Orion's seizures continue, most of them are sub-clinical now (no physical movement, but showing up on EEG). The results of the CT scan show strokes in the right side of the brain. This area is controlling his left arm and foot. Since the seizures started, his left leg and arm have been weaker, but today he's been showing more strength. They have him on a few anti-seizure meds that are keeping them under control. I think he might be going home with one of them.
After speaking with Dr. Reddy and yashir, they reassured us that most kids who are in this situation post-op fully recover with no long-term effects. Since Orion is so young, he will most likely adapt and develop around it. It was very reassuring and comforting to hear that from a dr and our friend.
Orion will continue physical therapy when we go home and they will work on catching him back up and getting him past these hurdles. He will probably be set back in his physical development, but nothing too major or serious. He's also list a lot of weight, so the high-calorie diet will start all over again. *sigh*
We also unfortunately had to experience some careless decisions that were made by profesionals here which have brought us to tears and also staying on our toes. Fortunately it did not affect Orion negatively at all, so he was very very lucky. I know bo will talk about this day since he experienced it firsthand.
We also want to say BIG THANKS to everyone for their prayers, thoughts and love for our family. There are so many friends, family, and even people we've never met who are sending prayers our way to help heal our little boy. We thank you from the bottom of our hearts and appreciate the love from the community. It is so uplifting and reassures us that Orion WILL be okay.
Orion will be waking up soon. He has been sedated for 6 days now and he is finally off the meds that keep him sleepy. Tomorrow's goal is to get the breathing tube out which will make him more comfortable. That's one step closer to moving upstairs to step-down. Now that he is more awake, bo and I stay at bedside day and night. So we take turns taking naps so one of us is always next to him to hold his hand. He opened his eyes 4 times today with alert eyes, being able to track objects and focus on our faces. We can't wait until he's back to his old cheery self!
Will try to post more updates as often as we can. Thanks to all our friends and family who have comforted us, and especially anson, kathy, chris and sara for visiting and supplying us with yummy fuel!!