An Unexpected Journey ~ Part 1 – and so it Begins

On July 20, 2019 Adalyn Mae (Addy) turned two years old. A bubbly little girl full of smiles and giggles, she was beginning to come into her own.

One week after her birthday Addy started throwing up. For several days in a row, she threw up once each day. After throwing up she was extremely tired, but after resting, she was fine. It was truly baffling. After about two weeks, I called our pediatrician’s office and spoke with Carrie Lauer. She is one of the physician’s assistants for the practice that has been an absolute Godsend to our family; she has genuinely cared deeply for our children as well as us as parents throughout this whole journey.

Carrie didn’t see really anything abnormally wrong with Addy and since a stomach virus was going around, she suggested we just keep watching her.

Something inside me—call it my mommy-intuition—told me something was wrong. I balanced worry with prayer, trusting that God had Addy in the palm of His hands. Some days were easier than others. In the coming days we would see God’s presence and caring for us in the people we met and the circumstances we faced.

As summer wound to a close, we were back at the pediatrician, still trying to figure out this strange vomiting/exhaustion cycle Addy was dealing with. Carrie referred us to a gastroenterologist (GI) for follow up. While I was thankful for the referral, I was petrified. What was wrong?

We chose Children’s Hospital of Philadelphia (CHOP) because they were able to see us quickly. Five days before the appointment Addy stopped throwing up.

We still kept the appointment at CHOP. Because her symptoms had subsided, they believed it was in fact a long-lasting stomach virus, BUT they wanted to see her if she started throwing up again.

When Addy started throwing up just a few days later, we headed back to CHOP. The GI doctor ordered a series of tests—an upper GI endoscopy, an MRI, blood work. In the midst of it, I struggled to keep balance. What is going on? My mommy-intuition kept saying, something is wrong with my baby.

But the doctors didn’t have any answers. Brad and I kept praying.

After the GI team exhausted all of the possibilities, they sent us to neurology. More tests. MRI, EEG, more bloodwork. My poor, poor baby… needles, wires, sedations…. So many tests.

And we still didn’t have any answers. What is wrong? Am I crazy?

In mid-October, our neurologist, Dr. Prelack said, “I think it’s migraines.” I suffer from migraines, as does Brad’s mom, so it wasn’t an unusual diagnosis.

I’m not a doctor, but something still didn’t make sense. Why was this happening daily? Why did throwing up make her feel better? Why was she so tired?

And then she started shaking. We headed back to our Neurologist. We described the current pattern. “Addy gets a funny look on her face, she throws up, tremors and falls asleep.” The doctor still didn’t have any answers for us.

As our Neurologist headed out the door at the end of an exam, Addy started to shake. “Wait,” I called out. “See this? This is what she does.”

Immediately, Addy was whisked across the hall for an EEG and bloodwork. She was hysterical. They strapped her down. She was screaming. She finally fell asleep only to be woken to have flashing lights in her face. I’m broken. My heart is sliding down my cheeks in tears. I. CAN’T. BREATHE. WHAT. IS. HAPPENING?

In the midst of the brokenness, though, an answered prayer. The doctor saw it. Brad and I are NOT crazy.

When the EEG and the ensuing bloodwork come back clear, the doctor said, “We are closing the door on epilepsy. Perhaps she’s having a rush of adrenaline?”

Neurology sends us to endocrinology… we learn medical terms that we never imagined we would need to learn.

Our bodies and souls were shaken. The experience took a tremendous toll on our emotional, physical and spiritual health.

What is wrong with Addy? Won’t somebody please give us an answer?

The endocrinologist spends less than 10 minutes with us. “No, it’s not an adrenaline rush,” she says. “But, let’s do more bloodwork.”

Really?

The following day, a Friday, Addy had three episodes in the morning and two in the afternoon. When I called our Neurologist, she says “It’s time to admit Addy for observation.” Addy had a record seven episodes that day.

For it is the Lord who arms your with strength, and makes your ways perfect.

2 Samuel 22:33

An Unexpected Journey – Part 2 – Some Answers – Read Here

An Unexpected Journey – Part 3 – Hope – Read Here

An Unexpected Journey – Part 4 – What Are We Doing? – Read Here

An Unexpected Journey – Part 5 – Read Here

An Unexpected Journey – Part 6 – Read Here

MORE TO COME…