SDR Recovery Day 3: Walking, Waggin’ Wednesday, and Our First Big Win

Quick Stats

Age: 3 years old
Diagnosis: Right Hemiplegic Cerebral Palsy
Procedure: Selective Dorsal Rhizotomy (SDR)
Post-Op Day: 3
Pain: Mild to moderate back pain
Appetite: Improving
Mobility: Walking short distances with minimal assistance
Sleep: Improving
Mood: Much happier
Nerve Sensations: Significant itching, primarily right leg

Today felt different.

For the first time since surgery, it felt like we could finally see a little light at the end of the tunnel.

We managed to get a little more sleep overnight, which immediately made a difference for everyone.

The day started with occupational therapy.

Today’s session focused on everyday activities like brushing teeth, getting dressed, transferring from the wheelchair to a bench, reaching with both arms, and bending forward safely.

These may sound like small things, but after major surgery they become important building blocks for independence.

We are also beginning to find our rhythm again.

For the first time since surgery, we’re settling back into something that resembles Amri’s normal routine, including his daily nap. That alone has made a noticeable difference in his mood, energy level, and willingness to participate.

Another exciting milestone today was putting on Amri’s new AFOs.

One of the first things we noticed was how much easier they were to put on.

Before SDR, the spasticity in his right leg often made positioning his foot difficult. Sometimes it felt like we were fighting against his muscles just to get the brace on correctly.

Today, the brace went on with surprisingly little resistance.

It was one of those subtle moments that may not seem like much from the outside, but for us it was a powerful reminder that changes are already happening.

We also witnessed something completely new.

Amri curled the toes on his right foot.

In all the years we’ve watched and analyzed every movement, I don’t remember ever seeing him do that before.

Whether it’s directly related to the changes happening after surgery or simply a movement that was previously being overshadowed by spasticity, it was fascinating and exciting to witness.

Later in the morning we had physical therapy, and we had some very special motivation.

Dexter came to visit.

We played fetch, practiced standing, and worked on maintaining a tall kneeling position while petting and brushing him.

Animals have a way of making difficult therapy sessions feel a little less like work.

One of the most encouraging moments of the day happened while Amri was standing.

For the first time, I saw his foot sitting remarkably close to flat.

Combined with seeing him curl the toes on his right foot, it felt like we were getting tiny glimpses of movement patterns that had been hidden beneath years of spasticity.

Seeing those changes was incredibly emotional and gave us a glimpse of why we chose this journey in the first place.

We also participated in a dinosaur scavenger hunt that encouraged Amri to take steps and walk.

Over the course of the activity, he walked several times with assistance.

Not far.

Not perfectly.

But he walked.

And every step felt huge.

Shortly after returning to our room, another surprise arrived.

A letter from Dexter.

The staff had written back to Amri on Dexter’s behalf, thanking him for the drawing and explaining that Dexter creates his artwork using markers held in his mouth.

The letter even included a special drawing.

Amri was absolutely thrilled.

As if that wasn’t enough excitement for one day, we were also invited to attend Waggin’ Wednesday.

This week’s event happened to be extra special because it was Boris the service dog’s birthday party.

The theme was Toy Story.

Completely by coincidence, Amri was already wearing a Toy Story shirt.

Some things are just meant to be.

We spent much of the day intentionally staying out of our room.

One thing we’ve learned quickly is that changing scenery changes attitudes.

We visited the cafeteria for lunch.

Explored the hospital.

Found the gift shop.

And made a few adventures out of things that otherwise could have felt routine.

At the gift shop, Amri picked out a penguin he named “Icy.”

He also chose a scented stuffed apple for his big sister Mila.

Those little moments of normal childhood in the middle of a hospital stay mean more than I can explain.

We also had the opportunity to meet with Christy from PT, who spent time answering our many questions.

One thing she emphasized was that these first few days are all about building endurance.

Strength will come later.

Right now, the focus is helping Amri tolerate activity, participate in therapy, and slowly increase what his body can handle.

Her reassurance that he is exactly where he needs to be was something we really needed to hear.

The neurosurgery team also stopped by later in the day and confirmed what many SDR parents had told us.

The itching is real.

And it’s expected.

In fact, both the neurologist and Christy explained that these new nerve sensations typically last around 10 days, with Days 1 through 6 often being the most intense.

While the itching has become more intense overall, it has also become more localized.

Most of it is now concentrated in his right leg, which makes sense since that is the side most affected by surgery.

Knowing there is an expected timeline doesn’t make it any more fun for Amri, but it does make it a little easier for us as parents.

We have continued saving Benadryl for nighttime so we don’t make him overly sleepy during the day.

Thankfully, it continues to help.

Unfortunately, we still have no updates regarding insurance authorization or transfer plans to Plano.

At this point, we are beginning to prepare for the possibility of spending additional time here in Houston while things are sorted out.

In the meantime, Christy has given us activities we can work on independently in our room so that every day remains productive.

One thing that has helped tremendously throughout this entire experience is that we came prepared.

Before leaving for Houston, we stocked up on small toys from Dollar Tree.

We’ve been using them as rewards for participating in therapy sessions, trying difficult tasks, and pushing through uncomfortable moments.

Those little rewards have been worth their weight in gold.

Another victory today involved something every hospital parent becomes strangely excited about.

Bowel movements.

This morning we started Miralax and Senokot.

By after lunch, Amri had three successful bowel movements.

After surgery, medications, reduced activity, and a completely different routine, this absolutely qualifies as good news.

His appetite also continues to improve.

Today he snacked throughout the day, ate some lunch, and finished about half of his dinner.

Another sign that his body is beginning to settle into recovery mode.

This evening brought our biggest victory yet.

Our superhero capes and masks arrived from Amazon.

Naturally, Amri, Dad, and I had no choice but to suit up and hit the hospital hallways.

If you’re going to practice walking after major neurosurgery, you might as well do it dressed like superheroes.

And that’s exactly what we did.

While wearing our capes, Amri began getting himself out of the wheelchair and walking short distances with minimal assistance.

At one point, he walked approximately 10 feet.

Then he did it again.

And again.

Three separate times.

Just a few days ago, he was lying flat in bed, unable to move.

Today he was getting up and walking.

Tonight, Benadryl was once again our secret weapon.

For the first time since surgery, Amri fell asleep relatively easily.

In fact, it may have been the easiest bedtime we’ve had since arriving in Houston.

We’re hoping that means everyone might finally get some decent sleep.

The first 48 hours after SDR were some of the hardest we’ve experienced as a family.

There were tears.

There was pain.

There was fear.

There were moments when recovery felt impossibly far away.

Today felt different.

Today felt hopeful.

There is still pain.

There is still itching.

There are still unknowns, including when we’ll finally make it to inpatient rehab.

But today there was also walking.

There were flatter feet.

There were curled toes.

There were superhero capes.

There were wagging tails.

There were smiles.

And for the first time since surgery, we can truly see the progress everyone told us would come.

Today made the hard days worth it.

Current Status

• Walking approximately 10 feet with minimal assistance
• New AFOs fitting noticeably easier
• First observed toe curling on right foot
• Appetite improving
• Three successful bowel movements
• Back pain improving
• Significant nerve-related itching, primarily right leg
• Continuing nightly Benadryl for comfort and sleep
• Transfer to Plano still pending insurance authorization issues
• Much happier mood and increasing endurance
• One brave little superhero making progress every day