Jordan was admitted to CHLA today. She fell while descending the stairs at home and hit her head. Given her history with head trauma, we were instructed to bring her in to the hospital even though she was fine after the fall. She’s resting comfortably but she’s going to be in the hospital for at least a few days while the doctors run tests and observe her to try and explain the change in her physical condition.
Her motor skills have deteriorated significantly in the past few days. Her legs were practically useless for much of the weekend. They were about as useful to support her weight as overcooked spaghetti. We think the deterioration might be related to changes in her medication. As the dosing increased she lost more motor function. She also became very listless. On Sunday, she was only half-present most of the day, staring up at a corner of the room glassy-eyed with a dull smile. Instead of her usual chattiness, she’d sit quietly. To be truthful, it was very hard for me. It’s jarring when Jordan isn’t Jordan.
By Monday she had to crawl from room to room, and her arms began to weaken. She collapsed in the upstairs hallway while trying to crawl to the bathroom. We consulted with her neurologist immediately and we pulled her off the new medication. She seemed to be bouncing back somewhat yesterday, though she wasn’t able to go to school. Today started off well. She felt strong enough to walk on her own two feet with some help. But she lost her balance coming down the stairs. She hit her head so hard her right eye is black and blue. She had a cat scan tonight and we relieved to learn there’s no sign of internal bleeding. She’s still listless and she fades in and out of sleep, but she seems to be doing well otherwise. We’ll have a better sense in the morning when she can be evaluated by her medical team.
Thank you to all who have reached out to see if we need anything. We’re all doing ok. I’ll report in with new information when I have it.