Maxwell Charles Munakata
A short gut, a long road, a full life.
A short gut
Max was born with 21 cm of functioning small intestine (less than
10% of the typical length) as a result of a 1 in 5 million
condition, extreme long-segment Hirschsprung's Disease. Before he was
diagnosed, a neonatologist told us that we would be "screwed" if Max
had Hirschsprung's. Max spent his first 130 days of life across 4 hospitals.
See: The diagnosis. The decisive surgery. The stoma resection.
A long road
Max is dependent on IV nutrition pumped through a central line to his
heart and continuous feeds pumped through a tube into his stomach. We
don't know whether he will ever come off of these. We lived with a
suitcase in our car while we waited for the call to fly him to Pittsburgh for an intestinal
transplant, a relatively new procedure. We were racing against
time while Max's liver failed from the IV nutrition.
See: Stopped breathing,
pool of blood,
leaking stomach acid,
puppy dog pajamas,
lives in our hands,
A full life We moved to Boston when Max was 7
months old, where Mark Puder and Kathy Gura saved his liver and life
an omega-3 based lipid. We now have the luxury of time to wait and
see how his intestine adapts, and to watch the latest
transplant developments come in. Max is thriving. We have 50,000 people to thank. We have
never known such happiness.
See: New normal,
go go go,
hippos, and a
The neonatologist was wrong. This is Max's story.
(Newest entries are at the bottom -- dates can be clicked on the left.)
Thu May 28, 2009
Wordle captures a lot about these
years, like how "transplant" disappears after Year 1, and Pittsburgh
gets replaced by Paris. And the ups and downs in the size of blood are
telling. But the disappearance
is not -- it is saving Max's life as much now as it did in years 1 and
2, allowing us to celebrate the texture
of these experiences, and the milestone of today.
Fri May 29, 2009
The boys are strangely quiet while Randy puts his bike away this
evening. They normally fuss when they're first squeezed into the bike
trailer, then ride happily together, and finally fuss again as they
wait to be pulled out after the ride. Not tonight. Randy exits the
garage to find Kai grasping his baby spoon. He was fed from it
earlier, on the pedestrian mall where I walked to meet up with the
boys. The spoon has long been licked clean. Kai touches it to Max's
palm. Max cups his hand, brings it to his mouth, and pretends to eat
whatever Kai has given him. They sit tight in the bike trailer, Kai
passing a new imaginary morsel to Max each time he finishes one.
Sat May 30, 2009
I need to learn about Patagonia.
Whenever Max calls out for us after tuck-in, I am the one to go to
him. Randy is too likely to indulge him, but I know Max needs to
sleep. I might read him just one story. And I limit myself to three
of the imaginary grapes he usually offers, then insist on carrying the
pretend bowl out with me despite his protests.
But tonight, Max wants to talk about his inflatable globe. He
describes places and asks me to point them out. D.C., where Daddy flew this
week. The place where Max and
baby Kai and Daddy and Mommy will fly this summer, and the place we'll move to after that.
I spent a college summer working at AAA, because I wanted to play with
maps all day.
So I can't bring myself to cut Max's questioning short. Instead, I
move on to opening a map of the world on his bed and explaining how
it relates to the globe. He points to random places on the map,
tracing an arc from the starting point of Denver each time, and I tell
him about his destinations:
The world is vast. I think we may be entering a new era of fun
googling. And of Max knowing how to stay up late with Mommy.
- Sweden: Where his favorite author lives. Her protagonists are often hippos.
- Spain: Where they eat dinner at 10 pm!
- Turkey: Where my college roommate is working for the State
Department at the American embassy. She moved there last year with
her husband and four kids under the age of 10 -- the youngest was 9
months old -- for a 3-year stint. They are immersing themselves,
touring ancient ruins and participating in archeological digs, staying
in cave hotels, and entertaining throngs of local kids and adults with
the culture they brought with them, in unlikely forms like a pogo
stick. Whenever I wonder how we're going to manage Berkeley, I think
of them. I remind myself that we are talking about only ONE year, TWO
kids, ONE time zone away (and close to ZERO culture shock and new
languages to master)!
- Italy: Where (after I name it) Max jumps in to say that he wants
to go see Ollie, who is there
with his family.
- New Zealand: Where Aunt Katie got kiwi t-shirts for him
- Patagonia: Max points here several times, to the tip of South
America. Patagonia, where... it's very far away. And very beautiful?
Wed Jun 3, 2009
There's nothing quite like seeing the world through the eyes of a
child. Except seeing it through the eyes of a husband.
Kai prefers his toys upside-down these days. After briefly playing
with the buttons and knobs on top, he flips them over and studies
This reminds me of a photo that Randy took of a towering
outdoor Buddha in Kamakura, near Tokyo. The bronze statue's image is
famous, but my aunt was shocked that she had never seen the
perspective Randy captured, from the back, where huge open windows let
air flow into the Buddha's torso.
And this reminds me that Max reminded me of this same photo, with his
toy-tinkering around the same
Thu Jun 4, 2009
I'm shocked to see a man standing in the back yard when I open the
curtain after nursing Kai this morning. It is 7:30. The guy who
was working on the wall usually showed up closer to
noon, sometimes not until 4:00. He would come a couple days in a row,
then not come for weeks. Randy and I finally decided that we could no
longer afford this low-bid guy. Yesterday, tails slung between our
legs, we returned to the high-bid guy. He and his team finish all the
cement block work before we get home from school today.
We just might throw Max's 3rd
birthday party in Boulder, not Berkeley.
Fri Jun 5, 2009
We momentarily felt abandoned yesterday, then exhilarated.
At our regular Thursday appointment, Speech Therapist Beth declared
that she was ready to stop seeing Max.
We knew he was making great progress, but her announcement still came
as a shock. Beth explained that in charting all of Max's language
abilities, she realized that he is now doing everything he should be
doing at this age. The only exception is pronouncing the "k" and "g"
sounds, a skill that should continue to improve with Max's eating.
I couldn't get my head around this change in perspective, since our
plan was to follow the recommendation for Max to continue with speech
therapy through preschool. So we pulled up that recommendation from
Max's assessment team. Sure
enough, aside from the k/g sounds, Max has already achieved all of the
language goals that the team set for him to meet by February 2010.
He may not be able to say congratulations, but he sure deserves
Sat Jun 6, 2009
We may not have much longer to spell things out that we don't want Max
to overhear. Randy tickles him this afternoon. Max protests,
giggling, and says, "S." "T." "O." "P." Just in case Randy didn't
catch it, Max then confirms what he spelled: "Stop."
Sun Jun 7, 2009
Max would approve of the French
He has been having trouble falling asleep. So we have started
counting sheep. He counts tonight at tuck-in: ... 41, 42, 43, 44,
I'm sure it doesn't help that he begins mainlining sugar at bedtime,
with his TPN hookup. But he has done this for 3 years, and has
usually managed to fall asleep quickly after his 9 pm tuck-in. Ever
since his rotavirus though,
he more often spends a couple hours playing in his room, jumping
maniacally on his bed, and crying out for us before falling asleep.
Counting sheep doesn't seem to be helping him. But it is entertaining
me: 46, 47, 48, 49, forty-ten, forty-eleven, forty-twelve,...
Mon Jun 8, 2009
Maria, the grad student in my
lab who tests Max this afternoon, asks whether we want the usual
pre-study reassurances. I laugh and say no. I know the details of
what to expect, and I know not to worry. Or so I think.
We reassure parents extensively before each study. If their child
does anything that seems bizarre, that behavior is probably exactly
what we are looking for, as a window onto how our knowledge develops.
They shouldn't worry, even if their child repeats actions again and
again, when they no longer make sense, and even if their child seems
to know exactly what they should be doing instead. We reassure
parents extensively after each study too.
But Max is so smart, right? It seems to be a trend among Omegaven
kids -- maybe because they're mainlining the fish oil that might help
make us smarter. Each day brings adorable developments in his
eagerness to read (English and Japanese), his counting, his memory,
So even though I know that today's games should trip him up, I'm still
amazed to see him look just like the hundreds of other kids we have
tested in this paradigm (developed by Phil Zelazo),
and behaving just as we predicted and described in a paper
8 years ago.
Randy and I laugh off the post-study reassurances from the grad
student too. It's reassuring in its own way, once the shock wears
off, seeing Max looking like such a typical 3-year-old.
Tue Jun 9, 2009
Nanny Kate asks me this afternoon if Max has learned how to read
When he calls for me after tuck-in tonight, he declares, "Daddy having
trouble with that Japanese book. Read it with Mommy." He flips
through it, pronouncing Japanese sounds like a native. But they have
nothing to do with what is written on the page.
His sense of English spelling can be similarly free-form. This
morning, he reads the letters on Kai's director chair: "K," "b,"
"one." These all seem like reasonable confusions. Then he announces
what they spell: Max! Later, Randy reads letters on a book
cover: H - I - P - P - O - S, and asks Max what they spell. Hippos
Max hasn't learned how to read, but he's eagerly learning.
Wed Jun 10, 2009
We checked off "pincer grip" on one of Kai's well-baby-checkup
checklists some time ago. But I had no idea just how accurate his
technique was until last weekend, when I poured a dozen whole grain
Cheerios and a dozen apple cinnamon puffs into a big mix on his high
chair tray. Kai ate every single puff before touching a single
Thu Jun 11, 2009
I hope that future milestones are met with less resistance. Kai
celebrates his 9-month birthday by rolling from his back to his front,
and from his front to his back, over and over, always via his left
side. I call out for everyone to come see. "Nooo," Max protests,
demanding that everyone "watch Max roll" instead.
Fri Jun 12, 2009
Max may have just an approximate sense of the number of sheep we count.
aspects of our number knowledge seem to be tied to the language we
learn in. When bilinguals learn number facts or operations in one
language, they are better at retrieving that information in that same
language than in their other language, at least when the numbers are
large and exact (e.g., precisely 63). When the numbers are
approximate (e.g., around 60), bilinguals can retrieve the information
they learn in one language about the numbers equally well from either
language. The approximate number system, which is common across other
mammals, is not tied to language.
Max asks me to count sheep tonight. I ask if he wants me to count in
English, French, or Japanese. He instructs me, "Just count in
Sun Jun 14, 2009
Last weekend, all it took was a cardboard box. This weekend, all it
takes is a low couch. Each one is enough to allow Max to spend the
afternoon giggling away with his cousin Maya.
Her little brother, Mateo, is closer in age to Max, but doesn't seem
to be of interest to him. Two winters ago, when Max looked at a photo
of our families together, he pointed to Randy and said "Dada." He
pointed to himself in person, then to himself in the photo. He
pointed to Aunt Corrie, and looked to me for her name. He did the
same with cousin Maya. We went through several rounds like this,
without him ever asking about Mateo, in the center of the photo.
Maya was the one cramming herself into the cardboard box last weekend,
so Max could close her in. Maya was the one he joined in the box, and
after it was converted to a tunnel, she was the one he kept crawling
through the box with.
And Maya is Max's focus today, even in the hubbub of our impromptu
houseful of great-aunts and aunts (one with a new puppy in tow),
great-uncle, Nana, and (oh yeah) Mateo.
Max has always seemed eager to connect with Maya. Now that he's
really talking, he can. They jump jubilantly off and on the couch,
with Mateo doing his best to keep up. Maya had been insisting that
she wants her sibling on-the-way to be a girl. But in the middle of
the afternoon jump-fest, she announces, "I want to have two
And Max has been insisting over the last couple days that we go back
to the fair, long-gone. I
was starting to worry that we wouldn't be able to satisfy his
entertainment needs. But all he needs is a box. Or a couch. And a
buddy like Maya. And maybe someday, like Mateo.
Tue Jun 16, 2009
A greeting from Max is worth a thousand words.
When I went downstairs to join him and Nana in the basement Sunday
morning, he instructed me: Go back upstairs, Mommy. He
couldn't get enough of playing chimes and ball and Hi-ho-cheery-o with
Nana during her weekend visit. He's in a perfect developmental stage
for having all kinds of fun with grandparents. Good timing, given
that baba and jiji will be moving in with us for a month (while jiji
teaches a summer session AI course at our university, during his
sabbatical) and then Grandma and Grandpa will help us make the road
trip out to Berkeley.
When Nurse Gail arrives
tonight to help with the TPN, Max greets her with: Daddy's coming
home. Randy has been in DC giving another robotics presentation -- a trip
of only a couple days away again, but one that throws off all our
rhythms. Last night, I slept for two hours before waking to Max
crying hysterically, spent half an hour calming him, slept one more
hour, spent 1.5 hours up around his nighttime cares, and then slept
two more hours before Kai cried out for his start-of-the-day
However impolite Max's greetings, I'm happy to have been sent back
upstairs, and to welcome Randy home tonight.
Wed Jun 17, 2009
Max asks Kate to sing a song from his Japanese songbook. He pushes a
button to start the music. When Kate freezes, he grabs her finger and
shows her how to run it down alongside the Japanese characters to
follow the lyrics.
Thu Jun 18, 2009
I'm finally prepared for Max's curiosity about his condition.
He caught me off guard with his first attempts to broach the topic. A
week ago, while I was disconnecting him from his pumps, he suggested
that he would disconnect Mommy next. I said okay, and lifted my shirt
to reveal my belly. Max looked to see stretch marks -- but no
broviac, g-tube, or ostomy. I thought he might pretend, but he
playfully said "Nooo," and we moved on. A week before that, he
suggested that I disconnect Kai. That time, he had already moved on
before I even registered what he said.
So I'm ready this morning, as I disconnect Max from his pumps, when he
says, "Put Kleenex in Mommy." I explain that the Kleenex I put in for
Max are to catch the leaking from his g-tube. Mommy doesn't have a
g-tube, so Mommy doesn't need Kleenex. Max ponders this information.
His next suggestion: "Change Mommy's bag." I explain that the bag is
for his ostomy. Mommy doesn't have an ostomy, so no bag. He is
silent for several seconds. "I have one!" He declares it gleefully.
He does not seem to need any reassurance. I add anyway: "Your friends
Christian and Ellie used to have ostomies."
(They have functioning large intestines, and so have since had their
small and large intestines reconnected, losing their ostomies. We're
thrilled when short gut kids reach this milestone, but also feel a bit
left behind each time, since Hirschsprung's is unique in this regard.
There is no functioning large intestine to reconnect to, at
least for now.) "Austin
has an ostomy."
Max seems totally satisfied. He moves on before I get to my comments
about how each person is unique and has different needs -- glasses,
braces, inhaler, etc. But I'll be ready for my spiel when he is.
Sun Jun 21, 2009
I can't fool baba. During our Father's Day call this afternoon, I
describe the delicious home-made Father's Day brunch that I treated
Randy to: smoked salmon, asparagus, and poached eggs, served with a
delectable herb oil; spinach strawberry salad; and not just one fresh
fruit pie (strawberry), but two (blueberry also)! Baba asks where I
Yep, to a friend's house.
But if I could cook, I would make a meal like this one to express my
appreciation of what a great dad Randy is.
Other kids see the bond between him and our boys right away. Max
protests as we prepare to head home. He announces that he will stay
behind -- to play with Ben (just 10 days younger than him) and
Harrison (2 years, 3 months older, while Kai is 2 years, 3 months
younger), or at least to play with their toys. Ben explains that Max
can't stay -- because he would miss his Daddy.
Tue Jun 23, 2009
We get both good and bad shocks at Max's hospital checkup this
He starts off with a big blood draw in the outpatient clinic, to check
his vitamins and micronutrients in addition to his routine labs, in
preparation for the transfer of his care to California.
Max has been excited all morning to go see "Doctor Jason." But as the
time for his nap comes and goes, and perhaps as he starts to feel some
effects of his blood loss, he loses interest in sitting through our
conversation with his team. So he and I take off. We run around the
halls, then end up reading books in the exam room next door to his.
That's when we hear everyone cheer.
Max's liver enzymes look
almost normal! They are finally in the double digits where they
should be, as opposed to the triple digits where they have been for
has granted us these years, and Max's liver seems to be healing. (The
correlation continues, with his hematocrit predictably down too, but
fine at the low end of normal.)
All of his other lab numbers that have come back so far look good.
And his growth in height puts him up around the 50th percentile.
But his weight has dropped way down, almost off the charts. We knew
he had not been gaining, because tracking his weight and mine is one
of Max's favorite daily rituals ("Weigh Mommy again!"). But somehow
Randy and I had not registered just how far this stagnating set him
back for his age. We knew he was growing taller. We also thought we
were addressing temporary setbacks, like the rotavirus (which required us to
cut his caloric input), by increasing the dextrose concentration in
his TPN. He did gain back the weight that he lost when he was
But his food input has been reduced to accommodate his meds, ever
since we learned a few months ago that we should ideally give a longer
window (1 hour) without food before and after his omeprazole antacid doses -- one
dose in the morning, one in the evening = 4 hours without food. We have
also been experimenting with stopping his g-tube feeds in the wee
hours of the morning (3-6 am), which seems to help his output during
that window, as well as his digestion and interest in food the rest of
the day. He tells everyone today about the hot dog he was eating for
dinner last night.
We thought the cuts in input might help Max absorb more of what he
does take in. But he needs more calories. We will increase his TPN
dextrose from 14% to 16.5%. We will shrink the fasting window around
his omeprazole to 30 minutes per dose, for 1 hour total per day. We
will consider returning to running his g-tube feeds through the entire
night. As he gets caught up on weight, we hope to start cutting back
his TPN dependence again.
One shock will be aggressively addressed, the other one savored.
Thu Jun 25, 2009
When the mic-key balloon in Max's stomach pops this afternoon, Randy
and I can't remember the last time we replaced it. It bursts just
before we head out with the kids to meet friends for happy hour.
We're relieved it didn't pop 30 minutes later. We're even more
relieved by the significance of our collective memory failure, which
would have been impossible when we were dealing with inexplicable breaks and leaky messes every few
We don't know why this mic-key lasted so much longer -- maybe because
it came from a new lot number. The suspicion about
the Nutriport (the alternate
brand, which fit best by far) is that the products we received were
close to their 3-year expiration date, so the balloons were prone to
popping. The representative who flagged this problem suggested that
we test out a brand new balloon. Randy tried to order one, but kept
receiving old ones. He was told that products could not be checked
for expiration dates before being sent -- we would have to take what
we got, and if it was close to expiring, try ordering again. We have
now amassed a stockpile of 3-year-old Nutriports and have yet to see a
We'll hope for continued memory failures with the mic-key.
Sat Jun 27, 2009
"Zoinks!" That's what Max says when he walks in as I am changing into
my biking shorts this afternoon. I don't think he's actually shocked
about me finally getting out to ride (for the first time since the
couple of outings I managed after Kai's birth and before de Quervain's tenosynovitis).
Max just likes this exclamation.
He has also been singing to himself as he carries out his projects
around the house, like opening up medical gauze packets and polishing
our cabinet handles. He repeats, melodically: "I got some work to do
After our ride to play in the park and throw rocks in the creek, my
wrists feel only slightly tender from braking and shifting gears. I
appreciate the reminder of how much more manageable everything feels
(work, preparation for Berkeley, etc.) with a little break away from
We'll see how manageable it feels trying to convince Max to take a
break from his Scooby Doo DVD during bag changes.
Mon Jun 29, 2009
Nanny Kate tells us that she feels at liberty to talk endlessly about
how cute Max and Kai are, since they aren't her kids. I feel the same
liberty, since the boys look nothing like me. I ask Max this morning
what he would transform into if he were a Transformer. He is playing
with Transformer playing cards from Kate. The cards show common
vehicles that metamorphose into fierce fighter robots. Max's radical
transformation of choice? Into Mommy.
Randy points out that Max may be
the one person not at liberty to talk endlessly about Kai's
Tue Jun 30, 2009
If our couch potato ever
shows an interest in crawling, I wonder if it will be on his knuckles.
This is how Max has been demonstrating to Kai how to crawl. He gets
down on his hands and knees and circles Kai, who sits happily, ever
immobile, on the floor. Max crawls on top of clenched fists, despite
me explaining that I used this technique only to protect
Fri Jul 3, 2009
Max is making up for Kai.
Max can't get enough of baba, pulling her hand to bring her around
with him, ever since she and jiji arrived yesterday afternoon. He sends me back upstairs again
this morning. He calls for baba when he wakes from his nap. When
Kate walks toward his room, he slams the door and goes back to
Meanwhile, to everyone except me, Randy, Max, and Kate -- Kai says,
"Don't look at me or I'll cry."
Sun Jul 5, 2009
Baba makes Kai cry again. But this time, fat tears roll down his
cheeks because she is putting him in his high chair. He doesn't want
to leave her arms. His stranger anxiety has been higher than ever
recently -- at dinner last week, Randy and I cringed whenever our
waitress came over and insisted on cooing at Kai, sending him into
hysterics each time. But he seems to have decided that baba isn't so
strange after all.
Mon Jul 6, 2009
Max tells Kate about the fireworks he saw on Saturday. She is
impressed with his descriptions of how bright and big they were across
Randy and I have debated whether to let Max stay up on prior
4th-of-July's. This year, we both figured that Max would enjoy the
city's fireworks enough for the sleep disruption to be worth it, and
the view from our house would provide a comfortable introduction.
But on the big day, Max skipped his nap, then played hard with Randy
and me after a bike ride to the park, and with baba and Jan and Dick back at our house.
He ended up falling deeply asleep at his regular bedtime, and didn't see a
single firework. I suppose this makes his description all the more
Tue Jul 7, 2009
Recent events around Max's morning cares shouldn't be shocking.
Yesterday, I turned around after finishing his cares, and discovered
that Kai was not where I had left him. He was only a couple
feet away, but the idea that any
form of locomotion had transpired still made me gasp.
Last week, at some point during Max's cares, I realized that I was not
listening to what he was saying. Such moments seem inevitable, given
that he is talking all day long. Still, weren't we just hanging on
his every word, wondering if he would ever get to this point?
Thu Jul 9, 2009
I wish I had shown baba more appreciation growing up. Now she is
helping Kai to not repeat my mistakes.
After nursing, he wriggles his arm out from behind my back, and
squeezes it between my belly and his body. He brings his arms
together, and he claps. He also claps when Randy swings him crazy
high at the park. Ever since baba taught him clapping earlier this
week, Kai seems eager to show his appreciation, beaming. Today, he
claps when I tell him that Auntie Naoko and Uncle Mike will arrive
late tonight. We'll see what he thinks in the morning.
Mon Jul 13, 2009
Max is a good age for appreciating Naoko and Mike.
He makes a comically pouty face this morning when I tell him that they
are leaving. And at dinner tonight, he points to the empty chairs and
insists that "Naoto and Mite come back." We remind him that we'll
probably see them next after we move to -- where?
"Talifohnia," he remembers.
We'll see then if having them pretend to sleep so he can wake them up
is still all the fun he could ask for. Over and over again.
And we'll see if Kai's terror-alert system continues its downward
assessment of Naoko and Mike's threat level -- from level red crying
at his first sighting Friday morning, down to level orange on Saturday as he watched
them spin in circles and make faces from the safety of his high chair,
and finally down to mid-level yellow moments of happiness in Naoko's
Tue Jul 14, 2009
Textbook behavior continues to shock us.
We cram into a testing room to watch Kai's debut in my lab -- baba,
jiji, Randy, me, and Julia, the experimenter. Kai doesn't disappoint
us. I fully expect level-red crying at the sight of Julia. But Kai
is brave. He reaches for Mr. Lion, with Julia's coaxing. And he goes
on to get just as crazily stuck in his ways as Max did.
Wed Jul 15, 2009
If only we could get Kai to change his position.
Linda Smith and colleagues
have discovered that babies can easily break out of their crazy
habits, like the one Kai demonstrated yesterday, if you move
sitting to standing before you start hiding toys in new places.
Pop them out of their specific perspective on the task, and you pop
them out of their habits.
That's if they'll agree to stand.
After Kai demonstrated his strong search pattern yesterday, Julia
instructed Randy to stand him up. But we didn't get to see whether
that change allowed him to find the toy. Our couch potato was too
busy struggling against putting any weight on his feet.
Thu Jul 16, 2009
Baba gets a crash course in pump-operation this afternoon.
I'm running late for a research talk I'm scheduled to lead. Randy is
supposed to participate in the discussion. Nanny Kate has called in
possibly sick, so we decide that she should stay away just to be
Our plan is to leave Max and Kai in baba's hands. A fine plan, given
that Max hasn't let up on his demands for baba's attention, and Kai
has become almost as demanding for her. A fine plan, except that Max
needs to be hooked up to his formula pump during his nap. Our first
idea is to forgo the pump. But Max really needs his calories. Our
second plan is to postpone Max's nap until after 2:00, with us rushing
back after my talk to hook him up for his nap. But as we make our way
out the door around noon, Max decides that he is ready for his nap
So we go with Plan C. Randy gives baba a quick tutorial on how to
connect, run, and disconnect the food pump. This process seems simple
to us, accompanied by none of the life-threatening risks associated
with the IV pumps. But I remember how terrifying everything seemed to
us at the start.
Baba indicates that she is all set, and we rush off to school. My students and I present our work
to our colleagues. As soon as we finish, Randy and I check in with
baba. Both boys are sleeping peacefully. Randy and I get to squeeze
in a couple meetings before heading home.
We have been gone 3.5 hours. During that time, Max and Kai slept a
combined total of 4.5 hours. It all feels too smooth to be true.
Baba says the same thing when we arrive home to find her playing on
the floor with two very happy boys.
Mon Jul 20, 2009
Max walks by as I am uploading the video
of Kai's visit to my lab. He
circles back. Kai searches in the wrong place for the hidden toy. Max
and I look at each other, at the video, back and forth, giggling.
Tue Jul 21, 2009
Marveling at your kid might best be done out of earshot of your
Randy and I have long been perplexed by Max's reluctance to go on
afternoon adventures. He screams in protest about getting dressed
after his nap, and he screams about being dragged out of the
house. NO, SDAY INSIDE! NO SDAY HOME! Then we go out --
bike-riding, grocery shopping, to happy hour -- and he inevitably has
a great time. Why is he so stubborn in his protests? It's like he
just doesn't want to go along with the coordinated family
When we mention this at dinner with my parents, they are reminded of
the summer of 1983. Our planned family trip to Japan got derailed by
my complete refusal to go. Baba took Junko and Naoko, and jiji ended
up staying stateside with me. My parents think they can see where Max
Randy agrees. He admits to being stubborn, but he claims that his
stubbornness has never taken such an irrational form. I'll wait to
hear what his parents say when we next marvel about Max's.
Wed Jul 22, 2009
Our crazy trips seem to be on. Despite obstacles where we least
expected them. Despite Max not knowing who's going where.
Months of uncertainty around renting out our house get resolved
instantly this morning, at the moment we receive the final, signed
copy of our lease from an Australian family of six. They will move in
in just under a month. With this contract, we clear the final hurdle
for our sabbaticals. I ask
Max who is moving to California. I hold up my fingers as he names
6. Milo. (Kate's kitty.)
I hold up a seventh finger. Is anyone else coming?
No, I explain, Kiki is not coming with us to California. She will
come with us to Amsterdam
this weekend. The unexpected obstacle for that trip is obtaining
ostomy supplies for Max -- not something we can do without or find on
the road. But our month's supply is back-ordered with our home health company. The
company might receive these supplies tomorrow, and might
get them to us just before we leave. We can't take the risk. I call
the product manufacturer directly. They have the product, but can
only send us a handful of samples according to company policy. They
do call the home health company on our behalf, but end up talking with
a representative who claims that we are trying to get our next month's
supply early, in violation of our health insurance policy, when we are
just trying to get the products I ordered weeks ago. I get sent on a
wild goose chase calling medical supply companies across Colorado, who
either have the same back-order problem, or won't supply out-of-pocket to
someone who has insurance that should cover this product through
another supply company.
I can't remember the last time I've felt so helpless. Tears get me nowhere. Thankfully, our health
insurance coordinator saves the day, arranging with our home health
care company to ensure the supplies will arrive before we depart.
So, Kiki is coming with us to Amsterdam. I ask Max incredulously,
"Can you really not remember anyone else moving to California, besides
you, mommy, daddy, Kate, Neko, and Milo?" He looks blankly at my
seventh outstretched finger. I resort to a hint. "Who do you like to
play and giggle with?"
"No, baba is not moving with us to California, but she'll probably
visit. Who do you like to show how to crawl?"
"Yes! Baby is moving with us to California!"
Max seems unfazed -- by the fact that Kai will join us, or that Max
seemed to have forgotten about him, or that we're about to go on these
He probably would have shrugged off my ostomy-supply despair too.
Fri Jul 24, 2009
Academisch Medisch Centrum is the next hospital we don't want to see.
Not that we don't appreciate the recommendation this morning from Robin's family. He is
completely off of TPN and no longer has a broviac, following a small
bowel and colon transplant in April. The operation was performed in
Groningen, the only hospital in the Netherlands to perform bowel
transplants. Robin was the third child to receive donor intestines
there. His mom thanks Omegaven
(and Emily's mom, for
directing her to Max's site for it) for improving his liver to the
point where liver transplant was unnecessary.
Robin is thriving. We are thrilled to imagine possibilities for Max.
But we still hope to ignore their recommendation on this trip.
Sun Jul 26, 2009
I keep thinking I'm going to wake up. And when I do, Max will still be
in the hospital, racing against time as he waits for an organ
donor while his liver fails. I'll tell Randy about the fantastic
dream I had where a miracle
fish oil saved Max's life. NP Kristin will walk into our
hospital room. I'll tell her about how in the dream, she made it
possible for us to take a crawling Max to Paris, then got us to Amsterdam with a
running-chatterbox Max (who declares "I'm weddy for my next fwight!"
after landing in Chicago) and his suddenly-social baby brother (who
after months of fearing even family members spends much of the flight
to Chicago talking up the guy sitting next to me, then does the same
to everyone within earshot while we wait for our connection, and can't
get enough attention from the flight attendants). When I wake from
the dream, we will laugh and cry over the absurdity of it.
Mon Jul 27, 2009
Once again, nothing matters
once we enter the heart of city. It doesn't matter how late we stayed
up Saturday night (into Sunday
morning) packing all of Max's
medical supplies, despite starting days in advance. It doesn't
matter how proud we were to remember Max's carseat at the airport this
time (instead of me needing to race back to the car for it), only to
discover that we left the key piece that allows the carseat to snap
into the stroller back at home. The seat fits reasonably well
balanced upside-down over the stroller handle. It doesn't matter that
we need to wait until we get off the plane in Amsterdam to say what a
spectacular job the kids did, or risk facing glares from neighbors on
the flight. Max fell asleep soon after take-off from Chicago (and
subsequent hook-up to his pumps), and woke 15 minutes before landing.
Kai cried for a grand total of only 2 minutes of the 7 hour flight.
Unfortunately, those 2 minutes were the loudest crying we have ever
heard, and were torturously spread across the prime sleeping hours of
the flight to prevent any reasonable stretch of sleep.
As soon as we see the beautiful canals of the city, it all feels worth
It doesn't matter that tall brick buildings like the one housing our
apartment have huge metal hooks hanging from their roofs. These hooks
are essential for moving large heavy items into places like our 3rd
and 4th floor-level apartment. But we have no rope or pulley for
getting 9 days of IV nutrition (3 are extra backups) up that way. So
the heavy fluids (and all of our suitcases) get lugged up the
terrifyingly steep and narrow flights of steps.
The apartment is spacious, light, and gorgeous. It is long and
narrow, so that Randy and I and the kids can take two bedrooms at one
end on the 4th floor, and hopefully not disturb the sleepers in the
bedrooms at the other end (Kristin in one, Ken and Anna in the other, Michael Frank to join on the
couch downstairs for one night).
We spend the groggy afternoon getting oriented, after picking up some
deliciously aged gouda and bread and making a meal of it outside
Westerkerk, the church where Rembrandt was buried. We walk past the
Anne Frank House, and its long line of visitors. We make our way to
Central Station, where we pick up tram passes for the week. The kids
are tucked in and sleeping by 8pm, and we marvel over Indonesian
take-out at their smooth transitions.
It doesn't matter that both boys wake a couple hours later and scream
until midnight, or that once they're finally both settled again, Randy
talks in his sleep and wakes Kai.
We're here. We can't wait for tomorrow.
Tue Jul 28, 2009
This city feels perfect for Max. And just fine for Kai.
After a leisurely morning (with Max sleeping until 8:00 and Kai until
10:00), we board the tram right outside our apartment. We ride it
north to Central Station, where we pick up a canal boat. Max could do
this all day, riding new forms of transportation and taking in the
scene -- tall, narrow houses rising up from the water, bridge after
bridge for our boat to pass under, people of all ages on bicycles
But we pull him off at the Van Gogh Museum. He runs around the big
open spaces, and rides the glass elevator and escalators. The modern
art exhibit is his favorite, with a large Jean Tinguely
scrap metal sculpture that moves and creaks and groans when you push a
big red button on the floor nearby.
Kai nurses during the canal ride, and sleeps through Van Gogh. Ken is
amused when I take him back to the exhibit after he wakes up. I show
him Van Gogh's least popular paintings, the ones with no crowds so
that I can push Kai's stroller right up to them.
Both boys seem to appreciate the profound implications of subtle angle
variations in Mondriaan's
work at least as much as our resident skeptics, Kristin and Ken.
We walk to a nearby playground, which features a swing big enough for
our entire family. Ken pushes us higher and higher, to the delight of
everyone else in the family, while I find myself asking about the
weight limit. We wander
a beautiful public park and one of the few places that Randy and I
recognize from earlier trips. After a quick dinner at Wagamama, we
get home the old-fashioned way, on foot.
Wed Jul 29, 2009
It's a good thing that Max isn't responsible for our choice of
activities in Amsterdam. And at the same time, that he IS
I ask him this morning what he wants to do today: boat ride, park,
museum, climb the steps of Westerkerk, or flower market. He gives me
a confused look, like maybe I've lost my mind. He reminds me that we
just did the boat ride yesterday.
But in Amsterdam, we take boats like taxis. When we hop on one today,
Max narrates excitedly throughout the canal ride about other boats we
pass. He may have thought we were done with boats, but I don't think
he can get enough.
The stops on either side of the taxi ride are also chosen with Max in
mind. The first stop is the Magere Brug ("skinny bridge"), the most
famous of the 1200+ bridges in Amsterdam. Our guidebook promises that
we won't have to wait long to see it in action, and sure enough, after
a few minutes, the bridge master comes bicycling up. He shoos us off
the drawbridge, then raises it so that a boat can pass underneath.
I only recognize how much our activities are geared toward the kids
when I invite Anna (who arrives this morning) and Ken to join us on
our second stop. Their
daughter Sasha is back at
home with her grandparents. It takes me a minute to register Ken's
response -- that he would rather go see a museum. I suppose that
taking a boat taxi, followed by a tram, and then trekking to see one
of Amsterdam's few remaining windmills isn't necessarily the most fun
for all ages. It turns out to not even be the most fun for the ages
we have in mind, when we arrive at the windmill just after it has
closed down for the day.
But we enjoy the adventure of getting there, and the walk through the
quaint town of Sloten. Max doesn't even seem particularly
disappointed by "windmill not working." The longer-than-expected
outing causes Randy and me to miss the evening's conference boat cruise
by 15 minutes. Kristin encourages us to make a night of it anyway, so
Randy and I relax over a delicious Peruvian date-night dinner on the
All courtesy of Max's Amsterdam.
Thu Jul 30, 2009
The kids get both expected and unexpected mentions during Randy's
plenary address at the Cognitive Science conference this morning. He
opens and closes his talk with a photo of Max and Kai, together with a
diagram of his virtual robot, Emer, all underneath the header
"My Three Sons." The audience seems unsure whether he is joking. I'm
not sure what I would tell them.
As Randy finishes answering questions, an alarm from his electronic
calendar boings and pops up on his computer screen, and appears on the
huge video screen projecting his talk to hundreds of conference goers.
"Do Max." It is almost 10 am in Amsterdam -- almost 2 am in Boulder,
where it would be time to replace Max's Omegaven
and do his other early morning cares. (I did them this morning, since
Randy and I are on the same overall sleep schedule here, so we are
alternating who gets up in the middle of the night.)
Randy closes his alarm. The audience applauds his talk, which serves
as the kickoff to the conference. I'm so proud of all my guys --
however many you count.
Fri Jul 31, 2009
Randy and I always want to bring some of our traveling mindset home
with us. Now we wonder if Kai will be the one to do so.
Soon after we arrived, Randy jokingly asked why every city isn't
designed around a ring of canals. This beautiful setting, and the
walk-ability and easy public transportation of the city, have
certainly helped us to explore with few set time-lines or goals. But
canals or no canals, it seems like we should be able to bring some of
this relaxed mindset home with us, to occasionally manage similar
breaks from work back in Boulder.
Getting an apartment with a refrigerator to house Max's meds has
allowed us to have conference friends over every night (our friend
Lael from grad school days last night, Randy's collaborator Christian
tonight, and Liz Spelke and
her son Joe tomorrow), before getting the boys tucked in and heading
out for dinner. (Max rests quietly with Kristin until it gets dark
out, then informs her: "I'm weddy for you to weave my woom now,
We check email only daily, rather than constantly -- thanks to high
roaming charges when we're out and about, sporadic wifi availability
at the conference, and wifi not reaching up the steep steps of the
apartment to our bedrooms.
All of this represents a major shift in mindset for us.
Kai's new mindset is being a social animal. When Kristin brings the
kids to the conference today, we sit outside enjoying a picnic lunch.
Kai babbles loudly to catch the attention of any passers-by, then
gives them scrunchy-nose smiles to keep their attention as long as he
I have a hunch that Kai will have better luck bringing his vacation
mindset home with him.
Sat Aug 1, 2009
We decide today to do as the Dutch do. But they don't warn us about
the risks of kicking your kid in the face, or of picking this
So we proceed to rent bikes from a vendor in Leidseplein, Amsterdam's
liveliest square. Suddenly, the cyclists that have seemed so crazy to
us all week (always on the verge of striking a pedestrian) seem quite
reasonable. The pedestrians now seem clueless (always on the verge of
stepping into the red bike paths that run alongside each road and
We ride west to Vondelpark. On its spacious paths, the ride turns
peaceful, beautiful, and fun -- the perfect way to tour. Until Randy
kicks Max in the face.
We are accustomed to biking with the kids in a double-wide trailer
positioned behind the back tire. Here, they get strapped in to hard
plastic single seats fastened to the bike itself. Kai rides in a seat
on Randy's handlebars, waving his arms excitedly with the breeze on
his face. Max rides on a seat behind Randy's, occasionally grabbing
hold of the top of Randy's shorts. His grabbing apparently does not
provide enough of a reminder. Randy dismounts the bike in his usual
way, putting his right leg on the ground, and swinging his left leg
over the back of the bike. And kicking Max in the face.
The first time, Max is stunned but recovers quickly. The second time,
when Randy almost catches himself in time, Max seems quick to forgive
him. Luckily, there is no third time.
The ponds and trees and playground of Vondelpark hide the frenzy
building across the rest of the city. We stumble into it as we head
north to the bohemian Jordaan neighborhood, then east to the
Scheepvaart (Maritime) Museum. All of Amsterdam seems to have spilled
out into the streets, for the annual Gay Pride Parade. Of
course, being Amsterdam, the parade proceeds through the canals. We
transition from the tranquility of Vondelpark (where there are strict
prohibitions on noise) to riding alongside boatloads of revelers
dancing to blaring techno music. We try to navigate our bikes around
not just the usual flow of pedestrians, other cyclists, and trams, but
through hundreds of thousands of parade-watchers.
Kai manages to fall asleep in the commotion, slumping over in his
plastic seat. Several people stop to take his photo. When one person
asks for permission, I think, "Like father, like son." A conference
fan asked Randy to pose for a photo with her the day after his plenary
It's hard to believe that the party is just beginning. But when we
walk to dinner with Liz and Joe a few hours later, we find ourselves
unable to move at several points, crammed in among the celebrants. We
eventually reach our destination to enjoy the best rijsttafel (18
small spicy dishes served with rice) of the trip. The party has
finally started winding down when we walk back to our apartment around
We have done as the Dutch do, and feel ready to return home.
Sun Aug 2, 2009
On our way back to Colorado, Kristin asks about our favorite moments
of the trip. The flights today can easily be ruled out. I want to
hug all the passengers in the back of the Amsterdam-to-Chicago flight,
who comment on how cute Max is as he happily runs laps -- the few
minutes when he is not screaming. I want to apologize to all the
passengers in our section. We tried everything we could to quiet our
boys, even before the flight attendant helpfully informed us that
people were trying to sleep.
The domestic moments of travel somehow hold a special appeal for me --
searching for our local grocery store the day we arrived (and finding
it near the bloemenmarkt, Amsterdam's famous floating flower market),
and trying to decipher our apartment washing machine. (I think we did
manage to actually get our clothes
clean, unlike in Paris,
though the confusing settings suggested it may have taken 9 hours.)
And I loved Kristin's fun routines with Max, like putting colorful
pills in a glass of water each morning, and coming home at day's end
to discover the sponge stingrays and dolphins that emerged.
Kristin also discovered the most fun place in all of (Max's)
Amsterdam. When she and I arrived at TunFun, an underground
playground, after Randy's talk, we were surprised to see that we had
to pay to get in. But we understood immediately upon entering. Max
ran down the two stories of switchback ramps to the ground level,
romped in cages filled with balls, climbed through obstacle courses,
bounced on an inflated version of an Amsterdam street, and set up and
knocked down bowling pins. Then he gravitated to the tough back
corner of the playground. Three older boys were making giant LEGO
forts amidst graffiti-strewn walls. They were bullying away a boy
around Max's age when we arrived. Max jumped right in, stacking LEGOs
as high as he could reach, then handing LEGOs to the bigger kids to
stack. One of them turned to Kristin, and declared, "He is okay."
They started lifting Max up to stack LEGOs on top of the fort. As
soon as each fort was completed, the older boys kicked it down with a
huge clattering, with Max squealing and joining in.
But my favorite moment here is the same as in Paris -- no single
favorite, just the daily wanderings with the boys in any direction,
walking or hopping on boats or trams.
Kristin's moment came riding the train home from the conference. Max
watched out the window contentedly as the sights of Amsterdam passed
by, while Kai concentrated on a woman cooing at him in Dutch.
Randy's favorite moments came during our bicycling adventure.
Raising a kid with special needs has been likened to traveling to Holland, when
you were expecting Italy. Holland is fabulous.
Wed Aug 5, 2009
Max wakes and says, "Play outside today, in my sandbox. The shovel and
bucket are waiting for me." Our yard is DONE. We have two weeks to
enjoy it. We'll celebrate with a last-minute party this weekend.
Please join us!
When: Saturday, August 8, 3-6 pm
How: With space, time, and number. ABSOLUTELY NO GIFTS. But please
wear something -- a shirt, a hat, a piece of jewelry, a cut-out from a
magazine -- that shows anything related to maps, calendars, clocks,
counting, etc. Or just wear a watch, or whatever you wore last year
-- vehicles are still a big favorite.
Where: Our home.
We'll provide drinks, snacks, and birthday cake. Any updates to the
plan will be posted here.
Fri Aug 7, 2009
Max has been insisting that he is 4 years old. I think he may be
confused by having a birthday party thrown for him in August, after
turning 3 back in May.
Sat Aug 8, 2009
Some waits turn out to be worth it.
Today's wait is short -- less than an hour for Max and Kai to finish
napping after our party starts. Waiting for them to wake means that
they are overwhelmed and fussy when they groggily discover the party,
but well-rested and happy for the rest of it.
The months' long wait for our back yard to be kid-ready means a fun
party. The kids (including 3 Kai's and 2 Max's) squish sand between
their fingers and toes. Max also gets a mouthful when he comes in too
close to some vigorous shoveling, but he recovers well after a round
of spitting. The grass feels especially plush under the bare feet of
Randy and me -- we have never had a yard with grass before. No one
falls into our deep (now blocked off) window wells. Max does manage
to discover how to escape through the gate to the front yard, but 5-year-old Henry takes
responsibility for shepherding him back each time. Kai has brought
his Amsterdam mindset home, and happily gets passed from Great Aunt to
friend to student.
I'm not sure people think it's worth the wait when we keep them
guessing about the meaning behind our time-space-number costumes. Max
wears a map of Amsterdam on his front briefly (until he rips it off)
and a -1 on his back. Kai
and Randy have 0s on their
backs. Kai's map is of our house; Randy's is of Boulder. I wear a
map of Berkeley, and a 1.
As the last guests leave, Max is trying to prolong a game of chase.
He starts talking about having another party. This time, the wait
should be a little shorter.
Party photos by Seth Harris.
Sun Aug 9, 2009
Today is supposed to be judgment day.
I have been lunging with a desperate "YES" at anyone who offers to
help us move, while Randy has been scoffing at the idea that we would
need any help.
We leave in 10 days.
We will be working across 7 of them. We won't have child care on the
Today is one of those 3 days. We are granted a best case scenario,
with both boys cooperating with big naps, then joining on a
two-station-wagon drop-off to Goodwill. Randy and I are able to
devote 12 combined hours to moving. We also recruit help from Nana,
who is visiting for a long weekend. With all of that effort, we get
through 75 percent of... the kids' toys and books and gear.
Randy takes this as a good sign. The time does also include my
sentimental picture-taking before saying good-bye -- to the carseat we
and then Kai home from the
hospital in, to the stroller the carseat fits
in if you remember the right
plastic piece, and to their baby swing and activity center.
But we haven't touched anything other than this subset of the kids'
I will keep lunging, Randy will keep scoffing.
Mon Aug 10, 2009
I guess I don't need to be pregnant to get emotional when going through old
baby clothes. This time around, maybe it's the nursing hormones.
Or the stress of moving. (Max may be feeling it too. He wakes this
morning, asking, "Where's all my stuff? And baby's stuff?") Or maybe
it's the continuing emotional recovery from baba and jiji's departure,
after what felt like an all-too-short 5-week stay. Or maybe it's
feeling like I'm not ready for Kai to turn 2. The move makes it seem
like it's happening now, a year early, since we are downsizing to a small
collection of 1-2 year-old clothes and toys (to fit in our smaller
Berkeley home), and donating anything else he won't need once he's 2.
Whatever the reason for my emotions, it helps to have such a good
cause. Carter's family is
starting a consignment website for children's clothing, with proceeds
to benefit short gut kids. The link should be up soon, for donating
or purchasing clothing -- check Carter's
site or the short
gut wiki or back here for updates.
Tue Aug 11, 2009
At this morning's hospital checkup, I find myself wishing I could
magically transfer all the reassurances I am receiving about our
We're buried under bins and bags and boxes. I updated my facebook
status last night to say that I need to hear from the people who say
that packing up your family for a year is totally worth it. The
reassurances are coming in from academic and special-needs friends who
have moved for extended stays up to 8000 miles from home. They say
that the hassle is definitely worth it -- even if it may not feel like
it during the month before we move, during the move itself, or even
during the month after we move.
I want reassurances that work this well for the news on Max. He has
gained little to no weight in the last 3.5 weeks, despite the recent
increase to his TPN. He is
falling back off the charts. His TPN is maxed out in terms of the
dextrose concentration that his GI team is comfortable with, so we
can't increase his calories unless we increase his time on the pump,
from the current 12 hours overnight.
His enzymes are creeping up,
possibly as a result of the high dextrose concentration taxing his
liver. We are battling leaky
mic-keys again, which have led to 3 bag changes per day for the
last several days. These changes have felt grueling yet manageable,
but they feel tragic in the context of Max's weight. Leaking of
stomach contents means that he cannot get in the feeds he desperately
needs. His stoma output has been higher than usual the last few days.
Dr. Soden notes that Max also has some gas in his ostomy bag, another
symptom that we have noticed in recent days. These symptoms may
signal bacterial overgrowth -- too many bad bugs relative to good bugs
in the gut's delicate balance. Dr. Soden wants to try a round of
antibiotics, and if that treats Max's symptoms, to try cycling
antibiotics every month. This is a common routine for short gut kids,
but one that we have hoped to avoid. Max has taken antibiotics to
treat bacterial overgrowth only twice, back
and August of 2007. But
Dr. Soden has long suggested that Max might be able to handle more
feeds under a more aggressive antibiotics treatment.
Randy wakes after Max and I return home. Upon hearing my update, he
starts providing the reassurances. Max's height is up, which is
encouraging. He may look like he's not gaining weight only because he
is dehydrated from his high stoma output. The difference in fluid can
have a big impact on weight. If so, just getting Max's fluids back in
sync could make his weight look more encouraging, with no pressure to
increase his TPN hours (and even hopes of decreasing his TPN and
helping his liver), and no need to worry so much about his reduced
feeds on top of dealing with the hassle of his leaky mic-key. His
fluctuations in stoma output could just reflect a passing cold, with
no need for antibiotics.
I hope all these reassurances turn out to be right.
Wed Aug 12, 2009
When Max calls for me before 7 this morning, I run to his room. I
want to quiet him before he wakes Kai, or Randy, or anyone downstairs.
I'm halfway through his cares before I realize that there is no one
downstairs, for the first time in 6 weeks. (Nana left yesterday
morning, after heroically managing to get Max dressed for his doctor's
appointment while I nursed Kai.) We'll have 6 more mornings like
this, then will wake with Grandpa and Grandma and hit the road.
Thu Aug 13, 2009
After Kai nurses this evening, he and I sit and watch the video of
Max's first walking, over and over again. Kai is transfixed. I
wonder if his locomotor milestones will feel anywhere near as
I get my answer a few minutes later.
Yesterday morning, Kai moved his knees forward four times (left,
right, left, right), to position himself to grab a DVD case. I
squealed in excitement, but Kai concentrated on his video prize, then
on Max trying to grab it from him. He seemed to have no realization
that he had moved himself.
He has been leading everyone on for weeks. Baba and jiji were certain
they'd witness his first crawling during their visit. Kristin thought
she would see it in Amsterdam. Then we figured that Nana would be the
After Kai and I finish watching the video of Max tonight, we go to
Max's room, where Randy is getting him tucked in for the night. I set
one of Max's trucks outside of Kai's reach. He shimmies over for it,
wobbling around while mostly maintaining a sitting position -- a move
that has served him well for over a month. Then I roll the truck
several feet away. He gets a little more of a forward knee motion in,
and stretches to grab the toy. Then he starts crawling across the
Max can't stop giggling.
It is a funny crawl. Kai's right knee looks like it's part of a
normal crawl, but his left knee never touches the ground. He holds
that leg in more of a squatting position. Right knee crawls forward,
left foot squat-steps forward, right knee crawls, left foot steps.
Kai makes his way over to Max's IV lines. Max exclaims, "Baby's
grabbing my tubeys!" And he continues giggling at him.
I am a blubbering wreck. The couch potato who has been content to be
carried everywhere in my arms, squeezing his legs around my hips when
he doesn't want to be put down, can suddenly get himself where he
wants to go.
Just in time to get strapped into his carseat for the long drive to
Fri Aug 14, 2009
My lab group is already easing our transition. This afternoon, I show
Max their good-bye gift -- a family pass to the Berkeley Children's
Museum. He studies the photos on the pass. Later, I hear him
announcing to Daddy that there is a train set and other kids in
Sat Aug 15, 2009
Max refuses to nap, but he makes up for it by spending the day running
around and cheering Randy and me on while we pack.
Sun Aug 16, 2009
My fashion sense, to the extent that I have one, might be described as
sluggish. Max's is more immediate.
I have been sleeping in a t-shirt from my high school days. Max
points out the holes in it in the mornings. Preparing to move has
inspired me to finally throw it out. Today, I donate jackets from my
college days (renewing my sense of nostalgia for the Bay Area) and the
first grown-up outfits that I bought when I started teaching.
One of my graduate students from that era stopped by yesterday with
her family. Max saw that 3-year-old Caroline was wearing a cute
jumper. He then insisted, after Randy finished his cares, on getting
out of his pajamas. Unprecedented. He put on a shirt. Randy tried
to put on his pants, but Max refused. Caroline wasn't wearing any,
If anyone in our family is going to bring Berkeley fashions back to
Boulder, I think it will be Max.
Mon Aug 17, 2009
The only reason I believe that this move will actually happen in two
days is that it has to happen.
The Australian family will move into our house the morning after we
move out. They stop by this afternoon to see the place. Their kids
jump on the beds, start making plans for their rooms, rummage through
our open storage bins, and try on our velvet graduation caps. The
5-year-old boy sees Kai, and asks if the baby can stay with the house.
The 7-year-old boy asks the same question of Neko. Max feeds off of
their energy, jumping on his trampoline, and happily agreeing to let
the boys stay in his room for the year. The mom asks what the
protocol should be if their family breaks something. One of the girls
(one is 11, the other is 12) explains that the boys are the ones who
We'll move out Wednesday. We won't leave the baby, the cat, or
anything fragile behind.
Tue Aug 18, 2009
By 7 pm, most of our moving-related disasters have been resolved. All
we have left to do is pack up our house.
Randy and I lose most of what is supposed to be our final day of
packing. I knew I'd be sitting in a dissertation defense this
morning. But we didn't know that Randy would spend this time trying
to resolve a snag in our final delivery of medical supplies. He
ultimately decides that he should spend the afternoon driving down to
Denver to pick it up himself.
Kate loses her wallet. She is supposed to start her drive to
California tomorrow, like us. I watch the boys this afternoon while
she searches in vain, then puts holds on her credit cards.
Grandma and Grandpa's luggage gets lost by their airline.
Max loses his entire stomach contents when his mic-key balloon pops
during his nap. I can't find where the replacements have been
But by evening, the medical supplies from Denver are safely stowed in
our rental truck, Kate has found her wallet amidst her boxes, Grandma
and Grandpa's luggage has been located and is on its way to our house,
and Max's new mic-key (located immediately by Randy upon returning
from Denver 10 minutes after Max's nap) is in his stomach.
We can only hope for a similarly-smooth resolution to our lost day of
packing. Grandma and Grandpa put in a heroic 16 combined hours toward
heavy lifting of moving bins; emptying of pantries, kitty litter, and
fireplace ashes; driving the rental truck to Kate's apartment so she
can load her things; playing with the boys; and replenishing all of us
with ice cream, perfect with fresh Colorado peaches dropped off by
The three of us last until 1:30 am. The house does not look
like we can leave tomorrow. Our hopes are with Randy, who has a
couple hours left in his regular wake cycle.
Wed Aug 19, 2009
We have no intention of following Cousin Corrie's advice.
When she came over with Maya and
Mateo to say good-bye yesterday, she shared the strategy that has
worked for their road-trips: Wait until nap-time to put the kids in
the car, take breaks from driving after they wake, then drive late
into the night while they sleep.
I explained that this strategy wouldn't work for us, due to Max's
evening hook-up to his pumps, and Grandma and Grandpa's likely
But we end up leaving at 2 pm. Even with Randy's amazing packing
efforts until 4:30 am, it takes another 10 combined hours of help from
Grandma and Grandpa (with Max eagerly contributing by pushing an empty
bin up the truck ramp) before we're ready to hit the road. It takes
another minute for Randy to realize that we're leaving without Neko.
We leave with him at 2:05.
We end up taking breaks from driving after the kids wake from their
naps -- for an ostomy bag change in an Arby's parking lot, a Safeway
stop for cat food. (Remembering Neko didn't remind us to bring his
And we drive until midnight, to reach our reserved rooms in Riverton,
Wyoming. We hook Max up, 5 hours late. Kai screams for an hour
during the night. Nothing will soothe him with his rhythm off.
We're exhausted -- and hoping to do a better job not following
Corrie's advice the rest of the trip.
Thu Aug 20, 2009
Enjoying the journey might be easiest when you're oblivious to the
This afternoon, we discover that the road through the Shoshone
National Forest in Wyoming is deeply under construction -- bumpy,
dusty, and congested. We pass giant backhoes, graders, and dump
trucks. "This is the best road ever!" Max declares.
He has no idea where we're going. But neither does anyone in our car.
Grandma and Grandpa planned our route and made the hotel reservations,
and now are leading the way. We follow their truck, enjoying the
winding roads and views of rock cliffs, blissfully free of any
thoughts about destinations.
Randy makes our state-of-mind obvious to the park ranger who asks if
we have any questions as we enter. Randy says he'll go with the
obvious one: When is Old Faithful erupting? The ranger gently
suggests that Randy might ask that question when we get to
Yellowstone. She hands him brochures for this place, Grant Teton
We eventually get to Yellowstone. We stop to wander around the
bubbling deep blue thermal pools of West Thumb Geyser Basin. At our
next stop, we end up missing Old Faithful's eruption by 10 minutes.
We decide not to wait the hour or two for the next eruption. As a
result, we get treated to a spectacular sunset drive along the Madison
River. Neko enjoys the views from Kai's lap. By 10 pm, Max is hooked
up in our West Yellowstone hotel, and Kai is crawling around after
Neko. We're ready to enjoy the destination, too.
Fri Aug 21, 2009
Most of today's surprises are good ones.
The main exception is that Max vomits across the wee hours of the
morning. I wonder if our ice packs didn't get cold enough in the
hotel freezer in Riverton, so that his formula spoiled during
yesterday's drive. Randy wonders if Max has caught a virus. Both of
us imagine trying to drive with this turmoil happening in the back
But whatever the cause, the vomiting stops when day breaks, as
suddenly as it started.
We're on track to hit the road before noon for the first time this
trip. But our unexpectedly long wait for coffees and breakfast
burritos to-go gives us time to run around a park, do a curbside bag
change, and then shrug our shoulders about the schedule and enjoy a
relaxing picnic breakfast.
Even with the delay, we arrive at our destination of Twin Falls, Idaho
while it is still light. Max notes this unusual event, exclaiming as
we pull into town, "It's day!"
We walk along the rim of the breathtaking Snake River Canyon after
dinner. Randy shouts at the alarming sight of someone jumping off the
record-high Perrine Memorial Bridge in the distance. Then he sees the
parachute open. We rush over in time to watch a second BASE jumper,
then a third, in quick succession.
I guess there's only so much looking you can do before you leap.
Sat Aug 22, 2009
Max learns soon after we cross the Nevada line that you must be 21 to
gamble. This is what the nice law enforcement officer tells him when
Randy tries to sit him in front of a slot machine during an afternoon
Sun Aug 23, 2009
On the first day of this trip, Max said that he wanted to go home. He
said it again a little into the second day. Randy explained that home
is wherever Max and Mommy and Daddy and Kai and Neko are. From then
on, Max has talked excitedly about getting to our new home. He
announces at odd times, "THIS is my new home!" -- while we are driving
across a bridge, or today, at an In-and-Out Burger stop for lunch.
The boys have been cooperative travelers, all things considered. They
have settled into the rhythm of taking a single, synchronized
afternoon nap while we drive. Kai and Neko prowl together each night,
investigating the new hotel room. Max got down on his hands and knees
to join them last night in Reno. Kai has started to use sign language
on this trip. "More" was his first sign, 3 days ago. The next day,
he put it together with "eat," repeatedly asking: more eat, more eat,
more eat. During yesterday's drive, Max started alerting us when it
was time to break out the snacks: "Baby's signing more!"
Our final, 3-hour leg today turns into 7 hours, with stop-and-go
traffic across the California drive. We feel exhausted but ecstatic
upon reaching our rental home in the Berkeley hills, a tree-house in
the sky. Max captures our feelings, running in circles around the
living room, waving his hands around his head, and proclaiming, "I
love my new home!"
Mon Aug 24, 2009
I never really knew my grandparents. The barriers of language, living halfway around
the world, and teenage
rebellion were too great.
So I savor the luxury of the time that Max and Kai get with their
grandparents -- with baba and jiji out from Ohio for 5 weeks this
summer, Nana's regular visits to Boulder from southwest Colorado, and
now, this heroic move. We knew that Grandma and Grandpa were
orchestrating our transition, but now we see just how impossible this
whole adventure would have been without them.
They aren't romanticizing their labors. Grandpa's job as a public
information officer with FEMA is unpredictable -- he can be called
away for a disaster at any moment, for any length of time. But he
could assure us, just a few hours into this visit, that he would
definitely be working for FEMA and unavailable when we move back to
Boulder in a year.
We want to at least treat them to lunch before they leave today -- at
a restaurant that doesn't have a sign in the bathroom stating that
employees must wash their hands before returning to work. Instead,
Grandma and Grandpa venture out on the twisty roads to bring back
breakfast, unload our stuff from the truck, drive the truck with
Kate's stuff to her apartment, then continue home to LA.
We'll look forward to more relaxing visits with all the grandparents
throughout the year.
Tue Aug 25, 2009
I remember smiling and waving at fellow rollerbladers along the
Charles River path, when Randy and I moved to Boston for our postdocs.
None of them smiled back. Rollerblading was not the novelty there
that it had been in Pittsburgh, I realized after receiving half a
dozen blank looks in return.
I find myself suppressing that same smile and wave this afternoon, as
we run errands in town. I can't get over how many Asian Americans we
see at the grocery store. I resist the urge to join the two older
women standing behind the checkout line, chatting away in Japanese. I
hold back from comparing life histories with the Caucasian and Asian
parents of the girl Max plays with at IKEA.
But I'm smiling and waving on the inside.
Wed Aug 26, 2009
I get lost on my way to the next-door neighbor's house this
Living in the hills brings fabulous views. We watch the fog burning
off in the mornings to reveal the city of Berkeley and the San
Francisco Bay beyond. We watch the fog roll in with the sunsets. We
catch glimpses of the Golden Gate Bridge during clear afternoons.
But the terrain is so steep and uneven here that I can't figure out
the route to get next door. I am picking my way down the embankment
between our houses when Randy spots me. He directs me back up the
embankment, past our house, through a concealed gate, and down a
There, Max is playing with Charlie and Leo, who are 2 years old. They
are highly responsive to Max's commands to run and chase. They have a
sandbox dug into their hillside. I suspect we'll get to know this
Thu Aug 27, 2009
Randy and I aren't the only ones feeling unsure of our whereabouts.
I wake Randy this morning so we can skype in for a weekly research
meeting back in Boulder. I don't see how we can manage this meeting
on top of everything we need to do to get settled here. Randy reminds
me that we foresaw that we couldn't possibly manage it, so we are not
expected to attend this one.
My lab manager phones to coordinate urgent funding matters back in
Boulder. While we work through the details, Randy gets a call. He
shouts in disbelief. Our renters in Boulder are calling to ask what
they should do with the large box that just arrived for Max. The box
is marked "refrigerate upon opening."
Luckily, we planned for snags like this during our transition. Our
extra supplies here should last until Max's TPN delivery can be picked
up from our house and rerouted to Berkeley.
Fri Aug 28, 2009
A baby-sized sip of beer. That's what Max complained was all that
Daddy gave him yesterday evening.
I explained that it's funny to talk about baby-sized sips of beer,
since babies aren't allowed to drink alcohol. You can't drink alcohol
until you're 21.
"No," Max protested. "Can't play
that tard game til you're 21." When I talked with him the day
before about how he is half Japanese, he corrected me, saying that he
is three -- and can't play that tard game until he's 41.
If only he were so patient about all his vices.
Sat Aug 29, 2009
Our crazy move suddenly feels manageable. All it takes is turning our
backs on our bins for the day. Or at least most of the day.
We start with a stop at Berkeley Hardware to buy nails, for
childproofing the deck off of our family room. Then we drive around
town searching for a bookstore. We don't bother to look up a specific
store, since we figure that bookstores will be like Thai restaurants
here -- one on practically every block. But the bookstores here seem
more like the day cares and preschools -- they must be around
somewhere, but you don't just happen across them. We finally spot the
university bookstore. I pick up some maps, and we head for the Bay
Bridge to San Francisco. This is the first of three bridges we plan
to show Max today. He excitedly points out the island in the middle
of the bridge, and the sailboats on the water.
We go for the full tourist experience with a stop at Fisherman's
Wharf. We have forgotten our stroller, and Max is too hot and cranky
to walk, so Randy and I each carry a kid, inching along with the
sweaty crowds taking in the street performers and scene. Max insists
on stopping at an overpriced sit-down restaurant for lunch. But we
emerge much less sweaty and cranky afterward, to enjoy seeing the sea
lions at Pier 39 and the views of the city. Max pleads to go on a
boat. "Another time," Randy promises. Kai has been alternating
between giving severe frowns and crinkle-nose smiles to capture the
attention of strangers. During our walk back to the car, he holds his
hand up and slowly rotates it back and forth, as if the crowds have
gathered to watch his parade.
We head to the Golden Gate Bridge -- the bridge on today's loop tour
that Max talks the most about. But he sleeps through our drive over
it, through our stop at the viewpoint just after it, and through the
industrial Richmond-San Rafael bridge back toward Berkeley. Randy
suggests that Max and Kai should compare notes, since they were awake
and asleep for complementary bridges.
When we return home, Randy finishes nailing in the wiring to prevent
the kids from falling between the slats of the deck railing to the
steep hillside far below. I continue unpacking bins. We're still far
from settled. But now we feel more like we'll get there.
Sun Aug 30, 2009
Max and Kai cry and scream as they get loaded into the bike carrier
this afternoon. Maybe they know something.
People have told us that it's not really possible to bike around our
neighborhood. But we figure it's worth a try. We're mountain bikers,
coming from Boulder, after all.
The kids normally calm down once we start moving. The only problem is
that we can barely get moving. Our altitude advantage might have
helped us -- a week ago, or if we hadn't eaten our way through
drive-thrus across 5 states.
Kai calms first and burbles away to himself. The rest of us all cry
in our own way as Randy and I struggle around each impossibly steep
bend to see an even steeper one ahead. Beetles pass us by.
We make it to the boundary of Tilden Park. We have traveled less than
a mile. Randy and I are drenched in sweat. Max is still complaining.
We had envisioned the park as an oasis of flat paths to cruise around
on, but it appears as steep as everything else. We can only travel
downhill from this peak, and we can't imagine making it back up any
So we turn around. We race back down the hills to our neighborhood
playground, where Kate has been taking the boys. The playground is
terraced into the precipitous hillside. The top level fits a slide
and swings, where Max and Kai giggle away, at last.
Now we know something too.
Wed Sep 2, 2009
Kai is helping me to appreciate what I have. Not just in the standard
lost-in-my-adorable-baby sort of way, but also with his comic
violations of this maxim with each meal. He stuffs his mouth full of
food, then immediately calls for more. Just as he starts to chew what
he's got, he grabs a fistful of more food, calls for yet more, and
grabs another fistful. As I put food in my mouth, he lunges and yelps
so excitedly for whatever I'm eating that he drops what he has from
his mouth and hands. I tell him, "Appreciate what you've got."
Not that I need help remembering to appreciate what I have. We're
happily settling into our beautiful, quirky house. (The upstairs sink
runs only cold water for the first minute, then only hot water after
that. The oven is non-functional.) I am loving getting to know this
side of the Bay. (Take-out dinner tonight from Cha Am, the Thai
restaurant that comes closest to being on our block, is deliciously
fresh and spicy. Kai eats his usual fistfuls. Max's appetite makes a
comeback for the meal, after a prolonged lull around reflux that has
lingered since our trip -- probably viral.) And the lab group that I'm here to
learn pediatric brain imaging techniques from has given me a warm
welcome over the last couple days, over meetings, tours, and a Persian
I feel no need to yelp.
Thu Sep 3, 2009
Here's what Randy and I agree on about today: Max is scheduled for his
first appointment with his new pediatrician. We arrive as sweaty as
we are stressed, after doing the third bag change of the day before we
can leave the house, wading through seemingly endless phone menus en
route to inform the doctor that we're running late (we're told that
this is not a problem), discovering that the challenges of finding
parking in the Bay Area extend to medical facilities, and wandering
the corridors of the main building before learning that our
appointment is in another building in the distance. We arrive, 45
minutes late, to find that the doctor never heard anything about our
phone call. We get rescheduled for next week. We learn on our drive
home that we don't have the referral that we thought we had for the GI
doctor who has been recommended to us here. We won't get this
referral until after we see the pediatrician.
We disagree on whether one of us claimed as we were leaving the house
that the route had been totally scoped out, then indicated that
directions were not needed during the phone call. We spend a long
time disagreeing about this.
But now we've definitely scoped out the route.
Sat Sep 5, 2009
It took me years to confess my dirty little secret to Jeff Kerr-Layton, the doctor who
Jeff went to Cal (UC Berkeley), and likes to play up the rivalry
between Cal and my alma mater. So he was shocked to see Max in a
Cal sweatshirt one day. He was even more surprised that I couldn't
remember which of my family members had given it. I confessed the
dark secret: All of my siblings-in-law went to Cal as undergrads -- my
sisters' partners, and my partner's sister.
Uncle Mike kicks off the Cal-Alum-siblings-in-law-tours-of-Berkeley
this weekend, after driving up from LA with Auntie Naoko. He
introduces us to both popular hangouts (like The Cheeseboard Pizza
Collective for lunch, where we have seen the crowds lining up and
eating on the median strip) and a Pakistani hole in the wall (Kabana,
which we never would have found on our own). He explains the mystery
of the concrete slides we have seen at our local park and heard about
at other parks. (You slide down on cardboard.) He gets worn out
wrestling with Max, who is clearly feeling much better after kicking
We introduce Naoko and Mike to our nook of Berkeley. We drive up to
Tilden Park this afternoon, where we ride the scaled-down steam train -- over a
bridge, past other trains, and through cool, dark tunnels, where all
the kids squeal and Kai nestles into me. This outing is perfect for
Max, until he sees trains that we can't ride -- in a hobbyist area,
where people work on their own wagon-size engines and ride them around
a track. We explain to a wildly protesting Max that you have to bring
your own train here. Next time, he says, he'll bring Emily and Gordon
and Percy. We end the day with a sighting of 6 wild turkeys in our
back yard. I had told Naoko and Mike that we see them regularly, and
I thought I had seen them fly but couldn't believe it. They share in
the apparent hallucination, watching fat turkey after fat turkey lift
its body skyward, flying to roost among the towering redwoods outside
our family room.
We'll hear Aunt Katie's alumnus perspective in November, maybe even
joining her to root for Cal at a football game. And we'll get Uncle
Dave's take on our newly beloved hometown in December, during a visit
with Cousin Toshio and Auntie Junko.
And I'll probably never hear the end of it from Jeff.
Sun Sep 6, 2009
For better and for worse, Max is enunciating proudly these days.
Naoko and Mike ask him how old various people are, like Mommy and
Daddy. (21 is a common answer.) Mike asks how old Dato is. "TOSHIO is eight," Max
responds, correcting Mike's pronunciation. I had wondered if Randy's
insistence on referring to pajamas as "dita," as Max has, would lead
Max to do the same. But now Max always corrects him too, insisting on
And there is no mistaking what Max is demanding at a party this
evening at the Mill Valley home of Randy's high school classmate. "I
want beer, Daddy!" (We have heard that a taste for alcohol is common
in short gut kids.) To everyone's amusement, Max enthusiastically
answers Randy's questions: How old do you need to be to drink beer?
21! How old are you? Free! Then, he goes right back to
his crystal-clear demands.
Eventually, Max gets convinced to run around with the mobs of kids at
the party. Maybe this outing will help to ease Naoko and Mike's
departure this morning. Only the back-of-the-mouth consonants still
seem unusually difficult for Max. He states repeatedly, "I want Nato
and Mite not leave."
Mon Sep 7, 2009
Everything looks good for our second attempt to bike around our
Randy and I now have more accurate expectations about the terrain. We
have also improved our diets. (I'm not sure exactly how healthy our
feasting-tour of Mike's favorite restaurants from his college days
was, but it must have been better than the fast food days preceding
our first biking attempt.) And we're hoping that first ride strengthened our
sprint muscles just a bit, for powering up steep inclines. And our
endurance muscles, for continuing to power up steep inclines. Our
tires are firm, after Randy realizes at the start of today's ride that
the Colorado air we pumped into them needs to be supplemented closer
to sea level.
Our ride to the park is a breeze.
But the biggest factor is that it's a different park, downhill
from our house. This park is also terraced, with the play area for
the youngest kids at the top, but each terrace is bigger and nicer at
this park. Most importantly, there are other kids -- something we've
never seen at the other park, and something we really want for Max,
since we may not have preschool options for him here. Max takes
advantage, racing with a girl his age from the top terrace down to the
next. Her father, and Randy and I, have no luck trying to convince
them to race back up the hill (or to leave their play area by any
means) when it's time to go home.
Our ride home is not a breeze. But Randy has identified the most
gradual way to make the climb. It is close enough to manageable that
things look even better for future bike rides.
Tue Sep 8, 2009
Everything looks good for our second try with the pediatrician too.
With the route truly totally
scoped out, we arrive 15 minutes early. Max begins with an eye
test -- his first. The nurse pulls out a chart with pictures, and
checks whether he can name them up close before positioning the chart
for the eye test. She points to an umbrella and asks Max what is. He
stares at it blankly.
One of our first impressions upon moving to Boulder was that people
don't use umbrellas. Randy and I were running an errand when it
started to rain, so we broke out our jackets and umbrellas. Everyone
around us acted like it wasn't raining. Maybe we've adopted the same
attitude, so that Max doesn't know about umbrellas. That should
change during the relentlessly rainy winter that we've been warned
The nurse points to the next picture. Max stares blankly at that one
too. It's a house. Then he looks back at the umbrella, and says "J."
The handle does look like a J. "Oh!" the nurse exclaims, "He knows
his letters?" She pulls out the letter chart that they use for older
kids. She points to the T, the O, and the H. He names them all
correctly. He calls a V a U, so she skips that one for the test. He
labels all the letters she points to correctly, row after row. Other
nurses stop to watch. Max suddenly refuses to label any more. That
puts his vision at 20/25 -- taking after Dad rather than Mom,
fortunately. One of the nurses follows after us, to ask whether I've
done special drills to teach him letters. (No.) I feel a little
better about the fact that we are unlikely to find a preschool spot
for him during our year here.
The route to this medical facility actually does take only 20 minutes
when you know where you're going. Good thing. The referral to our
new GI doctor is now in, and we'll be back to the same building next
week to see her.
Wed Sep 9, 2009
Max may not know much about umbrellas, but he is becoming intimately
familiar with fog -- as in "I tan't see dat Golden Gate Bwidge, Mommy.
It's too foggy."
Thu Sep 10, 2009
Max asks Kate this morning what nannies do. She says they come and
take care of children.
That just doesn't seem to capture it.
Kate has been with us since the day Max turned 1 year old. She
explains to him that he was the same age as Kai is now -- just a baby.
She has been in Max's life for as long as he can remember. He calls
for her at the park this evening, each time he finds something
interesting he wants to share. "Hey, Kate!" Randy and I have biked
here with the kids again. We ask Max, "Do you see Kate anywhere? How
about, hey Mommy, or hey Daddy?"
And Kate has been in Kai's life from the beginning, staying at home
with Max all day and night and all the next day when Kai was born.
(She and Max went to a pet store and looked
at mice.) At the height of
Kai's stranger anxiety, he would scream at the sight of anyone other
than members of our immediate family or Toshio's, or Kate.
Randy and I have often remarked that Kate has made this year in
Berkeley possible, by making the move with us. But really, she has
made our family and our work and our lives as we know them
Max seemed perfectly satisfied with Kate's answer, though.
Fri Sep 11, 2009
Kai has no special demands today. So I celebrate his birthday by
shamelessly showing videos of him and of Max during a research talk I
give at Berkeley. Across the day, Kai listens politely through rounds
of happy birthday singing, from Randy, me, Max, and Kate. We tell him
that his first birthday party will be Sunday. He doesn't care. Max
Sat Sep 12, 2009
The thing about buses is that you have to wait for them. Randy and I
try to explain this to Max at the bus stop, as he demands that we get
on the bus that has yet to arrive. He doesn't remember our waits in
the bitter cold when we lived in Boston, and we never had to wait
long in Amsterdam.
Randy and I were stunned the first time we saw a bus careening around
these steep hills. They don't do it all that often. The bus closest
to us doesn't run on the weekends. The further bus is not that far,
but it is uphill. We stop to catch our breath and shed layers on the
way. We arrive at the stop, and we wait. And wait. This bus comes
once an hour. We had to catch this one, to fit in our plans for a
public transportation tour -- from the #65 bus to the BART train to
the Bay ferry. But ultimately, we must explain to Max, the thing
about buses is that you sometimes miss them.
Sun Sep 13, 2009
Kai reacts to his happy birthday song this afternoon like any rational
person might react to a large group of people suddenly closing in,
chanting in unison, bearing fire, for no apparent reason. He cries
like he's wondering if he's about to be sacrificed.
Otherwise, the party is a hit. Randy's high school classmate notes
that after living in Berkeley for only 3 weeks, it's pretty good to
already have a houseful of kids. Max makes a grand entrance, waking
from his nap an hour into the party. He jumps into the fray in his
bright red pajamas, still his outfit of choice. (And we can finally
access Kai's clean clothes and change him out of his food-stained
pajamas.) The kids play with trains and (miraculously) with Neko, and
run around together just as excited about spider-sightings as they are
about turkey-sightings. Randy and I catch up with old friends (from
high school through grad school eras), and continue to get to know new ones.
Max has been eager for more time with other kids. He spin in circles
in the living room, declaring, "I'm so excited!" And Kai recovers
quickly from the fright of the birthday-cake ritual. His repeated
attempts to grab the flame on his single candle are thwarted by Randy.
We think Kai wants to eat the flame. (At night, he often signs
"light." When we hold him up to look out at the sparkling lights of
the city, he then signals "eat.") But he quickly transitions to
double-fisted enjoyment of chocolate birthday cake.
After the party is over, Max plays with two plastic spoons. He asks
for more, but I explain that we need to save the rest. We have been
trying to teach him not to waste resources, that paper stuff comes
from trees, and saving is good for the planet. He agrees to stop at 2
spoons so we can save the rest -- "for de nedst party!"
Mon Sep 14, 2009
Max takes a late nap, so we don't get out the door for our after-work
adventure until 6:00. That's still enough time to drive to the
Berkeley Marina for a gusty, sunset walk on the pier out into the San
Francisco Bay -- enjoyable even with Max screaming in protest. Kai is
a content snuggled bundle in his stroller. Max comes around when we
find a playground at Shorebird Park.
Tue Sep 15, 2009
We take Max to meet his new GI doctor this afternoon. This time, it's
a fellow parent that he impresses with his literacy. Max runs into
the waiting room, straight to a glass-top table with an enclosed bed
of sand and vehicles. He points to a sticker on the table and says
(just as the sticker does), "Play from the bottom." He proceeds to
look under the table, grab a dangling magnet, and run it along the
bottom of the table to move the vehicles. An incredulous father asks
me how old Max is. I tell him, but I explain that Max did not just
read the instructions. He must have heard someone read them during
one of his many visits to this room across the time window of this
appointment. (Mostly, Randy gets to know the new doctor while Kai and
I chase after Max.) The father looks relieved.
Thu Sep 17, 2009
After Randy's main day of Boulder skype meetings today (mine is
Wednesday), we squeeze in a date night. It has been a while. The
shift in mindset is apparently so disorienting that when we return
home, Randy wonders aloud what Kate is still doing here.
Fri Sep 18, 2009
After all we've been through, I'm still no match for immunization
shots. The crying and screaming alone I think I could take. But
Kai's imploring look does me in -- the look that pleads for me to
protect him instead of pinning him down through shot after shot -- 5
total for his 1-year immunizations. At least he is quick to forgive,
or at least to forget. He is calm in my arms a minute later.
Sat Sep 19, 2009
I know it's supposed to be a myth, this idea of the supermoms who can
do it all.
We arrive in Menlo Park this afternoon, at the beautiful home of a
friend of mine from college. The place is incredibly tidy. I
remember how shocked we were during Naoko and Mike's recent visit, at
how neat the home of a friend of theirs was. Randy asked if she had
just cleaned it. She said no, it wasn't particularly clean. Naoko
explained our shock by saying, "You should see their place." Her
friend replied, "Well, they have kids." Naoko countered that our
place was never particularly neat before the kids came along
Well, they have a 15-month-old here, Kylie. And another baby due
later this year. And my friend's wife makes us feel warmly welcome,
all while popping in and out of the gathering since she is on-call for
her medical practice.
A college boyfriend is here too, with his family. His wife has
brought a birthday gift for Kai. And a delicious potato salad, to add
to the artfully arranged platters of fresh cut fruits and
No one else looks like they are wearing the same clothes they wore
We arrive late. Kai is soaking wet -- we have forgotten to change his
diaper. I set him on the changing station, and rummage through his
diaper bag, hoping. Miraculously, we have actually managed to pack
clean outfits for him. But they are all wet, from a sippy cup that
got thrown into the bag. Randy almost joins the gathering after Max
wakes up in the car. They head straight for the bathroom so that
Randy can do Max's cares.
It all works out. Kai ends up in one of Kylie's outfits. He spends
much of the gathering trying to figure out how to respond to
17-month-old Audrey's hugging. Max runs around in play tunnels in the
back yard. He tolerates Audrey's hugging. The rest of us get to
catch up on our lives, old and new.
On our way home, when we are almost back to Berkeley, we accidentally
end up on the Bay Bridge. Paying the $4 toll, and heading toward San
Francisco when we should be tucking the kids in, seems to capture the
disarray of our lives. But we discover that we can exit the bridge at
Buena Vista Island, where we catch gorgeous dusk views of the city.
We can't do it all, but we're doing fine.
Sun Sep 20, 2009
We get inspired by an Alcatraz swim -- specifically, a swim from
Alcatraz to San Francisco.
Friday evening, I discovered that the Berkeley Rose Gardens and
Codornices Playground are only a 20-minute walk down from our house.
A long, dim pedestrian tunnel connects the two spaces -- one space
filled with roses along a terraced amphitheater overlooking the San
Francisco Bay, the other space filled with play structures and a
steep, winding, slick concrete slide (only Randy has braved it so
far). Max raced between the two spaces again and again, screeching
and waving his hands -- a tunnel monster. I rode home with Randy and
the boys (who had driven to meet me at the park after running
errands), instead of climbing the countless steps back home, along the
paths that criss-cross the Berkeley hills.
Yesterday morning, we were short on time, so we drove the kids to and
This morning, Andrea and John
(the British colleagues who house-sat for us when we moved to Boston
swim the chilly 1.5 miles of currents from Alcatraz to San Francisco.
Randy and I feel inspired enough to try getting our family to and from
Codornices on our own power. There is an easy 10 minutes,
spent mostly pumping our bike brakes as we careen around sharp curves.
Back is a grueling half hour. No part of the route is all that
much steeper than the hill to our home in Boulder, just like no part
of the Boston winter was all that much colder than the winters we know
and love in Boulder. But the cold was relentless in Boston, and the
steepness is relentless here.
We manage to get back in time to meet Andrea and John at our house,
and to hear about their extended tour of California. We hope to hit
some of the same spots during our year: Yosemite, Big Sur, Redwood
National Park. We head out for a scrumptious dinner at a local
vegetarian sushi restaurant, where we refuel from swims and
swim-inspired activity. And we chase after Max, who seems inspired
enough to spend most of dinner running around the block.
Mon Sep 21, 2009
We received every assurance that the transfer of Max's health
insurance would be no problem.
Some things have gone more smoothly than others. We have met Max's
new pediatrician and GI doctor. Randy drew Max's first labs here on
Friday, and we drove them down to the medical facility -- to the
surgical building that we wandered
around lost in on our first
trip. Randy also picked up Max's first California-dose of
omeprazole on that outing.
These are all good steps in our medical transition. But the lab
receptionist told me that it has been a long time since a parent
dropped off labs -- she thought she knew what to do with them. No
word back yet on the results. And Randy was handed a hefty bill for
the omeprazole. He explained that Max's insurance covers this
medication, but all he could negotiate for now was a delayed billing.
The transfer of Max's coverage is still in flux.
This morning, we return to the surgical building, for a consultation
about Max's mic-key. It
continues to leak the contents of his stomach, soaking his dressings
and clothing, and representing the greatest challenge to our
day-to-day quality of life. Randy is skeptical about what we can
learn from this consultation, given all of the nurses, doctors,
parents, and product representatives we have already consulted with.
The appointment is even worse than he expects. We have been referred
to the surgery department, but the expertise in g-tubes is in a
different department here, interventional radiology. We must get a
separate referral for the consultation we need. And we should
probably expect a sizable bill for today's mistake.
Kate is off today, so after the appointment, we drive through the fog
of Muir Woods to Stinson Beach with the kids. Max builds sand castles
with a 10-year-old Max (who is also half-Japanese), while Kai
stares at the ocean and plays happily in the sand.
Maxim (his other half is French) expresses his surprise that we've
traveled all the way from Colorado. Eventually, I realize that he
thinks we've come all this way just to come to Stinson Beach. No, I
clarify, we'll be working in Berkeley for the year -- we didn't come
all this way just for a trip to the beach. We hope.
Wed Sep 23, 2009
We are appreciating one month, and one year.
One month of living in Berkeley is long enough for Max to start
telling us where to go. And how to get there. On our way home from
the marina last week, we
drove past our regular turn into the hills, so that we could pick up
dinner in town. Max protested, "No! Turn back there!" When
we biked to Codornices last
weekend, Max immediately tried to correct us when we passed the street
that takes us to his favorite park. And when we drove to dinner with
John and Andrea, Max instructed us to turn right instead of left, to
get to his favorite tunnel. (If only he had been paying attention on
our drive home from Menlo
One month is also long enough for Randy and me to look at Grandpa's
photo log of our move without wincing. Every day, I have mentally
thanked our colleague Jen, who
warned and reassured us that it might take this long to feel like the
move was worth it.
And one month is long enough for Max to ask -- after telling everyone
that we'll be here for one year -- just how long a year is.
It feels like the perfect amount of time to Randy and me. Long enough
for Berkeley to feel a bit like home (with Max directing us to his
favorite places), but short enough for us to jump to take advantage of
opportunities here, both scientific and personal. We enjoy a frenetic
dinner tonight with the kids and my former office-mate (from our
postdoc year in Boston) -- Fei
has just taken a faculty position here. And even if Randy and I
failed at our first attempt at
the bus-train-ferry tour of the area, we at least made the
attempt. I'm hoping we can bring some of this mindset home to
Boulder, to get around to enjoying the things we can do any time but
end up putting off.
I tell Max that a year is 12 months. Four seasons. One revolution of
the earth around sun. In terms he cares about: long enough that when
we return home, maybe we'll finally do that bus tour of Boulder that
we've been talking about for years.
Thu Sep 24, 2009
When a housesitter flooded the
basement of our first home in Boulder, jiji's reaction was,
"You're lucky it wasn't a fire."
I get a call this morning from Alison, the mom in the Australian
family renting our current (and we hope, forever) home in Boulder.
She says there has been an incident, and now there is smoke damage.
Then our connection goes out. I work through scenarios in my mind
while numbly repeating, "Hello?" "Hello?"
Our connection comes back long enough for Alison to explain that there
was a flue fire in our house last night. After burning one log in the
fireplace, she threw a second one in. It immediately burst into
enormous flames, which couldn't seem to escape through the flue,
sending smoke and soot billowing into the house.
I ask if anyone was hurt. When she hesitates, I reword my question
more positively: Is everyone okay? I sputter to fill the silence for
several seconds. Then the line goes dead.
Just a bad connection -- everyone is fine. Alison managed to maneuver
the explosive log into a bucket of water to douse it. We suspect it
was pitch pine filled with sap, meant to be used in small pieces as
Flue fires are apparently not uncommon, and the cleanup is
straightforward for companies who specialize in this sort of thing.
In contrast, the flood was a major hassle, requiring the removal of an
entire basement of drenched carpet, weeks of preventative steps
against mold, and disclosure and reliving of the details when we put
our house on the market.
In this case, I think we're actually lucky it was a fire.
Fri Sep 25, 2009
Randy and I catch glimpses of our lives before kids.
We bike into town to run errands toward day's end. Kate is watching
Max and Kai, so Randy rides without the bike trailer for the first
time in years. He thrills at the freedom, but quickly discovers that
even without 100 pounds of kids, cart, and gear to lug, the hills are
still surprisingly grueling.
Our bike ride follows the usual 1:3 rule -- 20 minutes down to town,
60 minutes to get back home. It's probably not a coincidence that I
can at last fit into my pre-pregnancy jeans. At least until we
replenish ourselves with a Nepalise dinner.
Sun Sep 27, 2009
A belly is worth a thousand words.
Randy thinks that Max is tuning in more to the fact that other kids
don't have all on the stuff on their bodies that he has. So we have
been talking more with him about his condition. We explain that some
of Max's friends have broviacs, and g-tubes, and stomas. Most kids
don't, but everyone is different in their own way.
Max doesn't seem particularly interested in these conversations.
We meet Scott and Bella, friends from our Pittsburgh days, at the
California Academy of Sciences in San Francisco this afternoon. Max
is fascinated by an albino alligator (though we're not sure he
appreciates that white is an unusual color), by waxy monkey tree frogs
(who move like monkeys swinging through trees, at least when they move
-- the 8 frogs we stare down could pass for plastic replicas), and by
thousands of exotic fish. Max declares that the stationary fish on
the bottom of the 25 foot deep aquarium are sad (they actually do look
sad). Then he runs off for more explorations with 4-year-old Lia and
8-year-old Derek. Lia and Derek fight over who gets to push Kai in
Our full afternoon includes a drive down Lombard Street ("the
crookedest street in the world"), and a brief stop at Coit Tower to
gaze out at the bay. Max narrates excitedly through all of these new
But his curiosity is probably most satisfied at dinner. After hours
of playing with Lia, he lifts up her shirt to stare at her belly.
They both seem satisfied after a few seconds, and go right back to
I save my spiel about the extraordinary variety of the world for
Mon Sep 28, 2009
A Berkeley colleague suggests over lunch that basing our teaching
assessments on student ratings is like having our parenting skills
assessed by our children. I'm not sure when Kai will forgive us for
the ordeal of his first haircut, this evening -- but I think it will
considerably reduce the cries of "She's so beautiful!" Another
colleague here divulged that she is finally cool in her kids' eyes,
thanks to an upcoming interview on The Colbert Report
latest book about babies). So I should know better, but I can't
help but query Max. Is Daddy a good Daddy? Yes. Is Mommy a
good Mommy? No. Luckily, I don't have much time to feel
dejected, or at least not alone, given Max's replies to our follow-up
questions. Is baby a good baby? No. Is Neko a good kitty?
No. Is Max a good boy? No answer.
Thu Oct 1, 2009
Suddenly, none of it matters: the health insurance standstill, our
house fire, delays in Max's lab results, or medical supplies arriving
in Boulder instead of Berkeley again yesterday.
We have found a replacement for Max's mic-key. With all of the
other products we have tried, we insert the button into the stomach,
then use a syringe to fill an internal balloon with water to hold the
button in place. The new product, the AMT mini-one
non-balloon button, has no balloon -- just a small tab that gets
stretched thin with a special device when the button is inserted, then
expands back to its original size to keep the button in place when the
insertion device is removed.
This button does not leak.
We had been trying not to get our hopes up ever since Randy inserted
the button on Tuesday. We have discovered great fits before, with the
Nutriport, only to have them
not last. But in this case, there is no balloon, so no risk of
Max's dressings stay dry all day long. No soaking tissues and clothes
and bed sheets to change out over and over again. No need for
constant bag changes. Outings suddenly feel easy, and our plans to
eventually send Max to preschool feel realistic. We just feel like
dancing -- Randy, me, Kate, probably Max, and maybe even Kai, who can
get impatient waiting through Max's cares.
Our joy makes it feel like nothing else matters. It probably helps
that Max's labs look fine.
One liver enzyme is up, the other is down, and his hematocrit is
stable. We have adjusted to delays in receiving lab results before --
from the phone call that would come within minutes from Dr. Puder in
Boston, to the email that would come within days from Denver. We can
adjust to a snailmail wait of over a week here.
It also helps that the fire
looks like it never happened. Our homeowners' insurance agent could
find no signs of it. He brought along a contractor who was hoping to
find a cleanup project, but the contractor instead ended up wanting to
offer Alison a job. She cleaned the soot from every surface -- floors
and walls and ceilings -- herself, guided by instructions she coaxed
out of restoration companies.
We are no longer desperate for the medical supplies that just arrived
in Boulder, since no leaking g-tube means a leisurely schedule of bag
Our joy around the AMT button also helps to override any second
guessing about why we didn't try this product sooner. We realized
yesterday that we first heard about it back in March, from a nurse
that Ellie's mom recommended.
It took a couple months to research this product (and others) and
figure out how to sample it. When the button arrived in May, we were
told that a hospital visit was required to insert it. Max's mic-key
was in a phase of fitting well, and we decided not to mess with a good
thing. By the time his mic-key started leaking horribly again months
later, we had forgotten about the AMT button. And when Randy found it
in our supplies on Tuesday, we had forgotten that it was supposed to
require a hospital visit to be inserted. (The insertion process is
more complicated than with the balloon buttons, but do-able.) In it
We would be happy to interrupt our dance of joy for any signs of
progress on the health
insurance front. But for now, we'll keep dancing.
Fri Oct 2, 2009
We have been falling through trap doors.
Last night, I suggested to Max that he could be Scooby Doo. He jumped right in,
and decided that I was Velma, and Kai was Fred. Scooby Doo and Velma
ran around trying to solve mysteries. Every few minutes, Scooby Doo
declared that he had fallen through a trap door, and Velma would fall
in after him. We called to Fred to help us, but he just crawled
like this might help kids develop cognitive control. Staying in character is
challenging but fun. Taking on these challenges as part of regular play might
advance children's thinking.
This morning, as soon as I walk into Max's room, he announces that he
is Scooby Doo. We talk about how Naoko and Mike, who are visiting for
the day, can be Daphne and Shaggy. Scooby Doo demands scooby snacks
while I do his cares. I pretend to pull some from my pocket, and toss
them into his mouth. Without thinking, I say, "Here you go, Max."
"NO," he insists, "I'm Scooby Doo!"
Maybe these role-playing games will help me get my pre-pregnancy brain
Sun Oct 4, 2009
Randy and I never considered the name Fred. But as of tonight, Kai
has been called that name at least as often as his real name.
We debated names for months. A friend emailed me the day after Kai
was born, before we had chosen a name. She reassured us that he would
end up with the perfect name, and we would look back and think, "How
could we have ever wondered?" I planned to write back to her once we
had happily settled into whatever name we chose.
Her message is still in my in-box.
I tend to call Kai "baby" -- the way we referred to him with Max from
early on. Randy typically calls Kai "koala." When Max saw a cloud
shaped like an animal in a book yesterday, he likened it to his little
brother's object of attachment: "It looks like koala bear's elephant."
Ed, a friend of mine from college, asks Max tonight what his little
brother's name is. Max informs him that it is "baby Kai bear."
And now we have Fred. This role-playing stuff has unleashed a monster
in Max -- or at least a dog. He has insisted for days that he is
Scooby, and he is just as determined that we call Kai "Fred" -- across
our day trip to Half Moon Bay yesterday, and during our explorations
of Lake Anza and the carousel in Tilden Park today.
Tonight, we finally discover a way to escape these roles. Max agrees
to be Big Bird. He then declares that Daddy is Snuffy (Big Bird's
best friend), and I am the Count (an easy assignment, given my
tendencies to count maniacally with botched attempts at a
Transylvanian accent). Big Bird declares that Kai is Oscar (the
We did actually consider that name. All these roles might just help
us to appreciate the name that Kai has got.
Mon Oct 5, 2009
I did not know that we start life with 450 bones, then some of them
fuse so that we have 206 bones as adults.
Yesterday, Max took Kai down from behind in a surprise wrestling move.
Before I could exclaim, I caught the huge flash of a smile on Kai's
face. Max's attempts at play once brought Kai to tears, but now he
loves tumbling around with his big brother. And we have loved
watching the boys becoming their own little people, with their own
This afternoon, we head to the Berkeley public library to pursue Max's
latest. He recently started asking Randy during tuck-in about body
parts, and has become fixated on bones. Randy picks out three books
about them, while Kai and I browse the display of baby books (two of
them are written in Japanese). Max runs up and down aisles, and fails
to convince an older girl to pull her nose out of her book to talk
with him instead.
Max needs a nap, so we hope he'll take one on the drive home. But he
insists on flipping through one of his books. He falls asleep with it
on his chest. When Randy gets him ready for tuck-in back at home, Max
says he wants to keep reading. Randy explains that we have already
read all the bone books. We have learned about how many bones we have
and more, and there's nothing left to read. I get Kai into his
pajamas upstairs, while singing "the foot bone connected to the ankle
bone..." Max calls accusatorily, "I hear another bone book up
Thu Oct 8, 2009
Today's TPN delivery arrives with a smiley face and a sad face
drawing. That's how we feel about it too.
Being in California is amazing. We still can't believe this
sabbatical was even remotely possible. In two weeks, Max will
transition to a California-based company for his TPN supplies, the
most specialized aspect of his care. Pam, our contact person at this
new company, has been fabulously proactive about ensuring a smooth
transition. Smiley face.
But the transition means leaving Susan, our TPN pharmacist in
Colorado. She has been the rock in Max's medical care since we first
brought him home from the hospital 3 years ago.
Our relationship seems simple enough. Every week, I email Susan the
list of TPN supplies that Max needs. Every week, she gets everything
to us. Occasionally, an issue comes up that requires follow-up emails
or phone calls, and we resolve it.
What this summary doesn't capture is how completely covered Max feels
to us under Susan's care. She makes sure he has what he needs,
period. We recognize how hard this can be -- through blizzards,
delays in prescription updates, and supplies on back-order. And we
recognize how rare it can be, since these sorts of interruptions can
lead to hours of phone calls for us with Max's other medical supply
companies. But Susan makes everything easy. In so doing, she has
made us feel like we can live our lives -- in Boulder, in Paris, in
Amsterdam, or on a road trip to our year away.
Max will be back under her care next August. We've never even met in
person. But Susan is our rock. Her drawings are exactly how we
Fri Oct 9, 2009
A trickle of blood runs out of Max's stomach, and forms a thin, bright
red line along the button going into his stomach. Max screams in
protest as Randy removes his AMT button, then his GI doctor inserts a
mic-key button. I try in vain to calm and soothe Max through the
When the doctor and nurse leave the room, and Max settles, I start
frenetically going over what has happened over the last 12 hours, what
might have caused it, what might happen next, and what we can do about
it. Randy looks at me, calmly, and notes, "You seem to be freaking
Randy may be calm because he has become desensitized, given what he
endured from 3:00 to 5:00 this morning. Max called out in pain, and
then thrashed violently as Randy tried to determine the cause. After
a long struggle, Randy eventually discovered that Max's g-tube site
was swollen and oozing pus. He guessed that the mushroom tab at the
end of the button going into Max's stomach had gotten lodged up into
the tract into Max's stomach. Through Max's screaming and thrashing,
Randy managed to attach the special insertion device, stretch the
mushroom tab, and reposition the balloon. He then covered everything
with an antibiotic ointment.
Early this morning, the site looked considerably better, and Max
seemed comfortable. But by afternoon, he was screaming in pain again.
This time, Randy's attempt to reposition the balloon did not seem to
hold. So at the doctor's office, we were advised to return to our
old, leaky mic-key, to allow Max's stomach to recover from the trauma
of the new button.
Our dance with that
gloriously leak-free button lasted 9 days.
So, yes, my mind is racing. What caused this button to get lodged
into the tract -- was it a sudden pull on Max's tubing? We attach
tape to the tube and put
pin through the tape and Max's clothing, so that any pulls should
yank his clothes rather than his body. But the tape can slip on the
tube. Was it gradual pressure built up over time? We were
using the same dressing system with this button that we used with the
old mic-key: one piece of mepilex transfer, 2 pieces of IV gauze.
Maybe this caused too tight of a fit with the new button. Can we go
back to this button again, after the site heals? It is terrifying
to imagine trying it again, but demoralizing to think that we have
lost our best chance at leak-free living. Can we keep this
infection under control and avoid admitting Max for a hospital
stay? We'll start antibiotics tonight and run them for one
We head home 3.5 hours after arriving. One hour of this time went to
an x-ray to check that Max's mic-key is positioned properly (yes),
while I picked up his antibiotics (half an hour to wait in line for
the original formulation, which came in a strawberry suspension, and
half an hour to coordinate an alternate form given
allergies -- we'll crush pills, mix them with water, and insert
them into the g-tube). A chunk of this 3.5 hours, thankfully, goes to
trying to catch Max. Once we're ready to drive home, he runs around
the hospital corridors and ramps, giggling, like nothing happened.
Sat Oct 10, 2009
Max's actions speak louder than my words.
One of Randy's college friends asks if I have any practical advice for
raising kids, based on the media coverage he saw about my student's
discovery, that kids hear and
remember what you tell them even if they don't seem to be paying any
I watch Max stubbornly refusing to get out of his stroller. We're at
the Oakland zoo with Sam and his family. We can't coax Max out, even
to check out the squirrel monkeys or to run around with 5-year-old
Logan and 2-year-old Maddy. Once Max decides on his own terms that
he's ready to walk around, he immediately tries to cut to the front of
the lines for the zoo rides. We have to physically pull him back.
He's happy on the fast and spinny rides with Logan, but rejects our
suggestion that he might enjoy sitting on a moving animal on the
carousel. He insists on sitting on a bench instead.
Well, even as Max rebels, it's great to see him so exuberant. His
g-tube site looks good, and he has remained fever-free, so we're
avoiding a hospital stay. His mic-key is not leaking, likely because
the tract into his stomach is still a bit swollen.
But Max's actions make it hard for me to speculate wildly in response
to Sam's question. If our research provides any insights into getting
kids to cooperate, I'm clearly withholding them from Max.
Sun Oct 11, 2009
I would have been thrilled just to keep Max out of the hospital this
We meet a Boulder colleague this morning. We don't see each other
often enough when we're home, but
now Mike is on
sabbatical in San Diego and we're on sabbatical in his hometown. He
introduces us to brunch and toy store hot spots in the 4th Street
district by the bay. Max shares trains with several other kids under
my minimal coaching, while Kai proudly walks up and down steps with
Randy's moderate hand-holding.
Then we head to Oakland, to Lake Merritt and Children's Fairyland
(which served as inspiration for Disneyland). These are beautiful and
fun destinations. More importantly, we get to spend Grandpa's lunch
break with him here! He arrived at the FEMA headquarters in Oakland
Friday, where he is working on the American Samoa tsunami response
efforts. Max and Kai make the most of this grab of Grandpa's
limited free time, exploring the theme park storybook sets and rides
On our way home, we stop at IKEA. We're caving. We have been trying
since moving here to get the boys to sleep in the same room, given our
tighter quarters and hopes of having them share a room when we return
to Boulder. At the start, most nights began with uncontrollable
giggling, followed by crying, then cycles of sleep punctuated by one
kid crying and setting the other kid off. After a week of that, the
boys settled into sleeping through the night -- through Max's pumps
and their beeps, and through his middle-of-the-night cares. If one of
them wakes up screaming now, the other one will sleep through it.
But naps are another story. They just won't settle into them in the
same room. We staggered them for a while -- Kai's nap first, then
Max's, then sometimes a second nap for Kai. Most of the afternoon
would go to napping, and Max's nap was often pushed toward evening.
So we've gone to parallel naps, with Max in his bed, and Kai's
portable crib moved to the adjacent guest room. But the portable crib
is just barely portable in this tight space. Today's IKEA trip means
that we're giving up on getting the boys to nap in the same room.
We get a big boy bed for Max. Randy sets it up in their shared
bedroom, and converts Max's old bed back to a crib for Kai. The
portable crib will stay in the guest room for Kai's naps. Max happily
points out the cat and dog in his new headboard, and Kai crawls around
the expanse of his full crib. Both boys seem thrilled with the new
Kate gets them tucked in as we head out for tapas with colleagues
Just staying out of the hospital would have been enough. Today, we
get far more.
Mon Oct 12, 2009
Every baby is a miracle.
Today, we learn that Max can welcome a new cousin, Sophia, to the
world -- the baby sister of
Maya and Mateo.
Their mom, Corrie, discovered a lump in her breast in March -- an
aggressive cancer that led to a double mastectomy a week later,
followed by chemotherapy. Days before discovering the lump, Corrie
learned that she was pregnant.
Sophia has emerged into the world healthy. Her family wants to do all
they can to help her to recover from chemotherapy exposure in utero
and support her developing immune system with the best resource
available -- human milk -- ideally through flu season. What I've
pumped for Sophia since March will be gone in a matter of days.
Buying milk through the Mother's Milk Bank costs up
to $140/day, to cover
pasteurizing and testing.
If you know of any women who would be interested in donating breast
milk for Sophia, they can check
out this milkshare web
site for more information or contact Corrie
Donations can also be made directly to the Mother's Milk Bank (make
sure to mention the donation is to benefit Corrie and Sophia
Beauvineau), by phone (303-869-1888 or Toll free: 877-458-5503)
or by sending a check by mail to:
Mother's Milk Bank
Rocky Mountain Hospital for Children
Presbyterian/St. Luke's Medical Center
1719 E. 19th Avenue
Denver, CO 80218
We can't wait for our miracles to get to hold Corrie's.
Tuesday Oct 13, 2009
Imagine if people needed a permit each time they went to the
If these permits were treated like Max's ostomy supplies, people would
receive the number of permits that was just barely workable -- like 5
per day. If you needed more permits -- due to sickness, change in
diet, whatever -- that would just mean that you would have fewer
permits to go to the bathroom on other days. And if the company
providing the permits ran out of stock, that would be your problem.
You just wouldn't get any permits during that period. When the supply
came back in, the company would just start providing the minimum
number again -- not any of the permits that were missed.
When all is going smoothly, Max can barely get by on the 20 ostomy
supplies we are sent per month (when they are in stock). This number
is a limit set for elderly patients. It does not work for many
children. With Max's g-tube leaks, or retracting stoma, or high
output, we can easily go through 3 bag changes per day.
But after I spend an hour this afternoon explaining the need for Max's
supplies with our health insurance company, the representative says
that she does not see how she can make a case for Max beyond the basic
20 supplies per month.
Maybe I should try the permit analogy on her.
Wednesday Oct 14, 2009
Randy and I don't mean to keep commenting on how cute Max is. But he
wants to wear his new Thomas the Tank Engine costume all day and
night. He adjusts the engineer's cap until it sits on his head just
so, and keeps asking when Halloween will be here. We can't help
Thursday Oct 15, 2009
As we pack for our next trip, I find a gold angel pin in the pocket of my
fleece jacket. I would love to track down the woman who gave it to
Max on the Boston bus.
She could see how happy Max is running around during the day. And she
could see how comfortable he is getting hooked up to his pumps every
night. His latest favorite role-playing theme is the movie
Cars. Max is Lightning McQueen, the speedy racer. He has assigned
Randy to be Mater (the rusty old tow truck who becomes Lightning's best
friend). I'm Mack (the huge truck that hauls Lightning to his races),
and Kai is "mean guy" (Lightning's unscrupulous competitor). Max is always adamant that we stick to
our characters, but he seems to take particular pleasure in insisting
on this role for Kai. ("Baby, do you want more food?" "No, he's mean guy."). As we prepare to hook
Max up tonight, he confirms, "Lightning McQueen needs to charge his
Friday Oct 16, 2009
How quickly we forget.
The owner of our Berkeley rental recently asked whether we might be
able to move out early, perhaps a few months before our planned
departure of August 2010. Our move from Boulder to Berkeley is now so
far behind us that my first reaction was to think how fun it would be
to uproot to a new part of Berkeley to explore for those months.
Our move here is also so far behind us that we're piling into the car
for another adventure. Max runs around this morning, exclaiming, "I'm
so excited!" Our noon start is a bit anticlimactic, kicked off with
driving in circles searching for a gas station. But the views up the
coast are beautiful.
The memories come flooding back when we try to settle in for the night
in Fort Bragg. Kai screams for a good half hour.
Luckily, the owner of our Berkeley rental seemed to be asking about us
moving out early in a hypothetical way. But whenever we have to move
next, I suppose we will have forgotten again by then anyway.
Saturday Oct 17, 2009
We drive through majestic forests on our way up the coast to Crescent
City. When we stop to walk in Redwood National Park, Randy and I are
amazed by how immediately revitalized we feel -- by the deep smell of
moist earth and redwood needles, the lightest falling of rain, the
softness of our steps on the forest floor, the muted sounds and
streams of light in this protected space. Even Max and Kai seem to
appreciate that we have arrived somewhere special, among these
2000-year-old redwoods. A perfectly lovely way for me to prepare to
Sunday Oct 18, 2009
We do actually have a destination. But we realize that we have time
to enjoy the journey a lot more, by just staying put in Crescent City
for one day. One less packing and loading and unloading and unpacking
of Max's 250 medical
So we enjoy a leisurely continental breakfast at our hotel, while Max
runs around with a gaggle of kids. We walk to see the local
lighthouse, but our path is blocked by rough ocean currents. Max
looks skeptical when we explain that we'll come back later and the
ocean will be gone. We head to the pier, where Max announces that he
won't cry this time -- a nice contrast with his last pier experience. When
we reach the end of the pier, he declares it to be a boat that he will
drive. He assigns me to navigate, and sends Randy to the back of the
boat. Randy asks where we are going. "Amsterdam!" Max replies.
After a drive with napping boys through Jedediah Smith Redwoods State
Park, we return to the lighthouse around 4:30. The tide has gone out
so we can now walk where the ocean was churning this morning. We
climb the spiral steps of the lighthouse (even steeper than in
Amsterdam!) for a 360 degree view from the top. On our way back
across the low-tide bridge of land, Kai tries to jump from my arms.
He is lunging for rocks. I set him down so he can select his
favorites -- each one small, smooth, rounded, and beautiful.
Meanwhile, Max picks the biggest rocks he can lift, and stacks them in
We're no closer to our destination. But it's worth it for this chance
to ride a pier to Amsterdam, and to explore the bottom of the
Monday Oct 19, 2009
11 years old suddenly seems very old.
2000-year-old redwoods had been helping me feel young in the approach
to my fortieth birthday, today.
But this evening, our 11-year-old car seems to be falling apart. We
can't open the trunk when we arrive at our hotel in Newport,
Oregon. Randy must remove the kids' carseats to unload our luggage
from inside the car. When he goes to finish the job after dinner, he
grabs the handle on the back seat that allows the seat to be rotated to
access our luggage. The handle breaks off. He ends up needing to
pull out each of Max's meds from the cooler to bring in.
Unless you count the Mazda that Randy's dad handed down to him in high
school, Randy and I have owned a total of two cars across our lives --
our 16-year-old Saturn that Kate drove to Berkeley, and this
11-year-old Audi. We bought it only after Randy endured a couple
years of biking through the Boulder winters while I commuted to
I'm not ready for a new car. Yesterday morning, the parents in the
hotel dining room were raving about vehicles with video-players built
in for the kids. I wonder if these videos are like time-outs and minivans -- things that sound
ridiculous to people until they become desperate for them. For now,
we are enjoying our conversations with Max about every bridge we go
over, and every tunnel we go through. We listen to his pretend phone
conversations with Toshio about sights we are seeing, including a
beachful of sea lions, hundreds of them at the base of a steep cliff
where we pulled over this afternoon. We listen to Kai babbling and
clapping and singing. The occasional crying and fighting over toys in
the back seat seems totally worth it.
Being so unexcited about the latest technology makes me feel
distinctly old. But in a glorious redwood sort of way.
Tuesday Oct 20, 2009
The Tillamook Cheese Factory seems like a bad idea.
This stop involves a building filled with potentially-anaphylactic
allergens, and samples for everyone but Max to enjoy.
But he is fascinated watching the huge blocks of cheese on conveyor
belts -- getting cut, wrapped, weighed, and boxed. The factory
workers periodically interrupt their tasks to turn and wave at Max and
Kai, watching from balconies one floor above, safely behind walls of
And Max doesn't seem to mind our stop for ice cream downstairs. Maybe
he is just so relieved to finally see interesting people. Every
morning since the start of the trip, he has politely inquired, "Who we
gonna see today?" And every time we say "just us," he has quietly
contemplated this anticlimactic response. This morning, when he asks,
"We gonna see Katie this day?," we can finally say yes. When she
meets us at Pacific City on the coast, along with Nana who has flown
out to join the reunion, Max runs across a sandy walkway to hug them.
And after ice cream in Tillamook, Max runs off with Aunt Katie to make
We caravan to Katie's home in Portland, where she prepares a delicious
squash risotto dinner. Max explains very matter-of-factly, "Katie, I
can't have cheese."
Good to know that doesn't stop him from enjoying a cheese factory.
Wednesday Oct 21, 2009
Max can't believe it when we tell him that Katie has no trains. Why
did we drive for days to get to her house then?
But she has stuffed animals. The pandas are Max's favorite -- he was
happy to sleep among them last night. And as a biology professor,
Katie has lots of information she could share at the zoo -- one option
for today's plan. Even better (after Max asks whether pandas have
bones), she has skeletons of
all kinds of animals in her lab.
By the time we make it out of the house though, we don't have time to
explore any of these exciting options. Katie and I get a birthday spa
treatment and then shop for her dinner party, while Nana, Randy, and
the kids stop at a park and check out the Portland riverfront.
Afterward, Max is happy to show Katie's dinner-party friends his room,
his bed, and his stuffed animals. And his train. Katie's living room
rug has a border pattern that includes two parallel lines. Max deems
them to be tracks, and he is the train going around on them.
Max couldn't believe Katie had no trains. Now, he can't believe how
much fun he can have at her house anyway.
Thursday Oct 22, 2009
Kai wakes from his nap warbling. We are on our way to Ashland, our
final stop before heading home. We can't make any sense of his song.
Max is a little more interpretable. He declares things like, "Daddy,
I want to have my sip of milk after I finish reading this book about a
boy and his tiger." (He talked Katie out of a couple volumes from
her "Calvin & Hobbes" collection as we packed up to leave Portland
this morning -- when he wasn't busy delivering "mail," stuffing
Katie's mailbox full of leaves, twigs, and cat toys, as well as actual
mail once the mailman arrived and handed Max the day's delivery.)
Friday Oct 23, 2009
I'd like to think this is a mistake we'll make only once. Assuming it
was our mistake.
Max vomits in the car after a lunch stop in Redding, California. He
seems like he may be getting overheated, sitting on the sunny side of
the car. I pull over at the next rest stop, and we all get out for
We switch drivers once we're ready to go -- with the kids screaming
their readiness. As we merge onto the freeway, Randy glances in his
side mirror and starts swearing. I ask, "What? What? What?" All he
can do is swear.
Only after he has pulled over and stopped the car does he explain: A
semi behind us is swerving to avoid our luggage, which is now strewn
across the on-ramp. He jumps out to retrieve it. Our broken trunk
has popped open. As Randy accelerated onto the freeway, our luggage
spilled out. As I fret over whether I can help Randy (and the guy who
has now stopped to help him), or how I can protect Max and Kai with
the freeway traffic roaring past, Max exclaims giddily, "The trunk
popped open!" And we giggle.
Randy jumps back in the car. All the luggage is reloaded. The only
fragile item that fell onto the road was my laptop. Max's pumps and
medical supplies stayed put.
We can't believe this trunk
door. First it stopped
opening. Now it seems to be opening at will. But as we
reconstruct what happened when we entered the freeway, that story
seems increasingly implausible. Randy fixed the trunk the morning
after it broke, and we have been using it successfully since. It
gradually dawns on us that after loading our screaming kids into the
car at the rest stop, we may have simply forgotten to close the trunk
door. Our luggage was piled too high for Randy to notice in the
We're relieved to arrive home in Berkeley just after nightfall -- back
with everything we left behind, and with everything we intended to
Saturday Oct 24, 2009
We receive Max's first TPN delivery from his California home health
care company this afternoon. Nothing should change from his
perspective, except for the company sending a nurse out to oversee
this first delivery. She queries us about Max's medical history. He
interjects throughout the hours of interview -- describing his
favorite bones (the fibia and
tibula), explaining that paper comes from trees so don't waste it, and
informing her that he can't eat cheese, Kai can eat bananas, and we
put ice packs in the fridge. His input seems to convey much more
about Max than our summary of his surgeries and infections.
Sunday Oct 25, 2009
Eating dinner by LED flashlights feels surprisingly romantic, even
with Kai putting pasta on his head, and Max running around in the
dark. Attempting sterile procedures without electricity is
considerably less romantic. I inject additives into Max's TPN by the
last light of day, when we discover that our power has gone out.
Randy primes the TPN tubing by flashlight, right before we turn to
dinner. Luckily, the power comes back a couple hours later, just in
time for hooking Max up.
Friday Oct 30, 2009
When I walk in on Max and Lia
playing doctor tonight, I sense that they don't want me there.
Maybe Max is generally tired of me trying to direct things, after my
failed attempt at a nostalgia
tour of Stanford this afternoon. We have been here for 3 days as
a family, giving talks (taking every opportunity to continue
shamelessly showing videos
and photos of our kids) and
catching up with friends and former mentors. This afternoon was my
first chance to wander campus. But with two kids, a stroller, and a
walker, and with each kid wanting whichever wheeled device the other
one had, we ended up focusing our hour on a small, unfamiliar (albeit
beautiful) patch of campus.
Or maybe Max is realizing that his parents cramp his social style. On
Wednesday, Randy, Kai, and I met up with one of my college housemates
while Max napped. Eric's 4-year-old daughter was crazy and bold
running and climbing around at their neighborhood park, while her
16-month-old brother followed behind. They were gentle with Kai, who
giggled exuberantly as Olivia handed him pieces of litter from around
the park. When Max finally woke and arrived with Kate at their house,
he bounded through the front door. But as soon as he and Olivia saw
one another, they became suddenly shy, and remained so for the
evening, despite (or maybe because of) our best attempts to warm them
up to each other.
Tonight, I think I leave quickly enough after asking Max and Lia a
couple questions about the various devices in Lia's medical kit. But
when I linger briefly behind the drawing table where they sit closely
together later, Max feels the need to be explicit. "Go away,
Randy and I should probably show off our kids in our talks as often as
we can, while we're still allowed.
Saturday Oct 31, 2009
Max finally gets to wear
his Thomas costume out. And
Kai wears his pumpkin suit
hand-me-down. We celebrate Halloween at Boo at the Zoo in Oakland
on our way home from Stanford, among all manner of superheroes,
princesses, and monkeys. Max focuses his attention
on Akira, who was visiting
Stanford separately and is riding back to spend the day and night with
us in Berkeley. Not that Akira has a costume. None of us adults
managed one this year. But Max discovers that Akira can be
sweet-talked into buying him tickets for
Sunday Nov 1, 2009
I like to give Randy a hard time for not distinguishing between when
he knows something and when he's just guessing, as if he can't bring
himself to say, "I don't know." So I am amused by a recent
development in conversations with Max. When he is asked a question
like, "Why did you throw all those papers on the floor?", he seems to
struggle to come up with something to say, then responds, "I don't
have an answer for that question."
Monday Nov 2, 2009
When Randy tries to draw Max's labs this afternoon, he can't get any
blood to draw back from the broviac. He can push saline in, but can't
draw anything back. We call Max's doctor, who indicates that we will
need to check Max inpatient first thing tomorrow for a tPA
treatment to try to break up any clots in the line. I feel
remarkably calm about this problem with Max's lifeline. I know from
the short gut network that the problem is not uncommon, and it may
resolve on its own, perhaps as the tip of the line moves away from the
wall of the blood vessel. Sure enough, at hookup tonight, Randy is
able to draw blood back from the broviac. We will try to collect the
blood for the labs tomorrow morning.
Tuesday Nov 3, 2009
Max is excited about flu shots. He talks about wanting them, and
doesn't cry when he gets them (like this afternoon, when he receives
an H1N1 shot from the last vial here -- the rest of us will have to
wait until the next supply comes in). He reassures an older girl
crying in the waiting room that she will be okay. Kai cries out only
briefly today with his second dose of the regular flu shot. And we
drop off Max's blood -- Randy had no problem drawing back from the
broviac this morning.
Wednesday Nov 4, 2009
Max has been someone else for much of the last month -- Scooby Doo, Big Bird, Lightning McQueen. Kai
continues to get relegated to lessor roles. When Max is Curious
George, he assigns Randy to Man in the Yellow Hat, me to Professor
Wiseman, and Kai to "pig that gets stuck in the snow," a helpless,
squealing character that appears in only one episode. When Max is WALL-E, the cleaning
robot, he assigns Kai to be trash. He actually assigns Randy to be
trash too, but I wonder if this is only so that he can marginalize Kai
further, as "other trash." (We're not reading too much into him
assigning me to be EVE, the love interest.)
This morning, as I do Max's cares, he starts talking about Logan. I
ask if he is going to be Logan today. "No," he explains, "Logan is
right here next to me." He elaborates about how he met Logan at the
zoo. Unlike the Logan that
he actually met at the zoo, imaginary Logan is only 3 years old, and
needs to hold Max's hand to walk down our stairs. No word yet on what
Logan thinks about other trash.
Thursday Nov 5, 2009
Max's liver enzymes look
great (back to the double digits
as opposed to the triple digits), matching our sense of how well
he is doing. We don't get details from the quick phone call report,
but we can bet that his hematocrit will be down.
Friday Nov 6, 2009
We get the final kink in medical supplies worked out here, with the
arrival this evening of Max's y-connectors. Just in time for
us to fly back to Colorado, which we are required to do in 10 days
(and possibly every 90 days thereafter) because we haven't been able
to work out the final kink in our health insurance coverage.
Saturday Nov 7, 2009
We open up a 5-layer puzzle recommended by Ryan's mom. It shows a clothed
boy on the top layer, then the skin layer, followed by layers of
muscles, organs, and skeleton. I point out the
intestine on the organ layer. It is green. Max responds that it
should actually be red.
What kid would know this? Only Max. And a few of his friends.
Sunday Nov 8, 2009
I can't believe what Max declares to be his favorite part of today.
It starts with the boys and me exploring Totland, a local park that
has been recommended by parents at every other park we've been to.
It lives up to the hype, with elaborate play structures that both boys
enjoy climbing around on, and a huge collection of communal toys left
by other families (a Berkeley tradition).
Max might be just as puzzled by my favorite part of the day -- him
whispering "Wowwwwww, wowwwww," as we drive around steep bends up to
Mount Tamalpais, with breathtaking views of the San Francisco Bay and
the California coast. I love hearing Max's awe, and his attempt to
contain it since Kai is sleeping next to him.
After Max and Randy hike to the top of Mount Tam (while I stay in the
car with sleeping Kai), we head to the Golden Gate Bridge for our
third attempt to show it to Max up close. He sleeps through it again.
We park and try to walk back over the bridge, but Max is not eager and
Kai is too eager. Max fights our attempts to get him in a jacket for
the gusty walk, then screams until Randy heads back to the parking lot
with him. I hold Kai's hands so he can walk the pedestrian path, but
he mainly tries to lunge -- toward the rush of traffic on our left, or
toward the long drop to the ocean on our right. So he is quickly back
in the parking lot too.
We drive to a sushi restaurant in San Francisco -- easily found thanks
But parking can't be found.
It's one of the biggest challenges we've experienced living in the Bay
Area. After driving many circles around the neighborhood, we give up.
We find a second sushi place on yelp, and get a nearby parking spot
after just one drive around the block. It's a good moment -- maybe
reminiscent of home? Certainly more so than any other events today.
Max has been talking about missing Boulder, Colorado. Perhaps that is
why, on the drive back to Berkeley after his dinner of rice and soy
sauce, Max announces that his favorite part of this day was finding a
Thursday Nov 12, 2009
I tell Max this morning that Kiki is getting married. I
explain that this is when two people really love each other, and
decide to spend the rest of their lives together. Kiki has found
someone like that. Max ponders this development, and asks,
cautiously: "Max or Kai? Which one?"
Saturday Nov 14, 2009
Max's utterances aren't always so interpretable.
Today, I ask him what his favorite park in Berkeley is. I'm wondering
if he'll pick Totland or the
"Boulder, Colorado?" he asks. "No," I clarify, "your favorite park in
Berkeley, California." He responds, "Playing with mean guy, Chick
Hicks." I know that he means playing with Kai, since this is Kai's
role under the pretend-play theme
of Cars. But I don't get how this relates to my question. I mull
over Max's response as I repeat the question to myself, "favorite park
in Berkeley." Then I realize how Max would say this question. He
still can't make the "k"
sound reliably, so he substitutes a "t" sound. His favorite parT
of living in Berkeley is playing with Kai.
This afternoon, we get a visit from Grandma Julia (up from LA) and her
daughter Katy, who lives in nearby Oakland. Max warms to Katy
immediately, tugging her hand so she can join him in waking up Daddy,
not quite understanding why she sends him off to do it by himself.
When it's time to say goodbye, Max says he wants a "san wech hud." We
repeat his utterance, trying to guess its meaning. Max gets so
exasperated by our lack of comprehension that he resorts to spelling:
"G - U - S, hud!" Randy realizes he means hug. A sandwich hug.
Figuring out what Max means is definitely worth the effort.
Sunday Nov 15, 2009
Maybe I shouldn't put much stock in Max's claim that playing with Kai
is his favorite part of Berkeley, given that finding a parking spot was his
favorite part of our beautiful day exploring the Bay Area.
But the boys do seem to be developing a nice bond. Kai wakes this
morning before Max, an unusual event. I rush in and bring him
downstairs before his crying wakes Max. He fusses and won't soothe to
any of the usual distractions. Max eventually wakes and yells,
panicking, "MOMMY!!! WHERE'S BABY KAI BEAR?" I bring Kai back up,
and return him to his crib to wake up gradually with Max. The boys
talk and burble away happily together.
That's a favorite part of my day. And spending the afternoon in
Coyote Hills Regional Park, with Max running around with Lia and Derek on the marshland
trails, is my favorite park of the day.
Monday Nov 16, 2009
Last Thursday, we received unofficial word (by phone call) that we
would not need to return to
Colorado to satisfy our health insurance company for otherwise
unnecessary air travel. We were on our way to meet a friend of mine from college and
his girlfriend, and celebrated our good news with them over a
mouthwatering dinner of bulgogi beef and pajeon at a Korean hole in
the wall. Ed is a cardiac doc and Allison is an anesthesiologist, and
they seemed to appreciate how many hurdles must have been cleared for
We received further unofficial word on Friday, in the form of a fax of
an internal email stating that the relevant person had decided we did
not need to return to Colorado. Randy reacted to the unofficial word
by canceling our plane tickets, breaking out the champagne (literally
-- the bottle had been sitting in our fridge since Ed gave it to us
the first time we reunited out here), and making reservations for
Yosemite this week. (Kate was set on returning to Colorado as
planned, so the idea was that our easy car trip would work well with
our lack of child care.)
I reacted to the unofficial word by fretting over the lack of official
word, and making follow-up phone calls to try to secure official word
and to work through worst-case scenarios with friends and family -- up
until this morning, when official word arrives.
I can finally relax, and fully appreciate all that Max's medical team
has done to make our stay here possible. I'm trying to get Randy to
agree to switch roles with me for our next big stressor.
Tuesday Nov 17, 2009
When Randy and I return from our date night, I ask how things went.
Kate says that she doesn't know if she can tell us -- we might get too
jealous. I wonder if Max has told her something like, "I love you
more than anyone else in the whole world."
It's even worse.
When Kai started crawling
just before turning 1, we felt better about the fact that Max started crawling just after
turning 1. The delayed timeline seemed more like a Munakata-O'Reilly
kid thing, rather than a
So I have also been relishing Kai not yet walking. He's only 14
months, after all. Max waited until 17 months. When we video-skyped
with my parents a couple weeks ago, I was shocked by baba's suggestion
that Kai would be walking any day now. I had just mentioned to
Christian's mom (who has been
racing after Christian's little brother since he started walking at 10
months) that Kai was only just starting to show signs of maybe someday
considering the possibility of walking. In the last few days, he has
been excitedly pushing himself up to stand without grabbing onto
anything, over and over again. Sometimes, he takes one tentative
mini-step before lowering himself to his confident crawl.
But tonight Kate tells us that while we were out, Kai suddenly walked
We're crushed to have missed it. We can only imagine the scene, with
Kai taking his first amazed, tottering steps through the upstairs
level of the house, completely naked, right after getting dried off
from his bath.
Consolation comes quickly though, in the form of us getting to watch
Kai take a couple more steps, exhausted, and now clothed. Through
tears, we recognize that this overwhelming sense of awe and joy and
love is just what we feel for Munakata-O'Reilly kid things.
Friday Nov 20, 2009
Quiet hours in Curry Village in Yosemite are from 10:00 pm to 6:00 am.
I explain this to the boys as we wait in the car, while Randy hauls
our stuff from the parking lot to the campground -- suitcases, duffel
bags, backpacks, cooler. We're not exactly roughing it. The
"signature tent" has a hard floor and a heater, and is partially
insulated. Max saw the tent with Randy on their first excursion, and
tells me how it has a space for Kai's crib, and a light with a pull
string. I try to come up with crazy questions, like does the tent
have electrical outlets? A mirror? Max giggles and says no. But the
answer is actually yes.
The boys do their part to follow the Curry Village guidelines. After
wrestling and giggling together in Kai's crib, they are pretty settled
by 10 pm -- Kai in his crib and Max on a bed he'll share with Randy.
It's a late tuck-in for them, due to reasons both expected (our usual
chaos to get out the door in Berkeley) and unexpected (an hour long
phone call to go over Max's medical status with someone from his
Colorado team this morning, plus driving through SNOWFALL and darkness
through the park). Max calls out at 6:15 am, and Kai at 6:45, then
they both settle again until after 9.
Randy and I are jealous, given how our quiet hours passed: first with
Randy searching for the bathroom facilities to clean out the formula
pump supplies from the day, then wandering around lost in the freezing
darkness through tightly-packed, identical canvas tents, and making
Max's new formula after finally finding our tent; and with me cleaning
out the just-used formula supplies, then taking my turn to get lost.
When I finally returned, Randy headed out to make our car bear-safe.
The park gives extensive warnings about not having a drop of food or
even chapstick or a gum wrapper inside a car or tent. Quite a task
for our car, given the overflow of Kai's messy backseat droppings.
bears apparently prefer breaking into minivans as their vehicles of
choice, for these kids' scraps.) For our decidedly not bear-proof
tent, we could unload our food -- but not Max's pumps -- directly into
the bear-proof storage unit outside. A ranger suggested at check-in
that lactating mothers are a good comparison group for Max's pumps,
and bears haven't given moms any trouble. So a few hours after the
boys fall asleep, our tent and car are emptied of anything resembling
food, except for a formula pump, a TPN pump, and a lactating mother.
I wake to do Max's cares at 2 and at 8, and to nurse Kai in
Not a restful night for Randy or me, but at least a quiet one for all
of us, and for our very close neighbors.
Saturday Nov 21, 2009
Kai is poetic and exuberant with his overgeneralizations. He points
to the stars in the Yosemite night sky, and calls them "moon." They
are very bright here. He decides that our headlamp is a moon
He loves chasing after Nene (Neko) at home. Last night, as we
shivered over an outdoor pizza dinner (the indoor facilities here are
booked for a meeting), Kai tottered after a raccoon, calling "Nene,
Nene." This morning, he does the same thing to a pesky squirrel
hanging around our campground. We need to hold him back from his
pursuits -- the animals here are bold. Kai doesn't see the coyote
that trots along just a couple yards behind us as we walk across the
parking lot, but he probably would have called it Nene and given it a
good chase too.
Sunday Nov 22, 2009
"All's well that ends well," Randy declares as we take our seats on a
shuttle from the Yosemite Village Food Court back to our campground
for the night. Max plays with a folding-block toy that forms images
of Yosemite, while Kai studies his plastic card showing Mammals of the
Sierra Nevada (or simply, "Nene"). It's a nice scene.
But at 4 am, I was thinking about how we keep saying that there are so
many things to do in California that we won't do any one thing more
than once. I was thinking that this might be for the best when it
comes to camping. The spectacular view of the Yosemite valley that we
enjoyed from Tunnel View yesterday afternoon hardly seemed worth it in
the wee hours, when Max started screaming and retching and fighting
with Randy about which side of the bed he wanted to sleep on (not the
safe side, against the wall and closer to his pumps).
And around 1:00 pm, I was thinking about the big topics couples are
supposed to discuss before getting married -- money, religion, kids,
etc. I hadn't realized the topic that families need to discuss before
camping -- stroller philosophy. Mine is to use strollers as needed,
like on the long paved pathways throughout Yosemite, particularly
after the kids decide they are tired of walking, crawling, and
sitting. But Randy turns out to be militantly opposed to any stroller
use. He hands down his prohibition against them as a violation of
camping purity, after we wait for him to finish checking his email and
go out for his morning coffee. He assures me that he will carry Kai
as needed, given my
still-finicky wrists. So we
take the park shuttle to the Mirror Lake trail. The long, paved
Mirror Lake trail. Randy does carry Kai initially, but then takes off
with Max. Luckily, Kai is mostly content through their absence --
walking, eating, calling "bye" to passersby. I learn that Max was
happy too, since when Randy finally returns with him and sees that Kai
is now fussy and I can no longer carry him, he announces that he had a
fantastic time, so did Max, and he bet Kai did too. (Conflict
management might be another one of those big discussion topics.)
Max's morning yelling probably woke a dozen tents, but Randy did
eventually calm him. And Randy and I eventually resolve our stroller
standoff. Randy lifts his prohibition in the interest of family
harmony (and just maybe, because it is ridiculous), and we enjoy a
beautiful sunset walk around the Lower Yosemite Falls. Randy and I
have been to Yosemite before, but still can't get over the sheer size
of these rock formations. The boys pop in and out of their strollers
to climb rocks, point out fallen trees, and check out deer, before we
head to the food court.
All is well that ends well. Of course, the trip isn't over.
Monday Nov 23, 2009
One thing that can be said about this trip: Randy didn't vomit on
Max was the first to get sick, on our drive down Friday. We figured we
should stop letting him read in the car. He was looking at a Japanese
book, saying "chi,"
and describing how the Japanese character looks like a "5", and has a
cross like a "t." That does sound like "chi," but I asked what
picture it was by to confirm. He said he didn't know the word. So I
asked for it in English. "Strawberry!" Yes, ichigo.
Kai vomited shortly after. He loves to look at books too, and often
happily flips through some in his crib while I do Max's cares in the
morning. But he seems unlikely to be getting carsick from reading.
Maybe the boys caught whatever Kate had that led her to go home sick
on Thursday? Whatever it was seemed to pass quickly.
This morning, I try to nurse Kai quietly so Randy can keep sleeping,
since he is giving a talk in Merced on our way back to Berkeley. But
I suddenly find that I need to wake him immediately, to bring me a
ziplock bag. Food poisoning? Flu? I feel better as soon as I use
the bag, and Kai continues uninterrupted. But after that, all I can
bring myself to do is sleep -- through Randy getting the kids ready,
keeping them entertained as he packs up our entire tent and storage
unit, and driving us all to Merced.
Luckily, the kids are easy in my charge at a park near the university.
Max announces what a big boy he is, as he climbs up the jungle gym
ladders and goes down the big, loopy slide, over and over. Kai walks
through the rubber playground pellets, up and down the curb to the
grass, and around the hillside. We've gone from summer to winter with
no fall -- from not walking to walking with no wobble. On our
Saturday walk by the Merced River in Yosemite Valley, I started
counting how many steps Kai was taking in a row, thinking my little
task would be done after a quick dozen. He took 109.
For the briefest window last week, he walked like a drunk cowboy,
knees out and wobbly. He thrilled at getting in and out of his
director's chair -- first with clumsy failed attempts (getting on his
hands and knees and trying to crawl backward into it), then kneeling
forward into it and turning awkwardly, then entering it sideways and
turning more smoothly. Each time, as soon as he was settled, he stood
from the chair to walk his drunken cowboy walk again.
I would relive this last week, our briefest of autumns, at any chance.
Vomits and all.
Tuesday Nov 24, 2009
Another thing that can be said about our trip: 0 bag changes. I
changed Max's bag Friday morning before we left, and Randy changed it
Monday night after we returned, just in case.
We can thank the AMT mini
non-balloon button, which Randy reinserted a few weeks ago. It
fits perfectly, again. To prevent the horror of it lodging into the
tract into Max's stomach again, we have replaced the tape on the tube
with a glued plastic tab (which we safety pin through to secure the
tube to Max's pajamas), we check that the button can spin freely every
morning and night, and we place only one piece of mepilex transfer
underneath the button with one piece of IV gauze on top.
Vomiting was temporary, while this button now seems like a good
long-term solution for leak-free living. So we'll take the 0 bag
changes for the 3 vomits.
Thursday Nov 26, 2009
We thought this Thanksgiving might be tough.
We've been spoiled with Uncle Dave's deep-fried turkey and
Thanksgiving gatherings with my sister's family since moving to
We don't know how to cook a turkey. And we're not sure we could bring
ourselves to do so right now. We see our neighborhood turkeys
regularly, and the thrill never fades. A few weeks ago, Max sat at
lunch with us while Kai napped -- a nice treat, since we had been
concerned about Max seeming upset about the rest of us eating meals when he was not
interested. Randy and I were eating turkey sandwiches. Max was
making a sandwich out of Fig Newmans and lettuce. Randy asked if he
would like to make his sandwich a turkey sandwich also. Max gave an
enthusiastic yes. As Randy went to the kitchen to get the deli meat,
Max looked at me and announced, "Make a nice sandwich for the turkeys
Aunt Katie provides the perfect resolution. She catches a last-minute
flight from Portland to join us for the next couple days. She arrives
at our house just in time to see a flock of 15 wild turkeys in our
yard, with two males displaying their majestic fanned tails to passing
females. Katie is vegetarian. Squash risotto is our main
course. Katie plays with the boys while we finish the cooking.
Friday Nov 27, 2009
There's nothing like sickness to make you appreciate health. And
nothing like a trip to the ER in the middle of the night to make you
appreciate all the times we're not making these trips.
Max and Kai and I all had colds for Thanksgiving. Max's seemed the
furthest along, at the coughing stage. Kai was a snotty mess. Mine
was just starting, with a sore throat and a bit of congestion. I was
actually relieved to catch it. I felt better kissing and cuddling the
kids through theirs than trying to avoid it. And it did make me all
the more thankful for health.
But Max got suddenly worse last night. He woke at 11:00 with a fever
of 101 (despite us giving him Tylenol at bedtime). He was vomiting
bile, complaining of pain, and showing labored breathing. The fever
alone requires a trip to ER. We thought a line infection was
unlikely, but weren't sure how dangerous the alternative (pneumonia?)
might be for Max. So Randy took him to the ER, while I stayed behind
with Kai, who looked sad and confused about Max being whisked from
their room, after reading with Katie while Randy packed a
They returned around 3:00 am. Max's blood had been drawn to start the
check for a line infection. His assessment for pneumonia was
negative. Discharge instructions were to keep watching for any
problems breathing, come back today for a regular pediatrician visit
(which confirms no pneumonia), and just wait this out, with Tylenol as
Max's breathing as he sleeps this morning sounds like a struggle, but
when he wakes and I run to his room, he stands in his doorway,
singing: Boyyys donnnn't cry -- his favorite song on Kate's ipod. His
fever is gone, his cough is weakening, and he is not vomiting, since
we are holding back on feeds until his system seems ready. Max goes
on to a rainy day of insisting on playing with trains with Katie
instead of taking a nap.
Sunday Nov 29, 2009
Other events just can't compete:
Katie's nostalgia tours of
Cal, a scenic sunset drive along our ridge into Oakland on Friday,
watching kitesurfers and windsurfers race across the bay with the
Golden Gate Bridge for a backdrop on Saturday, and Max jumping into
another family's game of aerobie in the Presidio, unaware that he
transformed it from catch to fetch. I ask him this morning what his
favorite part of Katie's visit was. Playing with trains.
Friday Dec 4, 2009
Max is growing bigger and stronger, but Nana is apparently the gold
standard. At Max's regular GI appointment Tuesday, his height and
weight were both into the 20+ percentile, after recent growth spurts
on both measures.
Nana arrived that same day for a week-long visit.
Max assigns her to the roles
of the biggest and strongest trains, like Gordon, and even to his
Kai does his part with the train theme this morning, uttering his
biggest word yet: waywoh. As in, I don't want to eat anything you're
offering, all I want is waywoh, waywoh, waywoh. As soon as I take
him out of his high chair, he heads for the bin of railroad tracks.
And this evening, he turns on a toy that announces a song: "I've been
working on the...!" Before it gets to the word, Kai jumps in with
Saturday Dec 5, 2009
Max's favorite part of Nana's visit is also likely to be trains. But
real ones this time. We finally make it to
the BART station this
afternoon, by driving to our campus parking lot and walking from
there. Max jumps around the platform in anticipation. When the train
roars in, he exclaims,
"Shinkansen speed!" Kai naps
on the ride to San Francisco, but Max opts to sit upright staring out
the window, whether we're above ground or under. Kai clues in on our
trolley back from Pier 39 (where we see a dozen sea lions instead of
hundreds, the boys ride the carousel, and we enjoy dinner with the sun
setting over Alcatraz). The trolley isn't quite a train, but the
tracks are enough to elicit Kai's "Waywoh!"
Sunday Dec 6, 2009
Riding shotgun is a big responsibility in our family. Kai expresses
his gratitude for the first time today.
We drive down Grizzly Peak Boulevard for bay views with Nana, after a
delicious (if chilly) authentic brunch outside a
Thai Buddhist temple. Kai calls out from his carseat: "More,
more." His words are coming in so fast that we're having trouble
keeping track -- today's additions include bread, road (not much of a
stretch from waywoh), pumpkin (Kai eats chunk after chunk in the Thai
curry), and most adorably, Ma (Max minus the x). But "more" was
an early favorite, usually
for food. He was downright giddy when a stranger noticed (and pointed
out to me) that Kai was signing for more at the BART station
yesterday. Then it was for Fig Newmans and cheese. Now it is for
cereal. Whoever is riding shotgun must hand it back to Kai, two
pieces at a time (more than that just gets spilled), to satisfy his
calls of "more, more" every few seconds. In response to Nana's
offerings, Kai for the first time says, "Doot doon" -- "thank you" as
taught by Max.
I'm squished in on the other side of Max in the backseat, which is
cramped even without two carseats. But being this close affords the
luxury of taking in the curl of Max's long eyelashes, the waves in his
mop of hair (all the boys are due for haircuts), and the fading pink
splotch on his cheek from
reaction to pineapple this morning. (He adamantly refused his
benadryl, and just waited for the reaction to pass.) I can take all
of this in because Max is sleeping. He is getting too old to tolerate
my doting gaze otherwise. ("I'm free-and-a-half, Mom!"). I sit
mesmerized by the rise and fall of his chest until he wakes, just
before we stop to walk and play at Point Pinole Park on San Pablo Bay.
Monday Dec 7, 2009
Nana asks: With everything that has happened with Max over the years,
do I feel better equipped to deal with stressors like his emergency room visit last week?
I can answer without a moment's hesitation. Then I demonstrate my
answer this evening.
I am connecting tonight's TPN bag to its tubing. This is usually
Randy's job, but I am testing that my wrists can handle it, in
preparation for a consulting day trip Randy will take to Malibu next
week. (We discovered how manageable these quick trips can be, with
Kate's help, when Randy flew to San Diego to give a talk a month
When I spike the bag to attach it to its tubing, drops of TPN leak
out. We've never seen this happen before. The TPN needs to stay
sterile to prevent an infection in Max's blood, so the question is
whether a moment of TPN leaking out means a risk of any non-sterile
elements getting in.
I put in a call to our home health care company. During the 40
minutes that we wait for the call back, I insist that we need to start
all over -- inserting new additives into a fresh bag of TPN, then
spiking it. I snap at Randy over dinner when he disagrees with me. I
become incensed when he suggests that when Nana flies back to Colorado
tomorrow, she can risk trying to transport my breast milk for Cousin Sophia as a carry-on
(even though the fluids might get confiscated) instead of checking her
When the home health care company calls back, a nurse and a pharmacist
reassure us that we can still use the TPN. This bag may have had a
bit of extra fluid in it, which could have increased the pressure in
the bag enough to cause momentary leaking when it was punctured. The
pressure should have pushed outward from the bag (hence the drips)
without letting any non-sterile elements in. (The spike I use to
puncture the bag and the port I insert the spike into are both
sterile.) I reluctantly agree to follow their recommendation.
I said "no" in response to Nana's question because I feel no better
equipped for dealing with Max's stressors -- either their immediate
emotional impact or the rumination beyond.
I will probably fret over this decision until we can confirm that Max
has not gotten an infection. I have a nagging feeling that many
fellow TPN-parents would have started all over.
Tuesday Dec 8, 2009
Max comes running up to the front door when I get home from work -- an
especially warm welcome, and all the more appreciated after
yesterday's TPN incident. But he turns out to be eyeing my gift bag.
He asks excitedly, "What's in there?" I explain that I just got
guilted out of the puppy dog toy I tried to bring home for him.
And Daddy would be proud.
The puppy dog -- a gift in today's white
elephant gift exchange among the lab group I'm visiting -- wags
its ears to a squeeze of its paw. The grad student who unwrapped it
was quite openly pleased. I knew the kids would love it though, so
when my turn came, I took the puppy from Kirstie.
I was sure someone would then take it from me, and someone else would
then take it from that person. But the gift exchange ended without
any further takes. When I expressed my surprise, the lab members
explained that no one in their group actually takes presents from
people who clearly like what they have.
Randy is happy for the white-elephant bully company. At a party with
new colleagues in my first faculty job, a withdrawn little girl
suddenly became animated after unwrapping a gift of an electronic
parrot, which repeated back whatever the girl said. This heartwarming
scene ended when Randy's turn came, and he took the parrot from
I explain all of this to Max -- and tell him that I ended up feeling
too guilty to take the puppy, since Kirstie just had to have it.
Max gives his comically mournful, "Ohhhhh." Nanny Kate asks
incredulously, "What kind of person would do that? It was an
I strategically tell Kirstie about Kate's reaction. Even without
going into how brave Max is with his second H1N1 shot this afternoon, and
how the puppy would have been the perfect thing for him afterward, I
think we just might see that toy again.
Wednesday Dec 9, 2009
Randy watched snow falling in the wee hours Monday morning --
something that apparently happens here every 10 years or so. Nothing
stuck in our neighborhood (though there was a dusting in nearby
hills), so no snow play for the kids or visions of a white Christmas.
And this is nothing compared to the single-digit highs that Nana
returned to in Boulder yesterday, and the feet of snow in her
southwest Colorado home town. Still, we feel a little less sheepish
about shivering in the California cold.
Friday Dec 11, 2009
Some of my favorite words from Kai's recent naming explosion:
fwah: his call to play with a container of floss, which reminds
me of how my sisters and I fought over who got to play with our dad's
empty film canisters.
gee-doo: He says it gleefully, clearly proud to be able to
discuss the tube that goes into Max's stomach.
lama: his call to ask for said Christmas ornament given by
Nana. All the mammals of the Sierra Nevada still go by Nene though.
Saturday Dec 12, 2009
Max has his way of carving up the world. He helps me write words on
his magnetic drawing pad this morning. The first set:
MAX. DAD. TOY. CAR. A few of his favorite things.
We erase those words to draw two more sets. The third set: LIA. DEREK. Our plan is to meet
them at the Exploratorium today, but Kai has been vomiting since
midnight -- possibly food poisoning from one of the dozen dishes he
tasted at a department holiday party last night? Or from the
Ethiopian leftovers he had afterward, from our dinner with my faculty
host and her husband a couple nights before? We end up spending the
day at home, bracing for the next vomit (but no more come after noon)
and trying to hydrate Kai with Pedialyte.
In between the things he loves and the friends he wants to play with,
Max requests that we write these words: POOP. PEE. KAI.
Sunday Dec 13, 2009
As I do Max's cares this morning, he asks what Kai is doing. Usually
he is talking or giggling in his crib behind me. But today he is
quiet, even as Max makes bub bub bub sounds by twanging his
lower lip. Kai normally responds in kind.
I look over my shoulder at Kai. He is lying in his crib, staring into
space. He has been doing that a lot since getting sick.
When I explain this to Max, he responds, "I want to do it too!" It
seems like a strange request, but each brother is typically most
interested in whatever the other one is playing with or doing.
Then Max starts talking about blasting off in his rocket ship. I
assume he is launching into our pretend play roles from Toy
Story ("To infinity and beyond!"). He usually assigns himself to be
Woody, Randy or me to Buzz, and Kai to (who else?) Stinky Pete. But
then I realize: Max is blasting off so he can stare into space.
Monday Dec 14, 2009
Randy and I recently marveled over old photos of Kai at how he used to
just lie there. We'd set him down, and there he'd stay.
He's doing it again.
He had a brief window yesterday where he seemed eager to get out and
about, and he seemed to be done vomiting. So we popped out with the
kids to the Lawrence Hall of Science, right in our neighborhood. Kai
stuck close to me, but seemed happy enough looking at exhibits from
his stroller, and getting out to stack blocks.
Max had the time of his life, running around with Logan -- once he identified him.
He spent the first several minutes of their reunion asking, "Where's
Logan?" The only explanation we could come up with was Logan's
father's, that somehow Max had built Logan up in his mind as so much
larger than life that he couldn't reconcile that image with the kid in
front of him. But he eventually accepted that this was in fact Logan,
and engaged him in over-sized cushion fights and joined him in a
simulated flight over Mars. Over dinner back at our house, Max
gobbled down pasta. When Logan left the table to play, Max trailed
after him, asking him to come back to the table to keep eating with him. Amazing.
But then Kai started vomiting again last night, and is lethargic again
today. Set him down, and he lies down. Or, he just whimpers to be
held. He's like this before taking a morning nap (which he hasn't
needed in months), and after the nap.
His pediatrician reassures me by phone that we are doing what we need
to do: trying to keep Kai hydrated, giving only small amounts of food,
checking for wet diapers (yes) and a fever (none).
He does manage one giggle with Max after his first nap. And after his
second nap, he giggles with Max some more, and walks a little.
Hopefully we'll soon be back to not believing that Kai could have ever
Tuesday Dec 15, 2009
Max has started to seem jealous about all the attention Kai is getting
while sick. He addresses that problem late this morning, with his own
projectile vomit. When I ask Kate how much volume it was, she
struggles to come up with terms to convey the enormity of it.
He has several smaller spit-ups later in the day. We switch him from
drinking formula to rehydration
solution, and hook him up to extra IV fluids tonight before
connecting him to his TPN. We confirm again and again that he has no
fever, so that we can continue monitoring him at home.
When we're not dealing with illness, we're dealing with cars. We
thought our Audi would be the car that forced a new-car purchase -- a
bungee cord is currently wrapped around the back to hold the trunk door down. But it was the
Saturn engine that seized
yesterday as Kate drove home down our hill. After getting us around
the hills of Pittsburgh, sitting in storage during our year in Boston,
and moving us to Colorado then Kate to California, the Saturn came to
rest on a quiet street overlooking the San Francisco Bay.
Now we're scrambling to figure out what to buy, hopefully within the
week that we've booked a rental car for Kate. And we're hoping the
boys will be well enough to join us on test drives.
Wednesday Dec 16, 2009
Another thing I'm reliving with Kai instead
of reminiscing about: round-the-clock nursing. 1:30 am, 5 am, 9
am, noon, 4 pm, 6 pm, 8:30 pm. Breast milk is all he will reliably
take, and keep down. He is refusing the different flavors of
pedialyte we're offering. He got excited about eating Cheerios
yesterday evening, but they came back up a few hours later.
I fantasize about a sunnier day, maybe heading out to the ocean. And
Randy does it -- flying to Burbank, then winding his way through
Malibu canyon on his way to his all-day consulting gig.
Thursday Dec 17, 2009
I can't believe the nurse's questions this afternoon.
Kai seemed to be back on track this morning -- no vomit since Tuesday,
and a healthy-looking breast milk poop this morning. But after his
nap, he had an explosively watery diaper followed by another
projectile vomit. He is still lethargic. Today is day 7.
I call for another phone consult. I imagine the nurse's alarm at
hearing that we've let things go this long, that I must have
misunderstood what they told me Monday, that we must bring Kai in
Instead, after confirming that the symptoms I described Monday still
apply, she asks what seem like the most minimal questions. Is Kai
unconscious? No. Is he failing to wake up on his own? No.
Is his breathing altered? No. But what about the fact that
he's not moving? What? He can't move his arms and legs? No,
he can move them, he's just not going anywhere. He can move
them, then okay.
The nurse seems to think the problem is more mine than Kai's: You
called us 3 days ago, and we told you his symptoms were okay. You're
calling again, and we're telling you that his symptoms are okay. If
you're not okay with that, you can schedule an appointment for
tomorrow. You should feel free to cancel this appointment if you can
determine that he is doing okay.
I weigh Kai tonight. I know he has probably dropped from his 22
pounds over this week of sickness, but am still shocked to see that
our combined weight, with me holding Kai in my arms, is 5 pounds lower
than usual. I then weigh myself separately, and am further shocked to
see that 4 of these lost pounds are mine.
I did end up making the appointment for tomorrow. But maybe the nurse
Friday Dec 18, 2009
The boys don't join for our test drive.
But Max does come to see the drama of
our Saturn getting towed. He
narrates excitedly from Randy's arms as the car gets pulled, steeply
angled, onto the enormous truck bed. Then he runs around a nearby
driveway squealing with excitement. He has weathered this illness
remarkably well, with just the one indescribably-large vomit and now a
cough, but no apparent loss of energy or mood -- perhaps because we
aggressively replenished his fluids by IV Tuesday and Wednesday, and
have replaced his regular enteral formula with rehydration solution
through today, given how long Kai has been vomiting in response to any
Kai is doing well enough that we do in fact cancel his doctor's
appointment, and leave him (and Max) in Kate's care while we go for
our test drive. He still isn't moving himself anywhere, but he seems
happier and more interested in food. By evening, he has a
breakthrough that leaves us feeling like
the first time we saw him
walk. He gets in and out of
his director's chair again,
smiling. Then he climbs onto the trampoline, pulls himself to stand,
and insists that we count his bounces. (He has often watched Max
demanding that someone count as he jumps up to 100.) Upstairs, he
brings me a truck book, takes it back to hide it in a cabinet, and
reveals it with an excited giggle -- then repeats this process a dozen
times. He suddenly seems like Kai again.
We like the Toyota RAV4, but could do without the haggling (which
makes us long for our no-haggle Saturn, particularly when we learn
that what killed it was a simple lack of oil, despite a check one
month ago and no warning light). Hopefully the boys will get to
experience a good outcome to our search without the grueling
Saturday Dec 19, 2009
For just a moment, I forget where I am.
Part of it is jetlag. Kai was giving me 4-hour maximum chunks of
sleep, waking me twice during the night to nurse. Max has started to
join in to interrupt those precious chunks, waking me twice two nights
ago for hugs and reassurance, then twice last night with urgent
requests to adjust his blanket. I feel like I have stumbled off a
plane to Europe.
The setting this afternoon is also fantastically disorienting. We row
a boat around a small island, under bridges and alongside ducks. It
reminds Randy of Amsterdam, where we
last commuted by boat. It
reminds me of the Bois de Boulogne on the outskirts of Paris, where we
last rowed a boat. As we make these comparisons, it takes me a moment
to remember where we actually are: circling Strawberry Hill (and then
hiking to the top), on Stow Lake in Golden Gate Park.
We appreciate the outing all the more with the boys feeling good. Kai
keeps a measurable amount of food down for the first time today. Max
runs through the tulip garden around the Dutch Windmill ("winmo" to
Kai), and we struggle to catch up as he runs along the ocean view side
of the park. Luckily, Max was as remarkably still sitting at the bow
of the boat as he is now remarkably in motion.
Sunday Dec 20, 2009
You can't always get what you want.
Kai wants to play with Max's train set. But what he gets is a decoy.
Max has been quickly throwing together minimal alternative train
tracks to try to distract Kai from playing with the main set. The
decoys usually work for a few seconds. They are getting increasingly
You also can't always want what you get.
Max and I add a splitter to the main train set this morning, so that
he and Kai can push their trains in different directions if they
collide. Max suggests that Kai join him to test it out. But the
decoy has finally worked. Kai can't be convinced to leave his own
But you just might find, you want what you need.
We take the family to look at a lightly
used RAV4 this afternoon. It
is the single RAV4 in this area with a fold-down third row seat, which
would allow us to fit Max's meds for family trips, fit additional
passengers otherwise, and still stand a chance of fitting in Bay Area
parking spots and our garage back in Boulder. Unfortunately, it also
has a bigger engine and higher price than we hoped for, with little
chance for negotiation. But we need a car, and don't want to throw
any more money at a rental. So this option looks good to us.
Monday Dec 21, 2009
Randy and I are having trouble flossing -- or more precisely, now that
Kai is back on the move,
trouble finding where all
our fwah containers have
Tuesday Dec 22, 2009
100 is the new 5.
These days, whenever we suggest that Max start taking on more
responsibility (like helping with cleaning, or getting dressed), he
responds: I'll do that once I'm 100.
On the other hand, 40 is the
Randy and I fill out financing forms at the Toyota Fairfield
dealership this afternoon. He can't remember his social security
number. I joke with the salesman (who turns out to be 1 day younger
than me) that this is where we'll be in a few years, given Randy's
Randy's first guess is wrong, as is his second. So the credit check
falls to me. I had an identity theft incident years ago, so I get
called back to take a test to confirm my identity. I fail it. I'm
not sure which 2 out of 4 questions I answered wrong. But it brings a
quick end to my teasing about cognitive decline. We drive
the RAV4 home after Randy's
third guess turns out to be right.
Wednesday Dec 23, 2009
The rest of us have caught up to Max. He was the first one eligible
for his H1N1 shots, as a
medically complex child. Kai was the next one to get his first shot,
and is now eligible for his second. Randy and I take him for it this
afternoon, and receive our recently-available shots too.
We're not caught up to the season. We've lifted our heads for the
first time since sickness and
cars, and suddenly it's Christmas. The lack of snow makes it seem
all the more unreal. The arrival of family should help.
Friday Dec 25, 2009
It's beginning to feel a lot like Christmas. Well, a little like
Christmas as we know it, and a lot like a Bay Area Christmas.
This means taking advantage of the delicious dim sum restaurants here,
and heading out to meet baba and jiji (who fly in this morning) and
Auntie Naoko and Uncle Mike (who drove up yesterday and pick up baba
and jiji from the airport). And it means seeing all the other Bay
Area residents who have the same idea. It is 2:30 pm when we
ultimately give up on Koi Palace in Daly City. The group that has
finally made its way to the top of the waiting list arrived 4 hours
ago. (Our name got added over 3 hours ago, but we are still far down
Luckily, we spend the wait time productively: Kai naps as we tour the
neighborhood, then wakes to play in a park overlooking the coast,
where Max shows off his fearlessness on the jungle gym and winding
slide. We double back to another dim sum restaurant passed during our
tour, and find a much shorter wait. Kai downs barbecue pork buns
while Max spins the Lazy Susan holding our many delicious dishes.
Back at home after driving the scenic route over the Golden Gate
Bridge, we can't get the kids interested in opening their gifts. Max
is too busy playing with his trains. Kai is just walking around.
(When I brought him down this morning to see their presents, he
actually turned his back to them so he could walk sideways to squeeze
between the table of presents and the hearth, to look out the window
onto the bay instead.)
We coax them into opening a couple things before dinner. They show a
little more interest after dinner, staying up late to open the rest.
But Max seems most excited about having family members to play trains
and wrestle with. When I reminded him yesterday about Naoko and
Mike's arrival, he promptly announced that he would wrestle with Mike,
then seemed to catch himself and asked, "How big is Mike?" Kai seems
most excited about offering everyone hugs. Now this feels like
Monday Dec 28, 2009
The boys apparently just needed a little priming with the whole
Christmas gift concept.
Max reviews the plan while I do his cares this morning. I remind him
that we are heading to Sonoma, where we will meet Cousin Toshio's
family and baba, jiji, Naoko, and Mike. Max wants details about
exactly where people will be sleeping (in a vrbo rental house -- we'll
figure out bedrooms when we get there), how long we will be staying (3
nights), and where everyone will go afterward. When I explain that
Toshio's family will return to Colorado, he asks, "Our Colorado?"
After the hour's drive up, we carry in our luggage. Max helps by
bringing in a present for himself from Naoko and Mike. I notice that
the wrapping paper has ripped slightly. The opening seems to grow
across the afternoon. Openings on other presents appear. Max
repeatedly asks why we need to wait for the gift-givers to arrive.
Kai pulls out presents, squats near them, then rotates himself around
to sit on them. He looks like he is staking his claims, like someone
The gifts are worth getting excited about -- thoughtful books and
games and toys.
But I'm glad to see that the boys forget about opening them (at least
for moments) once everyone arrives. Max and Toshio leap through the
air, jumping from a couch to an ottoman over and over again. We
explore the yard, and watch Randy climb up into a rickety tree house.
Big pillow fights ensue in the master bedroom. Even after the gifts
are opened, they get set aside for our California version of a
snowball fight -- with balls of discarded wrapping paper.
Tuesday Dec 29, 2009
Going wine tasting with the kids seems right up there with touring a
cheese factory with an anaphylactic milk allergy in the family.
We get three tries to get it right (or wrong).
Our first stop is Gundlach Bundschu, where we enjoy a picnic of deli
sandwiches while Kai sleeps in the car. Uncle Mike and I then play
soccer with Max and Toshio while everyone else goes in to taste. We
eventually switch to racing up a hill, with Mike calling out our
staggered start times: Max, Toshio, me. After each race, Toshio
announces the updated counts for his golds, Max's silvers, and my
bronzes. Randy returns with an affordable bottle of tempranillo,
everyone's favorite taste.
Our second stop is the opulent Opus One winery. I wait in the car
with sleeping Max. Kai is apparently happy on Randy's shoulders in
the elegant tasting room. Our group splurges on two glasses of wine,
at about twice the cost of the bottle from the first winery. No $200
bottle is brought back for me to taste.
Our third stop is Silver Oak. We decide to brave it with both kids.
Kai tries to pull me up some stairs, ignoring the PRIVATE sign. A
woman comes by quickly to entertain Max and Kai with breadsticks. We
clean them up off the floor.
I'd say this outing was almost as successful as
the cheese factory tour. But
I think we'll look for playgrounds tomorrow.
Wednesday Dec 30, 2009
We do find playgrounds (which we enjoy despite
as well as a cheese factory (where we indulge in cheese and fudge
samples and gelato), in the beautiful Sonoma town square.
Thursday Dec 31, 2009
When we arrived at this house in the Sonoma Hills, it was cold. Randy
turned on the heat, and we shivered as we wandered the unfamiliar
We are leaving a different house.
The dining room is where we feasted each night on creations from Naoko
and Mike and baba, while the kids could run around as much as they
liked. The family room and utility room beyond, where we could play
hide-and-seek endlessly, despite the limited number of hiding places
(crouching behind a chair, standing very still in a dark corner, or --
for Max and Toshio only -- lying under the coffee table). The living
room, where our throats hurt from squealing uncontrollably during
freeze tag. After shrieking as baba came toward him, Max would beg
her to stop being "it" so he could get past. Whenever she tagged him,
he would dutifully freeze, yelling urgently for help, "I'm frozen!
I'm frozen!" Down the hall, the master bedroom, where Max and Toshio
pleaded for Randy and Mike to come wrestle, and for someone else to
remove Kai from the premises so he wouldn't cramp their style.
Further down the hall, near the other bedrooms, the hall closet where
Max and Toshio huddled to hide from Kai after hide-and-seek spilled
out into the whole house.
The house we are leaving is warm.
Friday Jan 1, 2010
Not everyone can sleep through the New Year's clatter. Randy and I
watch fireworks over San Francisco from our bedroom window -- tiny
bursts of light barely visible through the thick redwoods. We hear
the distant booms, then the chimes of the Berkeley campanile. It's
too much for the neighborhood turkeys, who gobble in alarm all around
us. The boys sleep through the cacophonous transition to the new
Saturday Jan 2, 2010
"This is not a box!"
Max pauses several times in the middle of playing with Kai this
morning to announce this fact. They have taken the long box that
contained their activity table from IKEA (a New Year's Day purchase)
and propped it up against the trampoline. They are sliding down it
over and over again. Max's announcement refers to
present from Naoko and Mike -- a book where the main character
explains repeatedly that the box he is playing with
is not a box, but a race car,
or a mountain, or a rocket ship.
Our theme for the afternoon could be, "This is not a rock!"
We head to Mount Diablo an hour east of us, to climb among the
sandstone formations. They come in countless forms. We crawl through
high caves, recline on ledges, and enjoy a picnic snack on a flat
expanse. Not a rock, but a fort, or a bed, or a clearing. Or another
slide. The boys scramble up the rough sides of these formations to
slide down their well-worn faces, thrilling at how quickly they
descend while Randy and I get stuck.
Sunday Jan 3, 2010
Max isn't the only one getting too old for his bike. And wondering
about false praise.
Derek and Lia's mom was the
one who pointed out that Max had outgrown his tricycle -- a fact that
then became comically obvious to us. He has been talking a lot about
moving on to a bike with a chain, and was excited to unwrap one
Christmas night. Excited, but not surprised. As he explained to
Auntie Naoko, "Actually, Daddy and I bought it at Target."
Max rode his bike at Codornices
Park the next day, building up some nice momentum when Uncle Mike
made himself a target to be chased. But when I later complimented him
on his riding, he replied, "No, not." And when I asked him to tell
Naoko how he felt about his riding, he said, "Not good."
We drive to the Berkeley Marina today to enjoy the warm (60F) sunny
day, biking along the bay with the kids in the bike trailer. When we
come to a street, I brake and go to put my foot down, but discover
that it is still clipped in to my pedal. I have lost my forward
momentum, and fall over sideways to the ground.
After confirming that I am okay, Randy starts raving about what a good
job I did falling, apparently protecting my hands by bringing them
together and extending my arms like a diver as I went down. I have
tipped over on this bike
before, but somehow, in
my new age bracket, I feel
distinctly too old for these pedals. Randy describes how I rolled
into the fall perfectly. I'm not sure how this is possible when your
foot is clipped into a bike pedal. As he continues to praise my fall,
I think, "No, not."
My clips might have been rusty from sitting in the winter rains -- a
fixable problem that might mean this system is still worth trying to
master. But I think (and hope) that Max will feel more genuine about
praise for his bike-riding before I do.
Monday Jan 4, 2010
Nanny Kate puts in her first full day in almost two weeks. The first
thing she notices after her holiday break is how hefty Kai is.
He had been stable at 21 pounds for months and months. He would eat
often -- as Max said one night last month, "That kid can eat. He's an
eating machine." But most of the time, he never wanted to eat more
than a few bites. Randy remembers tonight that there's an eating
therapy that suggests that if you want to get kids to eat, starve
them. That is supposed to allow them to then connect the act of
eating with getting full.
I don't know that we could have brought ourselves to taking that
approach with Kai. But
his illness did it for us.
He has been a serious eating machine since -- full-sized meals instead
of grazing. Tonight he weighs in at 24 pounds.
Tuesday Jan 5, 2010
I'm sorry and thrilled about interrupting Max and Kai tonight.
Max is hooked up for bed. Kai is usually in his crib at this point,
but tonight he's on the loose upstairs. We haven't faced this
situation often. I suggest to Randy that we might want to cut it
short, so that Max doesn't feel bad, being tethered to his pumps while
seeing Kai free.
The boys have recently become friends. It was two days ago when I
suddenly realized that it is now easier to take care of the two of
them together than it is to take care of just one. ("So it was worth
it?" Randy asked.) After all the excitement of our household of 11
family members in Sonoma, Max
and Kai seemed to come back to our quiet house, look at each other,
and think, "Hey, I can play with you!"
Last night, in the middle of wrestling with Kai, Max actually
announced, "We can be friends."
Tonight, as soon as Kai sees me at the top of the stairs, he comes
toward me, calling "mama." I explain to Max that I'm so sorry to have
interrupted them. But I'm also thrilled to have seen them -- Kai
sitting on Max's lap, Max with his arms wrapped around Kai, Kai
giggling, Max beaming.
Wednesday Jan 6, 2010
A stranger emails to say that she has been following Max's story for
years. She feels compelled to contact me now, because she has advice
to offer -- on less
wineries to visit. I love the volumes this speaks about how well
Max is doing.
Thursday Jan 07, 2010
Now it's Randy's turn to
One of my New Year's resolutions has led to me cooking more. Last
night, I prepared some pork chops that we thought were tasty. Max
chewed away on his "steak," and declared it to be a good thing that
Mommy was cooking.
This afternoon, Randy and I go mountain biking with
whose last outing with Randy included a steep run where Randy lost his
seat. (You can hear it pop
off here --
they both insist the run was much steeper than the video suggests.)
I'm the one we're worried about today, since I'm feeling tentative
after Sunday's fall, and my
knee is still a little sore.
But as we push up a hill, Randy is the one struggling, and then losing
his lunch. In classic form, moments before, he says he is fine and we
should keep pushing.
When we get home, Max asks (with perhaps a little prodding from Kate)
whether Daddy drank too much wine.
We reassure him that Daddy did not. But really we're not sure what
this was. Maybe pushing too hard soon after eating, possibly on top
of a lurking virus of some sort.
We hope it has nothing to do with my New Year's resolution.
Saturday Jan 9, 2010
I ask Max if he is ready to fly to Colorado tomorrow. His answer is
He asks how many days we'll be in Colorado. I say seven. "Ohhh! Why
seven days?" Because that's how long it will take us to have our
meetings. (We'll be presenting our research to an advisory board,
hosting a conference, and seeing doctors.) We'll stay in a rental
house, just like we did in Sonoma. "Ohh. Why?"
Because other people are living
in our house. "Why?" And so on.
I remember wondering at some point when Max would start providing more
questions than answers, but neither Randy nor I can remember how we
I never do find out how Max feels about flying to Colorado. But the
morning we left Sonoma, as I did Max's cares while he slept, he
suddenly blurted out "Boulder Colorado!" When he later woke, he
started talking about how we would leave for Boulder in 10 days. I
think he is ready.
Sunday Jan 10, 2010
Our kids are better travelers than us in some ways. Yes, Kai wails as
we board today's flight. I see the looks of dread as passengers file
past. But then he nurses, and sleeps almost straight through from
take-off to landing.
And yes, Max wants to run. "Why is the seat-belt sign on?" he keeps
asking. But he runs when he can, and when he can't, he turns to his "suitcase" (a truck lunch box from
Auntie Naoko, which he was quite confused to discover did not contain
any trucks when she first sent it). Randy had encouraged Max to pack
it strategically for this trip. Randy opens it to discover that it is
only half full, with a few choice items -- Max's monkey, a tiny bunny for
Kai, a car, a wooden key, a foam circle from our alphabet tiles, a
Buzz Lightyear, a toy puzzle. If we had packed his suitcase, it would
be like ours -- crammed full, difficult to open without stuff falling
out. But Max has made his quite manageable. He happily sorts through
it while waiting for the seat-belt sign to go off.
Monday Jan 11, 2010
A meeting with our health insurance ostomy nurse in Colorado brings
good and bad news.
She tries a new product on Max that is less rigid, and should flex
more when Max bends so that it stays affixed longer -- in theory. In
practice, the product is leaking a few hours later. At this rate, we
would need 240 ostomy supplies each month. This is the nurse who said
she could not make a case for Max to go beyond the 20 supplies per month covered by
The good news is that she is not the enemy. She has other ideas for
products to try, and she makes clear that she wants to work with us to
find a good solution.
Tuesday Jan 12, 2010
Randy and I are feeling like ghosts.
The kids are adjusting fine to being back in Boulder -- running around
to explore the rental house when we arrived Sunday night, playing in
my lab yesterday afternoon and serving as pilot subjects for new
studies while Randy went to a talk. (Kai perseverated beautifully again,
while Max switched this time
Everything feels so familiar. We have only been gone 5 months, after
all. (My colleagues reminded me of this fact in unison yesterday,
when I walked into my first meeting. They erupted with welcomes --
for the new faculty member I
walked in with.) But we can't go to our
home, except to visit (which Randy and the kids did yesterday --
things look good enough that Randy forgot all about the fire). And we're driving an
unfamiliar, massive rental, which fits the kids and Kate and us and
TPN and luggage. We feel ungrounded, back but not really here.
Even the weather is confusing. Randy and I had wondered, as we
shivered in the 50 degree gray days of Berkeley, how we ever survived
the freezing temperatures of Boulder. So we've been shocked since
landing by how warm Colorado feels. We keep catching ourselves
urgently trying to bundle the kids, then realizing we don't need to.
Part of it is the sunshine here. But we landed at night, so then it
was probably more about the dryness. A colleague also pointed out
yesterday that it's not all that cold here now -- in the 30s,
versus below 0 last week.
Still, it's not nearly as warm here as Berkeley. Maybe ghosts don't
get as cold.
Wednesday Jan 13, 2010
At our rental house with our friends tonight, Max gets what he wants
and doesn't get what he wants. Both work out well.
He wants our friends to run around the house with him. Akira lasts for a good hour,
drenched in sweat, with only a brief break when he is replaced by Priti,
another friend from grad school, visiting to speak at our
At tuck-in, Max asks Michael
to hand him a "tar." He asks repeatedly, because Michael can't
understand what he wants. I model an exaggerated "k" sound, a combination of
gargling and clearing my throat like I'm about to spit. We have been
doing this periodically, at Speech Therapist Beth's
encouragement. But tonight may be the first time Max actually needs
to make the sound to get what he wants. And he makes it: "hhhhhh
Caaaar!" The sound seems to surprise him. He says it over and over,
then moves on to "Kai!" and "Kate!"
Friday Jan 15, 2010
Last night, Max asked when "those people" (Akira, Priti, and Michael)
were coming over. He seemed disappointed when we explained that we
had to head back out for a conference dinner. We make it up to him
Ben is the first kid to
arrive. He and Max jump off the couch onto cushions, while Kai hovers
over Ben's 3-month-old brother, Andy, sleeping in a carseat. He
stares at Andy throughout the extended couch commotion behind him,
saying "bay bee."
After Max and Henry and Ayla and Liam arrive, the big
kids run off to the bedroom. I find them in a pile on the floor.
They begin picking themselves up when I ask if they are okay, and as
the last ones stand, they reveal our colleague Akira at the bottom of
I come back to find Kai still hovering over the carseat, now with an
alarmed look on his face. The carseat is empty. Several adults try
to explain that the baby is nursing, but will be back.
The house feels a bit more chaotic than usual tonight, but not that
much more. In Priti's talk at our conference yesterday, she presented
her research showing that chaotic home environments are associated
with poor cognitive outcomes. She reassures me tonight that it's not
this kind of chaos. A good thing, since the boys seem to want only
more of it.
Saturday Jan 16, 2010
Randy and I left our camera at home, thinking we wouldn't have time
for one on this trip. With meetings that lasted through dinner,
neither of us managed to even sort through the mail in our offices.
But we will go home tomorrow with images.
One of my favorites is the blank look on our colleague Jon's face, when he came
upstairs to hear Max's jokes at tuck-in Monday. Max looked at him,
eyes wide in anticipation of the impact of his joke, and exclaimed,
"Buzz Light Socket!" He was unswayed by Jon's need for some set-up,
as we explained how Woody refers to Buzz Lightyear as "Buzz Light
Beer" in one scene, and now Max likes to riff on that theme. Randy
thinks Jon is not sufficiently impressed with Max's humor. I think he
is appropriately impressed, given Max's apparent inability to tell
which combinations are funny (Light Socket was probably his best) and
which are not (Light Window, Light Pants, etc.).
This afternoon with cousins brings more memorable moments -- first in
Evergreen, where we meet beautiful baby Sophia, and watch Maya pulling
Max by his hand for adventures around her house and yard, while Mateo
and Kai play in parallel. Then to Golden, where I count to ten in our
games of hide-and-seek, and open my eyes to see Kai standing right in
front of me, after watching everyone else hide. He crouches down to
stare at Toshio, hiding under a table.
No camera, but many vivid images.
Sunday Jan 17, 2010
As we prepare to board our flight back to California, Randy looks
around frantically, and asks, "Where's Kai?"
It's hard to keep track of everything. We checked our suitcases of
clothes curbside, but even with Kate helping us, we still have our
hands full with carry-ons of Max's TPN and associated supplies (2
suitcases), plus diaper bags, backpacks, and strollers. And two boys
who love to run off to play on the moving sidewalks.
As Randy whips around, searching for Kai, Kate provides quick and
amused reassurance:"You're holding him!"
Monday Jan 18, 2010
I asked Max on Saturday what he thought about Boulder compared to
"Boulder is wider."
"Wide open plains?" Randy asked. "Or wide roads?" I suggested.
"No," Max clarified. "WHITEr."
I had noticed the contrast in diversity when we stopped at a Boulder
grocery store Wednesday
night. But I was surprised to hear Max comment on it. Then I saw
that he was looking out the car window, as we drove to see his
cousins. He was looking at the snow.
"And Boulder is browner," he added, as he looked at the barren
"Ah," we said in sudden understanding. "And Berkeley is what?" We
figured he would say greener. We have been overwhelmed by how lush it
is back here, in the midst of a week of rain. We head out in it this
afternoon to run around Jack London Square on the Oakland
waterfront, and to see the harbor's enormous container ships, trucks,
trains, and cranes (which were rumored, apparently falsely, to have inspired
the AT-AT Walkers in Star Wars). Randy and Max saw them from the
plane yesterday and decided we should go check them out.
Berkeley is definitely greener. But we still don't know what Max is
talking about in his hometown comparisons. His response to "And
Berkeley is what?": "Redder."
Wednesday Jan 20, 2010
Max sits inside a cardboard box tonight. The box is turned
on its side, so Max can only see out one direction. He calls, "KAI!
KAI!" Kai circles the box, responding, "Mah! Mah!" They giggle.
I hope this means we can keep the baby.
The night before we left for Boulder, Max said he wanted to take baby
Kai back to the store, put him in a basket, and trade him in for a
baby that doesn't go into rooms, shut the door, and then get stuck
It would be convenient if Kai would stop doing that. But, I told Max:
Derek loves Lia, Logan loves Maddy, Olivia loves Cole, Christian loves Jamison, and Austin loves Chase.
Max was unpersuaded. He puts his hands on Kai's shoulders, looked him in
the eye, and declared, "I don't love you, Kai."
I wondered if he was getting these ideas from a book we read recently,
where a boy begins to appreciate his younger sister only when he fears
that she has been turned into a pumpkin.
I tried to build on this idea. I suggested that we could go ahead and
trade baby Kai in for another. Maybe we could see if Logan wanted to
swap Maddy for Kai.
My plan backfired. Max excitedly endorsed my plan. "Yes! Yes!"
Friday Jan 22, 2010
Max has been curious recently about how heavy his head is. We pull
out the scale this morning. He pushes the top of his head onto it,
like he is going to do a handstand. The scale doesn't register
anything -- the pressure is probably too variable. So I show Max how
I can lie down next to scale and rest my head on it. The scale reads
8.5 pounds. Max follows suit. 9.5!
A speaker at our conference last week discussed the finding that head
size predicts IQ. I ask Max if he has more brains than me. "No," he
replies, "just one."
Saturday Jan 23, 2010
We think we are ready to host our first dinner party in Berkeley. We
At least if you judge based on how the first guests arrive, apologizing
for being on time. They could hear Max screaming from their car.
How quickly things change. Yesterday, I could imagine no greater
happiness than teeter-tottering with the boys. We had driven down to
Stanford in the rain. Max and I debated what to do during Randy's
meetings. (The guys went to Wahoo Fish Taco during mine.) I drove to
a playground with guidance
from yelp, planning to splash around only briefly given the
endless gray skies and rain. Max declared the sun would come out. A
rainbow appeared as we reached the playground. And as we wandered to
find surfaces that I could wipe dry with a burp rag (a swing for Kai,
a small slide for Max), the sun emerged. I put Kai on the teeter
totter, and squeezed Max on behind him. As I sat down on my end to
send them into the air, they squealed in delight -- up and down, Max
leaning into Kai, Kai nestling into Max.
Now Max won't stop screaming, after waking from a late nap, and losing
the battle to stay in his pajamas. I feel like screaming too. In
fact, I do try to yell above Max's bellowing for Randy to bring an
urgently-needed diaper wipe for Kai. If our guests also heard me
screaming as they approached our house, they don't mention it.
We're also not ready if you judge based on our need to recruit another guest to wrestle with
Max while we cook. Perhaps it is no coincidence that he is the guest
who later asks after the whereabouts of the nanny.
And we're definitely not ready to host a dinner party if it needs to
be efficient, as opposed to spread across 5 hours -- starting with
nuts and cheeses and olives interspersed with Max-calming attempts,
wrestling, and trains, followed by TPN hook-up and tuck-in, then squash risotto and salad
interspersed with trying to get Max back into bed (he falls asleep
only after Randy hooks up his formula pump after dinner), and finally
strawberry rhubarb pie.
But if you judge based on whether we collapse happily afterward and
start planning our next dinner party, then yes, we're ready.
Sunday Jan 24, 2010
Grandma Julia comes over this morning with her daughter Katy. We give
her a Lightning McQueen card to express thanks for Christmas gifts for
the boys. Max has signed his name on the card, clearly legible for
the first time.
Watching Max learning to recognize letters was unbelievably fun.
Watching him learning to write them is even more so. Tonight, he
insists on writing "Max" and then having us show him how to write "the
whole thing," even though he never goes by Maxwell.
Maybe our thank you cards will be worth the wait.
Monday Jan 25, 2010
Randy and I eventually give up on waiting for a break in the
But first, I spend 5 hours with the boys inside all morning. Writing
letters continues to enthrall Max, but not for 5 hours. Randy next
spends 5 hours mostly in the car, braving the storms to drive out to
the coast (Stinson Beach, Bolinas, and Muir Beach) with sleeping boys
and then with boys not wanting to play by the ocean.
We all meet up at our local playground this evening. We're done
caring about the weather. We make castles in the well-soaked sand,
then run around playing tag, squealing in the rain. No rainbows. No
Tuesday Jan 26, 2010
Max has reverted to making "t" sounds instead
of "k" sounds. I ask if he
will ever make the "hhhhhhh k" sound again. "No," he says, "only in
Wednesday Jan 27, 2010
Berkeley has something for everyone, but we never expected this.
We drive to pick up our Audi on trendy 4th Street down by the bay
(where it has spent the last couple days getting a timing belt
replacement and other old-car maintenance). Randy insists that Max
join us for the trip. It's not for the auto shop -- though Max is
happy to show off his Lightning McQueen shoes there and play with the
lowrider toy that bounces up and down to its namesake song.
No, Max is with us for a stop at a nondescript building around the
corner. Randy is convinced that this is a good idea. But when we
walk in to the quiet office and supply space, we get the reception I
have been anticipating. Half a dozen workers in hairnets look up in
shock. They clearly aren't expecting visitors. Certainly not visitors
like Max, who runs around saying he wants to see the place and look at
samples. We point out a photo on the wall of a buff climber, scaling
a vertical rock face. He has an ostomy too.
Randy first noticed this building, for the Cymed Ostomy Co.,
on an earlier trip for car repairs. They make the ostomy product that
our nurse has the highest
hopes for, so we're dropping by for samples. Normally these would get
shipped to us. But since we're right here, Randy figured that Max
might like to see the people who make his kind of stuff, and these
people might like to see the consumers who so appreciate them. Once
the shock wears off and everyone is smiling and talking with Max, I
think that Randy is right.
Thursday Jan 28, 2010
Our time in Berkeley is not all a blur, at least for Max.
We enjoy a kid-friendly, inexpensive Indian dinner near campus. There
are so many easy places like this to try here. As we head home
afterward from our work parking lot, Max recounts how we also went
down to the BART station and
to our work holiday party.
Randy and I eventually realize that those outings would be the two
other times we have parked in this lot with the kids.
Friday Jan 29, 2010
We're mostly appreciating stability.
Max's health is stable. This is a dream come true, allowing us to wrestle
and pretend to be be race cars and write letters while intestinal
transplant technologies continue to develop.
But our other dream is for Max's intestine to adapt enough for him to
not need the transplant. We want his feeds to keep increasing.
Instead, we are witnessing what we've heard about, that the greatest
adaptation occurs in the first three years. We haven't been able to
increase his feeds in months.
As usual, Randy responds with optimism. Growth can be spurty, with
big changes after long periods of stability. From what Randy
remembers of articles we read long ago, this is also true of
intestinal adaptation across the lifespan.
Saturday Jan 30, 2010
The boys are helping us make the most of our sabbatical.
They get us out to explore, and to explore further. This afternoon,
we plan to ride bikes from the Berkeley marina again. But Kai
falls asleep as we approach, so we drive on. One hour of napping
later, we arrive at Crissy Field in San Francisco.
The boys slow our start, first as Randy unloads our bikes with Max's
"help" and I play with Kai on the beach, then as we grab food and make
pit stops. When we finally start riding toward the Golden Gate
Bridge, dozens of colorful sails are racing in under it. The boys
have slowed us just enough to catch this dramatic view of the Three
Bridge Fiasco, an annual boat race.
Then the boys speed us up. Crossing the Golden Gate Bridge has always
been a crowded affair, whether driving in traffic or walking among
tourists. But we have the path on the ocean side of the bridge, for
bikes only, almost all to ourselves. We bike over to Marin County and
back, with Max insisting we keep moving whenever we stop to enjoy the
view (at least the distant one -- the waves directly below us are too
We ride through the hills of the Presidio (with a brief playground
stop), then dismount to stroll around the Palace of Fine Arts as the
sun sets. The fading light does not prevent a mob of tourists from
surrounding Kai -- after Max runs off -- for an extended photo session
amidst cries of "He's so lovely!" After first looking panicked and
bidding everyone "bye bye," Kai starts soaking it in. With each call
of "you're so lovely," he slowly brings his finger to his chest, with
an inquisitive look, like "Are you talking about ME?" After the crowd
finally moves on, they surround the kids' empty bike carrier and
photograph it too.
Once we're back in the empty parking lot, Randy loads our bikes while
Max breaks his out. I can hear him getting more comfortable as he
rides in the darkness, at the end of this day of adventure.
If only the boys were as good at helping us make the most of balancing
our Boulder versus Berkeley work.
Sunday Jan 31, 2010
The requests of children have never been so endearing.
Max plays with the daughter of a local
colleague at the spectacular Dream land playground in Aquatic Park,
near the Berkeley Marina. Katie runs around the huge wooden play
structures, calling for Max to follow her.
She is timid about swinging though, while Max seeks more thrills,
asking if he can be dropped down through a stack of tires onto the
tire swing one level below. But Katie is not timid about asking for
what she wants. She walks right up to a man blowing balloons for
someone else's birthday party, and asks if she can have one. Her dad
explains that she has learned that she can often get what she wants if
she asks. She gets a balloon.
I see Max running off with another boy's toy car. The boy runs after
Max. I head over to try to help, but the boy's mom explains that Max
walked up and asked very nicely if he could play with her son's car.
The boy looked at Max, said "I like your Car shoes," handed him the
car, and they ran off to play together.
After Max shares his bike with Katie, and Katie shares her balloon
with Max, we prepare to say good-bye. Katie's dad mentions that she
will be having a birthday party in March. I joke that she will
probably let people know what she wants. She looks up, and sweetly
informs me, "I want Max to come to my fourth birthday party."
Monday Feb 1, 2010
We haven't felt alone.
So it was jarring when our health-insurance ostomy nurse
expressed her amazement that we've been doing things by ourselves all
these years. As if, no wonder we sometimes go through three bags a
I guess we were alone in the sense that no medical professional had
advised us on Max's bags in person since Max was in-patient, during
his first four months of life in the hospital.
But we had in-person consults with Christian and Ellie's families during our
months in Boston. We had in-person consults with Austin's family after that.
We've learned from dozens of other families through emails, yahoo
groups, and the short gut
wiki. We've spent hours on the phone with ostomy product nurses.
Not to mention taking Max on a company tour.
Yesterday, we tried the second product recommended by our
health-insurance ostomy nurse. Both of our tries disintegrated within
hours, like with the first product. These skin barriers look great
(flexible and breathable), but they are not designed to withstand the
output from such a small amount of intestine -- most patients have far
more. The products we have been using all along might turn out to be
the best match for Max.
Another item recommended by the nurse turns out to be a huge help --
can be dropped in the ostomy bag to absorb the output and make it more
manageable. These represent a much more efficient system than the
crate-loads of cotton balls we go through now.
A mom in Ireland had actually recommended these gel-packs to me last
fall. We just hadn't obtained samples until now.
The ostomy nurse has one other alternative skin barrier for us to try.
We are grateful for her help. But we haven't been alone.
Tuesday Feb 2, 2010
Randy likes to ask whether, in all his optimism, he has ever been
wrong. Now I can say yes.
When I come home after work today, Max asks me where Daddy is. I
explain that he is right outside, pouring gas into our car. I bought
a container of it on my way into work, driving the car that Kate uses,
after the RAV4 wouldn't start. "Oh why?" Well, because it ran out of
gas. "Why?" Well, we drove it for a while, then the light came on
saying it needed gas, then we drove it some more. "Why?" Because
Daddy is an optimist.
Thursday Feb 4, 2010
They are talking about Max in Hawaii tomorrow. A professor of
nutrition asked if she could show his before- and after-Omegaven
photos in a presentation to pediatricians and pediatric surgeons
in Oahu. The first time we
granted permission for their use was almost two years ago. We
wish the photos weren't still needed, that Omegaven
were more readily available. But we hope they will help.
Friday Feb 5, 2010
After we clean Max's blood off the floor, a fellow parent turns to me
and says that he can't believe how calm we are.
I don't feel calm. I've slept only a few hours, after not being able
to fall back asleep after Kai woke crying in the middle of the night.
I'm stymied by how long of a story I could tell in response to the
parent's comment. I say nothing.
We have come to the lab I am
visiting, to test out games from Thinkfun. (The researchers here
have discovered that playing games like these may boost intelligence.)
Max shows minimal interest in the games involving letters and numbers,
and moderate interest in the game with cars and trucks. (When we told
him we were going to the lab, he said that he wanted to play the game
with cars and flowers.) In
the end, Max and Katie and
5-year-old Lily forgo the games for a spinning chair. They spin
around and around on it, again and again, in all combinations of
riders and pushers.
For the final ride, Katie sits upright in the armchair. Max is
sprawled across her lap. I issue my habitual admonition to be
careful, as Randy steps up to spin. Max goes flying off the chair onto
the hard floor. Blood splatters his face, his shirt, the floor, and
Randy's shirt as he tries to comfort Max.
As we struggle to get a good look inside Max's mouth, Randy realizes
that the blood is streaming from his chin. It looks like something
has gotten embedded in it. It turns out to be a flap of skin. We get
a band-aid on it, and clean up the blood. Max is calming. Randy and
I apparently seem calm. Kai is off in someone's arms.
We head home, and hook Max up to his TPN. We figure that he will need
this even if we have to head back out for stitches. We clean and
examine the wound, with me holding Max over the sink while Randy
squirts saline syringes over the wound. When Max starts to squirm and
protest, I tell him that if Katie were getting squirted like that, she
would giggle. Then Lily would say, "I want to do it!" Max starts
His wound looks good enough (less than 1/2 cm, and the bleeding has
stopped) for us to go with just antibiotic ointment and band-aids for
now. I am not calm, but I am calmer.
Our assessment of the Thinkfun games: They seem very safe.
Saturday Feb 6, 2010
Max is tucking his chin into shirt this morning. I'm not sure if he
is trying to protect it, or feeling self-conscious. He says he is not
Maybe all he needs is a good distraction. He gets it. He spends the
afternoon at the Exploratorium with Randy and Kai, and the evening in
the Oakland hills at the home of my high school classmate, Deepak, for
his fortieth birthday party and kid-fest. Kai jams tokens into a
Connect Four game with another toddler, while Max cooks using a
kitchen set belonging to his 5-year-old hostess, Sadhana. Even when
he and another boy his age fight over a truck, no chins are tucked.
Sunday Feb 7, 2010
Randy and I weren't totally crazy when we thought that Tilden Park
might be an oasis of flat
paths to bike on. This afternoon, we find the closest we've come
to that in these hills -- a 4 mile stretch of paved path, with mostly
gentle ups and downs, from Inspiration Point. Kai sleeps on our ride
out (even over the rattly cattle guard crossings), and Max falls
asleep on our ride back (after we stop to watch a coyote running
across the hill below us). In between, we enjoy a picnic lunch and
360 degree views: Mount Tam
to the west, Mount Diablo to
the east, the Oakland cranes
to the south, and Point
Pinole to the north. Max runs all around the relatively flat
stretch of land, while Kai moos at the cows.
Monday Feb 8, 2010
Max has learned a new word: dumb.
He doesn't hear it often, but he is now imitating how Randy has been using it
the past few days. This morning, Kate asks Max what happened to his
chin. He won't answer her at first, but eventually describes how
he fell off a chair after Daddy spun him really fast. He explains
that Daddy was being kind of dumb.
Tuesday Feb 9, 2010
At least Max enjoys our car woes.
Our luggage spilling onto the
freeway made him giggle. The death of our Saturn brought the
excitement of a big tow
truck. Our Audi repairs
meant getting to run around watching for trains behind the shop. (I
got excited when Max recently asked to go back to the nearby ostomy
company, but then he explained that he just wanted to watch for trains
Today's car woes mean that Max gets to watch Randy jack up the Audi,
then replace the tire that went flat as Kate and the boys left Totland. Max doesn't get to
help out though, try as he might. ("Just the wrench, Mom! I just
need the wrench!") Randy drives on the spare to get the tire repaired
while I drive everyone else home. The tire turns out to be beyond
repair. It will get replaced tomorrow.
I wish Max's entertainment weren't so expensive. But at least someone
Wednesday Feb 10, 2010
When I go to load the dishwasher, I find a can of black beans, a can
of refried beans, and a jar of roasted garlic pasta sauce, all sitting
on the bottom rack. Kai likes to help out too.
Thursday Feb 11, 2010
Kai's attachments are growing.
He carries Babar, his elephant, all around the house
with him and into his crib. Now he also insists on "butch," his name
for his truck blanket hand-me-down from Max.
He has been calling Kate's name lately: "Jeet!" He is usually
beaming. Tonight though, he calls for her through tears, objecting to
Randy suggests that Kai might need to go home with Kate. "I would
miss Kai too much," I protest. "I would miss Kai too much
too," Randy adds. "I would miss Kai too much too!" Max exclaims.
Max's attachments are growing too.
Friday Feb 12, 2010
Max has been asking every morning when Grandpa will arrive. His visit
is so close now that this morning, Max asks, "Who is coming over
today?" He is surprised to hear that the answer is Mike, our Boulder colleague, who
drops by for a skype meeting with Randy and a student back in
I remind Max that Grandpa is arriving tomorrow. Now it's his turn to
surprise me, by asking, "Does Grandpa have any kiddos?" Well yes, he
does. He has two. "What are their names?" Well, their names are
RANDY and KATIE. I give him a knowing look with my dramatic emphasis.
He is unfazed. He only wants to know, "What kind of toys do those
Saturday Feb 13, 2010
Minutes have never felt so long, and days have never felt so short.
When Max asks where Grandpa is as we come down the stairs this
morning, I explain that he has landed in Oakland and will be here any
minute. Max keeps running to the front door to look for him,
double-checking my time estimate ("Any minute, mom?"), and asking for
updates on where I think Grandpa is at that moment.
Grandpa's arrival gets so built up that when he does step through the
front door, both boys seem a bit intimidated, at least for the first
minute. Then Max takes Grandpa down to the play mat. Kai joins in
the wrestling and giggling, adding his calls of "Bampa."
After brunch, we drive north to Larkspur to catch the long-awaited ferry to San Francisco. Grandpa
finds a nice set of seats where we can all face each other. They end
up just holding our stuff for most of the hour, while we follow the
boys on their rounds through the boat -- out to the windy bow, back to
the calm stern, upstairs to the lively crowds, and down below to the
more muted sounds and only occasional passengers. The close views of
the churning water from the lower level seem more interesting to the
boys than the stunning views afforded everywhere else, of Alcatraz,
Angel Island, and the bay bridges and cities.
After a couple hours wandering in San Francisco, we take the ferry
back. The boys are desperate for naps, but spend the ride touring the
boat again. Back in Larkspur, Max asks how many weeks Grandpa will be
staying with us. Wishful thinking. We have to inform him that
Grandpa isn't staying for weeks, just barely days. He'll fly home
At tuck-in, Max follows up to ask Grandpa what time he is leaving
tomorrow. Clearly, too soon.
Sunday Feb 14, 2010
This isn't the first time someone has been puzzled by Grandpa's love
He once shared a video of his boat, at a gathering of family and
friends when Randy and I graduated from CMU. His brother eventually
suggested that maybe we didn't have to watch the extended, real-time
footage of the cleaning of the bottom of the boat in its entirety.
Yesterday morning, Max was confused when I told him that Grandpa
really likes boats."Why?" he asked, adding "I really like cars."
But it turns out there's something for everyone to like about the USS Hornet,
an aircraft carrier that we head to Alameda to see this afternoon.
All of us are amazed by the massiveness of its 41,000 tons, and the
dozen aircraft it houses across its hangar deck and the flight deck
above. Randy and I focus on its role in retrieving the Apollo 11
astronauts after splashdown (rather than trying to explain its role in
military action against Japan). Grandpa ponders what different parts
of the ship actually do. Max and Kai run in and out of the entry,
giggling as they find their way through the clear plastic sheets of
door. We have to pull them away from it as we arrive and as we
Grandpa explained to Max yesterday that he really likes cars, too. And
Max may be liking boats more and more -- even if he doesn't understand Grandpa's love of them.
Monday Feb 15, 2010
I wonder if Kai got his Valentine's Day ideas from Max.
When we stopped at Codornices
Park before heading to Alameda, Kai focused on a bouncy ball that
was more than half his height. And he focused on bringing it to a
feisty girl three times his age. She would kick it or roll it away.
He would chase after it, often inadvertently kicking it away. But he
kept at it, bringing her his offering again and again. She eventually
ran off to the big kid swings. Kai persevered, negotiating the low
barrier around the swing area with a slow combination of squatting and
backward crawl, though he eventually seemed to decide that the girl
was too old (and mobile) for him.
The day before, Max approached a group of older girls playing duck-duck-goose
on a pier near the San Francisco ferry terminal. He was beaming with
anticipation, but unsure how to join in. The adults suggested that
the girls could teach Max how to play. He didn't understand why they
were sitting, and first tried to convince them to play tag instead.
(Then everyone gets to run!) The girls convinced him to sit
with them. Then they convinced him to get up and chase when he was
called "goose." Then they convinced him to stop running when the girl
he was chasing sat back down. But they never managed to convince him
to not sit back down next to that girl.
Wednesday Feb 17, 2010
Max and Randy are sniffling. Our students back in Boulder have been
updating us on ski conditions, while the magnolia trees and cherry
blossoms are blooming here. And bringing early springtime
Thursday Feb 18, 2010
Hot dog, french fries, ketchup, and ginger.
I never would have guessed how happy it would make me to see my kid
eating this dinner. (Michael
Pollan's Food Rules has inspired us to snack on whole foods lately
-- lots of fresh vegetables and fruits.) But Max's appetite is
beautifully back, and this is what he happily eats for dinner tonight.
When Kai calls to get out of his high chair, Max tells him that he
should stay so we can all enjoy dinner together.
We increase the rate on his formula pump tonight, for the first time
in many months. It's the
tiniest amount, an eyedropper more each hour, for just the first half
of the night. But we are thrilled. We'll take things eyedropper by
eyedropper, bag by bag, bird by
bird, hotdog by french fry.
Friday Feb 19, 2010
I also never would have believed tonight's dinner scene, with Max
asking for more and more salmon after a playdate with Charlie and Leo, and Randy
pulling bites for him from atop of a bed of eggplant, zucchini,
tomato, and olives -- all cooked
by me! New Year's resolutions are going well,
thanks to the minimalist
Saturday Feb 20, 2010
A bad thing plus a bad thing equals a good thing.
The gel packs for Max's
ostomy bag seem to be reducing wear time for some reason. Our standard
cotton-ball system may be better.
The 90-day allotments of this product allowed by our insurance company
(probably based on elderly
patients again) would last Max less than a week.
So we didn't really want this product that we can't really have.
Sunday Feb 21, 2010
I've never been so excited to see a Kaiser doctor on the weekend.
Well, at least not since I was in
labor with Max, and our beloved OB rushed in wearing his biking
garb, ready to deliver our baby. (Dr. Jeff did end up having
enough time to change into his scrubs.)
Today's meeting with a pediatrician in San Francisco is just as
incongruous. We're at Zeum (as in
muSeum, but more fun), to reunite with Dr. Karin, a college roommate I
haven't seen in over 15 years. Kai is also pretty excited to see her.
He offers her Legos from a big building table, and Colorforms that can
be stuck on a wall inside empty art frames -- instant masterpieces.
Max is too busy. He leaps through fire with a half dozen other kids.
(They slide down a wide green slide, then watch video of themselves
apparently writhing in flames through greenscreen
technology. Kai makes occasional appearances in their videos, sitting
peacefully at the tips of the flames (top of the slide), or calmly
descending through them.) Max makes movies with Randy -- first a 2-D
animation (taking photo sequences of blocks and playing them back as a
movie), then a news show (where Max picks music, an ocean backdrop, a
script, and a fireman's hat, then sits in front of a green screen,
growing increasingly sleepy and unresponsive to Randy's attempts to
engage him in dialogue for the camera). He thrills to riding the
carousel with Charlie and
Leo, after we run into them on our way out.
It's great that Max can just be Max, and doesn't need any medical
attention from Karin. Still, I hope they can get to know each other a
Tuesday Feb 23, 2010
When we look back on the happiest times in our lives, I imagine
us often remembering this time.
Wednesday Feb 24, 2010
The important thing with kids' head injuries is to stay calm. I had
read this advice after Max's recent spinning-chair incident. I
follow it this afternoon.
It helps that Kate is with Max, so that I hear her horror first, and
have time to remind myself to stay calm as I run over to them. Max
has fallen. He is crying, and putting his fingers in his mouth, then
panicking at all the blood on them. I see a horizontal gash right
between his eyebrows. Kate goes for band-aids while I hold Max,
trying to soothe him.
Kate comes back and sticks a large band-aid vertically from Max's
forehead to the bridge of his nose, trying to help close the wound.
I realize that this gash is only just starting to bleed, so it can't
be the source of all the blood on Max's hands. After cleaning his
hands to help calm him, I look at his mouth. The blood is coming from
two cuts into it -- one near each corner, each cut curving upward to
yield an eerie resemblance to the Joker.
As Max helps me clean the blood from his chin and cheeks, then around
his mouth, the bleeding slows.
We try to make sense of these odd wounds. Max will only point to the
floor where he fell when we query him. I eventually realize why. He
probably knows that he shouldn't have been doing what he was doing. I
see his cup on the floor. His cup, held in his mouth, curves upward
from his lips and hits horizontally right between his eyebrows.
He won't say what happened, but he agrees that we will follow a rule
of No Running with Cups in Your Mouth.
His lips have stopped bleeding by the time Randy comes in from his
meetings half an hour later, and his other cut stops bleeding not long
I'll try to keep following the stay-calm rule too.
Thursday Feb 25, 2010
Mouths heal quickly. The cuts on Max's mouth are barely visible
today, and he shows no sign of being affected by yesterday's incident.
Good thing, since his appetite continues to be good. After a rare
overnight g-tube leak yesterday (which prevented him from getting his
full continuous feeds), he informed me, "Mom, I'm a little bit
Friday Feb 26, 2010
When Max asks what we're going to do today, I say that I'm thinking
about going to hear a talk by a college
classmate. And Daddy is thinking about taking the boys out for a
big adventure. Max asks in disbelief, "Daddy is thinking while he's
He has every reason to be skeptical. We spend the day at home, with
the boys and me trying to recover from colds.
Friday Feb 27, 2010
Randy tells Max that we are going to see a dragon. I reassure Max
that it will actually be people dressed up like a dragon. Max just
wants to know if he can ride it.
No, he can't. In fact, he can barely see it.
We're meeting 5-year-old Sadhana's family in San
Francisco's Chinatown, for the lunar new year parade, billed
as the biggest celebration of Asia outside of Asia. The crowds on the
street make it tough to get close to the action, and the low-density
entertainment of a parade makes it tough to keep the boys from running
Luckily, their running off brings us to a playground on a hill. This
brings a much better ride. Max jumps onto a tire swing with Sadhana
and another older girl. He doesn't know how wild Sadhana is. She
pumps the swing higher and higher, spinning all the while, wilder than
even Randy's swing-pushing. Max starts yelling for help. I want to
jump in to rescue him. But he notices what the girls are doing, and
quickly switches from yelling to join them in laughing
Kai quietly climbs up platforms to slide down a slide, over and over.
He takes occasional breaks to lock eyes with kids his size, then
continues with his routine.
We can see the tops of dragons in the parade below, but they are too
distant to hold the kids' attention. The boys barely notice even the
loud bangs around us as the crowds throw snap fireworks on the ground.
They only really look up from their play when a brilliant red firework
lights up the sky directly above.
On our way back to the car, we stumble upon the parade just past its
official route. No one is here, so we can walk right up to watch the
dancing dragons, elementary school kids drumming, and women hiding and
jumping out from the folds of a giant fan on a parade float.
When we get home, Max bobs up and down like the dragons to show me his
favorite part of the parade. He didn't get to ride them, but he got
quite a ride.
Sunday Feb 28, 2010
We have been debating not telling Max what is going to happen after
Kai generally naps in the car on the way to afternoon adventures. But
Max often spends the time excitedly discussing our plan. Today, he
keeps asking what Derek and
Lia are doing. We try to explain that it will be a while until we
meet them so he should nap, but all he seems to hear is that we will
So we arrive at the Cow Palace in Daly City with Kai well-rested, and
Max exhausted but crazy with anticipation. And that's before he even
sees what we mean by a train
He runs to a Thomas table and starts pulling trains around the track.
Derek and Lia coax him over to the next showroom, filled with model
trains tooting their way around landscapes of rolling hills. The
third showroom features a big bouncy house that Max runs through with
Lia, the tiniest of model trains that Derek's dad warns him not to
breathe hard around, and a large train that I ride around the showroom
with Kai and Derek and Lia, while Max rushes back to the Thomas
He wants to play with trains that he can touch. Everyone else
eventually comes around. Kai collects railroad signs and small
landmarks from around the track and walks over to stand next to Lia,
holding out his offerings and waiting for her to notice him.
After closing down the place, we get lost trying to find our Christmas-day playground. We
end up at Parkside Square, the most exciting playground yet -- with a
see-saw that can fit the whole family while Lia and Derek dance on the
middle, a tire swing that seems so tame after yesterday that even Kai
insists on riding it, squeezing a chain in each fist as Randy swirls
the kids in ever widening circles, and of course, a slide that Kai
devotes his quiet attention to.
Max falls asleep only as we drive home after a Thai dinner, when he is
finally convinced that he won't miss anything.
Monday Mar 1, 2010
The last time we missed out on
birthday cupcakes was in Boston. Max's cares prevented us from
getting to the bakery downstairs in time.
We had an extended celebration of Randy's birthday with our outings
this weekend. (When I suggest that Max might wish Daddy a happy
birthday this morning, he insists that it was yesterday. That
was when we gave him his home-made birthday cards.) We'll
probably celebrate again when Aunt Katie comes to visit this
So for today, Randy and I take just a lunch break down the hill at the
Gourmet Ghetto, for Red Velvet cupcakes that we read
about recently. But that shop is closed, and a nearby bakery
doesn't have cupcakes. We pick up samplings at Peet's and Epicurious
Garden instead -- a much more luxurious way to miss out on
And in the end, I manage to pick up some perfectly tasty grocery store
cupcakes on my way home from work. Randy enjoys what doesn't end up
all over Kai's face.
Thursday Mar 4, 2010
When I come home from school, I often tell Max that I've been working
with Katie's daddy (who is
teaching me brain imaging techniques). Max is ready to listen. Today
brings big news. Katie's birthday party is coming up, and Max is
He takes the opportunity to remind me that he wants Thomas and James
for his birthday. He has been reminding me about these trains every
day for weeks. Maybe he thinks we need to start planning months in
advance for the party he wants to throw. He talks about inviting
locals like Katie and Charlie and
Leo, but also friends back home, like Toshio and Max and Henry. When I tried to
explain that Colorado is very far away, he expressed his appreciation
of this fact by adding that Barnes & Noble is also far away.
Colorado isn't so far away in terms of the academic year. We're more
than halfway through our sabbaticals, and this era of Max wanting to
hear about my work days.
Friday Mar 5, 2010
I fill out a survey about the words that Kai produces, for a language
development study back in Boulder. The checklist doesn't include any
of my favorites: gee-doo, view (Kai
will announce them on our scenic drives, and also insists on being
held up to the window to see the one from his room -- and will often
follow up with another favorite, fog), and most recently,
meeting. As soon as anyone suggests one, Kai and Max arrange
their chairs to face one another, then sit toe to toe, with Max
holding forth on agenda items like a bus or a ball, while Kai
announces what they are doing (mee nee, mee nee).
Saturday Mar 6, 2010
We discover how to get a photo of Max smiling.
When he sees a camera, he usually runs away or contorts his face or
makes it go completely blank. But in the photo we bring home tonight,
Max and Aunt Katie are squeezed in together with huge smiles.
All it takes is a drive through the south bay redwoods after picking
Katie up from the airport. A drive to Santa Cruz and the boardwalk
and the Sea Serpent, a roller coaster that takes photos of riders as
they shoot down the steepest hill after the sharpest curve.
(Max is also smiling on his ride with Randy, and his ride with me, and
his ride with Randy again.)
Kai is normally a ham. But he's the one going blank today, zoning out
during his first amusement park rides -- a car and a boat and a dragon
-- while Max takes the controls next to him. The only sign that Kai
gives of enjoying the rides is his willingness to part with his
tickets, handing them to each ride operator without a struggle.
We use our final tickets as the boardwalk closes, and walk out to the
sun setting over Monterey Bay.
On the drive home, Kai calls for his aunt: Jeechie! Jeechie! Katie
reaches back to hold his hand. Max is too far back to reach or see
Katie. He asks for their roller coaster photo.
Sunday Mar 7, 2010
I'd like to thank the Academy. Or the Academies.
The Cal Academy of Sciences entertains the boys again this afternoon -- even if,
after their first few minutes of fascination with sharks, stingrays,
and searching for Nemo, their entertainment comes mostly in the form
of running up and down the ramp in the 4-story rainforest.
Then the Academy Awards entertain the boys, by bringing a party at Charlie and Leo's. The adults
gather around the tv while the kids gather around the train table.
Monday Mar 08, 2010
We do Napa cheaply this afternoon. Which is apparently how we like
Bay Area living (plus car replacement) has been costly, but we can do
a lot with the kids for little to no money. Aunt Katie and I stroll
with them this morning to the no-moving-big-red-train park. Max
tells us how to get there, while Kai points. We appreciate the train
in a whole new way as we huddle in it during a sudden rainstorm.
After a rescue pick-up by Randy, and a long brunch wait that leaves us
with just a few hours before Katie's flight home, we head for wine
country views. Max calls out directions and cautions that "This does
not look right to me," as Randy merges onto the freeway. Luckily, Max
is looking at the Colorado map, while Katie navigates with the
While waiting for the rain to let up in the Napa town center, we read
that the vintner we're waiting outside may be overpriced.
We leave in favor of a free option with rave recommendations on yelp:
Playground Fantastico, a space designed in a clearly collaborative way
by architects, artists, and children. Kai naps, while Max runs
through little houses that we can't fit in and explores the nooks and
crannies of a castle. These little spaces remind me of Max and Kai's
giggling after brunch, as they ran in circles through an arched metal
gate to lock bikes to. Kai could just fit through it, while Max had
We move on to a winery with beautiful views of the rolling hills.
After climbing up several flights of steps to the Domaine Carneros
chateau, Katie and the boys run around the patio while Randy and I
taste. He thinks the more expensive sparkling white wine is clearly
superior to the cheaper one. But when he closes his eyes, every time
I hand him the cheaper one he thinks it is the expensive one, and vice
versa. I don't bother to do a blind taste test since the differences
seem too subtle for me. But the expensive pinot noir clearly stands
out from the cheaper one -- until my blind taste test, which goes
exactly like Randy's.
Free playgrounds, and views, and bike lock posts, and cheap(er) wine.
Tuesday Mar 9, 2010
Drip by drip. We increased
Max's overnight feeds by another eyedropper full last night.
Wednesday Mar 10, 2010
Randy pushes Max and Kai around in their double-wide shopping cart at
Costco this evening. The boys sit squeezed in together, playing with
their buckles. Max asks why all carts can't be like this one.
Thursday Mar 11, 2010
Kai's 18-month naming explosion isn't obvious in his number of words.
To the untrained ear, it sounds like he only has a few, because his
words sound so much alike. Max translated for Kai during Aunt Katie's
visit: OTCH = out, BUTCH =
blanket, DAH CHEE = cottage cheese.
Even for us, it can be hard to tell whether Kai is talking about Aunt
Katie (JEECHIE) or one of his grandfathers (JIJI) or a sticker
(CHEECHEE). Or whether he's talking about his other grandfather
(BAMPA) or one of his grandmothers (BABA) or a cracker (BAPA).
But Kai's naming explosion is obvious in his enthusiasm. He urgently
called out BOP! BOP! BOP! with every bus we saw during Aunt Katie's
visit. He announces SHOE! SHOE! when I untie his, SHOTCH! SHOTCH!
as I remove his socks, followed by TOE! TOE!
As he sits in his high chair overlooking Neko's bowl, Kai repeats
NETNO FOO! NETNO FOO! until someone replies, "Yes, Neko's food."
Then he beams. Same thing with "MAMA NEE!" after I sneeze.
I have agreed to fill out the survey about the words that Kai
produces every month for the next year. At 18 months, I check 128
words on the list. The exact number is debatable. The enthusiasm is
Friday Mar 12, 2010
The idea of Max having an
intestine grown for him some day might be getting just a little
less crazy. Intestinal
tissue has been created from stem cells.
Saturday Mar 13, 2010
Max has been laughing while I do his morning cares. I asked him
yesterday what was so funny. "Your face," he replied, explaining,
"It's very open." This morning, he demonstrates for me, raising his
eyebrows and widening his eyes.
Sunday Mar 14, 2010
Max talks about someday being tall enough to ride the big
roller coasters at Santa
Cruz. Now Kai seems eager for more thrills too.
This afternoon, Randy and I bike with the kids around the Tiburon
Peninsula north of San Francisco. The 14-mile loop is mostly rolling
hills overlooking the Bay. But toward the end, our route dead-ends
into a steep hillside. I have been leaving the navigating in Randy's
hands, but now I pull out my phone to check the map. Randy explains
that I need to turn on the satellite view to see the route he planned.
It is not actually a road. It is this hillside.
The kids get out to hike up the steep, rocky trail while Randy and I
push our bikes. The top has a plateau where the kids can run around.
The descent looks too steep for them to manage, so they go back in the
bike trailer. Randy and I negotiate our bikes down, walking them
while squeezing the brakes to prevent us all from slip-sliding down
the steep muddy slope. I think this is plenty of thrill for the
That's what I thought yesterday, too, when we escaped the swarms of
tourists in Golden Gate Park by biking off-road, along quiet wooded
trails. But Max was still looking for more adventure afterward. He
found it on a slick concrete slide in the park's showcase playground,
flying down solo after Randy thought that Max had already been going
down on his own. He goes even faster without an escort. We struggled
to get him to leave as the last bits of light were fading.
And on our drive home tonight, Kai calls out, "Bapu ahda." I repeat
after him, puzzled. Randy can't figure out what he's saying either.
We ask Max to translate. "Backward underdog!", he explains. After
today's breathtaking ups and downs, Kai is asking for his favorite
daredevil style of swing-pushing.
Monday Mar 15, 2010
I'm not ready to let go. Not that I'm anywhere close to needing to.
But that's my first thought when Randy tells me about Max's evening.
He and our new neighbor, 3.5-year-old Zoe, walked down the street
together to look at Max's favorite tow truck. They held hands.
Wednesday Mar 17, 2010
More beautiful drips. We
increase Max's feeds for the second half of the night (the window
after Randy does his 3 am cares).
Friday Mar 19, 2010
When I walk into the boys' bedroom this morning, Kai asks me to open
the window shade, so that he can look out at the fog over the water,
see the trees, and maybe even the stars and the moon: SHEEP! FAH! WAHVOO! CHEE! CHAH!
Saturday Mar 20, 2010
We've never been so relieved to see a mama bear and a baby bear.
We're biking along the San Pablo Reservoir north of Berkeley. We are
resting at the top of a grueling hill, debating whether to turn back
and retrace the 5 miles back to the car, or to proceed along the loop
that also includes the Briones reservoir. Our map suggests we've come
a quarter of the way around the loop.
The kids are due to nap, after spending the first half of the
afternoon at Katie's birthday party. Max seemed a little put-off by all the other
preschoolers seeking her attention. We thought a game of tag might
help, but that only led to tension over whom Katie was chasing. Randy
broke out his party-clown
skills, getting all the kids to join in trying to catch him, and
falling to the ground when they did, so they could pile on top of
Katie was falling asleep in her father's arms as we said good-bye.
Kai napped only briefly on our drive to the reservoir, while Max not
only stayed awake, but went on to run around the hills and playground
and pier at the recreation area where we parked and unloaded the
As we debate whether to bike onward, a cyclist comes up behind us. We ask
how tough the rest of the loop is. He explains that the hills around
it are known as Papa Bear, Mama Bear, and Baby Bear. The hill we just
climbed is Papa Bear. We rejoice, and decide to go for the loop. The
very fit cyclist looks us over, with the kids in tow behind Randy, and
asks if we have cell phones just in case.
We come to see why he was skeptical. Max naps briefly while we push
forward. Kai chants, "OhMy, OhMy, OhMy," and "OhBoy," imitating us.
But we end up using our cell phones only to catch photos of the kids
checking out the views -- brilliant green hills looking down upon the
water, with a lush valley to coast through between Mama Bear and Baby
Sunday Mar 21, 2010
Kai is no longer a mama's boy.
He is copying everything Max does (while squealing Me choo! Me choo!).
As we headed out for a walk Friday, I ran through our options: Do you
want to go to the park? To the rope swing? To see the view of the
Bay? Kai echoed Max's Nooooo to each option, and they giggled
conspiratorially as they focused on sending their trains down a
neighbor's driveway instead.
Kai's imitating means that when Randy and I come home together, Max
isn't the only one running around the corner, to welcome Daddy Daddy
Kai does still call for me. But Max points out the difference today.
Kai doesn't call "Mama" any more. He calls "Mommy."
Monday Mar 22, 2010
Max could pack anything in his suitcase and it would be cute to us.
Two mornings ago, he announced that he would pack for our spring break
trip with a Babar book for Kai, cars, books for Grandma and Grampa to
read, and more cars. ("Then I will zip up my suitcase and say 'I'm
all ready to go!'") When Max actually packs this morning, he brings a
Lightning McQueen coloring set and 4 cars.
He kicks off our coastal trip to San Diego by coloring and handing
each of his creations to Kai. He transitions to keeping an active
watch as we drive into Monterey. He is looking for alternate
destinations to Fisherman's Wharf. ("Why do we have to stop here?"
Randy and I gradually come to appreciate what a good question this
is.). Max spots a distant park that we backtrack to, to find the most
spectacular playground yet, with a suspension bridge, a maze, a slide
made of spinning rods, and a real train to climb on. And lots of kids
to play with.
Maybe this explains Max's reaction to the Lone Cypress on 17 mile
drive, just before we stop in Carmel for the night. When he sees the
dramatic tree on its outcropping over the Pacific, he declares,
"That's not fair." He wants the other trees to be closer.
Any commentary would be cute. But Max's couldn't be any cuter.
Tuesday Mar 23, 2010
Kai denies it all tonight.
I query him about the day. Did he hold his arms in the air like he
was riding a roller coaster this morning, sitting in his carseat while I
drove up and down and around the curves heading out of Carmel toward
Big Sur? Noooo.
Did he call out "bwoo ohshow, bwoo sea" to the cliff-side views of the
Pacific? Did he look up out his window and call "moo" for the half
moon we could see throughout our drive? Noooo. Did he collect
eucalyptus seeds and rocks on Hearst Beach, and inspect kelp on the
The closest Kai comes to admitting to any of his coastal sightseeing
activities is when I ask, Did he call out for the moon in the night
sky while we walked the boardwalk in Santa Barbara? He hesitates.
Then he replies: Chah.
(Stars -- he pointed those out too.)
Wednesday Mar 24, 2010
I watch an older couple sitting at the hotel's continental breakfast.
They look relaxed -- taking their time, occasionally reading newspaper
blurbs to each other. It seems like another world.
We're having a good morning, but in our case it means just one quiet
bag change at 3 am (as opposed to two nights ago, with one quiet bag
change at 2 am, followed by a screaming-fit change at 5 am, with a
third change needed before we checked out of the hotel). So we felt
relatively well-rested when Max opened the window shade this morning,
looked out at the palm trees, and declared, "It looks just like your
As the couple gets up to leave, they comment on how cute Max and Kai
are. Randy and I smile apologetically as the boys run around the
dining area squealing. The couple explains that this is their first
outing without their kids, who are about as close in age as Max and
Kai are. They inform us that their kids are 17 and 20.
We drive down the coast to Long Beach, to join Grampa on his boat
briefly so Max and Kai can get a feel for it in preparation for our
outing this weekend. Max starts "helping" right away, tying a rope
line around the tiller. I envision spending our sailing trip trying
to restrain the willful boys from jumping overboard or into trouble on
We then drive to our luxurious hotel room in La Jolla, arranged by my
hosts at the university here. This will be the first night of the
trip that we aren't squeezing into one bed with Max.
Dinner (Mexican -- perhaps our first poor yelp experience) is
mediocre. The highpoint comes afterward, as we walk to our car and
come across a ramp that leads into a convenience store. Kai runs in.
Then runs out. Then Max and Kai run up and down the ramp, and around
in circles on it, falling down one after another, giggling. Kai calls
out "Me choo!" Strangers stop
We've got some time before 17 and 20, before Randy and I might relax
over breakfast newspaper blurbs. So be it.
Thursday Mar 25, 2010
As I close the hotel room door behind me this morning, I hear Max say,
"Thanks for staying home with me, Daddy, 'cause I really love you."
My last trip to San Diego wasn't so long ago -- Fall 2005. It was
also a road trip, also to present research -- the same research. The
preliminary findings I presented at a conference then are incorporated
as published papers in the talk I'm giving today.
But that was another world ago. Max was just beginning to grow in my
belly. Now, when I mention that to him, he tells me how he came out
of my belly through my mouth. He reassures me about my talk. When I
tell him that I'm a little nervous about it, he says, "Every talk is a
little tough, Mommy." (We often say things like this to him about
challenges, adding that we know he can do it. He doesn't add that
part.) He and his brother provide the video-entertainment portion of
the talk. And they make me feel guilty for leaving them.
When I come home from meetings tonight, it is the longest I have ever
been away from Kai, and the longest I've been away from Max since Kai
They are returning from touring New York, Washington D.C., San
Francisco, and New Orleans -- all recreated in Lego form at LegoLand,
where the boys ran around for more than 6 hours.
Max exclaims, "Mommy!", then runs past me for his pjs. Kai gives me a
hug, then calls for butch and
It's a little tough, but we can do it.
Friday Mar 26, 2010
Kai is thrilled to be so understood.
We leave San Diego this morning for Monrovia, home of NETNO and MAHM
(Naoko and Mike). After a delicious Korean barbecue lunch, we walk
from NETNO and MAHM's apartment to a playground. Kai sits in a swing,
asking for BAPU AHDA, and
squealing when NETNO and MAHM comply. After lots of swinging and
sliding, we walk to the local street fair. Max does a quick tour of
the petting zoo (holding a chick and trying to lift a baby goat),
while Kai hunkers down to pet the baby goats who come to him. Max
runs laps through a bouncy house with a slide, then rides a pony.
We head out for a Taiwanese dinner, where Kai downs bowl after bowl of
hot and sour soup, happily enunciating TOFU to everyone at the
Both kids are exhausted after only brief naps and a lot of time at
restaurants. But they are happy through tuck-in, thanks to NETNO and
Saturday Mar 27, 2010
Kai continues to be understood, if not happy.
We try to dress him and Max in their Polynesian outfits from Grampa's
FEMA stint in American Samoa. Kai watches Max insist on getting out
of his outfit, then insists on getting out of his own, then continues
to scream for the next 45 minutes. His first tantrum.
He calms by the time we get to dim sum with Naoko and Mike.
We head to Long Beach afterward. The Santa Ana winds are too strong
for us to leave the dock. They have calmed enough after lunch for us
to motor around the harbor. Max is uninterested in helping Grampa
steer, and spends much of the time climbing up and down the ladder
below deck instead. Kai sits in the cockpit, pointing to parts of the
boat over and over to hear their names: wench, cleat, block.
Sunday Mar 28, 2010
We discover the secret to a relaxing 4 hours at a winery with the
boys: Veronica and Madeline.
We drive up Malibu canyon to Saddlerock vineyards, to enjoy a
fantastic picnic lunch in the Santa Monica mountains, and an extended
chance to catch up with friends. The secret is the 8-
and 9-year-old daughters of our friends. Veronica and Madeline take
Max and Kai all around the garden, introducing them to the horse
swings and bench swings, presenting them with gift bags filled with
cars and trucks and planes, and tattooing their arms with aliens. Kai
is dazed. Max is thrilled, reaching out to hold the girls' hands as
they wander and play.
Monday Mar 29, 2010
The plan is for Randy and me to drive with Kai back to Berkeley today,
leaving Max with Grandma and Grampa. At least that's the plan Max
describes this morning. He explains that he won't miss us at all, and
Grampa can drive him to Berkeley in his truck in a couple days.
A weekend at Grandma and Grampa's just isn't long enough. Not long
enough to read with Grandma or play with her impressive truck
collection. Not long enough for Max to "clean" around her pool with a
paintbrush and roller. Not long enough for Kai to throw an empty
plastic container around the back patio, giggling with Grampa. Not
long enough for Max to translate what Kai is trying to tell them.
It's hard to say good-bye. Kai would propose the same plan for
himself if he could.
Tuesday Mar 30, 2010
The "running test" suggests that Max is doing well: running around
LegoLand, running through the Monrovia playground and street fair,
running around the Malibu winery.
His regular medical check-up this afternoon confirms it. His labs
look great. His liver enzymes may be better than ever. (We're no
longer in the habit of immediately checking them against our graphs.)
His growth is right on track.
Wednesday Mar 31, 2010
I'm not sure how good of a job we're doing answering Max's why
questions. When he explains the reason behind something these days,
he often says, "Because that's just the way it is."
Thursday April 1, 2010
The sight of Max this afternoon stops me in my tracks. He is sitting
at the dining room table, by himself. Kate is off with Kai somewhere,
probably upstairs. I'm leaving the studio in front of the house, when
I catch sight of Max through a window. I call Randy over to look.
Max is sitting in front of a plate of pasta. He jabs pieces with his
fork, puts them in his mouth, chews, and swallows. No one is coaxing
or praising him. He doesn't know we are watching. He just munches
away, looking satisfied.
Friday April 2, 2010
I get invited to give a talk in D.C. this summer. I issue my standard
reply: It's hard for me to travel because of my son's medical
condition, but I'll see if I can coordinate something with my
I am not optimistic.
I know our careers are not what they would have been without pumps and
needles and bags. When I think about my career, it doesn't matter.
When I think about Randy's career, I feel guilty. But I know how
lucky we are to have jobs flexible enough to accommodate Max's
I email Randy to check the dates. His calendar is open to travel for
the dates of my workshop, which is the main way we can make work trips
possible -- as a family. But he had penciled in a meeting he was
hoping to attend immediately afterward. He wasn't optimistic
His meeting is in D.C.
I think the kids are going to the capital.
Sunday April 4, 2010
When Kai wakes in our hotel room this morning, the first words out of
his mouth are "JIJI! BABA!"
I hope I'm doing what they're doing when I'm in my 60's+ -- inspiring
the next couple of generations to hit the slopes. Randy and I have
been hoping to get up to Lake Tahoe all winter, but it took baba and
jiji's arrival yesterday to get us here.
Max has been unsure whether he wants to try skiing. But after
studying a DVD of Toshio's first successful outing, brought by jiji, he gets into his snowsuit
this morning without complaint. It helps that Randy tells him he
needs to wear it to go to daycare, something Max always
seems eager for.
Kai is too young for ski school, but he seems inspired too. Whenever
we mention daycare, he insists he is going to CHEE CHOOL.
He's more right than we realized. He gets to play in the snow, and
Max's CHEE CHOOL outing from daycare consists of putting on boots and
skis and walking around a bit.
Neither kid is ready to leave at the end of the day. Except to
reunite with the couple who inspired this trip.
Monday April 5, 2010
We're accustomed to jiji working during our family gatherings.
Randy and I do it too. Max has started asking us why we work every
day when other people don't. He seems satisfied with my explanation
that we love what we do.
But Kai doesn't get it. He walks over to jiji sitting at his laptop,
before and after we enjoy 18" of fresh powder today. (At least some
of us enjoy it. After one mini-run down a practice slope in the arms
of his teacher, Max declares "all done" -- simultaneously saying and
signing it, to leave no room for misunderstanding.) Kai starts
handing jiji things -- butch, Babar, foam toy pieces. He runs off after each delivery
to find something new for jiji. He insists on taking jiji's HAN,
tugging it to bring him over to the couch, then demanding that jiji
SHEECH next to him. Each time jiji tries to go back to his laptop,
Kai steps in.
What Kai doesn't know won't hurt jiji.
Tuesday Apr 6, 2010
It was hard enough to take Kai seriously when he was exclaiming about
cat food and sneezes. Now he
is urgently announcing numbers and letters. E!!! O!!! T!!! If you
want to make him mad, just carry him away from a sign he is "reading."
Or take more than a second to understand that MOAH NAHNU means he
wants more numbers, which means you should hand him the Elmo cup that
is covered with them.
Saturday April 10, 2010
Good thing I have Kai.
This is Max's response after we drop baba and jiji off at the airport,
then head to a park in Daly City, where I inform Max that the cold
wind and threat of rain may mean no other kids here.
Sure enough, we end up playing by ourselves. When we rush back to the
car to warm up, Max asks if we can go back to the airport to pick up
baba and jiji. I explain that they're flying home after their fun
week with the boys. Max gives a little whimper, and asks if baba and
jiji can come back tomorrow.
Good thing he has Kai.
Wednesday Apr 14, 2010
It would be adorable: Kai in his crib, calling toward the
window, ZHOEY! EE-AHN! The
boys have been spotting these new neighbors in the evening, then
rushing out to race around with them
and Charlie and Leo. It
would be adorable, Kai's repeated imploring this morning, if only it
were not happening at 5:00 AM.
Friday Apr 16, 2010
At a play date at Charlie and
Leo's this morning, Charlie declares of Kai: "He talks!"
The big jump this week is that Max and Kai have started to have
conversations. They usually consist of Max chattering away about
whatever vehicles he is playing with, then turning to ask Kai a
question. "You want this train?" Kai gives his clear reply: NO or
Simple conversations, but yes, THEY talk.
Saturday April 17, 2010
We don't think much about our vulnerability to earthquakes. Until
today, when we see a rock with a sign marking the San Andreas fault,
while biking along Crystal Springs Reservoir north of Stanford. The
sign indicates that the earth here moved 9 feet during the 1906
We don't think much about Max's vulnerability either. We're
meticulous about his sterile procedures, but these have been routine
for some time. So it's easy to forget how dependent he is on his
pumps, and about all their associated risks.
It's easy to forget with scenes like today. Randy and I don't make it
to the end of the bike route. Max and Kai insist that we lay our
bikes down on the ground so they can get out and hike and run and
Sunday April 18, 2010
I wish i could go back 95 years. To a time before the Golden Gate
Bridge. I would tell the grandmother I never met (jiji's mother)
about how her great-grandsons would be playing in her San Francisco
neighborhood in the next century.
Max is transfixed by the taiko drummers in Japantown's Cherry Blossom
Festival parade this afternoon. Randy and I try to convince the boys
to check out the amazing origami display -- its contoured paper frogs
look far more real than the ones
at the Cal Academy. The boys focus on the revolving door into the
exhibition hotel instead, going round and round, and using two of the
partitions as starting gates for their races.
Both boys get cranky in the heat as we squeeze through crowds at the
peace pagoda. Kai sleeps in my arms through the train ride back to
Berkeley, while Max sits with his face up to the window.
When we get home, I ask them about their favorite part of the outing.
Max says "having a beer." Kai says "OHNGE CHACH" -- referring to a
set of orange Christmas lights that he points out whenever we drive
home through our hills, even when they are turned off, like today.
I would need a translator. But I would tell their great-grandmother
all of it.
Wednesday April 21, 2010
I tell Max this morning that someone may be riding a motorcyle from LA
to see him on his birthday next month. Max asks, "Grandma?"
I love that this is a good guess. Max saw her motorcycle under wraps
at her house last month.
Unfortunately, Grandma can't make it up that weekend. Fortunately, I
get to tell Max who can: Grampa.
Thursday April 22, 2010
Sometimes Max's favorite part
is totally predictable.
We go to a Mind and Brain event put on for the community by our
department here. Max plays neurotransmitter tag (where the enzyme
kids try to catch and degrade the neurotransmitter kids), goes on a
memory Easter egg hunt (where the kids hide the eggs themselves, then
race to find them), and looks at brain tissue under a microscope.
His favorite part? Playing
with Katie. He greets
her with a hug, walks his fingers along her arm and up her back while
she eats dinner, and falls to the ground with her while hugging
Friday April 23, 2010
The boys make cards to wish Katie a quick recovery. She is limping
after falling with Max yesterday.
Saturday April 24, 2010
One person's nostalgia is
another's pain. So Auntie Naoko (who is visiting for the weekend) and
I drive around Stanford, reminiscing about my undergrad days and her
grad days. Everyone else is spared from hearing about my favorite
computer cluster (second floor of the student union) and Naoko's days
in the Terman basement. Max and Kai nap in the back seat after their
big play session at a playground near
Zeum, while Randy works at
home. The boys wake just in time to play at a park in family housing,
not far from where Naoko lived.
Sunday April 25, 2010
It's Leo's third birthday
party at Totland this afternoon, but Max decides that Angie is the
star of the show. He pulls Leo's mom around the park to push him in
the merry-go-round and wrestle with him in the grass, and tells me at
tuck-in that he wants to go wherever Angie goes.
Monday April 26, 2010
We receive a warning instead of a $5000 parking ticket tonight.
We haven't experienced much of dreaded Bay-Area traffic, living close
to campus, often working from home, and mostly avoiding rush hour.
But we have experienced the difficulty of finding parking, and the expense
of letting a meter expire for even a minute -- $40-$80 parking
The ticket in question tonight is for leaving sunscreen in our car.
This violates the bear-safety policy in Yosemite. We're thrilled to
arrive here this evening. Randy is thrilled that we can drive right
up to our cabin to unload the cooler of TPN, the suitcase of medical
supplies, and anything that a bear might think is food. Max is
thrilled to sit on the bench in front of the cabin, watching packs of
big kids roaming the campground as we get settled. Kai is thrilled
with a campground rock he protects in the palm of his hand. I'm
thrilled to unwind after giving a talk in Merced on our drive down.
After we get the kids tucked in, Randy heads back to the parking lot
for a final check of the car. Luckily, this is when he runs into the
ranger. He is issued the warning, and clears out the nearly $5000
worth of sunscreen.
Tuesday April 27, 2010
For days, Max has been asking when we will get to Reesembly. (He
begins many words with "ree." Our laptops are our reeputers, Yosemite
Now we're here, walking a couple miles to and from Mirror Lake at the
base of Half Dome, then a couple miles to Yosemite Village to let Kai
continue napping in his stroller. (Thankfully, Randy and I have
agreed on stroller policy
from the start of this trip.)
Max is still asking, "When will we get to Reesembly?" When I give
him a confused look, he explains, "I'm teasing you, Mommy!"
He knows when things don't make any sense. As Randy tells a silly
story in our cabin this morning, Max implores him, "Make any
Wednesday April 28, 2010
We came for the water.
The spring snow melt has created waterfalls that weren't here during
our fall visit, and made the familiar ones (Upper and Lower Yosemite
and Bridalveil Falls) even more dramatic.
The forecast for our two days was originally for snow, then rain.
We've gotten a little of both. Max reacted to the snow by declaring,
"This place should have a ski
ride!" Kai can't stop saying PUDDLE -- great to throw rocks into and
run splashing through, at least until his face-plant into one at
Yosemite Village yesterday, and our later discovery that the boys'
waterproof boots don't protect against splashed water entering from
The storms are otherwise pretty manageable. We walk around Yosemite
Falls and to Yosemite Village in them today, with open umbrellas
hanging over the strollers. We duck out of the storms for lunch at
Yosemite Lodge and a snack at the Awanhee Hotel. I'm the only one
getting drenched today, when I pop out from the Village to search for
Kai's mitten (he is more willing to wear them than Max, but also happy
to throw them). I end up retracing our steps all the way back to the
falls, only to find his mitten waiting for me back at the Village
Just a little more wet than we bargained for.
Thursday April 29, 2010
We leave Yosemite today, glad to have taken only partial advantage of
our cabin benefits. Instead of canvas flaps in the windows and doors
like the tent we stayed in last time, the cabin is fully enclosed.
We have fully appreciated its protection against the cold and wet. We
wake to a beautiful dusting of snow in the campground.
And we have appreciated the ability to store food inside the cabin,
instead of needing to use a bear locker outside. In the tent, we
weren't fully reassured about
whether bears who might attack a car for sunscreen might also attack a
tent for formula and TPN bags, which pump into Max overnight. (Taking
that risk might seem cavalier, but I think it reflects a certain
acceptance of always living on the edge, along
the fault line of IV
nutrition.) The only challenge with not having a bear locker
outside was getting ice packs frozen, for keeping Max's formula cold
in his pump backpack and lunch bag. The campground staff ended up
freezing his ice packs each night.
And we have appreciated the ability of the cabin to protect fellow
campers from screams within it in the wee hours of the morning.
Thankfully, we only needed this ability the first night, when Max
wailed through Randy's cares. After Randy moved his blinding headlamp
from his head to the nightstand, subsequent nights were much
Friday April 30, 2010
As if I needed another reason to show videos of the kids in my
One of my graduate students is scheduled to defend her dissertation
today. After two weeks of coordinating with her 5-member committee
(which includes Randy), she found a single two-hour period from
mid-April through June when everyone would be available. It is this
Unfortunately, due to a mix-up in schedules, Nanny Kate has left
town for the week.
We don't have any backups here for kid care. So I emailed the lab
group I'm working with. My message got forwarded to a larger list,
with a description of how cute the boys are in my talk videos.
Responses came in with additional discussion of the cuteness of those
videos, and I finalized arrangements with an experienced
Nicole arrives early today, just in case. Max starts bringing her
trucks and trains, while Kai shows her books. The boys jump and
wrestle with her across the couple hours of my student's defense.
Saturday May 1, 2010
A colleague offers to attend a talk in St. Louis by a researcher in
Australia next week, on the potential of stem cell therapy for
treating Hirschsprung’s disease. We probably won't take him up on his
offer given the early stages of this work, but we continue to feel
optimistic about opportunities for Max down the road.
Sunday May 2, 2010
The boys wish their cousin a happy birthday.
Monday May 3, 2010
Max is asking questions I can't answer. Like, why did he come before
Kai? He asked the same of Derek
and Lia, who we reunited with at Coyote Hills Regional Park
yesterday. He also wants to know how water can get cleaned if you
can't clean it with soap. Both of my sisters actually work on this
problem as environmental engineers, but all I can muster is something
about chlorine or bromine and ionization. He seems to accept my final
answer, which is that he'll have to ask his aunties.
Wednesday May 5, 2010
I can't blame Max. He doesn't hear our real names very often. This
morning, he pretends that a race car he has put into an IV gauze
wrapper is my birthday present, just a few months early. He pretends
to read writing on the wrapper: "Do not open until your birthday." I
ask if the package has my name on it. "Yes," he informs me, "it says
Friday May 7, 2010
Surfers are so cool.
So cool this evening that we can't imagine getting into the frigid
water at Bolinas. But
our colleague here tethers me
to his surfboard and walks me straight into the water.
So cool that I can hear Max and Kai crying, shivering on the beach
while Rich and I wait for waves.
So cool that when I emerge from the water so that Randy can take his
turn, I can't figure out why my hair feels so strange when I try to
push it out of my face. I eventually realize that I've lost feeling
in my hands.
So cool that Randy feels too numb to push himself up on the
I don't have any better luck calming the kids, or getting them excited
about watching one of their parents surfing -- or rather, watching
Rich send us straight into the sweet spot of waves (the water is
shallow enough for him to stand and push us), and then watching us
wobble. They're miserable.
But after we rush back to the car and get them warmed up, they start
giggling with each other just like they did on our curvy drive out to
the coast. They get out of the car to run around. Rich asks Max how
he's doing. GOOD! Max exclaims. Did you have fun? YES!
Saturday May 8, 2010
It's almost worth it, hearing Max scream tonight.
Our plan was for the kids to nap in the car this afternoon (as they
often do), after we pick up Nana and Aunt Katie from the airport, then
head for what now feels like our usual route together -- into San
Francisco, grabbing a casual take-out lunch from Greens and driving
along the marina.
Max does a good job staying calm while Kai screams and fights his nap,
but neither of them comes close to sleeping. So we stop at a
playground in Golden Gate
After waking from a 6pm nap on our drive home, Max is now screaming.
The kids are exhausted, waiting for us to prep the TPN and get them to
Kai finishes eating, then walks straight down the steps into the
living room, to Max. At first, he seems to swat at Max's face. Max
protests. But then we realize: Kai is trying to wipe away Max's
tears. Max is unsure what to make of Kai's approach, but he seems
interested and touched enough by it to calm.
Sunday May 9, 2010
I explain to Max this morning that Mother's Day is a time when kids
can tell their moms how much they love them. Max can tell Mommy how
much he loves her.
He make pincer grips with both hands to indicate a very small
This is the start of a routine we have together, where I ask how much
I love Max. We start with the pincer grip, and ask THIS MUCH? We
increase the size of the grip and then the space between our hands,
then raise our hands up, higher and higher, all the while asking THIS
MUCH? -- until our hands are above our heads as high as we can reach.
Today, Max opens his hands and raises them to his shoulders, and stops.
That's how much he loves me.
He raises his hands above his head to show me how much he loves
Then he stretches his hands up as far as they'll go, pulsing his arms
to show far he's stretching. That's how much he
loves Angie -- the mom next
It's tough being beaten out by what may be Max's first full-blown
crush (which has been building over the last couple weeks), and by
Randy, but I somehow feel comforted by the fact that both Randy and I
are beaten out by Angie.
And I'm comforted by Kai. We celebrate our rainy Mother's Day at the
spectacular Berkeley Botanical Garden -- a gorgeous retreat for Nana,
Katie, Randy, and me, and a fun place for Max and Kai to hike and
throw rocks into streams and ponds. I carry Kai up and down steps
when he grows sleepy. Randy tries to relieve me, but Kai cries and
protests, MOMMY! MOMMY!
Mother's Day love that I won't take for granted.
Wednesday May 12, 2010
On our flight to Cleveland this morning, a woman stops to ask if I
have a diaper wipe. She seems so apologetic and sheepish that I want
I want to confess that I must have forgotten to lock Max's ostomy bag
into place on his skin barrier this morning, causing a huge blowout
leak before we even made it through security at the San Francisco
Airport. And because of a last-minute re-packing to accommodate Max's
IV pumps, we ended up with no change of clothes for Max in our
carry-on luggage. (Thankfully, a powerful hand dryer allowed Randy to
wash and dry Max's clothing in the bathroom.) I want to confess how
our rushed gate-check of luggage meant that we accidentally ended up
without Max's formula pump for his nap. (Thankfully, his brief nap
meant he still got plenty in, by drinking.) I want to confess how
miraculous it is that I have plenty of diaper wipes in Kai's diaper
bag, and even tissues in my pocket. (I need extra these days.
Whenever Max sneezes and asks for one, Kai calls for himself, KLEENEX
We're wrecks, going on almost no sleep, but excited for this trip --
visiting baba and jiji
in Brecksville (Kai has been
saying BABA JIJI HAIYO for weeks), and giving talks in Columbus.
I can't even begin to convey what I want to confess. I try to convey
understanding in my smile as I hand over the wipes.
Friday May 14, 2010
conference brings 6 hours of talks, only 2 of which feature videos and photos of Max and Kai.
Another talk features the genetics of different attachment styles
between babies and caregivers. There is an oxytocin receptor gene
that is associated with kids seeking but then rejecting parental
reassurance when stressed.
I keep picturing this graph as I try to calm Kai after his short nap
(interrupted perhaps by the Columbus heat, which is hard to escape in
our vrbo rental house). He cries for hugs but then refuses them,
cries for Babar but then
throws him aside, frantic.
I know this is just rare tantrum behavior for him, but in this moment,
he seems more like the kids in the genetics talk than the kids in my
talk or Randy's.
Saturday May 15, 2010
Max expresses his appreciation of baba in 11 words, Kai in 2.
Max announces this morning, "I want you guys to go to a boring dinner
again." I told him last night that our dinner with Ohio State
colleagues would be boring. It was the only way I could convince him
that he didn't want to come out with us. (In reality, the evening was
quite lively.) But Max ended up having such a good time with baba,
throwing rocks into tupperwares of water in the back yard of our
rental house, that as soon as she brings them out again this morning,
he tries to send us off.
Kai expressed his appreciation last night at tuck-in. Baba has been
taking care of the kids energetically, through our conference and
dinner yesterday and drinks with colleagues the night before,
including pulling Kai out of his tantrum yesterday by rushing him out
for a stroll around the block. Kai seems to recognize her vigor in
his new name for his grandmother: AUNTIE BABA.
Sunday May 16, 2010
As we drive out of Brecksville, Max asks Kai if he can say CEDAR.
He can. He points out the Berkeley street by this name whenever we
drive past it instead of turning up it into the hills to our house.
SHEEDAH, HOME. Just in case we missed it.
Kai answers yes to Max's question by repeating after him. SHEEDAH.
Then Max asks Kai if he can say POINT. Kai affirms, POINT.
SHEEDAH POINT. Kai can say it, but he has no idea. Max can't wait.
We arrive at the world's best amusement
park around noon. Just in time for Max to run around for almost
the next 7 hours straight, with 6-year-old Avani and 11-year-old
Kieran. They have come from Ann Arbor with their parents -- Priti and Randy shared an office
during grad school, as did Jim and I.
Max starts off with a car ride with Avani, and quickly moves on to
roller coasters. "Let's do it AGAIN!" He and Avani and Kieran are
big enough to ditch the adults to ride one by themselves. (And the
adults alternate kid-supervision to get in our own rides, like a
nostalgic -- and more thrilling than I remembered from my childhood --
ride on the Gemini.) Max reaches out to hold Avani's hand as they
roam the park.
The only ride we find for Kai is the antique cars. He spends much of
the afternoon clenching rocks and calling for puddles. (The closest
we come is a bridge near some geese and goslings and carp. Kai throws
his rocks off the other side.)
Kai can say SHEEDAH POINT. Max is the one who will be saying it for a
Monday May 17, 2010
"Let's have a boring day today." This is what Max requests this
morning, after sleeping in a couple hours late, following a late night
IV hook-up after Cedar Point.
I remind him that Austin and
Chase are coming over. He has been anticipating this visit for
"Okay," he agrees, "let's have a boring day with them."
It has been almost 3 years since we last got together with Max's match -- Austin has the same
1 in 5 million condition, and almost the same birthday and the same
amount of intestine. Both Austin and Max now have little brothers.
Austin has long been eager to play with other kids like him. Max's
curiosity is more recent.
I think Max ends up happy with how boring the play date is, and how
boring it is not.
Four boys running around baba and jiji's house is not boring. The
noren (Japanese doorway curtains) fall down as kids run through and
tug them. The curtains go back up and come back down a few times, and
then get put away. We discover that 5 of us can fit inside a single
hula hoop together, and that Max and Austin and Randy can trek around
the yard in one after accidentally locking themselves out of the
basement. The boys throw balls and play with Lincoln Logs from my
Max and Austin seem briefly interested in checking out each other's
medical stuff, but in the end, it's what they already know. As their
parents compare detailed notes about inputs, outputs, and supplies,
Max seems ready for us to be done with the boring medical topics
already. He just wants to play.
I'm glad the boys have each other to find their medical stuff
unremarkable. I hope they get many chances to be bored together in
years to come.
Tuesday May 18, 2010
Baba gets Kai dressed early this morning. Jiji drives us all to the
I am taken care of.
The Munakata-family reunions moved to Colorado with us and Toshio's
family. Our last trip to Brecksville was 3 years ago, the one before
that 10 years before. I had forgotten what I was missing.
Being in baba and jiji's home -- even though this wasn't the house I
grew up in, and we haven't had much down-time on this trip -- means
feeling like a kid again. I can point to specific things, like baba's
comforting dinners. Jiji shuttling me between our rental house and
the conference site in Columbus. Touring baba's garden with the boys
the day we drove to Columbus (their favorite part was a metal drain in
the ground). Taking the kids to throw rocks into Chippewa Creek the
day we returned. Seeing the toaster we grew up with (one of my dad's
first purchases upon arriving in this country 40+ years ago), and
realizing that our
16-year-old Saturn was older
than the ancient station wagon we used to kid them about.
It's all of these things and none of these things, feeling so at home
with my parents.
Wednesday May 19, 2010
When we got to our gate in Cleveland yesterday, we discovered that we
were on the same flight as
the mom who needed a diaper
wipe on our flight here. She didn't need a diaper wipe this time.
We didn't have a blowout bag leak, and we did have a backup outfit and
Max's pump in our carry-on. This is parenting -- major triumphs
against a backdrop of feeling inadequate.
Thursday May 20, 2010
Just like that.
Well it feels just like that, but really it's been a long time
I've been weaning Kai for
months, and he has been down to just one nursing a night for weeks.
So I've reassured Randy whenever he has asked: You ARE weaning him
right? You're not going to be one of those moms nursing him when he's
6, right? You DO think that's weird, right?
And then, last Monday, I stuck Kai straight into the crib at tuck-in,
and he skipped nursing altogether for the first time. We had just
seen the movie "Babies" with Nana and Katie. It seemed ironic, given
all the nursing in the movie, but maybe that was it: they were clearly
babies doing all that nursing, whereas Kai now seems more like a boy.
A boy who says NOT YET when you ask if he wants to get dressed. A boy
who says PRETTY good! when you ask how he's doing.
After skipping that night, Kai nursed the next, perhaps because I
lingered hoping he would want to. He nursed just one more time, in
Ohio. Then he was done.
So when Randy and I go to Cha
Am on our date night tonight, I feast on shrimp and scallops, two
foods that I have been somewhat avoiding, out of an abundance of
caution given the potential allergens passed on through my milk.
And just like that, I'm no longer a nursing mom. Kai is no longer a
Friday May 21, 2010
Max and Kai like me to ask them to guess who will arrive on a motorcycle on Max's birthday.
They pretend they don't know. Their guesses today, with a week to go,
include: Neko, a tree, and soap.
We'll be having a party at the no-moving-big-red-train park,
Saturday at 4:00. No gifts (no room! We are contemplating squeezing
everything we can into a moving trailer when we head back to Boulder,
and donating the rest). The only gifts we might have room for are
pictures to help Max remember his Bay Area friends.
Sunday May 23, 2010
With less than 3 months to go in our Berkeley year, Max and Kai
discover the TV in our family room.
I love that it took this long.
We spent the afternoon
in Japantown yesterday, after
driving around the Marin Headlands for beautiful views of the Bay, and
naps for the kids (and me). We woke with plenty of energy to chase
each other around the peace pagoda.
This afternoon, we drop Randy off at the airport (for a quick work
trip in Baltimore), then head to Alta Plaza, a playground in Pacific
Heights with big views of the city. The kids focus on views of the
structures to climb on, the train to ride, the see-saw to bounce on.
As we drive past Japantown on our way home, Kai calls out PEACE
There's just so much to do here.
So when Max and Kai discovered the TV this morning, they turned it on,
and off, and on. Kai stared at the screen for several seconds, then
held up Babar to show him the static. (The TV only works for playing
movies -- it gets no reception.) And off they ran.
Tuesday May 25, 2010
Before Randy left town, Max announced that he wanted me to go and
Daddy to stay. "Because I love Daddy SO much," he explained.
When Max started his nap Sunday, Randy was driving us all to the
airport. When Max woke, I was driving the boys to Alta Plaza. Max
started screaming for Daddy. He screamed for him through the drive,
through unloading from the car, and through hiking up to the
playground. Kai started screaming too.
Randy is back in Berkeley now.
And suddenly, Max seems to love Mommy.
I don't know if it's because this is the most upset he has been about
Randy being gone, but then discovered he could survive with me (with
much help from Nanny Kate). Or because we did more than just try to
survive, with our trip to the city.
It's wearying, doing sterile medical procedures across the night
instead of splitting them with Randy. But Randy might just need to
leave town more often.
Wednesday May 26, 2010
Max will be immortalized. I receive an email asking if he can be
featured in an exhibit on the Human Body at the Science Museum of
Minnesota. His body is remarkable. But the exhibit will showcase
Thursday May 27, 2010
I haven't wanted to get hopes up, but we are on track
to drop names on our trip
to DC next month.
Max's First Year,
Max's Second Year,
Max's Third Year,
Top of Page,
Max's Fifth Year
Max's Sixth Year
Website copyright 2007 Yuko Munakata (munakata AT colorado.edu).