Before We Knew: Amri’s Early Story

If you are new here, I figured it was finally time to share Amri’s story from the beginning because over the past couple years, our world has changed in ways we never expected.

For those who do not know us, Amri was born on 8/31/22 in Bedford, Texas. I had him at 36 years old and he was my fourth baby. My pregnancy overall was pretty normal, although I did go into pre-term labor three different times.

The third time ended up being the real thing.

That morning, I dropped my daughter off at school and drove myself to labor and delivery. I arrived around 8am thinking it would probably be another false alarm. Once they hooked me up to the monitors though, they saw Amri’s heart rate dropping and everything moved FAST.

I was taken back for an emergency c-section and at 8:34am, Amri made his entrance into the world weighing 5 pounds 6 ounces and measuring 18.5 inches long.

At 35 weeks, he was tiny but mighty.

He spent about 24 hours on a CPAP and feeding tube and had a total NICU stay of 4 days before coming home. Considering everything, he did incredibly well.

Honestly, he was kind of the dream baby. He slept great, was calm and happy most of the time, and quickly went from not even registering on the growth chart to catching up beautifully during his first year.

There were a few delays along the way though.

Amri was later to sit independently and crawl, but he was always incredibly bright, alert, social, and aware of everything around him. 

Around 10 months old, we started baby led feeding. That was when my “mom gut” first started getting louder. Looking back, this was the first sign.

Amri did perfectly fine with foods that had a softer consistency, similar to baby food textures. But when it came to firmer foods, something seemed off. He would take bites, chew them, and genuinely seem interested in eating them… then spit them back out.

Over and over again.

It was obvious to me that he wanted to eat these foods, but for some reason, he could not quite manage them.

I brought it up during a pediatric appointment and was told he looked great, was growing well, and was climbing the growth chart appropriately. Basically, not to worry.

And to be clear, they were not dismissive or uncaring. At the time, there probably was not enough happening yet to immediately point to something neurological.

Still, something in me felt like there was more to it.

So we kept trying. We cut foods into tiny pieces, experimented with textures, encouraged him without pressuring him, and hoped it would click with time.

Then came walking.

Amri did not start walking until around 18 months old. Once he did, I noticed his gait looked different. He would swing his right leg outward while walking and something just looked “off” to me, even though I could not explain exactly why.

At that point, both of his feet were still flat on the ground when he walked, so we honestly wondered if maybe it was something orthopedic like drop foot or a leg issue.

We scheduled another pediatrician appointment and after examining him, she mentioned the possibility of a leg length discrepancy and referred us to orthopedics.

Cue the Google spiral.

If you are a parent, you already know how this goes. One referral quickly turns into seventeen tabs open on your phone at 2am while you convince yourself your child either has absolutely nothing wrong or every diagnosis on the internet.

There is rarely an in-between.

In July 2024, we went to the orthopedic appointment expecting to talk about leg measurements.

Instead, that appointment changed the course of our lives.

After examining Amri’s gait and reviewing x-rays of his hips and legs, the provider explained that his legs were essentially equal in length.

Then he pointed something out that neither his dad nor I had consciously noticed before.

Amri held his right arm tucked in when he walked.

The provider explained that this pattern can sometimes be seen in children with cerebral palsy.

I remember feeling like the air got sucked out of the room.

At that appointment, we received the diagnosis of right side spastic hemiplegic cerebral palsy.

At the time, neither of us knew very much about CP. Suddenly we were hearing unfamiliar medical terms, asking a million questions, trying to process information, and honestly just trying not to completely fall apart emotionally in front of everyone.

I definitely cried at this appointment.

What we learned that day was that Amri’s right side was affected by spasticity, meaning certain muscles were overly tight because the signals from the brain were not regulating muscle movement the way they typically would. One explanation given to us was that instead of the signal turning “on and off” normally, it was almost like parts of the signal stayed switched on.

And just like that, we entered a whole new world of neurology appointments, therapies, research, acronyms, Facebook groups, and trying to figure out what this diagnosis would mean for Amri’s future.

At the time though, we had no idea just how much more we were about to learn.