Back by popular demand (one person)… a post from the cincinnatibliss blog. Yes, yes, please stay seated.

Jackson had some inpatient hospital stays over the holidays, directly over Thanksgiving and just before Christmas. Those stays are tremendously stressful, managing both his care with the staff and the logistics of running a family while also holding a demanding job. His increased seizure activity was the driver for both stays. We know, after countless consultations with neurology, that he will never be seizure free. But dozens upon dozens of seizures in a day is different. But, the true light in that sea of darkness was the change in his medication and the fantastic progress that has been made since. Not only have his seizures reduced to a manageable level, he is now more active, talkative, and happier(?) than ever!!! He is verbalizing frequently and moving his head all the time. One of the videos below show this well. It may seem minor to many, but it is exciting and heartwarming for us. And his respiratory health is much improved to boot.

I’ve been thinking about this material change in behavior. Is it solely medication, or is it related to puberty and becoming a teenager? When children enter teenage years, they often become insufferable. But do lissencephaly patients react differently? Our sample size of one says maybe they do. We will likely never know; we can only enjoy it while it is here.

Which brings me to the angst. I’ve written before about the inevitable decline in health that all humans will have, although Jackson’s may be more steep. I cannot help but worry about a shoe to drop, a change in the other direction. My worldview is generally rather positive, but this thought has been nagging. One reason is the fact Jackson is now the Lissencephaly OG (feel free to use that if you see him/us). He is one of the older kids with lissencephaly, a great title but one that cannot be held forever. These thoughts are present in the minds of many. But for now, let’s cast that angst out and enjoy the blessings at hand.