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!