So Much to Be Grateful For, So Much to Figure Out

This update comes with some really encouraging news. Beckham is doing so well overall, and we recently received wonderful feedback from both neurosurgery and his First Steps developmental evaluation. At the same time, the day-to-day reality of his care continues to be a lot, and with my maternity leave ending soon, we’re trying to figure out what the next chapter will look like for our family.

An Encouraging MRI & Neurosurgery Update

Beckham recently had a repeat MRI of his brain and spine, followed by an appointment with his neurosurgeon to review the results.

We were happy to hear that she was pleased with his MRI and that his brain looks amazing overall.

His ventriculomegaly has significantly improved compared with his previous imaging, which is reassuring to see after everything he went through with his VP shunt placement and revision shortly after birth.

His syrinx—the fluid-filled cavity within his spinal cord associated with his syringohydromyelia—has also gotten smaller.

His neurosurgeon was also happy with how Beckham looked clinically. His incisions from his VP shunt and myelomeningocele repair are healing beautifully, and she commented on how alert and active he was during the appointment.

Even better, we don’t need any additional imaging in the near future. Beckham will return to neurosurgery in three months for a routine check-up, unless concerns arise before then.

Orthopedics Evaluation

During the appointment, his neurosurgeon asked whether we had been able to see orthopedics yet to evaluate Beckham’s left foot.

I explained that getting an orthopedic evaluation has been a frustrating process. I’ve been trying to get him an appointment but have received some conflicting information and pushback along the way—even after our pediatrician sent a referral. 

She immediately reached out to someone in orthopedics to see if Beckham could be evaluated sooner rather than waiting until his first Spina Bifida Clinic appointment on September 1st.

We’re currently waiting to hear back from orthopedics, but we’re hopeful we can get some answers about his foot soon and determine whether there are any interventions we should be pursuing, such as splinting or casting, to help with his positioning and range of motion.

First Steps & Starting Physical Therapy

We also recently completed Beckham’s developmental evaluation through First Steps, Indiana’s early intervention program.

Overall, the assessment was encouraging.

His evaluators described him as a happy, alert, and vocal baby, and at this time, he is developmentally on track in most areas.

He has started giving us those sweet social smiles, is cooing and becoming much more interactive, and his visual tracking has noticeably improved over the past few weeks—although there is still some question about how smoothly he tracks, so that is something we’ll continue to monitor.

His communication, social, and cognitive skills are all currently considered developmentally appropriate.

His fine-motor development is also progressing as expected. He is beginning to voluntarily open and close his hands, brings both fists toward his mouth, focuses on faces, and is developing more purposeful control of his movements.

As expected with his spina bifida, the primary area where Beckham will need additional support is gross motor development.

His evaluation noted that he has incomplete motor function in his legs, with more muscle function and active movement in his right leg than his left. He actively kicks and bends both hips and knees, although the right is stronger. They also noted differences in his feet and ankles, particularly the inward positioning of his left foot.

There were encouraging findings here, too. Beckham is currently tolerating age-appropriate positioning and tummy time. During his evaluation, he was able to lift and turn his head in both directions while lying on his belly.

Because of the motor differences associated with his spina bifida, Beckham qualified for early intervention and will begin physical therapy once a week. We’re currently waiting to hear from his PT so we can coordinate timing and get started.

The Reality of Cathing Every Few Hours

One of the biggest parts of Beckham’s care at home continues to be managing his neurogenic bladder.

I previously mentioned that we were catheterizing him approximately every three to four hours, but in reality, we have found ourselves cathing much more frequently since starting oxybutynin—typically every two to three hours during the day and then whenever he wakes overnight.

We are averaging around eight catheterizations every 24 hours.

Even with cathing him this frequently, we occasionally still get surprisingly large residuals—sometimes 100–140 mL.

As his parents, cathing has slowly become part of our normal routine. We know how to do it, we know what supplies we need, and we structure our days around when he needs to be cathed.

But as my maternity leave gets closer to ending, I’m realizing how complicated this makes childcare.

Finding someone to care for Beckham isn’t simply finding someone we trust to feed him, change him, soothe him, and love on him while we’re gone. We also need someone who is willing to learn how to catheterize our baby and feel comfortable doing it every two to three hours.

It’s a lot for us to manage even as his parents, so asking someone else to take on that responsibility feels like an enormous ask.

And lately, that has weighed heavily on me as I try to figure out what returning to work is realistically going to look like.

When Medical Necessity Meets Insurance

On top of catheterizing him every few hours, we’ve also gotten a crash course in another side of medical parenting: insurance and medical supplies.

Because Beckham is currently averaging eight catheterizations per day, his urology team sent an updated prescription to our medical supply company, 180 Medical, for eight catheters per day—or 240 catheters per month.

Our previous shipment only provided enough for six per day. And because we’ve been cathing more frequently, we’ve gone through those supplies much faster… so now, we are almost out.

Even more frustrating is that our next shipment isn’t scheduled to arrive until August 21.

When I called 180 Medical to request an early shipment, I learned that insurance had previously indicated they would cover a maximum of 200 catheters per month.

So despite having an updated prescription stating that Beckham needs 240, we’ve spent the past week waiting to hear whether insurance will approve the additional catheters.

While we were at the hospital for his neurosurgery appointment, I stopped by his urology clinic, and they gave me a handful of catheters to get us through another day or two.

But that won’t be nearly enough to make it until August 21.

So I ultimately ordered a box of 30 catheters myself from an online medical supply company to bridge the gap while we wait for insurance to make a decision.

And I guess that’s where we are right now. If insurance ultimately refuses to cover the number his medical team says he needs, we’ll have to continue purchasing the additional catheters ourselves.

Urology did provide instructions for cleaning and reusing catheters if necessary. But I’ll admit, the nurse in me struggles with that concept. I’m so accustomed to sterile technique and single-use supplies that cleaning and reusing a urinary catheter feels like a huge “no-no”.

Beyond that, the thought of adding another process of cleaning, disinfecting, drying, and storing catheters to a day already structured around cathing Beckham every few hours feels like one more task on an already very long list.

Individually, none of these things sound enormous—make a phone call, order a box of catheters, wait for insurance.

But medical parenting often feels like a hundred small responsibilities stacked on top of one another, and we’re learning just how much time and energy goes into simply making sure Beckham has everything he needs.

Trying to Figure Out Medicaid

Another piece of the puzzle has been trying to get Beckham enrolled in Medicaid—something I knew absolutely nothing about before having a child with complex medical needs.

To be completely honest, I always assumed Medicaid eligibility was primarily based on household income.

What I’ve learned is that there are also Medicaid waiver programs that may allow children and adults with significant medical or disability-related needs to qualify based on their level of care, even when their family’s income would otherwise be too high.

However, figuring out how the whole process works, how to apply, and the typical timeline for approval has been very confusing.

I’ve spent a lot of time doing my own research, making phone calls, and trying to understand the process—and I still wouldn’t claim that I completely understand it.

As part of pursuing Indiana’s Health and Wellness Waiver, someone came to our home to complete a functional assessment of Beckham’s medical needs. Because he’s still a baby, the assessment mostly involved asking me questions about his birth, NICU stay, diagnoses, and the medical care he currently requires at home.

At the end of the assessment, I was told that because of his frequent catheterization needs, he qualified to move forward in the process and that we would need to wait to hear from the state regarding the next steps.

So I thought, Okay, great. We’re officially on the waitlist.

Apparently, not quite.

This week, I received another call from CICOA Aging & In-Home Solutions asking whether we wanted to continue with the process and officially have Beckham placed on the waiver waitlist.

I basically told her, To be honest, I am so confused by this entire process and thought we were already on it—but yes, absolutely.

So now, thankfully, we have been told Beckham is officially on the waiver waitlist.

When I asked how long families typically wait, I was told there really isn’t a predictable timeline. It isn’t simply first come, first served, and individuals with more significant care needs are prioritized first. So once again, we’re waiting to see what comes next.

Getting Beckham Medicaid coverage could potentially help our family in two important ways.

First, it could provide additional coverage for the therapies, appointments, medications, medical supplies, and other care that are becoming such a regular part of his life.

Second, it may eventually give us the opportunity to pursue a program through a home-health agency where I could potentially be compensated for providing his care at home, if we meet the applicable eligibility requirements.

That could provide supplemental income while allowing me to reduce my hours at work and be more available for Beckham’s medical needs.

When Returning to Work Isn’t So Simple 

During our neurosurgery appointment, Beckham’s surgeon asked me when I planned to return to work and how I was feeling about it.

I told her the truth: I’m anxious and overwhelmed by the thought of it.

My maternity leave ends in about a month, but I’m strongly considering reducing my hours because I don’t know how we’re realistically going to juggle my work schedule with everything Beckham needs:

There are specialist appointments. Weekly physical therapy—with the prospect of more therapies being added as he grows. Cathing every two to three hours. Medication. Making sure we have enough medical supplies. And all of the unexpected things that inevitably come with having a medically complex baby.

His neurosurgeon acknowledged how much there is to manage and told me that the first year is incredibly busy, but that the frequency of specialist appointments should hopefully begin to slow down a little as he gets older.

But even knowing that our calendar may not always be quite this full, it doesn’t change the reality of where we are today—or the fact that becoming Beckham’s mom has changed what our family needs from me.

And we haven’t completely figured out what that looks like yet because there are still so many unanswered questions:

How am I going to balance work and home demands? Who will watch Beckham? Will they know his cues—what he needs, when he’s uncomfortable, and when he needs to be cathed? When will he be accepted onto Medicaid? Will we qualify for a program through a home-health agency where I could potentially be compensated for providing his care at home?

And somewhere in the middle of all of that uncertainty, we’re also just trying to enjoy our baby.

Because despite everything I’ve written above, Beckham is doing so well.

He is smiling. He is cooing. He watches us move around the room. He brings his little hands to his mouth. He kicks his legs. He nurses like a champ. He is alert, active, growing, and becoming more expressive every day.

His MRI gave us wonderful news. His neurosurgeon is happy. His development is on track in so many areas. And soon, he’ll have a physical therapist in his corner helping him build on the movement and strength he already has.

There is still uncertainty. There are still hard days, frustrating phone calls, and more appointments than I can count.

But right now, there is also so much to be grateful for.

And as we figure out what comes next, we’re trying not to let all of the logistics surrounding Beckham’s care overshadow the most important part of all of this:

He is still just our sweet, happy little boy—and we are incredibly proud of how well he is doing.