SDR Recovery Day 11: Braver Than Yesterday

Quick Stats

Age: 3 years old

Diagnosis: Right Hemiplegic Cerebral Palsy

Procedure: Selective Dorsal Rhizotomy (SDR)

Post-Op Day: 11

Pain: None

Appetite: Normal

Mobility: Walking up to an hour at a time

Sleep: Good (still refusing naps!)

Mood: Brave and resilient

Nerve Sensations: Mild nighttime itching

Yesterday was hard.

Today was better.

Much better.

The biggest focus of our day wasn’t walking, strength, or therapy goals.

It was separation.

After yesterday’s emotional first attempt at completing therapies without Mom and Dad nearby, we weren’t quite sure what to expect this morning.

As usual, there were tears leaving the room.

But once he got to therapy, something changed.

Throughout his morning therapy block from 8:30 to 11:30, we received updates that he was doing great.

Aside from a little crying during transitions between PT and OT, he spent most of his sessions participating, engaging, and working hard.

That might not sound like a huge accomplishment to some people.

For Amri, it’s enormous.

Before therapy, I gave him one of my hair ties to wear around his wrist.

I told him that whenever he missed me, he could hold it, squeeze it, or hug it.

Throughout the morning, he proudly showed it to his therapists and used it as a way to send hugs back to Mom while he was away.

Sometimes the smallest things make the biggest difference.

His afternoon OT session was a little more challenging.

By that point it was later in the day, he still hadn’t taken a nap, and it was the second separation of the day.

Even so, he pushed through.

And honestly, so did we.

As parents, we’re learning that helping your child become independent can sometimes be harder on you than it is on them.

Physically, things continue moving in the right direction.

Amri is still walking for up to an hour at a time and continues working on many of the same goals we’ve been focused on throughout rehab:

• Weight shifting
• Strength building
• Balance
• Gait quality
• Right arm and hand function
• Independence with everyday activities

Today was also the first day Zach taped Amri’s thumb.

One thing the OT team has been monitoring is how Amri activates and positions his right thumb during activities.

The taping is designed to help encourage more functional positioning and increase awareness and activation of the muscles we’re trying to strengthen.

It’s another example of how much attention the therapy team gives to even the smallest details.

Outside of therapy, oldest sister, Priscilla, visited with Sobi. Priscilla brought him a grocery shopping set from HEB. We watched a little soccer (FIFA), then  we continued our tradition of exploring every corner of Children’s Health Plano.

Today’s adventures took us to the library, the playground, and one of the coolest discoveries we’ve found so far.

A peaceful lake sits on the hospital grounds, along with something called the “Story Tree.”

We learned that the tree belonged to the original owners of the land before it was donated to Children’s Health.

Rather than removing it, the hospital chose to preserve it as part of the property.

There’s something special about finding little pieces of history tucked into places built for healing.

We spent some time walking around the lake, enjoying the fresh air, and winding down after a busy day.

Those quiet moments have become some of our favorites.

The itching is still hanging around, but thankfully it seems to be improving.

It remains mostly a nighttime issue and is much less intense than it was earlier this week.

That’s a win we’ll happily take.

And once again…

No pain.

No pain medication.

No back pain.

No naps.

Apparently no need for naps either.

At this point we’re beginning to suspect that SDR somehow unlocked an unlimited toddler energy reserve.

Looking back, today’s progress wasn’t measured in steps walked or exercises completed.

It was measured in courage.

Yesterday, Amri was scared.

Today, he was brave.

And sometimes that’s the most important progress of all.

Current Status

• Successfully completed most therapy sessions without parents present
• Hair tie “hug bracelet” was a success ❤️
• Walking up to an hour at a time
• Continuing PT and OT daily
• Thumb taping started in OT
• Working on weight shifting, balance, strength, and right-hand function
• Visited the library, playground, lake, and Story Tree
• No pain medication needed
• No back pain
• Mild nighttime itching continues
• Still refusing naps
• One very brave little superhero growing stronger every day