me and I FELL FOR IT!

Funny prank, great joke!

Upon leaving the restaurant, I was blindfolded.  Oh crap.  After arriving at our next destination, I had to pee SO badly!  I begged them to take me first to the restroom.  I am not graceful so I got out of the car slowly and was led inside.  Someone took my hands and placed them on themselves right as my mask was removed.  I was led to rub down some hard body at La Bare!  Freakin’ hilarious!  I screamed, and said, “I have kids your age!”  Felt a bit pedophilish.  Found our VIP table.  Hit the stalls. Now, I can think.

Holy cow!

Well, what happens at La Bare stays at La Bare….mostly.  Probably the funniest story was when a dancer grabbed my friend and my heads, pulled them back, then accidentally conked them together.  It was supposed to be sexy, but we wound up being “head-bangers” instead!  Apparently I have an eye socket of steel because she had a knot!  The poor guy was mortified, but I let him make it up to me with a lap dance.  I’m a giver like that. 

I’ve never been to a male strip show.  First time at 40!  Obviously, it’s a different vibe than when men go see women strip.  Girls are there to have fun.  Wasn’t a big fan of being touched or touching, but nobody gauged my eyes out when I got married! I love me some pretty men! They had to make me touch!  All the dancers were nice looking, but there were no blondes…I’m a sucker for blondes.  I did have to give a couple of obligatory tips to the guy who danced to Bon Jovi, one who danced to Bryan Adams, and the soldier who served in Iraq and Afghanistan.  For real, though…I have to support our troops. Again, I’m a giver like that.

After we left the club, the plan was for the limo to bring us home.   Remember, I’ll get my man-date next weekend.  However, the blindfold was slapped back on me, and we stopped very soon. WHAT?  We did not make it home from Dallas to Crowley THAT FAST.  I was again led out of the limo, posed for some pictures, and guided by the hand somewhere.  It’s a miracle I didn’t trip and fall.

When the mask was removed, I was in a nice hotel suite and my man was waiting for me!  BAM!  How’s that for the perfect end to the night!?  Ladies don’t kiss and tell, but I’ll assure you, it was perfect.

Surprise!  Your man is waiting!

On Sunday, we had our October family birthday party.  I try to get the family all together once a month to eat and visit, so this was the perfect time.  Just like usual, we captured most October birthdays (there are 7).  My daughter had made the MOST PERFECT cake for me!  It was such a nice top off to a great birthday week/weekend.

Most perfect Birthday cake ever!

Mind you, I’m not a complete brat.  I don’t expect this level of celebration annually.  But, this was a big one. This one was important.  And, my husband pulled out all the stops.  He clearly is one of the most secure dudes on the planet because he doesn’t blink over my JBJ love, and he arranged for my VIP treatment at La Bare! He worked so hard to pull my friends together and plan it all so I would have a perfect night, and it worked! He knows me like the back of his hand and he knew what would entertain me the most and make me the happiest!  He rocks!  It could have only been better if JBJ himself got on stage!  Of course, I may not have survived that.

Sunday night, Diabetes apparently was FED UP with me not paying any attention to Him.  So, both boys were wicked high from 9pm on.  Extra insulin only kept them steady (at a too high level) instead of bringing them back down to normal.  I fell asleep by 9pm, and I was awakened three times by 10pm.From them on, I was awakened at least every hour or two.  Diabetes is a demanding brat! 

With all the crap I deal with in my life, this was a much needed break!  I thought very little of Diabetes while I was out!

A newer friend who went along with us gave me the sweetest compliment that I think caps this blog off well:  I love your friends. They are so fun and they dote on you when you're not around. I think that's true friendship and proof of how awesome you are. So grateful for the invite. It was indeed epic!!!

Thanks to everyone, especially My Man, who made turning 40 painless!  I’m usually good with words but words cannot express how truly grateful I am and how amazing you guys made me feel! 

LOVE this guy!

Rhonda

REM is Over-rated

REM is Over-rated

October 11, 2014

Any parent of a T1D child can tell you, sleep often comes at a premium.  A typical night for me used to involve checking the boys’ glucose levels at their bedtime and again at my bedtime.  Depending on those results, the cycle of the moon, what they ate for dinner, and the color of their underwear, I would determine if and when to check them again throughout the night.  Typically, I woke up at least once to use the restroom at which time I would go ahead and check on them.  Often times, I was forced to set an alarm for every 1.5-3 hours to check on them.  It’s almost like we’re in a perpetual newborn period, waking up every couple of hours, sans the newborn crying.  That’s replaced by Mommy tears.

Perhaps someone could argue this is or was overkill, however, too many times, I caught a crazy high or a dangerous unexplained low….a low that could have killed them.  So, their tiny lives are in our hands; we’ll do whatever it takes to keep them safe.  “Dead in Bed” is a rare but real and scary phenomenon.  Simply put, your body cannot live if there is not enough glucose in the blood stream, thus if a low went undetected during sleep and continued to drop, the T1D kid could die.  I don’t wish that on anyone, and I don’t think any of my family or friends want to find me rocking in a corner, sucking my thumb as I pluck my hairs out one by one…. Yeah, that’s pretty much what I think would happen if something happened to one of my babies.

Look at those faces!  Do you blame me?!

Recently, we began using the Dexcom Continuous Glucose Monitoring (CGM) system.  Unfortunately, the range of the CGM to the actual boy (receiver to transmitter) was too far away at night between our bedrooms, thus it was essentially useless to us to monitor the boys easily at night.  Well, unless I wanted to move into the living room on a permanent basis or put these nearly 10-year-old boys back in cribs at the foot of my bed.  Don’t think I didn’t consider it.

When computer geeks’ kids get T1D, they develop cool programming to make the Dexcom CGM readings feed over the net.  Some banded together and created Night Scout. Long story short, I looked it up and put Jerry on a mission to make it happen.  He tossed a few options my way…Options, technology and verbage that was WAY over my head.  My answer, “I want to be able to roll over at night and see their sugars so I know they’re ok”.  He made it happen. 

Much to my chagrin, every night does NOT look like this!

All that background for this:  The CGM and Night Scout has been a fantastic, albeit imperfect, solution to help us get a few more winks at night.  It’s so refreshing to be awakened by an alarm if someone is too high or too low or to roll over, see all is ok, then snuggle back up to the man and fall back asleep.

(My Mom fell in love with it when she stayed over with the boys while we took a short vacation.  And, I worried about them less knowing an alarm would wake her up if necessary.)

As Diabetes would have it, He still demands attention now and then.  Some nights, the alarm is going off like crazy which means I have to wake up and make the mouse cooperate with my confused fumbling hand to silence the alarm.  Afterwards I have to check them and intervene.  Fortunately, that is the exception, not the rule.

Last night was an exception.  After a busy day at the Zoo, where Asa went low for 30 minutes (He was 51 after 25 grams of carbs and 20 minutes; he got a "free" ice cream which was fine with him!), we had a heck of a night with Aiden.  He was high around 9-10pm, so I gave him insulin to bring his glucose level back into range (“correction insulin”). 

Around midnight, the alarming started.  63 and dropping. I gave him a juice box which he sucked down in his sleep.  Asa was 93, so I gave him half a juice box just for good measure lest I be up in an hour or two doing the same thing for him.

An hour later, I snapped awake to make sure his level had risen well on the monitor.  Good.  Dozed back off.  An hour after that, repeat of the first scenario.  66 and falling.  Another juice box. 

About the time I dozed back off, Jerry snapped awake and saw the low number, which woke me up and I assured him I’d already intervened. He did that twice during the night.

 (Side note:  Since the CGM monitors the glucose level in the interstitial fluid between cells, it doesn’t reflect a rise or fall quite as fast as blood.  Thus, the monitor won’t show the rise in the first 15 minutes like the blood does, so I wait 30-60 mins).

An hour later, both boys were steady.  By this time, it was 4 am.  At 0530, the alarm went off again.  55 and dropping.  Knowing I had to rise for work in 30 minutes, I got up.  This time the carb of choice was chocolate milk.  He showed steady around 115 by the time I got out of the shower. 

As one may have deduced, I was basically awakened every hour from midnight to 6 am either by an audible alarm, by my Mommy paranoia who needed to see that things were ok, or by my husband’s startle and shake.  There’s really no solid explanation as to why Aiden couldn’t keep his sugar up overnight.  Diabetes often defies logic.  That said, it must have been related to the level of exercise we had at the Zoo. Or, it could have been too much correction.  Or, the color of his shirt.  Who knows for sure?

Dreams?  Who dreams?  What is REM sleep again?  Who needs it?  Diabetes thinks it’s over-rated.

Yes, there are WAY worse diseases.  Yes, it could be worse.  But, we sure could use a cure so 

Mommies and Daddies like me can rest easy and not worry about our babies’ lives.  Every. Night.

Support us for a cure today!

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Rhonda