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.…
Disclaimer: The author of the content below is not a medical professional and does not have any medical training. As such, the contents on this page, including text, graphics, images, and any other material are for informational purposes only. The Content is not intended to be a substitute for professional…
Disclaimer: The author of the content below is not a medical professional and does not have any medical training. As such, the contents on this page, including text, graphics, images, and any other material are for informational purposes only. The Content is not intended to be a substitute for professional…