SDR Recovery Day 4: From Survival Mode to Progress

Quick Stats

Age: 3 years old
Diagnosis: Right Hemiplegic Cerebral Palsy
Procedure: Selective Dorsal Rhizotomy (SDR)
Post-Op Day: 4
Pain: Minimal
Appetite: Normal
Mobility: Walking independently, stairs, therapy participation improving
Sleep: Improving
Mood: Happy and engaged
Nerve Sensations: Improving, mostly nighttime itching

It feels like Day 72.

This week has been a rollercoaster.

The good news? Amri is progressing incredibly fast.

Today was productive across the board. OT and both PT sessions went well, and our new physical therapist, Sophia, told us that of all the SDR children she’s worked with, Amri has advanced the quickest.

Needless to say, hearing that made us very proud.

We’ve also been putting in extra work outside of our scheduled therapy sessions. We’ve spent a lot of time walking the hospital, exploring every hallway we can find, practicing squats, side-stepping, backward walking, and turning everyday activities into therapy opportunities.

We even put a foam mattress topper on the floor in our room so Amri can safely practice getting up and down, sitting tall on his knees, and playing while building strength.

One thing that has become very noticeable is how much the spasticity has decreased.

Stretching is easier.

Movement is easier.

And we’re seeing things we’ve never seen before.

Yesterday, Amri curled the toes on his right foot for the first time.

Today, we noticed him walking heel-to-toe on that same foot.

His gait is still a little wobbly, but seeing that heel strike naturally is incredibly encouraging.

His new AFOs have also been a pleasant surprise. Before SDR, putting braces on could be a challenge because of the spasticity. Now they slide on easily, and he hasn’t complained about them at all.

Pain has improved significantly.

We’re down to occasional Tylenol and ibuprofen, mostly for mild back discomfort in certain positions.

The itching is also improving. We’re still using one dose of Benadryl at bedtime, but sleep has been getting better each night.

One of today’s highlights was a visit from Dr. Shah.

Before surgery, I created a book to help explain SDR to Amri and prepare him for this journey. Dr. Shah was one of the characters in the story, and when we showed him the book today, he loved it.

He signed it for Amri and took a picture with him.

To be honest, Dr. Shah is a bit of a celebrity in our family.

Unfortunately, our biggest challenge right now isn’t medical.

It’s insurance.

Aetna’s systems have now been down for three days, creating delays with both inpatient rehab authorization and transportation arrangements.

At this point, Amri is medically ready to keep moving forward, but we’re waiting on systems completely outside of our control.

We’re giving things until tomorrow at lunchtime before making decisions about whether we may need to stay in Houston and complete rehab at TIRR instead of transferring to Plano.

But despite the uncertainty, today gave us exactly what we needed.

Hope.

Just a few days ago, Amri was lying flat in bed telling us:

“I can’t walk.”

Today, he’s walking independently for 5-10 minutes at a time.

He’s climbing stairs.

He’s exploring the hospital.

And he’s proving every day just how strong he really is.

Current Status

• Walking independently for 5-10 minutes at a time
• Completed stairs with assistance
• Walking heel-to-toe on right foot
• Significantly reduced spasticity
• No complaints about new AFOs
• Appetite back to normal
• Sleeping better
• Pain minimal
• Awaiting insurance authorization and transfer decision
• One determined little superhero exceeding expectations