July 3, 2025—He Went in the Store
The second IVIG appointment was scheduled for ten this morning. Since we had stayed overnight in Tulsa, the drive was only about fifteen minutes, which meant we were able to sleep in a little and didn’t even leave for the infusion center until around 9:15 a.m.
Before I go any further with what happened today, I want to backtrack for a moment to the night before.
After we left the infusion center, I drove us through a Chick-fil-A. I figured Osiyyah might eat during the short drive and be ready to get into a bed and relax as soon as we arrived at our host’s house for the night. Sure enough, he managed to eat two chicken sandwiches within those fifteen minutes in the car.
When we arrived at our friends’ house, Osiyyah carried his overnight bag in and got himself situated in the back room. As expected, he was quick to get into the bed and most likely stay there—this is what has been his normal protocol for the past 4 treatments. He did fall asleep and slept hard for about 3 hours. This seemed a little bit different than past treatments, where he has acted more restless for some hours after the IV.
I made a note of this in my brain to look into if there are different reactions to different brands of IVIG. The previous 4 have been by Privegen and this brand is Octagam.
Back to today.
Once this treatment was finished, we needed to head back to our friends’ house to pick up Osiyyah’s twin sister, Yophiyyah, who had arrived the night before from a trip. She messaged me asking if she should make Osiyyah a couple of sandwiches, since she was making herself lunch. I told her yes, and that we should be there in about fifteen minutes.
When we pulled up to the curb, Osiyyah immediately began demanding that he stay in the car. I wasn’t surprised—after the final infusion on day two, he’s usually laser-focused on getting home. But it was summertime in Oklahoma, and there was no way I was going to leave him in the car—not for fifteen minutes, not in this heat, and not in his current mental state. And I needed about that amount of time to gather our belongings and load the car.
I took a deep breath, opened his door, and told him he needed to come inside. I reminded him there were sandwiches waiting. He shouted something about me being rude, got out of the car, jumped up and down in one of his fits, but then, surprisingly, walked inside.
I paused and stood for a brief second, watching him, and just shook my head at the strangeness of this condition. Sometimes I can see the symptoms I so often read about in my research—things like the brain inside his head working against itself.
He did eat both sandwiches once inside, and afterward, we loaded up and started the hour-long drive home.
We had to make one stop at Walmart on the way back. I waited until we were exiting the freeway to mention it—just said that Yophiyyah would run in quickly and I’d stay in the car with him. She and I were used to this arrangement. Osiyyah hasn’t stepped foot inside a store to shop with us in quite sometime—at least six months, maybe more. There was a time when he’d always shop with us, help bag the groceries, and even load the car.
But this time?
As we parked, he unbuckled his seatbelt and started to get out.
Yophiyyah and I looked at each other with a quick glance—silent, wide-eyed. Neither of us said a word. We were in quiet shock.
He walked alongside us to the entrance, waited while we grabbed a cart each, and followed us inside. As we walked up and down the food aisles, he placed an item in the cart. He was shopping.
I picked out a small container of ice cream for the ride home, and so did he. He grabbed some chocolate milk and a few snacks for the car.
It felt… normal.
We drove home, all snacking on our various grocery finds, music from our shared playlist filling the car.
When we got home, he wandered to his room, changed clothes, and got into bed. He napped again for a few hours, then woke up, ate a little more, and went back to bed.
Each positive event is a moment—not a sign that he’s healed, not a promise this illness is loosening its grip. Just a moment. But still… a moment that shows me he’s still in there somewhere.