Well, you know what they say about the best laid plans, eh? We ended up
leaving on Monday rather than Saturday due to a lack of available rooms
at the Ronald McDonald House. We stayed near Baltimore which actually
turned out to be very convenient to the hospital and sights we wanted to
see in Baltimore where Mommy went to university so it worked out just
fine after all.
We got to Children's and of course, there was a bit of the hurry up
and wait which is made even more interesting by a whirling dervish
of a brother.
We had remarked to anyone who would listen about how bright-eyed, alert,
and often bushy-tailed Alexander has been since his surgery. We were
wondering if Dr Bruce was going to see that side of the boy because he
was quite happily snoozing away the time. Fortunately for us, he decided
to wake up in time for Dr Bruce to have a look at him.
I think it's safe to say that Dr Bruce was awfully pleased to see him
because as soon as we entered the office, Alexander was in his arms as if
by magic. It was obvious Alexander's pretty blue eyes were having their
usual effect on someone who doesn't get to see them very often (not quite
to drooling stage but definitely well past the usual
awwww, he's so cute mark!).
The incision site itself is healing nicely. Most of the bottom half of
the incision is already well on to healing and the top is getting there
with continued cleaning. We think Dr Bruce was surprised that the
seizures had stopped completely after the surgery as he had prepared us
for the possibility of a few in the hours immediately after the operation
but then they should taper off. But he hasn't had a single one since the
surgery and it's Dr Bruce's opinion that the longer he goes without the
seizures, it's much less likely they're going to return and it's a good
indicator that they got out everything that needed to be taken out. He
had mentioned some abnormal areas on scan but his opinion is that it's
more likely an artifact of the MRI given the lack of seizures.
All in all, this was a good trip even without some of the
extra-curricular things we were planning on this trip (our Indian
restaurant in Adams-Morgan district of DC and the Baltimore Inner
Harbor/National Aquarium), And it was a necessary one, not just for Dr
Bruce's opinion on Alexander's recovery. You see, in this line of work,
you aim for the happy ending and sometimes you get it, sometimes you
don't.
Dr Bruce seeing Alexander's remarkable recovery is a major happy
ending and that's the sort of thing that helps you carry on in the
cases that aren't destined for that sort of resolution. That's why this
trip was necessary and seeing Dr Bruce's smile and joy at something he
did for our son was more than worth it.
The next steps for Alexander are an MRI in three months and a probable
return to Washington in six months for another follow-up appointment
with Dr Bruce. I think we'll be able to find the time... :)
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... :)