SDR Recovery Day 9: Looking Ahead

Quick Stats

Age: 3 years old
Diagnosis: Right Hemiplegic Cerebral Palsy
Procedure: Selective Dorsal Rhizotomy (SDR)
Post-Op Day: 9
Pain: None
Appetite: Normal
Mobility: Walking up to 45 minutes at a time
Sleep: Good
Mood: Happy and engaged
Nerve Sensations: Nighttime itching returned

Today felt like one of those days where we started looking less at where we’ve been and more at where we’re going.

The rehab physicians, therapists, and care team met this morning before meeting with us to discuss Amri’s progress.

The consensus?

Everything is going really well.

In fact, they shared that Amri came into SDR with more core strength than many children they typically see after surgery, which has likely contributed to how quickly he’s progressing.

The biggest surprise of the day came when they gave us an anticipated discharge date:

June 26th.

Hearing an actual date made everything feel a little more real.

We still have a lot of work ahead of us, but it’s encouraging to know the team feels confident in the direction things are heading.

Today was another full therapy day, and once again Amri was a champ.

We’re still focusing on many of the same goals we’ve been working toward:

• Weight shifting evenly between both sides
• Strength building
• Improving gait quality
• Right arm and hand function
• Increasing independence with everyday tasks

The therapists also shared that at some point they plan to introduce electrical stimulation (E-Stim) as part of physical therapy.

While we don’t have all the details yet, the goal will be to help activate and strengthen specific muscle groups as Amri continues learning new movement patterns.

As exciting as the physical progress has been, one of our biggest discussions today wasn’t about walking at all.

It was about separation anxiety.

If you’ve followed Amri’s journey for any length of time, you know this is something we’ve struggled with for quite a while.

His anxiety around being separated from Mom or Dad is significant.

Outside of a short period in Mother’s Day Out as an infant, Amri has spent nearly every day with one of us.

In fact, there has only been one occasion where he was cared for by someone other than Mom or Dad.

For a long time, simply buckling him into the back seat of the car would cause panic because we weren’t sitting directly beside him.

We eventually created a game where we would tell him we were running to the front seat “fast like a cheetah.”

Little by little, that helped.

Today we talked with the therapy team about using this rehab stay as an opportunity to gently work on separation in a safe environment.

Being just down the hall, knowing exactly where he is, and having trusted therapists nearby feels like the perfect setting to begin practicing.

Child Life immediately jumped into action.

After visiting our room, we worked together to create a Spiderman-themed sticker chart.

The plan is simple:

Every successful therapy session earns stickers, and those stickers earn small rewards from the stash of toys we’ve brought with us.

We’ll officially start tomorrow.

Will it be easy?

Probably not.

But just like everything else in this journey, we’re going to take it one step at a time.

Another bright spot today was meeting Rosie, one of Children’s Health’s service dogs.

Rosie stopped by to visit and left Amri some special stickers.

Needless to say, she quickly made a new friend.

We also spent some time exploring the hospital library, which was a nice change of pace between therapy sessions.

One thing that continues to amaze us is Amri’s energy level.

Despite having a nap built into today’s schedule, he never actually took one.

And somehow he still powered through the day.

In fact, he may genuinely have more energy now than he did before SDR.

Walking continues to improve as well.

Amri is now walking for up to 45 minutes at a time.

That number feels almost unbelievable considering where we started just over a week ago.

Outside of therapy sessions, we’re continuing to work on the same goals through play, exploration, and everyday activities.

The more opportunities he has to practice, the more confident he becomes.

The only setback today?

The itching is back.

Thankfully it only seems to show up at night, but when it does, it shows up in full force.

So tonight we’re bringing Benadryl back into the lineup to help him get comfortable and get some rest.

The good news is that the itching remains our biggest complaint right now.

No pain.

No back pain.

No pain medication.

Just a determined little boy working hard every day and continuing to surprise us.

A week ago we were hoping surgery would give him opportunities.

Today we’re watching him take advantage of them.

Current Status

• Projected discharge date of June 26
• Walking up to 45 minutes at a time
• No pain medication needed
• No back pain
• Continuing PT and OT daily
• E-Stim likely to be added in future sessions
• Beginning work on separation anxiety
• Spiderman reward chart starts tomorrow
• Nighttime itching returned
• Benadryl used only at bedtime
• Energy level remains extremely high
• One hardworking little superhero making the most of every opportunity