We’re a little more than a month after surgery and Alexander is doing very well and is still seizure-free. His progress has been good enough that the neurologists have started ratcheting down the phenobarbital over a six week period with the goal of eliminating it entirely so that the only seizure medication left is topamax and his only other medications are for his reflux. Unfortunately, phenobarbital is addicting so you can’t just stop it cold-turkey. This coming Wednesday will see the end of his morning dose so that he only has one at night…then two weeks past that, he gets half the amount at night and finally two weeks later, he’s off of it completely. That’s very good news…they don’t like to have the little ones on that stuff past six months of age because it ceases to be beneficial and can actually interfere with cognitive development.
The difference since surgery compared to what he was before Dr Bruce did his miracle for us is like night and day. Before, he was practically a drugged zombie with all of the various seizure medications going into him, all of which tend to make you drowsy. Since then, he has been very alert and active when he’s awake and he’ll fix those big blue peepers on you and you can’t help but to fall in love with him all over. His eyes are a different blue from that shared by Nicholas and Mommy…they’re more of a slate blue/grey and they are gorgeous. I hope you get to keep them…it’ll certainly make having girls fall in love with you so much easier (not that you seem to have much of a problem in that department!).
He’s also been doing exercises to strengthen his neck muscles and he’s very determined to push arms and legs against you when you give him some resistance.
But the remarkable change in him is that he seems to have found his voice when he wants something (usually a bottle). Before, you were never quite sure and he wouldn’t really cry out for food. Those blissful days are now long behind us and he doesn’t have a problem letting you know what he thinks.
We are heading back to Washington, DC for a followup appointment with Dr Bruce on 23 April and we anticipate being back home on 27 April provided Dr Bruce agrees with what we’ve been feeling…that his progress is quite good if not exceptional and that it looks for the time being that the surgery was successful in doing what it was meant to do…get the disorganized brain tissue out and stop the seizures in their tracks. We’re now waiting for him to get to six to nine months old so we can see what developmental problems we might need to deal with but that’s for another day…surviving today will be quite enough of an achievement.
It won’t be all business up in Washington…we’re planning on taking the boys to Baltimore’s Inner Harbor to the aquarium which Mommy says is really awesome. She tends to know these sorts of things, considering that she went to university on the other side of Baltimore! And who knows, we might just find our way to a real Chesapeake crab shack while we’re there…
But now it’s time to go find a place to rent a minivan… 🙂
