We couldn't be more happy with the care we are getting here. Sometimes even at a hospital you have to advocate for your child and "stay on top of things". Not here. The nurses and doctors all communicate SO WELL together! Everyone is on the same page, and we truly feel we can sit back and let them do their job.
With that being said, the good news is: we are getting information. Yesterday there were "waves", today there was one subclinical seizure coming from the top part of the tissue where the tuber was.
What does that mean? Don't know yet... We dropped his meds down again, pretty significantly. And we will see if he has more. Then we will weigh the risk/benefit of taking more tissue.
Clinically? He's amazing!!! Our living quarters are tight! Did I ever mention it's 4 patients per room? Yeh. But, we have found enough space to play basketball bedside! He was up this morning at 6am and is just now going down for his nap. So, we REALLY appreciate all your prayers, comments, texts, emails- everything! It's obviously working!!!!
Working on his laptop (aka- DVD player)
