From Diagnosis to SDR

Over the year following Amri’s diagnosis, we slowly started noticing changes.

The biggest one was his walking.

When he was first diagnosed, Amri still walked flat-footed on both sides. Over time though, he increasingly started walking on the toes of his right foot. At first it was occasional. Then gradually it became more frequent and more noticeable.

If you are unfamiliar with spasticity, tight muscles can literally begin pulling the body into different positions over time. In Amri’s case, the tightness in his right leg and ankle was starting to affect the way he moved more and more.

Around this time, we finally completed a sedated MRI in April 2025.

The MRI showed PVL, which stands for periventricular leukomalacia. Essentially, it is a type of brain injury involving damage to white matter near the ventricles of the brain and is one of the more common causes of cerebral palsy, especially in premature babies.

As difficult as it was seeing that in writing, it also brought clarity.

We finally understood the “why.”

At that point, we also decided to make some changes to Amri’s medical team and pursued new PT and OT evaluations.

This time, he qualified.

He began physical therapy twice a week and occupational therapy once a week. We also started implementing even more therapy exercises at home because honestly, with CP, therapy does not just happen during appointments. It becomes part of everyday life.

Stretching while watching TV.

Practicing balance while playing.

Encouraging use of the affected side during normal activities.

Finding creative ways to turn therapy into fun before toddlers decide they are absolutely done participating.

Which… happened often.

Around this time, we were also referred to an orthotist and Amri was fitted for an AFO on his right side and an SMO on his left.

For anyone unfamiliar, these are braces designed to help support alignment, stability, and walking mechanics.

Amri chose a monkey print for them because he has a Build-A-Bear monkey named “Monkey Kade,” and somehow the phrase “Monkey Shoes” was born.

To this day, that is still what we call them.

One thing I have learned throughout all of this is that kids are honestly incredible at adapting to things adults would completely spiral over.

Meanwhile, his dad and I continued researching everything we possibly could about cerebral palsy and treatment options.

And I mean EVERYTHING.

Facebook groups.

Medical journals.

Parent experiences.

Therapy approaches.

Orthotics.

Botox.

Casting.

Surgical interventions.

You name it, we probably looked into it at 1am.

That was when we first stumbled across SDR, or selective dorsal rhizotomy.

We saw before and after videos of children with diagnoses and walking patterns very similar to Amri’s and immediately started researching deeper.

Could this actually help him long term?

Would it reduce spasticity permanently?

Would it improve his gait?

Would it help prevent future orthopedic complications?

At the same time, we also learned SDR is not the right choice for every child with CP. Candidacy depends on many factors and requires careful evaluation by experienced teams.

We brought it up to almost every provider we saw.

Some had never heard of it.

Some knew very little about it.

Others suggested trying less invasive options first such as Botox injections, serial casting, and other temporary interventions.

And to be clear, those treatments absolutely help many children and families.

For us personally though, after researching extensively, we struggled with the idea of repeatedly doing temporary procedures if there was a possibility Amri could be a strong candidate for SDR.

Our mindset became this:

If we could reduce the spasticity itself, work hard in therapy afterward, and potentially avoid multiple surgeries later in life, then we wanted to fully explore that option.

So we did.

We researched surgeons and programs extensively and eventually reached out to both Dr. Roland’s team in St. Louis and Dr. Shah’s team at Children's Memorial Hermann in Houston.

We gathered records, imaging, therapy notes, videos, and completed what felt like endless paperwork.

First, we met virtually with the St. Louis team and learned Amri would qualify as an SDR candidate.

Then in October 2025, we traveled to Houston to meet Dr. Shah’s team in person.

We left that appointment feeling hopeful for the first time in a long time.

His entire team was incredibly kind, patient, and thorough. They answered every single question we had, interacted wonderfully with Amri, and made us feel genuinely heard as parents.

By the end of that appointment, we officially scheduled SDR surgery for June 1, 2026.

Shortly after that, we had our first appointment with Dr. Jan in Plano.

Outside of being incredibly respected in the CP community and previously running the Spasticity Center in St. Louis, Dr. Jan also personally has cerebral palsy herself.

That appointment changed everything for us emotionally.

She spent nearly three hours with our family doing a detailed evaluation, explaining things in ways no one had before, and helping us better understand how CP was affecting Amri specifically.

She also strongly agreed that Amri would likely benefit greatly from SDR and spoke very highly of Dr. Shah and his team.

For the first time in a while, we felt like we had a direction.

We also learned during this appointment that Amri was having some difficulty tracking visually on his right side, leading to an ophthalmology referral.

A swallow study was also recommended because of his feeding difficulties, although eventually one day, almost randomly, Amri suddenly began eating more normally and we ended up not needing the study after all.

Since then, life has been full of therapy appointments, stretching routines, insurance battles, administrative hurdles, researching, preparing, planning, and trying to emotionally process the reality that our little boy is about to undergo major surgery.

And somehow…

We are now only four days away from SDR.