We have yet to find a food that Alexander does not care for (OK, he's
not terribly thrilled with formula but that's to be expected when you've
had the good stuff for six months!).
His trusty taste tester wasn't too thrilled with the blender variety
bananas...but Alexander certainly didn't care in the slightest! :)
Sweet potatoes are, well, sweet...at least according to our solid food
eating machine known as Alexander. He's really pounding down the stage
one foods with the cereals.
Nicholas has decided that he's going to be the royal taste tester of the
family. He insists on having a taste of whatever Alexander is eating.
You'd think that he would have gotten enough of the baby food when he was
a baby but apparently you'd be wrong!
It seems like a lifetime ago we were welcoming you into the world and
into our family. I don't think any of us would have guessed what was
in store for us for the next few months. In fact, a frequent observation
that would come later is that we never expected Nicholas to be the
easy one. After all, you made it to term and he didn't and you were
definitely larger than he was.
I can't tell you how scary it was when we realized that something wasn't
quite right before you were a day old and you ended up in the intensive
care ward...just like Nicholas. Or how about the joy when we brought
you home when you were five days old just to have you return to the
hospital a week later when the seizures started again in earnest? At
that point, we had no idea that six weeks later you would be a unique
case (with the largest focal cortical dysplasia that had been seen to
that point) and becoming Dr Bruce's youngest patient to undergo major
brain surgery.
But what I can tell you is that the last four months have been a source
of joy and hope to see you losing seizure medications and generally be
bright-eyed and bushy-tailed. You've got such beautiful eyes that it was
a shame that the medications made you a zombie for much of the first
half of your life.
But I see a beautiful boy now who is fighting with everything he's got
to make a good recovery from such a scary situation. Alexander, you've
experienced more in your first six months than most people will ever
experience in their whole life. I hope that in the years to come when
it comes time to explain these last six months to you that you'll find
that in the midst of a very scary situation, there was something that
was never lost and that was hope for a better future and our pride in
your courage.
You're such a beautiful boy and there have been more than a few miracles
that have gotten you to this point. It's hard to believe that it wasn't
very long ago that you we were sending you into the operating room and
waiting anxiously for any sort of good news on the outcome. The last
few months and your progress to date have been better than we probably
could have hoped for and we are so thankful for that.
And we're thankful for the fact that we weren't alone with the hopes
and prayers that came from everyone who knew about your situation. I'd
like to think that they helped make a difference...don't ever forget that
you're never alone, even when you think you are! There are people who
you'll never meet who have cared so much for you.
But for right now, you don't have to worry about that. Just be the cute
baby we know you are and we'll walk this long road ahead of us...
together!
Faith manages!
Alexander continues trying new foods with today's menu including oatmeal
and it met the same fate as the rice cereal. Can you say
SLUUUUUUUUURRRRRRRRPPPPPPPPP? Sure you can...
We've noticed a definite improvement in Alexander since he started
physical therapy but we've still got a long way to go and a lot of work
ahead of us. But the progress he's made so far is very encouraging!
It's rice cereal!
We were rather surprised that a certain little one was ready for solid
food as we weren't going to try for another couple of days or so. But
here we are at Kentucky Fried Chicken
and Alexander didn't do a particularly good job in disguising his
outright lust for something other than a bottle of milk.
Specifically, mashed potatoes from Daddy's plate!
So on the way back to Grammy's house, a quick raid of the Food Lion
resulted in a box of rice cereal and before we knew it, we were ready to
start feeding the boy. I think it's safe to say that the first test was
a success even if he did like sticking his tongue out as the cereal was
going in! He wasn't the cleanest boy but our little piglet sure figured
out that he liked the rice cereal soon enough!
Alexander visited Dr Rathke over at Raleigh Neurology for an
interpretation of his MRI. The indications from the MRI are that things
look good three months after the surgery and that the area of the brain
that was removed has filled with spinal fluid which was to be expected.
The only abnormality noted was the areas that we knew about before his
surgery but because they were not electrically active, it was decided to
leave them alone unless they became a problem.
We have a plan to start reducing the Topamax (his last seizure medication
used as a maintenance drug) over a seven week period to start after we
hear Dr Bruce's opinion of the MRI. In the next couple of months after
the Topamax is gone, Alexander will have an EEG and we're expecting to
return to Washington to visit Dr Bruce in November. (Since this entry
was written, Dr Bruce has weighed in with his opinion that the MRI looks
just fine even knowing about the abnormal areas we knew about before and
that the EEG would be better after the medications are gone to get a
more accurate view of what's going on in his brain electrically).
All in all, things are progressing pretty much as we have expected.
What was unexpected was finding Mommy, Grammy, and the boys in the office
lobby on a surprise inspection tour of the work habitat. They were a
welcome surprise to what was a pretty boring Friday up to that point.
They got to see the cave (the small office I share with Jamie, we keep
the lights off because fluorescent lights stink!) and experience just
how hot the office can get when it's miserable outside. But on a
brighter note, they got to meet some of my coworkers as well as spring
me a bit early to go home and mow the lawn. Woo hoo. :)
For a lot of them, this was the first time they actually could see
Alexander for real rather than a picture or a set of MRI images that I
had carped from the CDs containing his MRI data. It goes without saying
that everyone was pretty much impressed with the boys (and rightfully
so, they're both awfully cute when they set their mind to it!).
Today was Alexander's first session with the physical therapist. She
comes to the house once a week to work with Alexander and provide us
with some exercises we can do with him to strengthen the left side and
train him how to get the most use out of that side of his body.
For example, one exercise involves pushing his hip to start him turning
over and making sure he doesn't chicken out of the roll. The idea is to
get him started and let him complete the roll, extricate his arms out
from under him by himself (the left arm obviously is a little harder for
him to work out), and then lay there on his belly whilst he uses his
neck muscles to support the weight of his head.
Another exercise involves sitting him up so that he can start learning
balance as well as gaining strength and endurance to sit up on his own.
The therapist's rating is that he is at approximately 4-4½ months
developmentally which would be pretty close to on-target for someone who
slept for the first two months of his life and obviously didn't work
on some of those baby exercises in that time. She also felt that there
was stiffness on the left side that had been noted by others and the
range of motion for the neck but she indicated that the muscle tone was
good and that she could work with him to maximize his abilities.
And that just gives us incentive to get him rolling all over the place
and doing all of the other cute baby stuff when she's not looking! :)
Alexander had a MRI today and the results are going to be examined by the consultants (including Dr Bruce) over the next few days. Initial indications are that the MRI seems to look good but we'll know more by the end of the week.
Alexander had his first visit with a consultant today to see what sort of
rehabilitation program will be put into place for him now that he's hit
the six month mark where presumably brain function has migrated from the
brain stem into the brain itself.
There weren't a whole lot of surprises in the results, particularly
concerning the left side. Stiffness was noted in both the left arm and
leg (the arm seems more affected than the leg) and his range of neck
motion facing toward the right is apparently not quite what they
expected. He does tire easily after exerting himself and obviously
favors the right side. This isn't really a surprise considering that
the right side of the brain was the location of the dysplasia and as we
remember from our anatomy classes, the right side of the brain affects
the left side of the body and vice versa.
Next week, he will start receiving physical therapy at home. These
exercises will help him develop range of motion and hopefully overcome
the stiffness on the left side and get him back on track developmentally.
The good news is that there isn't anything in the assessment that can't
be fixed with a good deal of therapy and patience and only time will
tell what sort of effects may be permanent as it's still too early to
make that call.
But compared to what we were facing prior to surgery, we'll will gladly
take this any day of the week and twice on Sunday!
Alexander got to meet his cousins from Ohio for the first time today.
Uncle Patrick, Aunt Suzette, Patrick Samuel, and Mairin all drove from
their home north of Columbus to spend the Fourth of July weekend with us
and finally get to see our little one. I think it's a fair assessment
that Alexander definitely engaged cute baby mode in a major way
with his intended target audience.
Whilst his more rambunctious and mobile cousins were off dancing and
playing with the toys, Alexander was quite content to be cuddled and put
on the occasional show for his audience.
We had a good dinner and then let the kids have fun playing. When they
finally started dropping off into Morpheus' arms, we had a good time
playing some cards before it was time for us to pack the Escape and head
back home.
But there will be plenty of time to have fun during the coming week. :)