What a year! At last check in, Ian was experiencing some issues with breakthrough seizures. It was normal for him to have these about once a year- with him being a kid and still growing, naturally, his seizure medications needed to be adjusted to accommodate this change. But with 2025, we found we were having the hardest time getting the… Continue reading Ian Update
Ian had a routine follow up appointment with neurology today. Currently, Ian is stable, but that wasn’t the case for the previous 2 months. Ian was having what is known as “breakthrough absence seizures.” He was seizure free for about a year, when all of a sudden, he began experiencing staring spells consistent with what his seizures tend to look… Continue reading Ian Update
I get so eager to expand on my sense of self. As a child, I always tried being other people I thought were “cool” or “popular.” I always thought other people felt like I wasn’t enough, which left me internally feeling that towards myself. But as I’ve gotten older, as I sit here as a woman embracing her 30’s full… Continue reading Reflecting
I think I speak for everyone when I say that I have no idea where the days have gone. Everything seems to blur together anymore. We are already halfway through the third month of the year and almost three months after I turned 30. I went out with a friend shortly after my birthday, and she said to me that… Continue reading Life Update
Embracing 30 I turned the big 3-0 almost 2 weeks ago. A milestone. A new chapter. A new decade. A chance to reflect on my life thus far and make any changes necessary to get to where I want to be. What’s nice about my birthday being at the end of December is that New Year’s is just around the… Continue reading 30
Ian had a neuropsych evaluation on November 26th, and we got those results on December 9th. Ian was officially diagnosed with a mild intellectual disability. While not surprised with the findings, something about hearing it out loud just made my heart sad. Ian was always behind compared to other kids his age, but before the brain injury, he had such… Continue reading Ian Update
It’s been a while since I sat down and wrote on here. I decided to just make the time and space for it. I have no real direction on where this is going to go or be about, but here we go anyway. All in all, life has been pretty good. Ian recently had his routine follow up MRI and… Continue reading No Direction
September 14, 2022. The day Ian’s life, and ours, would be changed forever once again. The first time was his inital diagnosis. This time, it was the beginning of a new medical journey. On this day two years ago, we went in for Ian’s routine MRI. We had been getting them every 3 months since July 2019, so we were… Continue reading Two Years Since Brain Injury
Ian had a couple of doctor appointments this past week. On Tuesday, we added a new specialty in the mix and saw ENT for the first time. Around December, Ian developed a cough that we had the hardest time getting to go away. Around the same time, Ian was admitted to the hospital for breakthrough seizures, so they tested him… Continue reading Ian Update
When Ian was diagnosed with his brain tumors in July 2019, we have gone down to Children’s every 3 months since then to get new images of his tumors. So, today was one of those routine scan days. We did just get images a few weeks ago when he needed emergency surgery with his shunt placement, but today’s scan was… Continue reading Ian Update