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BerBen The Brave, San Antonio, TX (2025)

09/22/2024

Update on Benjamin:

He’s doing SO GOOD!!!

He was a trooper through his MRI surgery. Thankfully they were able to manage his sedation with no vomiting or seizures, so they were able to use the LMA vs full blown intubation, which I was so very thankful for!

He came out in recovery doing well. Took him longer to wake as we are now realizing he may be a little too sensitive to Precedex. We had problems with it during his Nicu intubations, causing bradycardia issues. This go around, he took a few hours to wake vs the 30mins to an hr they were expecting. We’ve decided to put that one on his “allergy” list for medications after speaking with the anesthesiologist.

We opted to come home and manage his care there vs inpatient as there were a lot of respiratory cases and his history of catching things while admitted.

He was higher than a kite for the day he came home, which was super fun! He always takes a hit with his hypotonia after procedures and anesthesia so he has been working to get back to his “normal” mobility harder than ever!!!

We should have the mri results soon and will know what his prognosis looks like from all his seizure activity and the damage from how many times he got sick when he was younger.

We are so thankful for all the prayers, kind words, and all the staff at Methodist Children's Hospital. Yall are the real MVP’s and we appreciate you!

He’s ready to take on the world again and do big things! We love our sweet boy so much!

(Picture taken after discharge, needless to say he was happy to be going home to see daddy, sisters, and my parents!)

08/28/2024

Calling all our prayer warriors….

Benji will be having surgery this morning. He will be getting ear tubes and having a urological related surgery. Due to the degree of his sleep apnea, he will have to be intubated for the procedures for his anesthesia. This scares the hell out of me as his last time he was intubated, when they tried to extubate him, he kept clamping down and flatlining. We are praying that all goes well, the surgeons do exactly what is needed and everything goes well and without issues or difficulties.

We love our sweet boy so much and are praying so hard for him right now. Please join us in prayer, positive vibes and any good things to be sent his way. He’s truly a warrior and we know he will do great!

06/10/2024

We are truly blessed!

When we started off on our journey with Benji, we knew having a preemie born at 30 weeks would come with challenges, most we knew nothing about until we had to! Having a special needs child is something that has embarked us on our toughest, yet most rewarding journey! We get to celebrate not only the big milestones, but the day to day accomplishments that to some may not seem like a big deal, but to us? Gosh, they’re so exciting!

We had always thought some of Benji’s difficulties, especially his epilepsy, sleep apnea and his hypotonia, were because of his prematurity and having been so sick so many times. We thought his chronic lung disease was due to his respiratory trauma and all he had been through. Finding out through genetic testing that these are struggles he would have faced, even if he was a full term baby, was such a shock to us! These struggles are genetic and won’t be “going away” but we will help him learn to manage and overcome what he can so he can live his best life! He has his days, good and some not so good, but there are many things lately that have helped us have so many GOOD days!

I’d like to take a moment to thank CPATHtexas for helping us obtain so many different medical supplies for Benji and things that also will help us on our journey with Hope managing her ASD diagnosis. Insurance only covers so much and things get expensive. When you are blessed with something like this wheelchair for our sweet boy, who gets in it and says, “mama! I go go!” when we are out riding our bikes, just brings my mama heart joy! I cannot thank this wonderful organization enough!

I’d like to encourage you all to take a look at their site, read up about their organization, and check out their supply closet, especially if you or someone you know is in need of medical supplies, mobility devices, etc! Their site is: https://cpathtexas.org ! I’d encourage you to reach out to Nobel and let him know Benji Bernal sent you their way! They also take donations if you know of anything needing to be passed on to bless another family! We were able to pass on a medical stroller today that a mama had blessed us with while we were waiting for Benji’s kidkart! Makes my heart happy knowing another kid is going to get something to help them be mobile, something no child or family should ever have to struggle for!

Check out our sweet guy, in his chair we received from this amazing organization! We added his FireFly To Go seat and voila! Benji gets to GO Go!!!

💗💗💗

05/01/2024

Benji had his urology appointment today.

After his back to back antibiotics for chronic ear infections (10 so far since November) which we will be seeing ENT for in July for possible tubes, he has developed a reoccurring yeast infection.

When he had a uti that landed him in the PICU back in December, a kidney ultrasound showed he had pelviectasis in his right Kidney. Follow up US showed it had resolved however they are still concerned about him either having urine reflux and/or damage from having had so many septic work ups that required urine samples via cath that were damn near impossible to get.

They have ordered a VCUG procedure with contrast in the next few weeks to see what’s going on and if surgery is needed.

Our sweet guy has been through so much already and we are praying that he doesn’t need another procedure/hospitalization.

Despite it all, he still remains his hammy little self!

03/17/2024

This memory popped up from this day last year.

I hated seeing it as it was such a scary time for us. Coughing up blood multiple times was not something I ever want our sweet boy to go through again!!!

Benji was readmitted to the PICU and had to undergo an emergent bronchoscopy and was on heavy respiratory support and meds for a while from this.

It was also hard because this caused us to miss Faith’s 6th birthday, which hurt because we had already missed her 5th birthday being in the hospital with premature labor!

Despite all of Benjamin’s new diagnosis, and having to up his seizure meds and having to shorten his seizure protocol with rescue meds from 5 mins to 2-3, I am thankful we are home and he’s helping plan an EPIC birthday party for big sister tomorrow!

He’s also having loads of fun helping with our leprechaun traps!

Peep the pic in the comments comparing his growth and physical change from last year to today! We are truly blessed at his progress and growth. As his neurologist said, his new diagnosis is not a limit but rather a tool to aid us in his treatment to help us help him live his best life!

We love you sweet boy!!!

03/14/2024

Calling all our prayer warriors for Benji!

We had OT this morning and he had a seizure, lasted about 1&1/2 minutes but his longest and worst yet. Waiting to hear back from his neurologist about bringing him in.

Praying this doesn’t continue and he has a strong rest of the day.

We love you sweet boy!!!!

03/11/2024

Our sweet boy!

This time last year, you unexpectedly coughed up blood multiple times, resulting in an unanticipated PICU stay, a bronchoscopy and further respiratory treatment.

A year later, you are on 6cm H2O on a ventilator via mechanical cpap therapy via a ram cannula from 2L O2 nasal cannula support from a concentrator.

We also have a new, terrifying, medically uncharted diagnosis of WDFY3 related syndrome. Only 73 cases reported out of 8 billion population statistics for 2023.

We are thankful for his developmental pediatrician jumping on board with the genetic testing and getting us aligned with the best geneticist and also for Boston Children’s Hospital and their clinical studies requesting Benji’s participation.

Our boy is a warrior. A fighter. And the definition of resilience but man, this new diagnosis threw us for a loop!

This gene is responsible for brain development and explains his speech issues, his seizure activity and his hypotonia and gross motor skills delays!

We are praying for miracles right now!!! lord bless this sweet child of ours!!!

03/09/2024

Benji and his sisters had some fun the other day playing in our backyard!

He’s doing so well walking assisted… does amazing in his gait trainer too… his PT and OT say he’s so close to hopefully walking independently!!! We know he will in his time!!!!

Enjoy the video mama made of all the fun had!

03/03/2024

Momma says, “Hey bubba, smile for me!”

Little man understood the assignment and aced it!

03/03/2024

Only in Texas would the following conversation happen:

“Gosh, I’m so sorry, I didn’t see you, I was busy eating and enjoying my barbacoa taco. Those airbags hurt but man that taco was delicious!”

My father and I had driven to Austin to pick up some medical supplies being donated to us for Benji from CPATHtexas We picked everything up, we’re headed back to San Antonio and on i35, ran into its notorious traffic. There was a vehicle in front of us that slammed on its breaks, we hit ours and stopped in time. Then said taco enjoying driver, who later confirmed he was going 70+mph, rear ended us, sending us into and hitting the jeep we had just successfully avoided hitting….

We are sore and achey, but so blessed the kids weren’t with us and things weren’t worse!!!

(Ford truck is my daddy’s, smashed up Nissan is taco dudes….)

02/29/2024

Our long man…

Almost 35 inches tall at 23 months old. What a big boy considering he was born at 16 inches long!

He’s growing and thriving even more now thankfully to the vent/cpap respiratory support…

The 5 ft corrugated tubing for his heated circuit is a beast to navigate as he is a restless sleeper but man, he is doing big things!!!

We love you dearly sweet boy!!!!

02/26/2024

Benji’s up to big things!!!

He had a pedi check up on Saturday and for the first time in almost 23 months, he stood on the big kid scale! Granted momma had to hold both his hands, but we will take it! He was so proud of himself and so are we!

His ears look better for now, infection wise. Fluid is still present but hopefully we can stay infection free for now….

He is also allowing us to hold his hands while he takes steps. His hypotonia and gross motor skill delays in addition to all he has been through medically have kept him from walking Independently yet, but this is HUGE for his mobility!

Keep on thriving, sweet boy! We love you so much!

BerBen The Brave

09/22/2024

08/28/2024

06/10/2024

05/01/2024

03/17/2024

03/14/2024

03/11/2024

03/09/2024

03/03/2024

03/03/2024

02/29/2024

02/26/2024

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