Did you know that epilepsy is the 3rd most common neurological disorder (behind headaches and strokes) and affects around 2.5 million Americans? It's been estimated that 10% of the American population will experience a seizure in their lifetime. Every year there are nearly 181,000 newly diagnosed epilepsy causes in the…
James’ “baby theme” is monkeys. His room is decorated with monkeys. He has monkey blankets. He even has monkey onesies. As a matter of fact, my nickname for him is ‘Monkey Butt’ because he has a set of jammies with a big monkey on the butt. Last year James was…
Stacy met a woman at a local special needs play group who does photography on the side and offered to do a photo shoot of us. I won’t post them all here…there are too many of them…but I will share some of the better ones. …
This was quite the experience. James had an at home video EEG (VEEG) over the past couple of days to record his seizure/infantile spasm activity. He is currently on 4 antiseizure meds to control his seizures and spasms which make him sleep most of the day. We’re hoping that we…
This is interesting, and a bit concerning. One of the parents in an infantile spasms support group on Facebook that Stacy is a part of posted a link to a press release about the FDA approving ACTH for infantile spasms. The press release can be found here: https://www.prnewswire.com/news-releases/fda-approves-hp-acthar-gel-for-the-treatment-of-infantile-spasms-105024204.html I think…
October 15th is Infant Loss Remembrance Day. If you’ve recently stumbled across this blog and haven’t read Our Story, we lost our first son, Jackson, to Trisomy 18 before he was born. It was a very dark time for Stacy and me, but somehow we managed to get through it.…
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