Monday, October 20, 2025

Let’s Catch You Up on Bradley

 I guess we should just get into Bradley, because there is always a lot to talk about with him. Sometimes, the hits come so hard and so fast that I need some time to get through it all and there is so much that there are gaps in coverage. 


As some of you know, Bradley had his first seizure in 2013. It was Grand Mal, and he stopped breathing. I’ve talked about the trauma of that day, but after it was all said and done, it took another seizure before he was put on meds. Fast forward over the years into 2018 when Bradley stopped sleeping at night. All the intermittent seizures he would have at night seemed to be catching up. By 2020, I was zombie mom…by 2021 I was missing important stuff for the girls and Eric. By 2021, I knew that Bradley was truly having night time seizures and that I wasn’t seeing behaviors. If he didn’t seize, he was having seizure spikes. At the time, that was just explained to me as activity all night long, no wonder he was exhausted, all the time. 


August 26, 2023. Our world changed again. Eric called out from the bathroom and we were completely unprepared for Bradley having a Grand Mal seizure. Ten years apart, but one all the same. The seizure rescue med was mostly ineffective, we didn’t know it would take some time to work…it did - but seeing your kid seize - well, that lasts your lifetime, his lifetime and that of someone not yet born. We would also quickly learn that rescue squads were really not prepared to do anything for seizures once the initial rescue med was given. Worse, the ER was a complete waste of time. The on-call Neurologist wasn’t much better either, his comment to me was: “people with Epilepsy just have the occasional seizure.” While that was mildly reassuring, it was still rattling to see your baby have another Grand Mal seizure. 


That week, he would have two more: a grand Mal seizures, a petite Mal seizure, and a few Absent seizures. The second Grand Mal would bring a dosage of an incredibly powerful and exhausting anti-seizure medication and while he was trying to find his way through that one, he was slowly climbing dosage into his everyday dose on a medication that took months to do. The slow climbing dosage a result of the consequences that he could have had very serious skin issues if we didn’t. By December, Bradley had reached the dose he would maintain, and had gotten a cold that mimicked, but was not pneumonia, dodging another bullet so to speak in the world of Bradley’s health. 


There was enough tragedy in 2024 that it was a Blessing that Bradley’s health stabilized for the most part. Looking back now a I realize that he was likely seizing quite a bit at night, or at least the seizure spikes were really ramping up. During the day he was exhausted and his behaviors were quickly deteriorating so that the end of his 8th grade year was such a challenge that by summer, not fighting to get to school everyday was a relief. October into November found more seizures and more meds, heavier meds. And it truly was the worst year, and as close as we were to ending the year - life was not done challenging us. Bradley would get hit with a reflux/choking episode that would bring a fever, cough and an aspiration pneumonia diagnosis. Two strong antibiotics he’d never had later, he was showing no signs of being sick two days later. But we continued the meds as instructed to be safe - but now his seizures were coming closer and closer together, and always just a bit longer. Ten days before Christmas he started clustering and his rescue med was taking almost an hour to calm things down. Thinking he was okay, I took him to school to keep his routine, he did okay there but as I walked up to get him after school, I saw the next seizure hit as he stepped off the curb, I rushed to grab him and eased him safely to the ground. When Eric got him he sat with Bradley as he clustered, one after another, every 2-3 minutes like timing contractions, hideous. While he and Sydney timed, I was making the on-call Neuro at UCLA my new best friend. 


By three Tuesday morning we were on the way to UCLA, at the ER, the team knew his name and I could hear them asking each other “Is that Bradley?” as we worked through triage slowly to allow Eric time to figure out parking. They had an ER room ready for Bradley, two nurses pulling blood gases, Neuro tech on hand for an EEG setup, night shift transferring off and day shift transferring in, all working to get Bradley in, settled and testing quickly in place. From there to the PICU, we would spend one night in a glass box with no bathroom, no food allowed and one pull out bed that Eric and I would swap out from, with one little boy so full of meds he couldn’t keep his eyes open. 


Here is where Eric and I would watch in horror as our child would become unresponsive. Bradley woke enough to move around a bit, but when he got sleepy he folded over his legs, head down on the bed past his lap. I gave him a few minutes to make sure he was indeed back to sleep, and by a few, no more than five. When I eased him back up to lay him back, immediately I knew something was wrong, he had refluxed and vomitted a sizable amount of bright yellow stomach contents (meds - there had been no food for hours). Though his oxygen stayed in safe zones, his heart rate did not, dropping quickly sending alarms through the PICU. First nurse, get the doc to the second  nurse, then a doc and then another - working the problem and trying to get Bradley to respond. 


It wasn’t long; it truly wasn’t, but you know - a lifetime in a moment. We stood at the end of his bed in shock and disbelief, was this truly happening to our boy? Was something that had been quietly on the back burner of his life suddenly going to be the thing that takes him. It’s like standing in a room with every diagnosis he has staring you down and the ones that threatened him as a baby and still stand directly in front of you suddenly stepped aside and here was Epilepsy sneaking in behind them, suddenly full grown and dangerous acknowledging that yes, he could rob us of Bradley faster than anything else if it wanted to. 


He finally opened his eyes and we were able to take a breath, get to him and try to pretend that he hadn’t just shaved years from our lives. Purposefully pushing the fear away so he would have no idea and no reason to be more scared than he already was. After this episode, we moved to DOU  (Direct Observation Unit) where his doctor was fierce and ran the floor with precision and care, and three NPs that were efficient and kind - one had the gentle and compassionate spirit that was so thoughtful, she came prepared with an ultrasound machine in order to place a difficult IV herself because he had already blown four. The Floor Doc kept the teams moving that needed to be going in and out of his room. And when I say teams I mean groups of five or more from: Neuro, Cardio, Anesthesia, Infectious Disease, on top of the incredible crew at MRI that cared for him like he was the most important patient they had ever been given. 


For the first time, we knew that Bradley was very aware of his seizures and they terrified him. He clung to us, his sister, Scooby and his new friend Pig. The boy who never took to stuffies, hung onto Pig and gave lots of sloppy kisses and big hugs. Somehow, we managed to get him home two days before Christmas, it was a miracle in all ways. 


Since then, we’ve had time for him to adjust to his meds so they don’t knock him out as much. In April, we did some testing in a controlled setting, another five days in the hospital, yes - we took Pig.  We had to reduce meds in order to get his seizures to start and then adjust them to get them to stop again. While that is no easy task on either end, at least we know he needs the meds because without them he seizes, and with them he doesn’t. Anyway, we saw one small seizure the first day home; since then, quiet and stable. (mom knocks on her own head as it is harder than wood). 


Bradley was happy to end the school year and so excited to start 10th grade. He is surrounded by the best people that help him grow and blossom at school and keep him safe. His meds are manageable and for now he is stable. He is happy and his personality is exploding. All these signs tell us that likely we aren’t missing seizures while he sleeps and that there zero to minimal spikes as well.  It’s like finding an oasis in the desert, we have no idea how long this stability will last, but we are living in this moment and giving him all the best experiences, nurturing all the relationships we can… storing the beauty of today to always have it to bolster us during the crazy uncertainty that is his life and his future. From former therapists, current paras and teachers, friends attached to the girls and Madison’s church, most recently adding the Miracle League - all together, we are building a community around Bradley of a group of people that love him and have eyes on him when we can’t. They help keep him safe while pushing him to experience the parts of life that he’s missed while trying to get his health to calm down and let him live to his fullest. He’s doing that right now, right before our eyes, and it’s beautiful! 

Sunday, October 5, 2025

Do I Remember How To Do This?

October 5, 2025

It’s been a while since I’ve taken up writing. Life gets in the way no matter how much you want to try and not let it. When the lockdowns happened, I went from an empty house to trying to provide three meals a day, keep up with the house and keep up with Bradley’s sudden zoom schedule. But then when the world started to open up again, Bradley was still home and only Sydney was really out and about making our October activity simply her stuff. Made it hard to blog about Bradley when there was not much new to say and not much time in the day to do it. 


So, here we are, five years later and the world has turned and the world has changed. We’ve all changed. Life is just different than it was. We’ve had to fight, and fight hard to keep him safe and happy and those fights have been big ones. We’ve experienced some incredible highs and some of the lowest moments we could ever imagine. Joy and sorrow in almost equal measure as though receiving them into each hand, like one cannot come without the other. Leaving us with an ambiguous apprehension whenever something wonderful happens, fearing the shoe of loss that is likely to drop. We’ve really had to learn much different lessons than we were ready too, but we’ve come through as a stronger family. 


So I think, I’ll start with an update about Madison and her journey. Madison graduated from High School in 2020, and College in 2024. Now she is working in an Accelerated Nursing Program and will complete that in Aug of 2026. In 2021, I encouraged her to get her CNA license and she began working in Care Facilities eventually taking a position with her company where she began creating Care Plans. All these experiences have helped her prepare and excel in her nursing program. To say we are proud of her and so incredibly happy for her is a complete understatement. She’s found a church home and a wonderful group of friends that seem to truly love her for her and accept her for who she is, and what a true Blessing that is for anyone to experience. She chose to be baptized for the second time, participating in a beach baptism through her church in July. Seeing that moment happen for someone will always be a powerful one and sharing that with her was incredible. It has been amazing to watch her grow into who she is, the strength of her Faith, and the Future she is building for the life she is going to lead. She has remained at home to save as much money as possible, but seems unwilling to get too far from her brother and her Dad with all the health issues they have. 


Sydney. Sydney graduated from High School in 2022, and college in 2025. Between sheer determination and a lot of summer school, she graduated a year early. After her High School graduation, she had the same Nissen Fundoplication that Bradley had to have which has resulted in less illness for her, and that is all we were hoping for as far as outcomes. She chose the same school as Madison and the school chose to give her a generous scholarship so she could live at home, save money, stay on track and heal. Initially, she wanted a PsyD in Psychology. She even was accepted to two potential programs. But Sydney realized a couple things, she might actually want to be a physical therapist, and both schools were so expensive that she wanted to really be sure. Last, she wasn’t sure she wanted to head off when she needed a surgery to rebuild her septum before going, add to it that her brother is going to be having a couple surgeries soon too and her decision to take a gap year was very smart. 


We’ve tried to assure the girls that leaving is okay, that them starting a life elsewhere is not a problem. We’ve never once told them they need to stay home because of health issues for Bradley or Dad, but deep down I know that they are constantly keeping them in the forefront of their plans. At the same time, they are both financially aware of the pitfalls of leaving home and adding huge amounts of debt to finish their degrees. So for now, they are both here at home and pushing to create the best path forward while minimizing debt and enjoying the perks of staying at home where mom still cooks for them. Haha.  


And Sweet Bradley. Bradley left for middle school in 6th grade. He did not enjoy Middle School, which is the most normal and typical thing about him as no kid ever seems to enjoy middle school. In 2024, he went to his first Special Needs Prom at Madison’s church, he was so excited and proud to be in his suit, turns out dressing up might be more fun for him than even his iPad. He had the sweetest Buddy and she made sure that he had the BEST time. He participated in 8th grade Promotion; which was exciting, even sitting through everyone else after his name was called. High School started a little bumpy, but once we got a bus ride going for him he was much happier. He loves his bus aide, and you can tell. A few weeks in, he was given a one-on-one aide (a very lucky break for us as a one-on-one aide was not in his IEP at the time) who understands him and gets him to do more than anyone else at school ever has. After that, Bradley seemed to really start to enjoy and blossom at school. In Feb of his freshman year, he returned to the same Special Needs Prom and while he had fun and loved his suit, he was not quite up for a full night. A whole bunch of new meds and different health issues really held him back quite a bit, but as always, the people around him bolster him and care for him, giving him what he needed and meeting him where he was. This year he is a sophomore and we can see how much he is enjoying school and starting to really grow into his personality and into a whole lot of opinions - typically loud ones at that. But he also is enjoying life more as he is having a time in his life where he just feels better right now. His aide and his LVN took him to his first school dance and our little guy went to Homecoming and had such a great time, even stayed all night. These are the victories we love, these pieces of his life that remind us how precious the good days truly are. His challenges remain and are bigger than ever. Every day is a gift, now more than ever we see and appreciate that part of his life. We find ourselves navigating a very difficult path with incredible obstacles in our way, but we’re dedicated and devoted to Bradley and what he needs so we just keep walking. 


There is definitely more to share but this is probably long enough for today. 😉. 


Until next time friends!