How It Emerged

After Ophelia’s HIE diagnosis at birth, she was followed by numerous specialities and every therapy under the sun.

Around the time she was just over a year old, our PT and OT began circling around the word Cerebral Palsy without saying it directly.

We adored our therapists. Ophelia loved working with them. It wasn’t avoidance—it felt like hesitation, like they were trying not to overwhelm us.

One day, I asked directly:
Are you suggesting she has cerebral palsy?

The answer was careful: likely, but not something they could formally diagnose. That would need to come from a physiatrist.

I scheduled the appointment immediately.

The answer was yes—spastic quadriplegic cerebral palsy.

It wasn’t devastating in the way people might expect; it was clarifying.

Now we had something to understand. Something to work with.

What “Mixed Tone” Looks Like

Before the diagnosis, we were told she had “mixed tone.”

That phrase doesn’t mean much until you’re observing it each day with an untrained eye.

In our case, it looked like:

• stiffness in some muscles, especially her legs
• low tone in others, making control and coordination difficult
• movements that were effortful and inconsistent

Some days she felt strong and engaged. Other days, her body didn’t respond the same way.

It wasn’t one clear pattern. It shifted.

What We Noticed First

Before any formal diagnosis, we noticed:

• she wasn’t meeting motor milestones in a typical way
• she moved differently—more effort, less coordination
• feeding and positioning required more support
• progress came, but slowly and unevenly

She adapted in her own ways.

She dragged herself to move until about age two to two and a half. It worked for her. It was how she got where she needed to go—and boy did she get places.

Building Movement Over Time

From there, movement didn’t happen all at once. It was built in layers, each day we progressed through the layers.

She was fitted for a stander, which allowed her to bear weight safely and begin experiencing an upright position.

From there, we moved to a Rifton Pacer, and eventually transitioned to a walker that she preferred. It was lighter, easier for her to maneuver, and gave her more independence.

She began walking around two and a half.

Not in a linear or predictable way, but in a way that was hers.

We were progressing on her timeline.

Interventions Along the Way

Around a year and a half years old, she had a closed reduction procedure targeting her adductors to help address the tightness and tone in her groin muscles.

Afterward, she was placed in a spica cast for three months.

When the cast first came off, her legs were limp.

I remember thinking: What have I done?

Within a few days, movement returned—and the tone in her groin was noticeably reduced.

She has also had multiple rounds of Botox injections in the various muscle groups in her legs.

Botox, in this context, is used to temporarily relax overactive muscles, making it easier to stretch, position, and build more functional movement patterns.

Each intervention wasn’t a fix—it was a tool added to her toolbelt.

What We’re Working Toward: Selective Dorsal Rhizotomy

We are currently working toward a procedure called selective dorsal rhizotomy (SDR).

In simple terms:

An SDR is a surgery that targets sensory nerve fibers in the spinal cord that are contributing to overly strong muscles reflexes.

In spastic cerebral palsy, those signals cause constant muscle tightness and stiffness.

During the procedure, specific nerve fibers are identified and carefully cut to reduce that excessive signaling, and as a result improves muscle control.

The goal is to:

• decrease spasticity (tightness)
• improve movement and control
• make therapy more effective long-term

It does not cure cerebral palsy, but it can change how the body moves within it.

Closing

Cerebral palsy, especially after HIE, does not show up all at once.

It becomes clearer over time—through movement, therapy, and developmental patterns that begin to reveal an atypical milestone progression.

Receiving the diagnosis early can be helpful.

But what matters more is understanding what comes next.

Because that is where most of the work—and most of the progress—happens.

Sources & References:

• International Hip Dyplasia Institute — Closed Reduction
• Cerebral Palsy Research Network — Variability in selective dorsal rhizotomy surgery: an analysis of the Cerebral Palsy Research Network registry