SDR Recovery Day 10: The Hardest Therapy Yet

Quick Stats

Age: 3 years old
Diagnosis: Right Hemiplegic Cerebral Palsy
Procedure: Selective Dorsal Rhizotomy (SDR)
Post-Op Day: 10
Pain: None
Appetite: Normal
Mobility: On his feet for up to an hour at a time
Sleep: Good
Mood: Happy overall, but challenged by separation therapy
Nerve Sensations: Itching returned during the day

Today reminded us that not all therapy is physical.

Some of the hardest work happens emotionally.

The day started with a conversation with the rehab physician about the itching that has returned.

For several days it had been mostly limited to nighttime, but now it has started creeping back into the daytime as well.

While the nerve sensations continue to be a normal part of recovery, they can definitely be frustrating.

To help manage the itching, the doctor prescribed Hydroxyzine. Unlike Benadryl, it tends to cause less drowsiness while still helping with itching and discomfort.

We’re hopeful it will give Amri some relief without making him too sleepy during the day.

For tonight, though, we’re sticking with what has been working and using Benadryl before bed.

Physically, things continue moving in the right direction.

Amri is now spending up to an hour at a time on his feet.

That number still feels unbelievable when we think back to surgery day.

PT and OT continue focusing on many of the same goals we’ve been working on this week:

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

We’re definitely seeing progress.

The changes just aren’t quite as dramatic as they were during the first week.

That’s okay.

Recovery isn’t supposed to be giant leaps forever.

Sometimes progress looks like small improvements repeated over and over again.

Today’s biggest challenge had nothing to do with SDR.

It had everything to do with separation anxiety.

We knew this day was coming.

We just didn’t know it was coming today.

Before Amri’s final OT session, Zach came into our room and, as he put it, “ripped the Band-Aid off.”

Instead of easing into separation over several days, we went all in.

To be honest, none of us were expecting it.

Amri cried all the way down the hallway to OT.

And he cried through much of the session.

As parents, it was heartbreaking.

Every instinct tells you to run after your child when they’re scared.

But we also know he’s safe.

We know he’s loved.

And we know learning that Mom and Dad can leave and always come back is an important skill for him to develop.

Thankfully, Zach gave us a much-needed pep talk.

He explained that we may temporarily lose some productive therapy time while Amri adjusts.

But in the long run, we’ll gain much more.

When we’re present, Amri naturally looks to us for reactions, reassurance, and distractions.

When we’re not there, he’s more likely to engage directly with the therapist and the task at hand.

It makes sense.

It just doesn’t make it easier.

When Amri returned, he told us exactly how he felt.

“I was sad.”

“I was scared.”

Those words broke our hearts.

But they also opened the door for an important conversation.

We reminded him how brave he is.

We reminded him that he’s safe.

We reminded him that Mom and Dad are always just down the hall waiting for him.

And most importantly, we reminded him that being scared doesn’t mean he can’t do hard things.

Within a surprisingly short amount of time, he bounced back.

And then the day got much more fun.

Amri received a visit from some very special people:

His big brother Joseph.

Joseph’s girlfriend, Shyla.

His oldest sister, Priscilla.

And Priscilla’s boyfriend, Sobi.

Since it was Shyla’s birthday week, we turned the visit into a celebration complete with cupcakes, brownies, and birthday hats.

The timing couldn’t have been better.

After a challenging therapy session, it was exactly the distraction and encouragement Amri needed.

He proudly gave everyone a tour of the hospital, showed off all of his favorite spots, danced, explored, and spent time outside searching for rocks.

Watching him transition from tears during therapy to laughing with family a short time later was a good reminder of how resilient kids can be.

We also had a nap scheduled into our day.

Just like yesterday, it never happened.

At this point, we’re beginning to wonder if SDR secretly came with unlimited energy.

Because despite skipping another nap, Amri still managed a full therapy day, family visit, hospital adventures, and an incredible amount of walking.

No pain.

No pain medication.

No complaints.

Just a little extra itching and one very brave boy doing hard things.

Today wasn’t the easiest day.

But it may have been one of the most important.

Because while SDR is helping Amri gain physical independence, we’re also helping him build emotional independence.

And both matter.

Current Status

• Walking and standing for up to an hour at a time
• Continuing PT and OT daily
• Working on weight shifting, strength, balance, and right-hand function
• Separation anxiety intervention officially started
• Hydroxyzine prescribed for daytime itching
• Benadryl still used at bedtime
• No pain medication needed
• No back pain
• Family visit and birthday celebration
• No naps but energy remains extremely high
• One brave little superhero learning he can do hard things