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Sugar Bugs

/ Renee J / 2 Comments

Lancets and Test Strips

They say a picture is worth a thousand words, but looking at this picture, I could tell you thousands.

These lancets and test strips are from our sharps container at home—all from glucose checks—and this isn’t even half of what we’ve used over the last few months.

To me, these are:

  • Hundreds of pokes on the sweetest baby toes you’ve ever seen.
  • Scared moments when his sugar dropped too low.
  • Late nights and early mornings, woken by his crying.
  • CGM calibrations, testing how new foods affected his sugar.
  • Moments of panic when he was throwing up, and we didn’t know how long we had before he’d become hypo—when we were checking every 30 minutes or less, all while rushing through Houston traffic to the Texas Medical Center.

But mostly—thankfully—these were our reassurance that he was okay.

This is what our lives have revolved around for the last nine months.

Checking for “Sugar Bugs”

Somewhere along the way, we started calling it “checking for Sugar Bugs.”

No idea why—one of us said it, and it stuck.

“How many Sugar Bugs are we going to find? Let’s catch lots and lots of them! Yay! We found 92!”

Seems a little silly, but we’re trying to make it fun, to make it positive.

He doesn’t cry anymore when the lancet pierces his skin.
He doesn’t wake up when we poke him at night.
His big toes are so callused now that sometimes, getting a single drop of blood is a challenge.

I remember when we first started this journey—his tiny toes red with bruises, worn from too many pokes.wehavehihopes toes

A Cure Fast & A Mother’s Hope

Now, here we are—just days away from the start of our Cure Fast at Texas Children’s.

I am so anxious.

We’ve slowly reduced his Diazoxide intake from 9.54mg/kg to 8.18mg/kg.

So far, he’s doing really well. A few numbers near 70, but for the most part, he’s hanging around 120.

I pray that’s a good sign.

I’m scared to be disappointed because no matter how many times I tell myself “Don’t get your hopes up”—they’re up.

After all, I’m a mom with HI Hopes.

It’s who I am.

I want this so badly for him.
For us.

The next two weeks will be a rollercoaster of emotions, but I want to know.
It’s the not knowing that makes me feel crazy.

If he has to live with HI longer—or even for the rest of his life—we’re going to manage.
I know that.

But I pray he doesn’t have to.

Dreaming of a Life Without HI

One day, I hope that when I look at that pile of lancets and test strips, the words that come to mind are in past tense.

That they become things we used to have to do.

That they turn into distant memories, replaced by new ones in a life free of Hyperinsulinism.

How sweet that life could be.

I don’t know if that’s what’s in store for us.

But I’m holding that dream close to my heart—and never letting go.

Welcome to Holland

/ Renee J / Leave a comment

WelcomeIn the last several months, I’ve come across an essay titled “Welcome to Holland” over and over again. Some people love it, others don’t, but I think it’s a simple way to put something so complex into an analogy that everyone can understand.

Welcome to Holland

By Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience understand it. It’s like this:

“When you’re going to have a baby, it’s like planning a fabulous trip to Italy. You buy guidebooks, make plans—The Colosseum, Michelangelo’s David, the gondolas of Venice. It’s all very exciting.

“After months of eager anticipation, the day arrives. You pack your bags and take off. But when the plane lands, the stewardess announces: ‘Welcome to Holland.’

“‘Holland?!’ you say. ‘What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life, I’ve dreamed of going to Italy!’

“The stewardess replies, ‘There’s been a change in the flight plan. We’ve landed in Holland, and here you must stay.’

“The important thing is, they haven’t taken you to a horrible, dirty, diseased place. It’s just… different. So, you must buy new guidebooks. Learn a new language. Meet people you never would have met. Holland has windmills. It has tulips. It even has Rembrandts. But everyone you know is coming and going from Italy, and they’re all talking about what a wonderful time they had. And for the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’

“The pain of that will never fully go away, because losing that dream is a significant loss. But if you spend your life mourning that you didn’t go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

Navigating Between Worlds

Some days, I feel like I’m in both places at once.
Other times, I feel like I’ve been dropped into Greenland, so far removed from everyone else.

The point of the essay is simple: Life doesn’t always go as planned.

I’ve been a parent for nearly 15 years, and while things haven’t always gone the way I imagined, I never expected this journey.

When you’re pregnant, everyone asks, “What do you want? A boy or a girl?”

The standard answer? “I don’t care, as long as the baby is healthy.”

And I meant it.

With genetic testing before pregnancy, high-risk appointments every two weeks, countless ultrasounds, I really thought we would land in Italy—safe and sound.

I never even considered a detour.

Grieving the Childhood I Imagined

I’ve probably spent too much time mourning the loss of a ‘typical’ childhood for Jackson.

I fear his childhood memories will be filled with:

  • Hospital rooms and beeping monitors.
  • Machines and constant pokes.
  • Being woken up every night and forced to eat.
  • Stressed-out parents, worried about him, about money, about everything this life entails.

I hate that for him.

But I can’t change where life has taken us.

What I can do is stop and appreciate the beauty in our Holland.

I have been entrusted with two beautiful children, who love me, who make me a better—albeit exhausted—person.

This journey is hard, but I promise you, it’s worth it.

I just hope we can stay in one place for a while…

I’m not ready to be a world traveler.

Life Can Sure be Sweet

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hihopes picture.pngMost days, our lives aren’t easy.

Five hospitalizations in the last few months have left us stressed, scared, and overwhelmed. But despite everything, we are stopping to enjoy the sweetness in our lives—because Jackson is about to turn one!

A Year of Challenges & Growth

In the last year, we have:

  • Learned so much and met some of the most amazing people.
  • Seen family and friends rally around us in ways we never expected.
  • Learned to advocate—for Jackson, for ourselves, and for others.
  • Watched our older child grow and mature, fighting for her little brother every step of the way.
  • Seen our “Sugar Baby” become a hero right before our eyes.

No, it’s not always easy. But life can sure be sweet.

Stability & The Next Big Test

Lately, Jackson has been mostly stable.

We still have scares—times when his sugar drops without warning, and we fight to bring it back up. But thankfully, that has become the exception rather than the rule.

In the next few weeks, he’ll be readmitted for his first Safety Fast since diagnosis.

The goal? To fast him on Diazoxide alone and see how long he can go without eating.

This isn’t a foolproof method, but it’s one of the only ways to gauge:

  • Is he getting better?
  • Is he getting worse?
  • Does he need an increase in medication?
  • How long do we have if he can’t eat before things take a dangerous turn?

So many things affect blood sugar—illness, pain, outside temperature, energy levels—so how he responds in the hospital may not fully reflect real life.

But it will give us a starting point.

And for now, we are holding onto hope and the sweetness of today.

CGM – APPROVED!

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After a long fight, the CGM was finally approved, and we love it!

We had to go through the State of Texas Independent Review Organization (IRO) for a final appeal, but UHC’s decision was overturned!

The reviewing doctor stated:

This young infant was diagnosed around four months of age with altered mental status and seizures. There was concern that he had been hypoglycemic and possibly experiencing seizures for some time. He has since stabilized on diazoxide. However, despite diligent blood glucose monitoring every three hours, frequent feedings, and conscientious medication administration, he continues to have severe hypoglycemia spells. He is unable to communicate symptoms with his parents, increasing the likelihood of severe hypoglycemia. This in turn increases his risk of brain damage and intellectual disability.

Use of a Dexcom G5 continuous glucose monitoring system would allow for near-continuous glucose monitoring, enabling the family to intervene as needed, preventing severe hypoglycemia and reducing potential risk for brain damage. This device is medically necessary and appropriate for this baby boy.

This battle involved hours on hold, countless phone calls, standing over fax machines, and more than a few tears on my end.

I’ll never understand why we had to fight so hard, but in the end, the reviewing doctor saw the severity of the situation and did the right thing.

Getting Used to the CGM

Right now, we have the CGM placed on his thigh. The first insertion was rough—he cried a lot—but we’re getting the hang of it.

He uses an iPhone as a transmitter, and as long as he’s on WiFi (like at daycare), I can check his sugar every five minutes through an app on my phone.

The system alerts us when his sugar is:
Dropping too fast
Under 70
Under 55

This device is absolutely worth the fight.

wehavehihopes cgm.png

Insurance Denies – CGM

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Jackson’s endocrinologist requested a Dexcom G5 Continuous Glucose Monitor, warning us that insurance would likely deny it.

I seriously thought, there’s no way. How could they deny a device that could literally save his life?

Since Jackson’s birth, I’ve spoken to our insurance company many times—and honestly, they’ve always been pleasant to deal with. No issues at all.

So when they denied the claim—even after prior authorization—I was shocked.

Yes, I had been warned, but they had been so easy to work with before. I expected more from them.

The Call

I decided to call and talk to them.

Surely, if they understood Hyperinsulinism, they wouldn’t deny it, right?

Wrong.

Their reason?

“BECAUSE PATIENT DOES NOT HAVE TYPE 1 DIABETES, THIS DEVICE IS NOT MEDICALLY NECESSARY.”

Deep breaths.

So I calmly explained:
✔ He doesn’t have diabetes but has a disease that affects his glucose levels.
✔ He is severely hypoglycemic.
✔ If his blood sugar drops and I don’t catch it, he could suffer brain damage or worse.
✔ He’s six months old—he can’t tell me if he feels unwell. This machine would communicate for him.
✔ This machine isn’t just for diabetics—it’s for anyone who needs 24/7 blood glucose monitoring.

Still not enough justification.

The Appeal

In desperation, I submitted an appeal, explaining everything I knew about HI and begging them to reconsider.

Julie from Congenital Hyperinsulinism International also wrote a letter, urging them to look at the facts.

The truth is, if Jackson suffers brain damage, the long-term medical costs will far exceed the cost of this device.

It’s the right thing to do—and it would save them money in the long run.

They said they’d make a determination in 30 days.

So… we wait.