SDR Recovery Day 8: Ready to Work

Quick Stats

Age: 3 years old
Diagnosis: Right Hemiplegic Cerebral Palsy
Procedure: Selective Dorsal Rhizotomy SDR
Post-Op Day: 8
Pain: None
Appetite: Normal
Mobility: Walking 20+ minutes at a time
Sleep: Good but desperately needs naps!
Mood: Happy and motivated
Nerve Sensations: Resolved

Today was our first full day of inpatient rehabilitation.

For the first time since arriving in Plano, we had a full therapy schedule: two hours of physical therapy and one hour of occupational therapy.

And Amri absolutely crushed it.

We met the therapy team that will be helping guide the next phase of his recovery, and our first impressions could not have been better.

One especially interesting connection came during occupational therapy.

We learned that Zach, one of Amri’s occupational therapists, previously worked with Dr. Shah and his team from 2014–2016.

In fact, he was present for the second SDR patient Dr. Shah ever performed surgery on.

As parents, it was reassuring to hear him speak so highly of Dr. Shah and the entire Houston team.

Of course, we already think pretty highly of them ourselves.

Every single person we encountered at Memorial Hermann played a role in making this journey a positive one, and hearing that same respect from another professional only reinforced what we already felt.

What We’re Working On

One thing we learned today is that SDR may reduce spasticity, but therapy is where the real work begins.

In physical therapy, a major focus right now is strength building and weight shifting.

Before surgery, Amri naturally favored his left side.

Now we’re working on helping him distribute weight more evenly between both legs while standing, playing, and moving.

The goal isn’t just walking.

It’s learning how to use both sides of his body more efficiently and building the strength needed to support those new movement patterns.

Occupational therapy is focusing heavily on Amri’s right side, particularly his arm and hand.

Our long-term goals include improving his ability to write, color, dress himself, and undress independently.

He’s already close to doing many of those things, but cerebral palsy can make tasks requiring two hands much more challenging.

One interesting discussion we had with Zach involved a therapy approach called constraint training.

Because Amri naturally relies more on his stronger left side, Zach believes we will likely begin constraint therapy soon. The plan would be to place a removable cast on his left arm for a few hours each day, encouraging him to use his right arm and hand more consistently.

The idea isn’t to punish the stronger side.

It’s to give the weaker side more opportunities to learn, strengthen, and develop new skills.

Zach also noticed how Amri activates and positions his right thumb during certain activities. It’s something he’ll continue monitoring closely, and we may eventually use therapeutic taping techniques to help encourage more functional positioning and use.

It’s fascinating to watch how much attention is given to the little details.

Every movement matters.

Every pattern matters.

And every small gain has the potential to build toward greater independence in the future.

The therapy sessions themselves were incredibly productive.

One thing we’re quickly realizing is that we’re going to need to adjust our schedule to protect nap time moving forward.

Amri still very much needs his daily nap.

When he misses it, he’s a completely different kid.

Today we pushed through without one, and thankfully he did surprisingly well.

But starting tomorrow, we’ll be building nap time into our daily rehab routine.

It’s hard enough being three years old.

It’s even harder being three years old and doing three hours of therapy.

Walking continues to improve every single day.

Amri is now walking for more than 20 minutes at a time and spending a large portion of his day on his feet.

One thing we learned today is that, for safety reasons, it’s standard protocol during inpatient rehab for children to either wear a gait belt or have an adult provide support while walking outside of their room.

Naturally, we’ve renamed the gait belt.

It’s no longer a gait belt.

It’s his “tail.”

And honestly, I think that’s a much better name.

The purpose is simply to prevent falls while children are learning new movement patterns and building strength after surgery.

Although it can be tempting to focus on the milestones we can see, we’re constantly reminded that the goal right now is quality movement, safety, and repetition.

The more opportunities Amri has to practice moving correctly, the stronger those new patterns become.

Perhaps the most surprising thing about today was his energy level.

Even after three hours of therapy, walking, playing, and exploring, he still seemed to have plenty left in the tank.

In fact, we’re beginning to wonder if he actually has more energy now than he did before SDR.

Whether that’s because he’s moving more efficiently, expending less energy fighting spasticity, or simply feeling better, it’s something we’ve noticed repeatedly over the last several days.

And we’re certainly not complaining.

Another milestone today was finally removing Amri’s surgical bandage.

Before taking it off, we had to get one last photo of Amri and Monkey Kade showing off their matching “SDR scars.”

Back before surgery, we gave Monkey Kade a matching bandage so Amri wouldn’t feel like he was going through this alone. Throughout the journey, they’ve shared matching equipment, matching injuries, and matching adventures.

When it came time to remove the bandage, there were definitely some tears.

Thankfully, we don’t think it was because of pain.

Like many kids, Amri seemed much more concerned about the sticky adhesive than the incision itself.

Once it was off, he bounced back quickly.

Seeing the incision uncovered for the first time was another reminder of just how far he’s come in only a week.

From surgery day to full-time rehab in just eight days.

Not bad for a little superhero.

The best update of all?

Still no pain.

No Tylenol.

No Motrin.

No Benadryl.

No complaints.

Just a little boy showing up every day ready to work.

One week ago we were preparing for surgery.

Today we’re focused on rehabilitation.

The chapter has changed.

The goal hasn’t.

Help Amri become the strongest version of himself possible.

And after today’s therapy sessions, we’re feeling more excited than ever about what’s ahead.

Current Status

• Completed first full day of inpatient rehab
• Two hours of PT and one hour of OT completed successfully
• Walking 20+ minutes at a time
• Using a gait belt “tail” for safety
• Working on weight shifting and strengthening both sides
• OT focusing on right arm and hand function
• Constraint therapy likely beginning soon
• Monitoring right thumb positioning
• No pain medication needed
• No Benadryl needed
• Energy level remains high
• Gait and endurance continuing to improve
• Beginning to establish a long-term rehab routine
• One hardworking little superhero ready for what comes next