Alexander James Williams
The Story So Far:
Alexander and Kathryn...
21 Dec 2006
There is mischief afoot...
10 Dec 2006
Vezzini ought to get a load of this...
30 Sep 2006
He's never pleased with himself...uh uh! :)
12 Sep 2006
Alexander has an appointment with Dr Rathke...
06 Sep 2006
Alexander's new trick...
19 Aug 2006
Dangerous smiles...
20 Jul 2006
I'll be here all week...try the veal!
11 Jul 2006
Mmmm...mmmm...good!
04 Jul 2006
Alexander's follow-up appointment!
23 May 2006
Sometimes the best toys are the cheapest ones...
05 May 2006
Alexander comes home!
26 Apr 2006
The last week has been pretty much more of the same...Alexander's eating and
fluid intake is the pits and you can add to that exhaustion due to not getting
much sleep at night. His roommate for most of the time was a teenager who was
hit by a car who required a lot more care than Alexander did. Of course, that
means the lights are on after midnight for a hour or so and it's no easy matter
to get Alexander settled again.
Three days ago, Alexander was moved to a private room (the doctors figured that
he can hardly recover if he's not sleeping properly and being woken at all hours
hardly helps that situation).
Being in the private room has helped somewhat by allowing him to sleep a little
better. But his appetite and fluid intake still hasn't been the greatest...it's
been better than it was but still well below where he was when he came in. Most
of his liquids are having to be introduced using the syringe as he's decided the
bottle isn't for him (we think it might be hurting him and that he's shying away
from the bottle for that reason).
But by today, we figured that if he isn't going to eat or drink, he can at least
do that at home and who knows...maybe being home in a familiar setting might
well be what's needed to get him eating and drinking again. Certainly, the
quality of the food at home far outranks the offerings from the dietary section
of the hospital who have some bizarre idea that mechanically soft foods
means a chicken breast or a sandwich.
Thus, the fun begins today with Nurse Plod and what would turn out to be
probably the slowest discharge of a patient and parents who were quite willing
to be discharged in the history of medicine. The process started round 0900
this morning and it wasn't until 1730 that we were finally on our way home. I'm
thinking the coordination of the discharge could have been a lot more efficient
than it was...and the truly sad part is that even I know better because
discharge planning is one of the things our application does (and I wrote the
big screen where most of the action happens!).
1730 hours and you're in downtown Washington, D.C. Guess where you'll be in
about an hour or so! You guessed it...not terribly far down the road. It took
us ninety minutes to get to Fredericksburg and about three-and-a-half hours to
go the rest of the way. We decided to stop in Zebulon for the night before
continuing on to the house as it had been a long and trying day.
Mommy had an interesting observation as we were waiting to turn onto New York
Avenue to get to I-395. We had come to Washington on holiday in 2000 before we
were married and it seems like Washington was a lot nicer place to visit back
then and that were it not for Alexander, we'd really have no desire to come back
any time soon. I couldn't agree more with that! Mind you, there are things
about Washington that I'll always enjoy...the Smithsonian (particularly Air and
Space), the Lincoln Memorial, and the National Archives. But after spending a
couple of weeks up there, it gets really old, really quick. Needless to say, it's
not high on our priorities when it comes to going on holiday in the near future...
But Alexander is home and that's the most important thing!
Idle hands...
23 Apr 2006
Alexander gets a PICC line!
21 Apr 2006
Alexander made a brief return to the operating room to have a PICC (peripherally
inserted central catheter). They insert an IV line using X-ray as a guide into
his upper arm and guide the line into the superior vena cava (a big, fast-flowing
vein) to obviate the need to continually stick him for IV's and blood draws.
They can do both using this line and it's much longer lasting than your average
IV. That's good considering his veins are once again pretty much shot with all
of the sticks he's had.
The idea behind the line (other than to stop using the boy as a pin-cushion) is
that if push comes to shove, nutrition and fluids can go in that way for at
least the short term. We might well take him home with that line in place as a
backup in case he decides to make some bug nice and welcome and get sick on us.
Alexander's EEG!
20 Apr 2006
Alexander's EEG was performed yesterday and today and it indicates slowing of
the signals in the affected area but nothing that would be unexpected. The
fluid that fills the area that was removed is electrically conductive (hence you
see electrical signals) but it's nowhere near as efficient as the neurons and
synapses (hence the slowing of the signals).
Alexander's appetite and fluid intake hasn't been so hot after surgery. He
seemed to have one good day right after surgery but since then, he's been caught
between the Scylla of lack of appetite and the Charybdis of throwing up whatever
we do get into him. The doctors haven't seemed overly concerned about this for
the last couple of days (that was surprising considering that your ability to
heal is definitely affected by nutrition). They're not really sure why he's not
eating other than to say that the area of brain that was removed was in the area
known for motivation and initiation (we would later hear from Dr Bruce that the
person shouldn't have bothered with that line of reasoning...what came out was
dysplastic tissue and thus non-functional brain tissue).
Alexander continues to be irritable and comparisons have been made between him
and a child that was two or three days after surgery. They aren't sure why he's
not rebounding as quickly as he did last time but it's been pointed out that
some children have gone two weeks with a lousy appetite and that we could expect
probably a month of irritability. As if that wasn't bad enough, he was working
on six or so teeth before surgery so you can just imagine how that's playing
into how much pain he is feeling.
We keep pushing the Tylenol and Motrin with the hope that will at least make him
a little more comfortable.
Alexander has first post-op seizure...
18 Apr 2006
We had a bit of bad news this evening when Alexander had what seemed to be his
first post-operative seizure. His eyes diverted completely to the left and he
was unresponsive for about a minute. He would later have a couple of episodes
where he was looking really hard to the left but he was easily attracted to a
cell phone or a toy. He's supposed to have an EEG tomorrow to see what's going
on inside there.
Our nurse Kisha is very good and tried for a couple of hours to page the
neurology resident on duty to no avail. Finally, the neurology fellow (higher
ranking) got called and after a bit of diddling about came to the conclusion
that no change in medications at this time. I wouldn't want to be that resident
when the fellow gets her hands upon him...she wasn't pleased to be called late
at night. Two thoughts on that one: we didn't particularly care for the
resident blowing us off (especially when one of us has an hour drive back to
northern Virginia) and even if he was in a furball in the ER, protocol is that
you pass the pager to someone to at least show a bit of courtesy and return the
call.
That courtesy seems to be a bit hit or miss...you either get someone who is
really awesome (which I'd say most of the nurses that I've seen have been) or
you get a real...well, let's just say the nice version is the north end of a
south-bound horse. The social worker that was assigned to Alexander's case was
definitely one of the latter...pretty much useless and unhelpful added with a
heaping helping of I just don't care because my last day of work is Friday.
I'll save you from her more non-sensical observations on the responsibility of
parents in the face of the appalling other than to suggest that my first
instinct was to have her hauled before the relevant District tribunal governing
social workers and stripped of her license to do the job. Trust me on this...
it was that bad.
He had a MRI earlier today and the neurosurgical resident indicated that
everything looked OK on it so we're not really sure what the ultimate outcome of
that seizure is going to be. We were told that we might expect some seizures up
to 72 hours after surgery but this one was even beyond that.
Other than that, his fever has come down quite a bit and though he's definitely
weaker on the left side than he was before, he will sit up and play for about
five minutes before he tires out and goes back to sleep. His appetite is for
the birds (not that it was all that great before the surgery) and he's been
prone to giving it back to us on occasion so he still has an IV bag to help
supplement what he should be getting.
So that's the story for the last couple of days...hurry up and wait and more
than a little frustration. Fortunately, it looks like we'll be transferring to
the Ronald McDonald House in the District tomorrow which will take a ninety
minute drive in and forty-five minute drive out (on average) down to about ten
minutes. When you're stuck on Chain Bridge for about an hour and it takes two
hours to get to Children's as it did last night...yeah, not a hard call on that
one. Apparently we were the beneficiary of a rare event where the Northern
Virginia House was filled to overflowing and the District House had some
openings. We're thankful for any room they have for us...paying rack rates at
the hotels round here (and we're not talking about the Hay-Adams!) would break
the camel's financial back.
And just as I was getting the hang of going round Arlington Cemetery without
going over the Roosevelt Memorial Bridge to Abe's Place...
Alexander leaves the PICU!
16 Apr 2006
Alexander was discharged from the PICU at 1230 today. I'm sure the
nurses over there will miss him as he is awfully cute. But getting out to the
floor is much more convenient for us and a sign that we're on the path to
getting him home.
We ended up in a shared room first but were quickly transferred to the private
room next door. The view is of this space between the various wings of Children's
(the view was much better last time with a window that framed the dome of the
Capitol building perfectly). But Nicholas would love at least one feature of
the room...it's got a great view of the helicopters that fly patients to the
hospital.
Alexander is still battling the fever which has hovered near 103°F for most
of the day. He's much more responsive today than he has been and has
occasionally sat up. His appetite is still not the best and has been
supplemented by IV fluids but that was decreased this evening to a level to keep
the IV open. He's also battling the pain that is normal after a surgery like
this.
But the neurosurgery/neurology team is very happy with his progression post-operation.
He's moving all of his extremities, he is alert when he's not sleeping, and he
seems to recognize us and does a bit of vocalization when it suits him.
In short: he's doing just what he needs to do to get out of here!
Alexander recovering from surgery!
15 Apr 2006
We were notified by PICU this morning that Alexander was recovering from the
surgery and was holding his own. Apparently, the problem right now is that he
has a fever (expected because his body is responding to the trauma of the
surgery) and metabolic acidosis.
The fever is getting hit with Tylenol up the, well, let's just say he didn't get
it via the route we customarily use when we give it to him for his teething.
Finally, he was able to get it by mouth and that will probably work better
considering that he's been pretty healthy on the other end. Like a race horse...I'm
just saying! :)
He's trying to compensate for the acidosis by an increased breathing rate but
there is only so long he can keep that up before they would decide to put him
back on a ventilator. The plan for right now is to see if it can be allowed to
run it's course without resorting to sodium bicarbonate or falling back to
ventilation.
He was asleep when we arrived at 1100 (the unit is normally locked down from
0700-1000 for doctor's rounds) but did get progressively more alert. Apparently
he had been looking for us earlier and not seeing us at his side nodded off
again. But he was more than happy to wake up for us and a couple of bottles of
Pedialyte. If that doesn't tell you how desperately hungry the boy was, I don't
know what will. He doesn't care for the Pedialyte at home...at all!
The incision looks very nice and it doesn't look like Dr Bruce came down as
close to the ear as last time (probably because he didn't have to based on where
the hot spot was). He still has all of his hair so we don't have to worry about
any reverse mohawks!
By the way, if you are interested in spending four years in medical school...don't
really waste your time on that. The discussion turned to when the nasal canula
could be taken away and just as the doctor was going to order it removed...Alexander
took matters into his own hands and removed it himself! Who needs fancy degrees
and student loans out the yin-yang, eh?
But after a hard moment's time of playing doctor, he decided enough was enough
and nodded off to sleep.
Through the day, the number of IV lines has been reduced and the arterial line
in his left hand has been removed. He's got the Disney Channel on the TV
but he's not really interested in it. He's been trying to fight the urge to
cough (because obviously it would hurt his head) but he's got some upper-respiratory
stuff he's got to clear at some point. But he's got the really good pouty lip
going right now...you know the one...you did *THIS* to me. Yep...don't
you know it. If you look carefully on the left side, you can see that lip is
drooping slightly which would be some of the left-side weakness they were
expecting.
We got a chance to raid our favorite Indian restaurant in Adams-Morgan and it
was clear we had forgotten just how much they pile on the plate! That's good
that we get another meal or two out of it!
The rest of the evening was spent at Alexander's side until it was time to head
back to Falls Church. Daddy didn't blow the navigation for the second night in
a row...WOO HOO!
Alexander's second surgery...
14 Apr 2006
Arrival - 0935
We got an early start to our morning due to expected travel time to Children's
in Washington from the Ronald McDonald House in Northern Virginia west of Falls
Church. We wanted to give Alexander his medicines and a drink of water or apple
juice. Alexander seemed OK with that plan...that is until he figured out that
his milk tasted just a little bit funny and a lot like water! He wasn't
thrilled with the offering but he did drink a fair amount of liquid.
We left the house at 0820 and decided on an approach from the northwest through
Rock Creek Park. We were expected at the hospital for the first of what would
be many instances of hurry up and wait at 0930 and we made it into the
parking deck on time. We lucked out that it was a holiday weekend and most of
Washington seemed to be somewhere else.
Vitals/briefings - 1030
If you spend any amount of time round a hospital, you learn very quickly that
they thrive on paper. One can imagine huge swathes of Amazonian rain forest
that are cut to feed the voracious appetite of the modern American healthcare
system. Goodness knows that the copy of his charts from his last stay at
Children's weighed at least five pounds...of which only two or three pages were
deemed relevant by the pediatrician. :) You get shuffled from window to booth
and back again for more contributions to the pile but it is what it is.
Alexander decided to make his own political statement about what he thought
about having to wait in his unique aromatic way. Now imagine this...we're in a
hospital that is (theoretically) devoted to the care of children. You would
think that every wash room would be child-friendly with a changing area. You
could think that but in point of fact you would actually be quite wrong. The
wash room with an actual changing table is a bit of a hike and amazingly, the
table doesn't actually have any safety straps.
Anywho, the biological emergency was taken care of and we got to the room where
they took his vitals at 1030. His vitals and labs seemed to be OK so after
another hour of mostly waiting (and another biological situation but at least we
had the biohazard bin in this room...I feel for the janitor that finds
the other one!), we were ushered into a secured play room to wait some more. (Can
you tell we love waiting?) Fortunately, this wait was pretty short as the
anaesthesia team and Dr Bruce came by pretty quickly to get the process rolling.
Anaesthesia - 1200 (+00:00)
Induction with the gas mask started right about noon and he was quickly under in
about two or three minutes. That was rather surprising (at least to Daddy who
had never seen this in real life). I mean, on TV you see them go under pretty
much instantaneously so as not to take away from advertisement time. But it was
amazing to see him go from one moment of being bright-eyed and bushy-tailed to
completely out and ready to roll to the operating room. At this point, you don't
get much time to say goodbye.
Note for the future: take care of that before they start passing gas!
IVs/arterial lines in, first incision - 1313 (+01:13)
We got our first update at 1313 hours (+01:13) indicating that all of the IV and
arterial lines were in place on the left side (so he can still use his right
hand, something we were very insistent upon because to expect the poor boy to
have no use of hands for two weeks is just not very nice at all). At this point,
the surgery has actually begun and the first incision made and all signs are
looking good right now. Once the update was had, it was time to run for one of
Mommy's special coffee and what do we have over here in the library but network
access...so a couple of updates went out that way as well.
Still cutting to affected area (all is well) - 1515 (+03:15)
Our second update at 1515 hours (+03:15) reported Alexander doing very well and
Dr Bruce is proceeding slowly and carefully to the affected area. None of the
grids have been laid as of this update. The next update is expected at 1730
hours (+05:30).
First mapping complete, hot area identified for resection then second
mapping to determine feasibility of additional monitoring (transfusion given) -
1635 (+04:35)
We actually got an interim update from Dr Gaillard at 1635 hours (+04:35). He's
the neurologist assigned to Alexander's case and he indicated that the first
mapping of the brain was completed and had indicated an electrically hot area in
the frontal lobe to the side and down in the area that was resected (removed) in
the first surgery. Dr Bruce has decided to go ahead and resect that area
straightaway which should take an hour or so and then a second mapping will be
made to help make the decision as to whether the grids will stay in for further
monitoring or if they'll declare victory and pull the grids out, seal him up,
and then send him home next week. We expect that they will err on the side of
caution but if the right decision long-term is to go ahead and just do the one
surgery, then we're perfectly fine with that. He is still doing very well and
has received one transfusion for blood loss (as explained to us, because of the
previous surgery and the need to be careful, blood loss was expected and we had
already consented to the transfusion. Another piece of welcome news: the
posterior area near the motor strips is showing to be clear of electrical
activity so he should not lose any additional motor function due to this surgery.
Second mapping complete and pretty clean, decision to pull the grids and
just do the one surgery, approximately ninety minutes to seeing Dr Bruce. Some
temporary additional weakness on the left side can be expected but it's expected
to resolve fairly quickly after the surgery. - 1825 (+06:25)
We just got another update from Dr Gaillard at 1825 (+06:25) and he indicated
that the second mapping was complete and was looking very clean. The decision
has been made to remove the grids and close him up which will take another hour
to a hour-and-a-half before Dr Bruce comes out to talk with us about the surgery.
Both Dr Gaillard and Dr Bruce feel that pulling the grids is the best and least
risky decision for Alexander as they had removed the very active tissue and
nothing else was indicating a need for further monitoring. He will be going to
PICU until probably Sunday when he is expected to be transferred out to the
floor. The expectation is for swelling and potentially some additional weakness
on the left side (particularly in the facial area) which should be temporary and
should resolve quickly when the left side of the brain takes over the function (I
think the term that Dr Gaillard used was that the brain was very well
differentiated in this area). All-in-all, Alexander is doing quite well and
both Dr Gaillard and Dr Bruce are very pleased with how the surgery has gone so
far.
Surgery complete - 1958 (+07:58:58)
Dr Bruce came out to talk to us after the surgery was complete at 1958 hours.
Overall, he was very pleased with how the surgery went and was very happy that
he saw exactly what he was hoping to see. He took out a fair amount of
obviously dysplastic tissue in the area of the insula (sp?) on the
frontal lobe to the side and down from the original site. He also took another
strip of dysplastic tissue along the top edge. What took this surgery longer
than the other was that the tissue was more sticky (for lack of a better
term) than the first time and the need to be very careful. Alexander did
receive 200cc in the operating room as a result of fluid loss (and we would find
out later that he is blood type B-positive (B+) which was a bit of a surprise to
us).
The expectations going forward are that he will have temporary weakness on the
left side (particularly in the facial area) but that it should resolve over the
next couple of weeks and that hopefully we shouldn't have to do any additional
surgery.
Recovery in the PICU - 2030
We then took off for the third floor PICU in order to catch him before he went
into the PICU and would be unavailable while they set up his area with the
ventilator and IV pumps. This was an appointment we did not want to miss
because the PICU has long lock-out periods and we had no intention of sitting in
the waiting room for a couple of more hours without seeing him for ourselves.
That has nothing to do with trust and everything to do with getting relief from
an extremely stressful day that he looks OK.
I mean, let's think about that for a minute. This morning before we left
Virginia, we had a very beautiful baby with a wonderful smile who was flirting
with every female he could see and at the end of the day, Alexander had someone
who had cut into his brain and removed a fair bit of it and was laid out like
someone had poleaxed the poor boy with all sorts of tubes poking out of him and
a manual ventilator bag! That's a heck of a day by anyone's standard, I should
think! And whilst he's going through all of that, you're on the sidelines
knowing that it is the right decision to take for the surgery and that there
really isn't anything else to do but wait anxiously for any word that your boy
is doing well and will be fine at the end of the day. All sorts of conflicting
emotions are going on in your head...trust in Dr Bruce and his team's skills,
faith and hope that all will go well, anxiety at when the next update from the
operating room comes and what it will have to say, to finally being so keyed up
waiting for the end of the surgery so that you can release the tension.
Honestly, I wouldn't wish that on my worst enemy. And we've done it twice...
Anyway...his gurney came off the elevator and we did make a successful
interception before he was wheeled into PICU (with his ventilator and IV pumps
coming in right on his heels). He was on a ventilator after surgery and the
plan was that the tube would be removed either later tonight or early tomorrow
depending on how well he responded to breathing on his own. Overall, he looked
very pale (almost as pale as Very Pale Dan from this season's Survivor)
and that spoke to his counts being low due to the fluid loss in surgery. But he
looked pretty clean and strong and it was good to see him before we had to sit
on our hands some more.
Thirty anxious minutes later, we were by his side in the PICU. Overall, he was
still doing pretty well and was starting to wake up from the sedatives. He was
obviously in some pain (one might well say he easily had a splitting headache!)
which was perfectly understandable. Alexander was also contending with six
teeth coming at the same time as well as the surgery. The fact that he wasn't
climbing the walls was a miracle!
A word about that pain, if I may. Watching him dealing with both the after-effects
of the surgery and the teething is the sort of pain that you honestly wish you
could do anything to save him from feeling. And I mean anything
because it just kills you to see him endure it for such an extended time. It
just seems monstrously unfair that such a beautiful boy has had to endure such
awful things in his fourteen months. And it is!!! But you can either let that
beat the heck out of you mentally or you can realize that there is a flip side
to that coin... that you're looking at the closest thing to pure courage that
you can ever find in this life. Granted, there really wasn't much of a choice
on his part...it was either have the surgery or have seizures for the rest of
his life and that was a pretty easy call for us to make. But it's a tough thing
to realize that this beautiful fourteen month-old boy lying there in such pain
probably more knows more of what it means to be courageous than any of the rest
of us ever will.
He was breathing well enough on his own that they started the extubation process
by dropping the oxygen content of his ventilator down to room air to see how he
would handle it. He did so well that all he was getting was a slight bit of
oxygen (1L for all of you medical types out there) but he was doing most of the
work on his own.
Ventilator tube removed - 2255
After about ninety minutes at bedside, it was time to head out for some gourmet
food from Chez McDonald's. Frankly, it could have been mud and we wouldn't have
cared at that point. During dinner, we were informed that the tube came out at
2255 hours and that he only had the nasal canula with the 1L of oxygen (we
wouldn't have been allowed at bedside when the tube came out so it was just as
well it happened then).
Another hour of so at bedside to see him get comfortable and then it was time
for two very exhausted parents to head back to the Ronald McDonald House for
some very needed sleep. And even flying on autopilot, Daddy managed to take the
correct turn to give the Memorial Bridge and Abe's Place a bit of a miss. The
third time is indeed the charm!
- Alexander before his surgery... [Web / Reprint]
- Remember this smile for it will be gone by tonight... [Web / Reprint]
- Alexander clapping... [Web / Reprint]
- That's not a bad idea... [Web / Reprint]
- He's such a cutie... [Web / Reprint]
- Alexander is fascinated by Dr Bruce's hat... [Web / Reprint]
- Ready when you are, big guy! [Web / Reprint]
- Alexander post-operation... [Web / Reprint]
- Close-up view... [Web / Reprint]
- From the head of the PICU bed... [Web / Reprint]
Visiting with Dr Bruce
13 Apr 2006
Today was our appointment with Dr Bruce with the idea that he would look
Alexander over and then we'd head off to be admitted for the night before
surgery the next morning at 1130. Of course, it could be argued that we were
checking to see if Dr Bruce had grown since we saw him last in November...
Dr Bruce's position on the growth charts looked OK and Alexander managed to do
something he's never done before...do a seizure right in front of Dr Bruce! We
might have set the bar a bit high...he might expect us to be able to produce
another on demand but we'd just as soon not do that!
Originally, we were planning for two surgeries...one to lay down a grid of
electrodes to do an internal EEG to see where the hot spots are and then go take
the grids and the hot spots out with a second surgery. We actually have three
potential options that are in play depending on what Dr Bruce encounters in the
operating room:
- Original plan of two surgeries
- Removal of a hot area immediately with no grids
- Removal of a hot area and grids left in for further monitoring
We think the third one is the most likely because no one really wants to do more
surgeries in the future if we can avoid it. But we'll find out soon enough.
We were planning on Alexander being admitted and staying overnight for a morning
surgery but we found out that we'd have to return to Virginia overnight and
return in the morning due to insurance reasons. I'm sure we could have argued
it but at that point it wasn't really worth it.
So downstairs we go for a lot more hurry up and wait at the lab where the
paperwork sat in the bin for about a hour before the blood was drawn for the pre-operative
tests. A good sign was that his vein was pretty easy to find and draw blood so
hopefully he's recovered from last year's adventures in burning veins.
Once the blood was finally drawn, we were on our way back to Falls Church /
Annandale to the Ronald McDonald House. And yes, I blew the turn on US-50 near
Arlington Cemetery again and went back to Abe's Place. Maybe the third time
will be the charm...
Leaving home for Washington, DC
12 Apr 2006
The day to head north has finally arrived and we actually have a place to stay!
Twenty-four hours ago, we weren't as confident about that due to inept social
workers and other hassles. But Jamie over at the DC Ronald McDonald House was
an angel and got us a room at the Northern Virginia Ronald McDonald House as she
was completely full and we were third on the list. We may still move over there
as space permits but we were honestly quite thankful to have anything that was
better than $200/night in Washington on a holiday weekend.
The first stop was Zebulon to drop off Nicholas so he could stay with Grammy
whilst we're up in Washington taking care of Alexander. I can't tell you how
much of a load that takes off our shoulders...the last time he was up here for
most of the stay and it really threw his world for a loop. One breakfast (from
McDonald's, ironically enough) later, we were on the road north. Traffic was
pretty good until I-95 Exit 163 and then it was stacked all the way to the I-495
Beltway mixing bowl. We decided to give up on trying to get on the
Beltway and went in closer to Washington. We ended up taking the scenic route
round Arlington National Cemetery (don't get me wrong, it's very scenic and
hallowed ground but we were so ready to be off the road). It got even more
scenic when the signs for US-50 west direct you to the left but you should
really go right. But hey, we went over the Memorial Bridge to Abe's Place and
did a very scenic U-turn on 23rd Street NW... :)
Finding Ronald McDonald House was also kind of interesting...there is no sign
for the House and to make matters worse, the address is off Gallows Road but the
House itself is tucked way behind the hospital that *IS* on Gallows Road. (BTW,
interesting name for a road and even more interesting place to put a hospital).
Nicholas would be in heaven up here...Inova Fairfax Hospital is apparently a
major trauma center and we saw a couple of helicopters coming in for a landing
at the pad. Fortunately, a cell phone does wonders for putting us on the right
track. The house itself is actually quite nice and obviously a lot newer than
the DC location (but we'd still prefer to be in DC as it's much closer to
Children's). And it has wireless internet access...but I'm sure I can find a
place in the most wired place on Earth to camp out! :)
But it's our home away from home for the next two or three weeks.
Alexander's third tooth breaks through!
25 Mar 2006
Alexander's two teeth has a neighbor to share his mouth with (finally...months
after the first two!). And if you think the drooling and pain are done...there
appears to be more than a few puffy areas on his gums indicating that more teeth
(and teething) are on the way! This one was the second one on the lower left
side.
Sometimes it just stinks to be a little person!
Alexander's MRI...
03 Feb 2006
Alexander goes for an EEG at WakeMed...
28 Jan 2006
- Alexander and Nicholas at WakeMed... [Web / Reprint]
- Alexander and Nicholas on the bed... [Web / Reprint]
- Why do these things keep happening to me? [Web / Reprint]
- Alexander's EEG wiring panel is cleverly kept in the Bob the Builder bag... [Web / Reprint]
- Nicholas does a little dance... [Web / Reprint]
- In spite of it all, he's a happy boy... [Web / Reprint]
- Nicholas knows how to entertain... [Web / Reprint]
- Alex! [Web / Reprint]
- These are not uneven bars! [Web / Reprint]
- The WakeMed Redemption! [Web / Reprint]
Happy first birthday, Alexander!
23 Jan 2006
- Alexander looks a little concerned here... [Web / Reprint]
- Alexander drives the fire engine! [Web / Reprint]
- Nicholas does a bit of climbing... [Web / Reprint]
- Alexander plays air hockey... [Web / Reprint]
- These air jets are really niiiiice.... :) [Web / Reprint]
- Alexander is armed and dangerous... [Web / Reprint]
- Happy boy! [Web / Reprint]
- Don't do this in the crease...it's a penalty shot! [Web / Reprint]
- Mine! [Web / Reprint]
- Separated at birth? He sure does a good Robin Williams... [Web / Reprint]
- I've got a puck and I'm happy! [Web / Reprint]
- Oh no! An own goal! [Web / Reprint]
- Just kidding! [Web / Reprint]
- What do I do with this? [Web / Reprint]
- Nicholas drives the train... [Web / Reprint]
- Sing those blues, man! [Web / Reprint]
- Nicholas finds a port hole! [Web / Reprint]
- It's a hamster Habitrail for humans! [Web / Reprint]
Alexander blows kisses for the first time!
21 Jan 2006
Alexander's 1st Birthday bash!
15 Jan 2006
- Gabe checks out the swing... [Web / Reprint]
- Mairin does as well... [Web / Reprint]
- One crowded swing set! [Web / Reprint]
- Nicholas does the Funky Chicken! [Web / Reprint]
- Nicholas the bubble boy... [Web / Reprint]
- Alexander's birthday cake! [Web / Reprint]
- You know what he's wanting... [Web / Reprint]
- What?!? No angel food?!? [Web / Reprint]
- Alexander about to get really dirty... [Web / Reprint]
- Alexander considers his options! [Web / Reprint]
- He's seriously considering it... [Web / Reprint]
- You can get messy...really, it's OK! [Web / Reprint]
- Yum! [Web / Reprint]
- He seems to be enjoying this! [Web / Reprint]
- Cars! Cool! [Web / Reprint]
- Alexander likes his snow globe... [Web / Reprint]
- Alexander likes his snow globe... [Web / Reprint]
- Alexander rides his new car! [Web / Reprint]
Alexander's Baptism at St. Eugene's!
14 Jan 2006
We're two for two for baptising a baby during the celebration of the Baptism
of the Lord when it came time to offer up Alexander to the altar, as it were.
St. Eugene's has got to love having the bragging rights as a baptism during this
week is a surprisingly rare occurrence.
Alexander's godparents are from opposite sides of the country... literally!
Godfather Heath is currently based in Seattle where (if memory serves) he
focuses on quality for a big pharmaceutical company. What I do know is that he's
right in the middle of the aviation equivalent of Mecca in the beautiful
Northwest if you're a big fan of Boeing commercial airliners (and we know who
the aviation nut in this family is!). Godmother Melissa is one of Julia's co-workers
at the WakeMed children's emergency room who has a delightful son Gabe who
occasionally comes to play with Alexander's older brother, Nicholas.
But on one pleasant weekend, everyone was brought together once again for a
baptism officiated by Deacon Willie. The ceremony was obviously the same as it
was for Nicholas in terms of form (the Church doesn't exactly change quickly!)
with the usual questions but this one felt different (and in some ways, more
poignant!) considering all of Alexander's health problems over the past year,
Maybe it was because the past year has been a continual baptism of sorts for him
as there was rarely a day that went by where we (and pretty much everyone who
knows him and his story!) weren't asking for the powers upon high to watch over
him, take care of him, and help guide him to a better life than the one he's
started out with. And that journey is hardly complete with the return of the
seizures in November. We're under no illusions that the journey will be short
and easy.
The physical aspects of Alexander's journey are probably going to be much easier
than the spiritual journey. It's normal human nature to wonder why traumatic
things happen to them and why they were allowed to happen...the usual railing
against the general unfairness and hostility of the universe, if you will.
Hopefully, he will come to understand that they happen for a reason and those
reasons often raise many more questions than they answer. That his living and
suffering through the cortical dysplasia and it's other knock-on effects has a
higher purpose than merely tormenting and testing our faith. In the past year,
I've come to believe that one of his purposes of being in our lives is to truly
make us appreciate the gifts that we have and often take for granted. The gifts
of health, family, purpose, and honestly, of life itself.
That last one in particular cannot be emphasized too much...life is truly a
special gift even when we feel despair about just how much our lives are worth
in the face of the appalling and unimaginable things we see in this world from
day to day. As long as there is life, there is hope for a better tomorrow and
the desire to turn dreams into reality and vice versa.
One of my favorite books has a quote I've always loved: it is said that to
dream in the City of Sorrows is to dream of a better future.
Alexander has touched all of us spiritually through the past year and hopefully
his courage will inspire us as we grow along with him. Whether that's making
someone try to be a better parent or just a better person in general, his life
has already affected so many lives, many of whom around the world he will never
meet but will have profoundly affected nonetheless just because he was here. He
is our dreamer of that better future and those are powerful dreams indeed.
We're pretty lucky to be at ground zero, eh? :)
The dream of a better world and enlisting to be part of making that dream real
by being part of something greater than oneself...well, that IS
the sacrament of baptism in a nutshell! We may well have only one official
baptism with the water and oils (depending on your particular faith, that is)
but each day dawning is the opportunity to be born and baptised anew.
It won't totally make the alarm clock in the morning less annoying but it
certainly helps when you're contemplating facing the new day.
Alexander, seize the dream and make it yours...come what may!
- Alexander's baptism! [Web / Reprint]
- Alexander has an interesting smile... [Web / Reprint]
- Oooh...a bath! [Web / Reprint]
- This little light of mine! [Web / Reprint]
- Hot wax...OUCH! [Web / Reprint]
- Alexander and Deacon Willie... [Web / Reprint]
- Mmmm...fingers! [Web / Reprint]
- Heath, Melissa, and Alexander [Web / Reprint]
- One shoulder just waiting for a head... [Web / Reprint]
- The baptismal party! [Web / Reprint]
- Adrienne and Fitz [Web / Reprint]
- Gramps and Grammy [Web / Reprint]
- Gram, Grandpa Lee, Ben, and Meghann [Web / Reprint]
- A handful of cousins... [Web / Reprint]
- David and Susan Falwell [Web / Reprint]
- Mmmm...yummy baptism certificate! [Web / Reprint]
- Yay! Now, let's eat! [Web / Reprint]
- Happy boy! [Web / Reprint]
- Strong grip! [Web / Reprint]
- Gram, Julia, and Mairin [Web / Reprint]
- Gramps and Alexander [Web / Reprint]
Alexander says and does "pat pat"...
07 Jan 2006
And the choice irony for this entry is the person he was doing it with: Grammy
Pat.
That was funny on just SO many levels...I'm telling you that you just can't make
up this stuff!
Alexander's first hair cut!
06 Jan 2006
We didn't really want to admit that Alexander was doing a good imitation of Shaggy
from Scooby Doo but we pretty much had to face the facts on this one
today...that boy needs a hair cut.
We had found a salon that caters to children when we had a similar problem with
Nicholas and now it was time to introduce Alexander to the joys of a hair cut
with a personal TV. And of course, Alexander did really well for his first time
as his stylist worked the hair (thankfully the spike wasn't the final version we
went with but made for a good picture).
The funny thing was that the TV seemed irrelevant to Alexander provided he had a
comb in his right hand. In this line of work...it's a matter of using whatever
works... :)
Krispy Kreme...meet the Cuisinart!
01 Jan 2006
Oooooh...doughnuts!
Those immortal words spoken by Homer Simpson says it all...not much of a mystery
to this BLOG entry other than it was a plain glazed doughnut that was sacrificed
first to the Cuisinart and then offered on Alexander's altar of sacrifice
otherwise known as the tray for his high chair.
You've got to kind of feel for Krispy Kreme nowadays, what with all of the low
or no carbohydrate diets that are the craze right now and for them, that's
pretty much their entire product!
I don't think Alexander really cared what diet is the rage nowadays... but he
really liked that doughnut! :)