SDR Recovery Day 12: A Milestone We Never Thought We’d See

Quick Stats

Age: 3 years old
Diagnosis: Right Hemiplegic Cerebral Palsy
Procedure: Selective Dorsal Rhizotomy (SDR)
Post-Op Day: 12
Pain: None
Appetite: Normal
Mobility: Walking up to an hour at a time
Sleep: Great — nap included!
Mood: Happy and playful
Nerve Sensations: Mild nighttime itching

Today was Saturday, which means rehab runs on a bit of a different schedule.

Weekend therapy operates with a skeleton crew, so there are fewer therapy hours and many of the children work with therapists they haven’t met before.

Since these therapists were new to Amri, Dad stayed with him during therapy sessions today.

Everything went great.

Amri was in a fantastic mood all day and transitioned easily through his sessions.

One thing that probably helped?

He actually took a nap today.

After several days of refusing sleep and somehow operating on what appears to be unlimited toddler energy, we finally convinced him to rest.

And it definitely showed.

The biggest victory of the day happened outside of therapy.

Between stretching, massage, heat, therapy exercises, and all of the hard work being put in every day, Dad noticed something incredible.

For the first time since Amri’s cerebral palsy diagnosis, he was able to stretch Amri’s right foot and ankle beyond 90 degrees.

If you’re not familiar with CP, that might not sound like a big deal.

For us, it absolutely is.

Limited ankle range of motion and tightness have been part of our daily reality for years.

To see his foot move beyond a position we’ve never been able to reach before was one of those moments that stops you in your tracks.

It’s hard to explain just how exciting something so simple can feel.

Sometimes the biggest victories aren’t measured in steps.

Sometimes they’re measured in degrees.

Outside of therapy, we continued exploring the campus, getting in plenty of walking, and turning everyday activities into opportunities for movement and practice.

Although progress isn’t quite as dramatic as it was during the first week, we’re continuing to see small improvements every day.

Those small improvements add up.

One topic we’ve started paying closer attention to is toileting.

Before surgery, Amri had recently become fully potty trained during the day, although we still used a pull-up at night.

When surgery day arrived, we temporarily went back to pull-ups full time to make recovery easier.

Over the last several days, we’ve slowly started reintroducing his “big boy underwear.”

One thing we’ve noticed is that he’s consistently telling us when he needs to have a bowel movement.

However, he’s not yet consistently telling us when he needs to urinate.

Because SDR surgery can temporarily affect bladder awareness, sensation, and continence during the recovery period, we’re hoping what we’re seeing is simply part of the healing process.

It’s not uncommon for children to experience temporary changes while the nervous system adjusts after surgery.

We’ll be discussing it with the medical team tomorrow so we can better understand what to expect and whether any additional support or monitoring is needed.

Thankfully, it isn’t causing him distress, and we’ll continue following his lead while working toward getting back to where he was before surgery.

Tomorrow is another lighter day and one we’re especially looking forward to.

Amri is expecting a full lineup of visitors:

His siblings.

His Tio David and Tia Frances.

And his Fafa.

Needless to say, he is very excited.

As for today, we’re ending it the same way we’ve ended many recent updates:

No pain.

No pain medication.

No back pain.

A little nighttime itching.

Lots of movement.

And one very happy little boy continuing to surprise us.

Current Status

• Walking up to an hour at a time
• Weekend therapy completed successfully
• Worked with new therapists
• Took a much-needed nap
• Right ankle stretched beyond 90 degrees for the first time
• Continuing stretching, massage, and strengthening exercises
• No pain medication needed
• Mild nighttime itching continues
• Monitoring post-SDR bladder awareness and toileting progress
• Looking forward to family visits tomorrow
• One hardworking little superhero making gains every day