Team Remyngtyn

04/27/2026

It's our little hero's birthday!!!!! Let's leave him wishes and I'll read them to him tonight 🫶

04/22/2026

04/22/2026

There has been a lack of recent updates from us, primarily due to Remyngtyn's stable condition and my own post-operative healing process. Ten days after surgery, my doctor confirms that I'm healing as expected, though my body feels extensively bruised. Our schedule is set for a busy day with multiple appointments, including neuromuscular, infusion, hematology, ophthalmology, and consultations with an epileptologist and a sleep specialist for Remyngtyn's new nighttime oxygen therapy mask. Remyngtyn, however, is in excellent spirits to begin the day.

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04/05/2026

This week has been quite eventful, fitting in numerous activities during Spring Break. We've had the pleasure of meeting the Easter Bunny, visiting parks, celebrating birthdays, and marking a special milestone for baby sissy, who turned 3 while visiting Nana. Although it's been a whirlwind, every moment has been enjoyable. Tomorrow, I'll be undergoing a mastectomy, which will temporarily keep me occupied, but I'm confident it's worth it to ensure I can continue being present for my children and supporting Remyngtyn in his endeavors.

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03/24/2026

Today marks a momentous occasion for Remyngtyn, who has successfully reached 90 days without seizures, a feat not accomplished since October 2023.

03/13/2026

Notable advancements have been made this week. Meetings with Remyngtyn's epileptologist and sleep specialist have yielded promising results. According to the epileptologist, Remyngtyn's seizure management is currently on track, with a notable increase in seizure-free days following the medication adjustment. The doctor views going over 10 days without seizures as a significant achievement. Although the ultimate goal is complete seizure freedom, recognizing the potential challenges in attaining this objective is essential; nonetheless, the current progress is encouraging. The sleep specialist has proposed adjustments to Remyngtyn's daily schedule, with potential medication changes if necessary. As Remyngtyn adapts to new wakefulness patterns with brief rest periods, addressing nighttime sleep difficulties is crucial. Both doctors are optimistic about the progress made so far.

Fortunately, Remyngtyn has recovered sufficiently and is no longer complaining about back and hip pain following the accident. Unfortunately, Baby Sissy still experiences back pain at times or becomes miserable when moved in certain ways. We are extremely thankful that the injuries were not more severe. We have recently purchased a new SUV, and the kids have mentioned it has big shoes to fill. While we do not have any extensive trips planned at the moment, we do have some smaller trips scheduled for the summer. For those inquiring about the damage, the Traverse required $28,541 in repairs, with eight snapped frame welds and the frame shifted almost two inches, which highlights the impact's severity.

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03/07/2026

This past week has been incredibly eventful, and we've been working diligently to catch up. On February 27th, our vehicle was involved in a collision when it was struck. Thankfully, the two younger children who were in the vehicle with me are alive, albeit with injuries. The emotional impact of this incident has been significant for all of us. The Traverse, having been our reliable companion on numerous journeys, including a memorable coast-to-coast trip, held immense sentimental value. The children are finding it challenging to come to terms with its loss. For context, I've included photographs of both vehicles involved, which illustrate the severity of the impact and the remarkable resilience of the Traverse.

Remyngtyn's virtual meeting with his Saint Louis-based neurologist revealed that his condition remains static regarding seizure activity, allowing for a deeper exploration of other aspects of his case. A significant outcome of this consultation is Remyngtyn's upcoming involvement with the Undiagnosed Diseases Network, underscoring the complexity of his condition beyond the answers we've already uncovered. The neurologist reviewed Remyngtyn's latest diagnostics, including EEG, MRI, EKG, and PET scan results. These tests highlighted an atypical response to seizures, with brain activity slowing critically and heart rates dropping during episodes. The MRI and PET scan findings further complicate the picture, showing brain damage that doesn't correlate directly with seizure activity and is expanding. Thus, despite considerable investigative work, many questions remain, necessitating further exploration.

02/27/2026

Where do I even start? Mr. Remyngtyn's progress has been nothing short of remarkable. I've been informed multiple times over the past few weeks about his excellent performance in school. However, his latest update truly floored me. During a math exercise, students were given simple addition and subtraction problems, such as 1+5=6 and 7-2=5. While most students relied on counting aids, Remyngtyn was able to solve the problems mentally with impressive accuracy. This is a significant improvement from just six months ago when he struggled to count to 5. His hard work and dedication, combined with the school's efforts, have paid off. I advise fellow parents to remain steadfast in their support for their child, even when faced with skepticism from professionals. Every child will reach their milestone when they are ready.

02/23/2026

For parents, spouses, and loved ones of those with epilepsy

02/22/2026

I would like to extend my sincere gratitude to The Crossing Church and the No-Limits Special Needs Ministry for their exceptional efforts in making Prom Unlimited a memorable experience for Remyngtyn. Throughout the evening, Remyngtyn demonstrated unwavering enthusiasm, dancing tirelessly until his legs could no longer carry him, briefly pausing, and then resuming with unrelenting fervor. The pinnacle of his evening was undoubtedly the balloon drop, following which he delightedly played amidst the balloons. His thoughtfulness was evident as he collected balloons to bring home to his sisters who were unable to attend, showcasing the kindness of his heart. I also appreciate Matthew's remarkable poise in accompanying Remyngtyn throughout the evening, ensuring his smile remained intact. Special thanks to Jayce for being part of Remy's special night, and to Marlie, whom Remyngtyn considered the prettiest girl of the night.

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