Benjamin’s Bladder Exstrophy

09/25/2026

Psalm 41:3 “The Lord sustains them on their sickbed and restores them from their bed of illness.”

We’ve been praying for awhile to find some way to keep Benjamin healthy. It seemed whenever he came down with an illness whether it be strep, RSV, or a simple cold, he would fall into the hospital. If y’all have been following his journey, you know that he’s been in and out of the hospital, mostly with UTIs.

But we’ve learned that some of those hospital stays weren’t caused by true UTIs. While most cultures did come back with bacteria growth, there have been a few times where the cultures came back inconclusive or clean. Yet Benji was in extreme pain and showed almost every typical UTI symptom you could think of.

So what gives? 🤷🏻‍♀️

Speaking with Benji’s Urologist and his surgeon since birth, we found out that viral illnesses, like COVID (which Benji did contract recently) can cause the urinary system to freak out. This can lead the patient to feel like they have a UTI! 😱

In the past we scratched our heads wondering why Benji was in so much pain, with really no viral illness symptoms- yet popping positive for one- and having mostly UTI symptoms- yet no bacterial growth.

Looking at the research behind the connection between illnesses and the urinary system, especially in males, it actually does make a lot of sense.

But what do we do about it?

How can we PREVENT Benji’s urinary system from reacting horribly to just a simple cold? Because we know we can’t keep Benji away from illnesses. While we have limited his social interactions and controlled public spaces as much as we can, we aren’t going to keep him in a bubble. We also understand that part of building up immunity is being exposed to the things that make you sick.

BUT I wasn’t willing to exhaust him and potentially cause more damage in his little toddler body than has already happened. My little guy has already been through enough! I have never thought we needed to consult an immunologist but I have believed there had to be something more going on and something we could do to help.

We started giving zinc for its anti inflammatory properties for the prostate and urinary tissues, and of course the way it boosts the immune system. This allows Benji’s body to focus on the viral illness.

The Urologist also mentioned incorporating more probiotics into Benji’s diet. We usually eat pretty healthy and we do like to experiment with little home made remedies like fire c***r or fermented honey garlic. Recently, my husband started making kombucha and it’s soooo good! And SO good for you! 👌🏻

Combining pineapple and mint, we created a special blend of kombucha just for Benji. He absolutely loves it and gets a glass with supper every day. Some of his other favorite snacks that help are live yogurts and daddy’s home made rosemary sourdough crackers! 😋

Recently Benji did become ill BUT he didn’t end up in the ER. We could tell his urinary system was on the fritz and he had come down with a minor cold. But it seems combining the zinc with probiotics has helped tremendously in allowing his body to fight off infections!

Thank you God for giving us the means and ways of education to help our Benji and thank you for continuously showing your love and faithfulness in healing. 🧡✨

09/19/2026

✨ Praise God ✨

Recently Benji caught a cold. From where, doesn’t matter. But what DOES matter is he didn’t end up in the hospital!!!

Hallelujah! 🙌🏻🙌🏻🙌🏻

Psalm 41:3 “The Lord sustains them on their sickbed and restores them from their bed of illness.”

We’ve been praying for awhile to find some way to keep Benjamin healthy. It seemed whenever he came down with an illness whether it be strep, RSV, or a simple cold, he would fall into the hospital. If y’all have been following his journey, you know that he’s been in and out of the hospital, mostly with UTIs.

But we’ve learned that some of those hospital stays weren’t caused by true UTIs. While most cultures did come back with bacteria growth, there have been a few times where the cultures came back inconclusive or clean. Yet Benji was in extreme pain and showed almost every typical UTI symptom you could think of.

So what gives? 🤷🏻‍♀️

Speaking with Benji’s Urologist and his surgeon since birth, we found out that viral illnesses, like COVID (which Benji did contract recently) can cause the urinary system to freak out. This can lead the patient to feel like they have a UTI! 😱

In the past we scratched our heads wondering why Benji was in so much pain, with really no viral illness symptoms- yet popping positive for one- and having mostly UTI symptoms- yet no bacterial growth.

Looking at the research behind the connection between illnesses and the urinary system, especially in males, it actually does make a lot of sense.

But what do we do about it?

How can we PREVENT Benji’s urinary system from reacting horribly to just a simple cold? Because we know we can’t keep Benji away from illnesses. While we have limited his social interactions and controlled public spaces as much as we can, we aren’t going to keep him in a bubble. We also understand that part of building up immunity is being exposed to the things that make you sick.

BUT I wasn’t willing to exhaust him and potentially cause more damage in his little toddler body than has already happened. My little guy has already been through enough! I have never thought we needed to consult an immunologist but I have believed there had to be something more going on and something we could do to help.

✨Here comes zinc to the rescue! ✨With its anti inflammatory properties for the prostate and urinary tissues, and of course the way it boosts the immune system, it allows Benji’s body to focus on the viral illness.

This past week Benji did catch a cold. He got snotty, ran a slight fever, wanted snuggles and snacks, and was a little miserable. BUT NO ER VISIT!!!

His body did become a little inflamed. We could tell because he got a little constipated, his urine became a little dark and smelly, his lower back/kidney areas were sore, and the scar tissue around his privates/ surgical sites became red. But none of it was as bad as when he became sick in the past or when he’s had true UTIs!

The Urologist also mentioned incorporating more probiotics into Benji’s diet. We usually eat pretty healthy and we do like to experiment with little home made remedies like fire c***r or fermented honey garlic. Recently, my husband started making kombucha and it’s soooo good! And SO good for you! 👌🏻

Combining pineapple and mint, we created a special blend of kombucha just for Benji. He absolutely loves it and gets a glass with supper every day. Some of his other favorite snacks that help are live yogurts and daddy’s home made rosemary sourdough crackers! 😋

Thank you God for giving us the means and ways of education to help our Benji and thank you for continuously showing your love and faithfulness in healing. 🧡✨

09/04/2026

PMTS- Does Benji have it?

Pediatric Medical Traumatic Stress or PMTS became a small topic of discussion between his pediatrician and I. During his wellness appointment, many questions are asked about speech, hearing, eyesight, of course his medical history but also about how he plays.

What is it? PMTS is a set of psychological and physiological responses in children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences.

It can show up as flashbacks, nightmares, being afraid of and avoiding doctors offices or people in that environment, being easily startled by things, trouble sleeping, and of course anxiety, depression, mood swings, or feelings of detachment.

But it can show up in other ways, like through play.

While I’ve never been worried about it at this point, I’ve noticed Benjamin does play in a very specific way. He’s got an incredible imagination; he loves Spiderman Miles Morales and Lightning McQueen or really any car or truck. The way he plays with these characters though is always the same.

🚙 A car is driving- the car crashes (usually his car)- the ambulance(usually mommy) has to come save him- all is well and the crashed car is fixed- 30 seconds later BOOM it crashed again- the scenario is on repeat.

🦸‍♀️ Even Spidey needs saving (his character)- Spidey gets hurt-Ghost Spider (mommy) comes to save the day- Ghost Spider asks if he’s okay, gives a bandaid, checks him out and makes sure all is well- they both go off to save people together- but then Spidey gets hurt again and GS needs to come save him- repeat.

🦕 🦖 the same is with dinosaurs, stuffies, action figures, whatever Benji is playing with.

Trauma
Aid
Repeat

I had always figured it was Benji coping with all his medical “trauma.” I put quotes around that because Benji has always taken his illnesses, hospital stays, and surgeries really well. Once he starts to feel good, he seems to treat it like a little vacay and loves the attention.

But he’s only a toddler and while he’s super smart and communicates better than any other toddler I know (yes I’m biased) and he’s very in tune with his body, I still may not know what’s going on in his brain. He may not even know.

And that’s okay. I’m very happy he is working what’s happened to him through play and we’ve been told it’s very normal.

The fact that there’s always a “hero” in his stories (it’s important to know I always allow him to be the “director” of his stories) means he’s confident someone with come and save the day. So, the pediatrician assured me that his daddy and I are doing a good job at letting Benji feel we will always be there.

There was nothing concerning about his play. Perhaps we can try to help “direct” or “produce” his stories in a different direction but never in an aggressive way. If this is how Benji wants to play, it means this is how he’s coping and his little brain needs to go through the motions of it.

Right now, for Benji, there’s no concern for PMTS but I’m curious to see if other hospital kids/ Bladder Exstrophy Epispadias kids have had similar imaginative play experiences. 🤔

I will point out that while most of the time Benji is the “hurt” or “lost” in his imaginative play, sometimes he does want to be the “hero.” Often times when we specifically play something like “going to the doctor,” he wants to be the doctor. He’s in charge and he’s helping the stuffies feel better.

His favorite car right now is an ambulance, he carries it with him EVERYWHERE! So maybe we’ve got a little future EMT? 🚑 ✨

08/30/2026

This recently came up in a BEEC (Bladder Exstrophy Epispadias Complex) group… how do I cover up the exposed bladder?

Well, when Benji was just an infant and his bladder was still exposed (for 4 months!!!) we needed to keep it clean and protected.

Who has time to cut cling wrap squares every diaper change? Not me… so I found a solution that worked for our family and may work for yours.

About every two weeks, I spent a morning folding, cutting, and placing these little squares in between index cards and inside a little box. I had one for home and for his diaper bag.

If you know me, you know I like to keep things simple and organized for when I need it. So I didn’t mind putting on some music and spending an hour getting this done for my son and his diaper changes. It’s tedious work but it was worth it.

BE diaper changes during this stage can be messy! So we tried to make it quick. (Just wait till you’re fiddling with a catheter if your baby needs it 😂)

So happy I learned this trick!

08/26/2026

Way to go Dr. C! 👏🏻✨

A new surgical option is giving our pediatric urology team even more ways to care for kids with complex conditions.

Dr. Chad Crigger and our team recently performed South Carolina’s first pediatric single-port robotic surgery, using the technology for a complex bladder reconstruction.

With just one small incision, the approach allows surgeons to perform complex procedures with greater precision while reducing scarring and supporting recovery.

It’s an exciting step forward for pediatric care in our state and another specialized option available to kids and families closer to home!

Read more: https://musc.co/4qNLcWf

08/20/2026

🧡🧡🧡