A Diaversary to Celebrate!

Two years ago today, our lives forever changed.

My feelings leading up to this day, and afterwards, are emotionally conflicting.

I feel immeasurable sadness when I think about the trauma Kinsley, and our family, experienced after learning she had type one diabetes.   Those initial months were like a battlefield.  I felt like we were at war, literally.  It was so hard for the Kinster.  And, the grief you feel when learning your child will live with a chronic and potentially life-threatening disease for the rest of their life still takes my breath away.  It hurts, not gonna lie. And, please, don't tell me that I should be relieved that she doesn't have cancer!

But, on the flip side, I feel immeasurable gratitude.  Kinsley's A1C was higher than the highest detectable limit at Children's Hospital (they measure up to 14) and I have since learned that Kinsley's blood sugar was higher than some who never made it out of the hospital emergency room alive.  The Lord spared her life and for that, I am forever grateful.  Every time I hear of another loss in our community, I give thanks to the Lord for Kinsley and her health and well-being.  

Do you see why these emotions feel so conflicting?

Tonight we celebrated her second diaversary with dinner at Kinsley's favorite restaurant:  Teresa's Mexican Restaurant in Lakeville.  Then, we came home to what has now become our traditional diaversary cake.  Kaitlin was so cute and couldn't understand why we didn't sing happy birthday afterwards!  :)

We celebrate this special day because Kinsley's is a strong and courageous type one warrior.  She endures more in a month than some do in an entire lifetime.  She is poked, prodded, and pricked daily.  And, she is six!  She is a rockstar and she inspires me.

We remain hopeful for a cure, but we grow more intent for the medical community to develop advancements that minimize highs and lows and protects her from some of the long-term medical complications we hear all too much about.  There is a lot of amazing things out there that just need to be approved by the FDA and/or manufactured.  Just this week, the Dexcom 6 came out and rumor has it that is will work with T-Slim AND Omnipod to provide a closed-loop insulin delivery system.

We thank you for supporting our family.  After all the fanfare is over and the initial shock of this diagnosis wears off, there remains a family and a child fighting for life every day.  Your love, concern, and prayers mean the world to us.

Happy Diaversary, Kinsley!

Kinsley posing and Kaitlin ready to dig in (what a second, did she already dig in a bit)?

Love the Munsons!

Walking a Fine Line

Just when you think you've sorta figured out T1, you are thrown a curve ball that keeps you on your toes and wide awake at night.

Lately, I have felt like we are living in war zone...literally.  We've been up more than we were with a newborn baby and we are exhausted.  We love our Dexcom and it has saved Kinsley's life more than once, but its existence comes at a cost.

Kinsley's insulin needs have actually diminished as of late (more about that later) which means that we are battling lows a lot.  On Sunday night, Kinsley's blood sugar was dangerously low and she was swaying back and forth like a drunk.  It was 40!  

Thankfully, we use a Dexcom that alerts us of these lows but it has been beeping all....the....freakin'......time!  (Every time I hear a loud noise, I jolt!)  And, each time we are alerted, we are in panic mode (in our minds but try to appear calm and collected in front of the Kinster) as we try to increase her blood sugar to a more manageable number. 

So, while it wasn't along ago we increased her basal rates due to highs from a crazy growth spurt, we are now decreasing those basal rates to regain homeostasis - whatever homeostasis means for a type one diabetic!  It is a fine line that has us in quite a conundrum. 

Type one diabetes is a cruel disease.  It follows no rhyme or reason and it never plays nice.  While I have always been an unusually anxious person, walking this fine line to adequately balance her insulin needs has thrown me through a mental tailspin.  It is endlessly frustrating.

But, in spite of the difficulties, we keep on keeping on.  We have a battle to win and a little girl to protect.

Until a cure is found, we soldier on.

Drum Roll, Please!

This past week we spent the day at the University of Minnesota Discovery Clinic to meet with Kinsley's gastroenterologist.  Dr. Stumphy diagnosed Kinsley with Celiac Disease in late 2016 after we learned that her iGa and iGg numbers were higher than the highest detectable limits.  Shortly thereafter, Kinsley underwent an endoscopy where it was discovered that Kinsley had substantial damage to her small intestine due to the consumption of gluten.  She was just five years old!

So, yet another change for Kinsley as we embarked on a gluten free diet.  See, a gluten free diet for Kinsley is not a preference or even a sensitivity but a poison that will destroy her insides.  Consuming gluten is toxic to her body.  As we learned how dangerous gluten is to Kinsley's health, Andrew and I decided that our home would be gluten free.  We have maintained that stance, mostly, ever since.  The entire home is gluten free except a bread box in a separate location where Andrew's hot dog buns are stored!  Every meal made in our home is with gluten free ingredients.

Eliminating gluten and introducing insulin have been game changers for Kinsley's growth and development.  She is growing like a weed!  She is very tall for her age (nearly four feet and in the 50% percentile) and has gained 12 pounds (45 pounds and the 31st percentile) since diagnosis.  What a rockstar, right!

Our hard work has paid off though after receiving Kinsley's latest results.  Here we go:

Kinsley has finally rid her body of the antibodies activated when eating gluten.  I didn't know if we could EVER get it down this low, but we have!  There are so many to thank for these results.  We appreciate your care and concern for our daughter and her health.  It really means the world!

The

PS:  You can visit our JDRF page to donate to the 2018 JDRF Walk.  Or, better yet, join our team!  We need more walkers.  😊

Insulin IS the Miracle......For Now!

So much for posting regularly, right!

I can't believe it has been six months since my last post.  Life has been extremely busy with homeschooling, a new job, and decorating the new home.  How fast life flies, for sure.

I was recently watching a great video on Slate about the discovery of insulin, and I was reminded how fortunate Kinsley is to be alive at this time in history.  It wasn't long ago, relatively speaking, that individuals diagnosed with type one diabetes had a sure death sentence.  As in, 100%!  But, due to the many incremental discoveries of people much brighter than me over the course of centuries, insulin was discovered and has been saving lives ever since.

I am forever grateful for insulin as it is what keeps my sugar baby going day in and day out!  After Kinsley was just diagnosed, however, I was desperate to somehow fix Kinsley's pancreas and just have our "normal" back.  Insulin just wasn't good enough.  So, naturally, I scoured the internet and sought out any possible remedy that eliminated the need for Kinsley to need insulin.

One of many "remedy" examples:

Yes, friends, I thought rocks might "cure" type one diabetes.  Here is the back story on my hunt for rocks.  My handyman overheard me giving Kinsley insulin one day while he was working on the house and told me that we needed to get chromium healing rocks as quickly as possible.  He said that these rocks have the power cure type one diabetes, or at the very least, manage blood sugar.  Guess what?  The rocks did nothing.  Surprise, surprise!

Shortly after the rock fail, my nail technician explained that she follows a Christian healer who travels the globe healing people of their infirmities.  Of course,  I learned everything I could about this "healer" and was ready to drive Kinsley to Missouri for one of his healing revivals.  I was convinced!  But, guess what?  After further research, I discovered that this "healer" isn't really a healer at all but a con artist.

I guess I share these ridiculous stories, that I have since repented to the Lord for, because there are a lot of people out there who just wait for desperate and highly unintelligent people like me to buy into some of these scams to get ahead. It is despicable!

And, if that isn't bad enough, there are the well-intentioned, sweet people who come across a diet fad, elimination diet, therapy modality, and even the latest chocolate shake craze that convince them that type one diabetes can be healed.  And, of course, I need to subject Kinsley to it!

But, the very painful and difficult truth is that there is no magic bullet that eliminates Kinsley's need for insulin multiple times each day.  Her pancreas does NOT produce insulin.  It just doesn't.  I can't just muscle test Kinsley into producing insulin again.  And even if Kinsley was on a protein only diet, she would still.....need.......insulin - if even to maintain homeostasis.

It is dangerous to suggest that type one diabetes can be cured.  Families have actually withheld insulin convinced that an alternate treatment plan is possible and let me tell you, it never turns out well.  I am hopeful that a cure will be found in our lifetime.  That is what the emergency room doctor said, after all, so it must be right!  But, until then, Kinsley and all type one diabetics in the world need insulin, in varying amounts, each day.

Let us always remember that and be content with the miracle insulin is, for now!

Settling In.....

I always have good intentions but sometimes life just gets in the way!  It has been too long since I last posted but who ever thought moving would be so difficult?

Friends, moving is so stressful.  No matter how much you plan and how far in advance you pack, you will scramble to make it across that final line at the very end.

But.....it is totally worth it!

We are all settling in very nicely in our new home.  We love it and feel very blessed.  While we will likely have boxes to unpack for months to come, all the necessities (ie. doll houses and diabetes supplies) are easily accessible.

The girls love our new neighborhood and all the kids out and about.  It makes for busy days which is a great thing.  But, busy days plus the stress of moving has had its toll on Kinsley's body.  For nearly two weeks we had nightly battles with low blood sugars.

Low blood sugars have immediate, life-threatening implications.  If low blood sugars aren't corrected, things can go bad very quickly.

And so, for nearly two weeks, we had nightly battles with lows.  The battle was scary and recovery always took longer than I wanted, but eventually that arrow would move in the right direction and we could all breathe a collective sigh of relief.

What would I do without this amazing technology?

After several nights of crazy, we reduced her basal rates (continuous infusion of insulin) and for three nights now, friends, we've had no low blood sugar alarms all night.  Praise Jesus!  Of course, I still get up to check her Dex every time I go to the bathroom (so, you know, at least 10 times during the night) but we've been in the clear which means Kinsley can get a full night of sleep.

What six year old couldn't use a full night of sleep, right?

On another note, we are super excited for our very own cupboard for our bazillion diabetes supplies.

Check this out......

Christmas in summer for me!

In closing, I promise to be more active now that things have slowed down.  We hope you are enjoying the summer!

Soldier on, T1 families,

Kim

Rediscover this day...

When you parent a child with disabilities, there is so much mommy guilt.  

The list of my failures and shortcomings as it relates to acting as a human pancreas 24 hours a day, 7 days a week, and 365 days a year are long.  And, the guilt is compounded in direct relation to the action or inaction that caused the guilt in the first place!

No one prepared me, though,for the guilt I would experience as I learn to balance the medical needs of Kinsley while cultivate and grow in relationship with my second beautiful and precious daughter, Kaitlin.  

Kaitlin is the unsung hero, here, folks!

As our family manages this serious medical condition, we are often forced to take detours, pauses, mini-vacations, or whatever you want to call it from "life" all the time.    

All the while, Kaitlin is along for the ride.  And, she is the best and most loving companion for Kinsley.  Yesterday, pictures I took exactly a year ago popped up on my phone.  "Rediscover this day" was the title.  I wanted to cry.

It may not be obvious, initially, but these pictures depict what it was like every......single.......time... Kinsley needed an injection every day for months.  Kinsley would scream, hit, hide, and bargain.  It was beyond emotionally painful for us to inflict this pain on Kinsley, for her own good, no less.

Kaitlin was an observant and concerned sister throughout these daily occurrences.  Kaitlin would offer to take the shot for Kinsley.  Kaitlin would help Kinsley hide.  Kaitlin would hold Kinsley's hand.  Kaitlin would attempt, in her two year old speaking skills, to convince Kinsley to cooperate.

"It's okay Kinswey..........."

I am so proud of Kinsley and I thank the Lord all the time for helping her overcome such adversity this past year.  Kinsley is my T1 warrior and she is fierce.  But, I am equally as proud of Kaitlin and I don't tell her that often enough.  Kaitlin is just as forceful and just as strong.  

I love my Kaitlin Mae.  It is my hope and prayer that these complex and difficult experiences will develop, within Kaitlin, a certain empathy, cooperation, altruism, and maturity that no textbook or training class can ever possibly teach.  

And, in fact, I think it already has.

The Character Behind the Character

My Sensitive, Sweet, and Rather Silly Kinsley

You wouldn't know this by looking at Kinsley's picture above (on the left with a Maggie comparison, on the right 😊) but just hours before that picture was taken, Kinsley had a severe hypoglycemic episode.

It was such an exciting and joyous morning in the Munson household, too.  Kinsley and I had tirelessly worked on her "gift for the King" for our homeschool cooperative Christmas program.  Kinsley had practiced her lines (in Spanish) for nearly two months.  She was ready and so excited!

That morning, we were in a rush to get to church and prepare for the program.  We ate "on the go" and unbeknownst to me, Kinsley hadn't finished the breakfast she had been bolused for (given insulin).  Normally, I watch every bite she eats like a hawk (and mentally calculate the carbohydrate total in my head) in an attempt to prevent her blood sugar from rising or falling too fast.  

But, the second I arrived at church, my attention was diverted to program-related questions and when Kinsley grabbed my attention a bit later, I just assumed she had finished her breakfast.  

Well, she hadn't.  

Anyway, as we grew closer to the program, Kinsley's continuous glucose monitor (CGM) started to alert me that Kinsley's blood sugar was rapidly falling.  (Double arrows down which isn't good.)  In a matter of minutes, her blood sugar fell over 50 points.  And, at one point, her blood sugar read 58.  58!  That is dangerously low.

The next half hour was a blur.  I was trying to doctor her blood sugar up with copious amounts of carbohydrates and mentally determine if the program needed to go on without Kinsley's gift presentation.  I knew Kinsley would be devastated if I pulled her from the program but I suspected that Kinsley's blood sugar was falling not only from breakfast but also a bad case of the nerves.

By the time it was Kinsley's turn to share her gift, I decided to let her proceed.  Her blood sugar was in an acceptable range just moments before and my concern shifted to a rapid blood sugar rise due to a "rebound high."  All things considered, her presentation was perfect and I was so proud of her composure despite the invisible battle she was fighting just moments before.

She demonstrated, in that brief but brave moment, how amazingly strong and courageous she truly is.  To the audience, everything was normal though.  You wouldn't know that, moments before, Kinsley was on the verge of passing out.  

The entire way home from church, I cried, though.  Diabetes won that morning.  I felt so guilty for not being more attentive.  I felt sick thinking about alternate endings.  And, I left wondering if I made the wrong decision in allowing her to go up to the microphone and share her gift knowing that she was still recovering from a blood sugar of 58.

As I've learned, there is no use concentrating on these questions.  If I allowed myself to focus on these questions too long each day, I would be immobilized by fear.  

Within a few hours, Kinsley fully regained her strength and her blood sugar recovered.  She made that episode look so easy!  If that was me, I'd be in bed the rest of the day.  But, she went back to her happy- go-lucky self who has the most infectious laugh and sincere smile in the world.  She is my T1D warrior!

It is in these moments, I am reminded how fragile Kinsley is and how desperately we need a cure.   While we have come such a long way, we have so much further to go.  

Kinsley is silly.  She can be so sensitive.  And, she is so stinkin' sweet!  

She is the "character behind the character" and it is my hope that this series will delight children with type one diabetes for years to come!