01/25/2026
A bit of an update on Brady... since the very end of September he's had now 15 seizures. He's currently on 3 different seizure medicines trying to get them under control. At fist they were spread out every 3 weeks, but now they are at least once a week. He's had an EEG that revealed nothing. He's had them out of the blue for no reason at all. On Christmas Day, on New Year's Eve, they have been relentless: 3 days ago he woke up, and had a seizure within 15 minutes. I have a zoom call with his neurologist on Wednesday, because one of the medicines are causing some serious anger and aggression. I won't go into details, but it got bad and so they lowered the second medicine back down to a somewhat attainable dose and then added a third one.
In addition to all of that going on, Brady lots a TON of weight. He was/is having some very complicated stomach issues. We've gotten labs done, been to the ER multiple times, on Christmas Eve he had an MEI entrography done. His gastroenterologist called and said he felt Brady needed more socialized care because of the complex issues he has had to date and the severity of the MRI scans. This past Thursday we met with another socialist in Cincinnati. Labs were repeated again, some are very off and next he is scheduled to go have an upper and lower gi done. They want it done asap. We are waiting on scheduling. I assume we will hear from them tomorrow.
He is scheduled to get Botox early next month and then in March he will be admitted for a week long therapy intensive.
And finally, they are also sending Brady for second opinions/consults with specialist at Cincinnati Children's.
To say his medical issues have made us weary is an understatement. We are exhausted with appointments, him feeling bad, and just not having answers.
I'll post more when I can put more in words, but it's starting to feel like we are in a never ending cycle of nothing works and if it does it's causing major issues to other body systems.
Please continue to pray for him.
