A Tiny Pair of AFOs

It feels like it’s been a while since I’ve written an update on Beckham and everything else happening in our lives—and, as usual, there’s been a lot.

The last several weeks have included more orthopedic appointments, more casts, finally getting Beckham’s first pair of AFOs, more frustrating issues with catheter supplies, some unexpected health concerns of my own, one very long day full of multiple appointments, and attending our first spina bifida event 💛

An Orthopedics Update

In my last update, I embarrassingly admitted that I ruined Beckham’s second cast 😅 but let’s never mention that again after this, okay?

After that, he remained cast-free until his next scheduled appointment on September 3rd. That meant he went five days without a cast—or anything else keeping his foot in a good, neutral position.

Unfortunately, it didn’t take long before I noticed his foot starting to turn inward again.

Thankfully, it never fully regressed. He maintained pretty good flexibility and movement, but there was enough of a change that when we saw his orthopedist on September 3rd, our original plan changed.

We were supposed to have Beckham fitted for his braces that day, but because of the slight regression, his orthopedist thought it would be best to cast him for another week and take his AFO measurements after that.

So…back into a cast he went.

One week later, on September 10th, the cast came off and Beckham was finally fitted for his AFOs!

It was actually really cool getting to watch the process. The prosthetist-orthotist—which is a fancy title for a healthcare professional who measures, designs, fits, and adapts custom supportive braces and artificial limbs—took measurements and made molds specifically for Beckham’s little feet and legs so his braces could be designed just for him.

We even got to choose a cute pattern for the braces and the color of the straps. We chose an adorable safari animal print with white straps.

But because I’m a mom, my brain immediately jumped ten steps—or maybe ten years—ahead.

I started thinking about the day when Beckham will be old enough to choose his own patterns and colors for his braces.

It was one of those thoughts that somehow brought sadness and joy at the exact same time.

There’s sadness because this isn’t something I ever imagined my child would need. When I pictured his future before his diagnosis, AFOs and braces certainly weren’t part of that picture.

But there was also something really sweet about imagining an older Beckham getting excited to pick out his own colors and designs—something that gives him a little bit of ownership and control over something that will likely be a part of his life.

And I have no doubt that one day I’ll be standing there begging him not to choose the most obnoxious color combination imaginable 😂

One Last Cast

Once all of the measurements and molds were finished—yup, you guessed it—it was time for one last cast.

This time, we were told he would need to stay in the same cast until his AFOs were finished, which would take approximately 10–14 days.

Ugh. The finish line felt SO close…but also so far away 😅

To be honest, 10–14 days felt like an eternity at this point.

I was so ready to be done with that big, bulky cast—and I’m sure Beckham was too, although I genuinely think he handled the whole experience better than I did.

I Noticed His Other Foot…

During those final two weeks of casting, I started noticing something else that gave me a whole new thing to worry about.

Beckham’s right foot was beginning to turn inward too.

It was nowhere near as significant as what we had seen with his left foot, but there was definitely a noticeable change.

And, of course, my mom brain immediately started spiraling about what that could mean for his future.

We already know Beckham has muscle imbalances related to his spina bifida. Seeing changes happening in both feet makes me worry about whether casting and AFOs will be enough to maintain good positioning long-term.

Will his feet continue to turn inward as he grows?

Will we eventually be talking about tendon-release surgery?

Could these muscle imbalances create additional challenges for his mobility in the future?

I don’t have those answers right now.

And, as I’ve mentioned before, that’s one of the hardest parts of this journey—the uncertainty.

Since we didn’t actually see Beckham’s orthopedist when his final cast was removed—we only saw the nurse who removed his cast—I didn’t get a chance to ask her what she thought about the changes I was seeing in his right foot.

However, when Beckham was being fitted into his AFOs, his prosthetist-orthotist noticed the positioning as well and made a small adjustment to the sole of his right AFO to help keep that foot in a more neutral position.

So, for now, we wait, watch, and hope.

Fingers crossed that these little safari braces are enough to help maintain good, neutral positioning of both of Beckham’s feet as he continues to grow 🤞🏼

Catheter Supplies: Here We Go Again

Can I just say that I am beyond frustrated with how difficult it is to make sure we have the medical supplies Beckham needs?

And I don’t mean that in the sense that I’m annoyed or bothered that I have to advocate for my child. I will advocate for him every single day for the rest of my life if that’s what he needs.

I’m frustrated because the process shouldn’t be this dang difficult.

Over the last few weeks, I’ve been in contact with Beckham’s catheter supply company multiple times, making sure his next shipment was correct and confirming that everything would ship on the appropriate date.

I thought everything was set and good to go...

But apparently all of those phone calls still couldn’t prevent us from receiving a call on THE DAY HIS CATHETERS WERE SUPPOSED TO SHIP informing us that his catheter kits were on BACKORDER!

You would think that would send me into immediate panic mode.

Surprisingly, it didn’t.

At this point, I’ve learned that I have to be prepared for things like this.

Because insurance will only cover 200 catheters per month, and Beckham requires closer to 240, I’ve already been purchasing additional boxes myself to make sure we have enough until his next shipment from the supply company arrives.

So instead of panic, my initial reaction was mostly:

Here we go again 🙃

Then, during the same phone call, the supply specialist told me I needed to choose a different catheter kit.

Right then.

Over the phone.

So there I was, quickly looking through their other catheter kits online and basically blindly choosing one, hoping it would work for Beckham for the next month.

Now the panic and anxiety kicked in.

I am naturally an incredibly indecisive person, so being put on the spot and asked to choose a completely different medical supply for my baby felt like a monumental decision.

And honestly, it kind of IS a monumental decision.

This isn’t me trying to decide between two brands of diapers.

I catheterize Beckham every few hours, approximately 6–8 times per day, so I need to know that the catheters are going to work well for him.

So there I was, frantically searching the website, trying to weigh the potential pros and cons of the different kits, while hearing the Jeopardy! song playing in my head like a timer about to run out as the supply specialists waited for my selection ⏰😅

Eventually, I chose a kit that looked very similar to the one we had been using.

Fast-forward three days past the date our original shipment was supposed to arrive, and the replacement catheter kits finally showed up.

And immediately, I could tell:

The catheters are NOT the same.

The catheter itself seems a lot flimsier, and I’ve noticed significantly more resistance when trying to advance it into Beckham’s bladder.

Cue severe panic mode 😫

Something that I perform multiple times every single day and have become incredibly comfortable doing suddenly didn’t feel the same anymore.

Thankfully, I was able to contact the supply specialist again and request an exchange for yet another catheter kit.

And then, while she’s looking through our account, she casually says:

“Oh, look. Your original catheter kits are back in stock.”

……

I can’t even explain the intense mixture of anger, frustration, and relief that washed over me in that moment 😅😂

I’ll spare you all of the incredibly boring logistical details, but essentially, we’re now coordinating an exchange. Beckham’s original catheter kits are supposed to ship Monday and arrive Tuesday—an entire week past when they were originally supposed to arrive—and then FedEx will pick up the box of replacement catheters we’re sending back.

Whew.

That was a lot.

And I know catheter shipments probably sound like such a small, mundane part of Beckham’s medical journey compared with surgeries, MRIs, urodynamics, orthopedic appointments, and everything else we’ve experienced.

But honestly, this is the stuff that can be so exhausting about medical parenting.

It’s the phone calls.

The insurance limitations.

The backorders.

Tracking the shipments.

The constant mental inventory of: How many catheters do we have left? When is the next shipment coming? Do I have enough extras if something goes wrong?

It’s knowing that something my child needs multiple times every single day can suddenly become unavailable, and somehow it’s my job to figure out Plan B.

And then Plan C.

And probably keep a Plan D tucked away somewhere too.

Because I’ve learned very quickly that when it comes to Beckham’s medical supplies, being “prepared” apparently means being prepared for the thing you already prepared for to still somehow go wrong! 

Meanwhile…Mom Decided to Have Some Medical Problems Too

Because apparently we didn’t have enough medical appointments on our calendar, about two weeks ago I started having some health concerns of my own.

Almost every day, around the same time, I started experiencing pretty intense abdominal pain accompanied by varying degrees of nausea.

And it started happening like clockwork.

Every morning, I was eating the same breakfast: three eggs mixed with a generous pour of heavy whipping cream, topped with cheddar cheese, and two pieces of toast slathered in butter—clearly I’m trying really hard to lose all the weight I acquired while I was pregnant 🫣😂

About 1½–2 hours after eating, the pain would hit. And once it started, it would usually last around two hours.

After several days of this same pattern repeating itself, I finally made an appointment with my PCP.

I explained what had been happening and told her I was worried it could potentially be something involving my gallbladder.

And she shared the same concern.

She ordered blood work, which they drew in the office that day, along with a right upper quadrant ultrasound.

The only problem?

It took about a week to get an ultrasound appointment—and the first available appointment I could find was all the way in Fishers, which is about a 40-minute drive for me.

In the meantime, I decided to conduct my own little experiment.

I completely changed my breakfast and significantly decreased the amount of fat I was eating in the morning.

And…no pain.

At least not in the mornings.

But the abdominal pain would still sneak up on me later in the day, which then turned every meal into a guessing game of, Okay…what did I eat this time that triggered it?

Then, one evening, the pain became bad enough that I finally decided to go to the ER.

It wasn’t even necessarily because I needed pain relief, as I figured there wasn’t much they’d be able to give me anyway. At that point, I mostly just wanted answers. I figured if I went to the ER, maybe they could do an ultrasound or other testing and I wouldn’t have to continue waiting and wondering what the heck was going on.

But don’t worry—I’ll cut right to the chase.

I sat in the waiting room for over an hour…and then left before I was ever seen 🤦🏻‍♀️😂

By that point, the pain had subsided. I also hadn’t planned ahead enough to bring my breast pump, so I was becoming increasingly full and uncomfortable. And once my stomach stopped hurting, I was hungry again.

Suddenly I was sitting there thinking, Why am I even in the ER anymore?

So I went home.

Nothing like a little mommy getaway to the ER waiting room for nothing 🧳🏥

September 24th: The Finish Line

Eventually, September 24th arrived.

Exactly two weeks in the same cast.

And Beckham’s braces were FINALLY ready! 🎉

I had been looking forward to this day for so long.

After five total weeks of dealing with casts, it felt like we were finally reaching the end of one long, exhausting journey and beginning a new, exciting one.

As grateful as I was that casting was helping his foot, the cast itself brought plenty of challenges:

It was incredibly heavy and bulky—but don’t worry, Beckham still learned how to aggressively kick his cast into the wall while we changed his diaper. I honestly thought we’d have a hole in the wall by the end of the process.

Clothing was limited to onesies since we couldn’t fit any pants over it. 

We couldn’t give him a proper bath—and there was no way I was attempting another Ziploc-MacGyvered bath again… 🫠😂

And carrying him around with that giant leg cast wasn’t exactly easy either.

So, needless to say, I was beyond ready to have my baby out of that cast and into his cute little braces.

I knew the AFOs would come with their own learning curve, but they would also give us so much more flexibility.

But what I hadn’t really considered was just how exhausting September 24th itself was going to be.

Because before we could celebrate Beckham finishing casting, the day actually started with a medical appointment of my own.

One Very Long Day

My morning started by making the 40-minute drive to have my ultrasound.

From there, I had to rush back so we could make it to Beckham’s appointment to have his cast removed, followed by another appointment to pick up and fit his new AFOs.

Julian was scheduled to travel for work that day. He was originally supposed to fly out Thursday morning, but thankfully changed his flight to the afternoon so he could help with Beckham while I went to my ultrasound and hopefully make it to part of Beckham’s appointments too.

After my ultrasound, we headed over to have Beckham’s cast removed.

FINALLY 🙏🏼

Then we loaded back into the car and drove to the next appointment to pick up his braces.

And let me just say…

I was not prepared for how long this appointment was going to take.

Once we were called back, the prosthetist-orthotist explained the process. We would try the braces on, he would determine where adjustments needed to be made, then he would cut certain areas and heat and mold others. After that, we’d put them back on Beckham, make additional adjustments if necessary, and then Beckham would wear them for a while in the office so he could make sure there weren’t any areas causing too much pressure.

Okay.

Definitely not a quick “pick up the braces and go” appointment.

A few minutes after we were called back, Julian had to leave to catch his flight.

And almost perfectly on cue, my stomach pain started flaring up again.

Then I started overheating and sweating—which, for whatever reason, has also been happening when these episodes occur.

I knew Beckham was already exhausted from the morning and would probably become fussy at some point too.

And suddenly, my anxiety hit.

There I was, alone with Beckham for what was clearly going to be a long appointment, trying to manage my own pain, overheating and sweating, taking care of him, absorbing all of the information we were being given about his new braces, and making sure I didn’t miss anything important.

It was mentally and physically exhausting.

After we tried the braces on for the first time, the prosthetist-orthotist marked several areas he wanted to trim or reshape and told me he would be gone for about 20–30 minutes while he worked on them.

So there I sat.

Literally sweating bullets 😅

While also trying to catheterize Beckham as he began to fuss.

More sweating.

Trying to clean up all the catheter supplies while holding Beckham to calm him down.

Realizing there’s no trash can in the room.

What patient room doesn’t have a trash can? Weird.

Carrying all the trash in one hand and Beckham in the other arm to the bathroom so I could throw everything away and empty his urine in the toilet.

More sweating.

More fussing from Beckham, who now appeared tired AND hungry.

So there I am, back in the room, trying to feed Beckham, covering both of us to be modest so this poor man doesn’t walk in and see something he may not want to, while simultaneously dying of heat stroke—and making myself even hotter by being covered up with Beckham’s warm little body against me.

For a brief moment, I seriously thought I might die in that room from overheating.

But eventually, the stomach pain subsided…

And the hot flash faded too.

Thank. The. Heavens. Above. 🙌🏼

The prosthetist-orthotist came back. We tried the braces on again, and there were a few more areas that needed cutting and molding.

Twenty or thirty minutes turned into an hour.

And then somehow an hour turned into nearly two hours at this appointment.

At that point, I looked at the clock and realized I had another problem.

Jaxson…

I had to pick him up from school!

I had absolutely no idea this appointment was going to take this long, so I hadn’t arranged for anyone else to pick him up.

Now I’m sitting there watching the clock, calculating how quickly I can get out of there and across town, while simultaneously trying not to rush the person who is carefully fitting medical equipment to my baby’s legs 😅

Thankfully, we finally finished with just enough time to spare.

Except by this point, I was so far beyond hungry that I felt like I could eat just about anything in sight.

And then there was Beckham, who was beyond exhausted and screaming in his car seat.

Oh, the joys of motherhood.

So we ended up sitting in a McDonald’s parking lot—with me in the backseat nursing Beckham to sleep while simultaneously shoveling a cheeseburger and fries into my mouth so quickly I’m fairly certain I forgot to breathe 🍔🍟

A mom’s gotta do what a mom’s gotta do, right? 

And don’t worry.

I somehow also managed to make it to Jaxson’s school in time to pick him up.

Whew. What a day! 🫠

A Thought I Haven’t Been Able to Shake

As chaotic as that day was, there was another layer to it that has stuck with me.

Julian was leaving town again.

And suddenly, having unexplained health issues of my own felt a lot scarier than it probably would have a few years ago.

Because my thoughts don’t stop at: What if something is wrong with me?

They immediately go to: What happens to Beckham if something happens to me?

What if Julian is out of town and I become sick enough that I need to go to the hospital?

What if I’m admitted?

Who catheterizes Beckham?

Who knows his medication schedule?

Who knows how frequently he needs to be cathed, what his normal volumes look like, what things I watch for, or all of the other tiny details of his care that have simply become second nature to us?

There are people in our lives who absolutely love Beckham and would drop everything to help us.

But loving a medically complex child and being trained and comfortable enough to independently care for that child are two very different things.

And that realization has been weighing heavily on me.

It has also opened my eyes even more to families who live with this reality every single day.

I think about single parents raising medically complex children.

I think about military spouses, parents whose partners travel frequently for work, or families where one parent simply isn’t able to participate in the medical care.

I think about what happens when the one person who knows how to do everything suddenly becomes sick, injured, or unavailable.

Most parents probably have moments when they wonder, Who would take care of my children if something happened to me?

But when your child requires specialized medical care throughout the day, that question carries an entirely different weight.

You can’t necessarily just call Grandma, a babysitter, or a friend and say, “Can you keep him for the night?”

For us, whoever is caring for Beckham needs to be comfortable catheterizing him every few hours. They need to understand his medications. They need to know his medical history and recognize when something isn’t right.

It made me realize just how vulnerable our little system can be.

And maybe that’s something we need to work on.

Maybe part of caring for Beckham means making sure there are more people in our circle who know how to care for him—not because Julian and I don’t want to be the ones doing it, but because life is unpredictable.

Because medical moms—and dads—get sick too.

Our First Spina Bifida Event 💛

Amidst all of the appointments, casts, catheter drama, and everything else, we also got to experience something really special over the last few weeks:

Our very first spina bifida event as a family.

Spina Bifida of Indiana hosted an event called Roll & Stroll at a local park in my hometown. The purpose of the event was to raise funds while also bringing awareness about spina bifida to the community.

And I’m so glad we went.

There was something incredibly heartwarming about looking around and seeing so many other families who understand this world in a way that most people simply can’t.

There were babies, children, teenagers, and adults with spina bifida. And because spina bifida can present so differently from one person to another, there was such a wide range of mobility represented too.

Some people used wheelchairs. Some used walkers or braces. Some walked independently. Others only needed adaptive equipment in certain situations, like when walking longer distances.

And then there were kids doing what kids do best:

Playing.

They were climbing, laughing, chasing each other, figuring out how to navigate the playground in whatever way worked for them, and simply enjoying themselves.

And I think that was something I needed to see.

Before Beckham, I had a very different—and honestly, very inaccurate—perception of what life with spina bifida might look like.

I think I subconsciously assumed that someone living with a condition that affected their mobility would naturally feel limited by it. That their life might be less fulfilling or that they might be unhappy because of the things their body couldn’t do in the same way as everyone else’s.

Boy, was I wrong.

There were smiles and laughter everywhere.

I didn’t see children sitting on the sidelines feeling sorry for themselves.

I saw kids finding their own way to play.

I saw adults talking, laughing, connecting with other families, and living their lives.

I saw wheelchairs, walkers, braces, and other adaptive equipment—but instead of seeing those things as symbols of limitation, I began to see them for what they really were: tools that gave people more ways to move, participate, explore, and experience the world around them.

And maybe that’s one of the biggest ways my perspective has changed since Beckham was diagnosed.

So much of my fear in the beginning—and honestly, even some of my fear now—comes from wondering what Beckham will or won’t be able to do.

Will he walk?

Will he need braces?

Will he use a walker?

Will he need a wheelchair?

Will he be able to keep up with other kids?

Those questions still creep into my mind more often than I’d like to admit.

But standing at that park, surrounded by people with spina bifida of all different ages and abilities, I realized something:

Mobility doesn’t have to look one particular way for a child to have a beautiful life.

Maybe Beckham will walk independently.

Maybe he’ll wear AFOs.

Maybe he’ll need additional equipment for longer distances.

Maybe he’ll use wheels someday.

We simply don’t know yet.

But what I saw that day reminded me that none of those possibilities determine whether Beckham gets to experience joy.

He’ll find his way.

Just like all of those kids on the playground had found theirs.

And as his mom, maybe my job isn’t to spend so much time fearing which form his mobility will take.

Maybe it’s simply to make sure that whatever his way looks like, he has every opportunity, every tool, and every bit of encouragement he needs to go as far as he wants to go.

For the first time in a while, thinking about Beckham’s mobility didn’t leave me feeling afraid.

It left me feeling hopeful ❤️

And Just Like That…We Have A Tiny Pair of AFOs

And maybe that experience came at exactly the right time

Because only a few days later, I found myself staring at Beckham’s two tiny safari AFOs.

After five weeks of casting, we were finally done.

No more giant cast.

We can put pants on him again.

We can give him a real bath.

I can hold my baby without getting whacked by what essentially felt like a tiny concrete leg 😂

But more importantly, I’m continuing to understand and accept something that I’ve struggled with since Beckham’s diagnosis:

I don’t have to figure out his entire future right now.

I don’t know whether these AFOs will be enough to maintain the positioning of his feet long-term.

I don’t know whether we’ll eventually be talking about tendon-release surgery.

I don’t know exactly what his mobility will look like.

And I certainly don’t know what challenges we haven’t even encountered yet.

The uncertainty is still hard for me.

But I think one of the strangest parts of medical parenting is learning how to hold two completely different emotions at once.

I can be genuinely excited about Beckham’s adorable little safari braces while simultaneously wishing he never needed them.

I can celebrate how far his left foot has come while worrying about what I’m beginning to see in his right.

I can feel incredibly grateful that we have access to the medical supplies he needs while also wanting to scream because obtaining those supplies is somehow a full-time administrative job.

I can take care of him confidently every day while still lying awake wondering what would happen if, for some reason, I suddenly couldn’t.

And I can still have moments when I’m terrified of what Beckham’s future mobility might look like while also beginning to understand that a wheelchair, walker, braces, or any other adaptive equipment wouldn’t take away his ability to have a beautiful, happy, fulfilling life.

There always seems to be another appointment to schedule, another phone call to make, another shipment to track, another symptom to watch, another decision to make, or another what if quietly sitting in the back of my mind.

But mixed into all of that are these little victories.

A foot that is more flexible than it was five weeks ago.

A cast finally coming off.

A pair of tiny safari AFOs.

Watching children with spina bifida laugh and play on a playground and realizing that maybe some of the futures I’ve been so afraid of aren’t nearly as scary as I once thought they were.

A cheeseburger inhaled in a McDonald’s parking lot while breastfeeding my baby. 

Sometimes the victories are big.

Sometimes they probably look completely insignificant to everyone else.

But right now, I’m learning to take them wherever I can get them.

So, for now, we’ll keep putting on those little safari braces.

We’ll keep catheterizing.

I’ll keep advocating, making the phone calls, and fighting with supply companies.

We’ll keep showing up to the appointments.

And I’ll keep reminding myself that I don’t have to know what Beckham’s feet, mobility, bladder—or any other part of his future—will look like years from now.

Today, I just have to take care of the little boy in front of me.

And maybe, instead of spending so much time fearing all of the ways his life could look different from what I once imagined, I can start trusting that Beckham will show us what his version of a beautiful life looks like.

For now, he’s cast-free, rocking some pretty adorable safari AFOs, and still smiling through all of it.

And that feels like a pretty good place to be ❤️