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.)
Friday May 28, 2010
We'll start paying more attention to Max's plans.
He wakes asking if he is 4. Not officially until 9:32 tonight, I tell
him, but essentially, yes. He pulls off his diaper and throws it into
the trash can. I retrieve it, explaining that we do not waste
Max sits on the potty and pees. Suddenly, he is done with diapers.
He has shown only fleeting interest in potty-training over the years.
We've heard this can happen with short gut or TPN, where much of the
fluid comes in overnight. Whenever we've checked in with Max about
peeing in the potty, he has responded, "Only once I'm 4."
He screamed when Randy tried to put a blue-checkered shirt on him a
few weeks ago. Randy didn't know that Max has been saying for months
that he won't wear that shirt until he's 4. He asks for it today.
He is too excited to nap -- opening presents from Nana and Toshio this
morning, awaiting Grampa's dramatic arrival on his motorcycle this
evening, and taking on 4-year-old responsibilities and wardrobe.
I hope his plans become more flexible on his way to 100. That's when
he claims he'll clean up after himself.
Saturday May 29, 2010
Our kids aren't loners. But you wouldn't know it at Max's birthday
party this afternoon.
It's probably my fault.
I have been telling Max that he needs to share his favorite truck at
the no-moving-big-red-train park,
if any other kids want to play with it. So he rides "John Deere" into
a quiet corner of the park, and hides out among the adults while the
other kids arrive and start running around. He must figure that if
they can't see his truck, they can't want to play with it.
Meanwhile, Kai naps. I can't bring myself to wake him, so I pace at
home and wait -- until Randy texts me half an hour into the party, to
say that everyone is there. Kai is calm and happy when I wake him, as
he gets loaded into the car (Grampa has driven back from the party to
pick us up), and as he emerges at the park. But the scene of a dozen
kids romping proves too much. He clings to me for the next hour.
He won't follow Sadhana down
his favorite slide. He won't
let Lia lift him off the
ground. He freezes as Logan
and his cousins run past. He stares from a safe distance
at Leo's dragon costume. We
decide that 2-year-old Maddy
is the least intimidating kid at the party, but Kai doesn't want to
have anything to do with her either.
Lia persists. When Kai won't join her to search for me in a game of
hide-and-seek, she suggests that he join me to search for Lia. He
lets go of me as he searches. Lia asks if she can push him in the
swing. He gives a firm no. But he lets her help as he scrambles up
the side of a play structure. When he gets to the top, he thanks
her. And finally, he lets her lift him off the ground. I am watching
from a distance now, the first time he has allowed one.
Max finally comes around too. It isn't his (vegan) birthday cake --
he throws his piece on the ground. He just seems to decide it's worth
some distance from John Deere to climb on Angie in the
no-moving-big-red train, and to negotiate with Katie about who gets to be the
train conductor. (Answer: both of them, working from opposite
Randy and I savor the perfect afternoon with family and friends from
high school, college, grad school, Boulder, and sabbatical. Glad
we're not loners.
Sunday May 30, 2010
I'm in good company.
I ask Max this morning what his favorite part of his birthday party
was. It seems hard to predict what he will say. Yet his answer is
It's just as hard to think about what our favorite part of this
sabbatical would be. We take the ferry
from Tiburon to Angel Island
with Grampa this afternoon -- to play on the beach, hike a bit up into
the island, and stand at the ferry's chain link fence waving goodbye
and hello to the waves and to our destinations.
I don't want this year to end. I can't imagine choosing a favorite
But Max doesn't take long to announce his favorite part of the
birthday party. Angie.
Wednesday Jun 2, 2010
I don't know if this was also part of Max's plan for turning 4. But
he seems to have decided that this is a good age for telling his
parents how much he loves them. Especially Daddy, but this morning,
Friday Jun 4, 2010
Max might want to cut back on some of the details of his love.
Auntie Naoko and Uncle Mike are in town for a wedding. They watch the
boys while I got a haircut this morning.
Max later expresses the most affection possible, declaring that he
loves Mike more than he loves Angie, and more than Kai loves
jiji and baba.
He says that he loves Naoko a little. Like he loves Mommy.
On our way home, after driving down Skyline Boulevard on the peninsula
while the boys nap (with stops for rock-throwing at Lexington
Reservoir, a playground in Los Gatos, and ramen in San Jose), Max asks
if we can stop at the no-moving-big-red-train park. He explains that
he loves John Deere more than
Angie. And more than Mike.
Saturday Jun 5, 2010
Max may be cutting back on the right details.
He falls this morning and calls for me. He asks for a kiss on his
head, where he banged into Kai's crib. I give him three. He declares
that he loves me more than Angie. That's all I need, but he elaborates: I love you more
than Mike, and more than Daddy. I love you more than Daddy loves Max,
more than Woody loves Max, and more than Kai loves Max.
I share the news with Naoko and Mike. They want to know, What about
John Deere? Max didn't say.
Sunday Jun 6, 2010
Today wasn't supposed to happen.
As we drive away from the airport this afternoon, 5 hours after
starting our journey, Max asks where we parked our car back in
Berkeley. I point out the Berkeley parking permit hanging from the
rear-view mirror. We are IN our car. I can see why Max thinks we
must have arrived somewhere by now. But we haven't left SFO.
We are driving off, unable to get ourselves to stand in the United
line for a fourth time. The first time wasn't so bad. Our flight to
DC had just been cancelled
("mechanical"), and with 2 hours still to go before its scheduled
departure, only a few other people were trying to rebook. Randy opted
for a later flight tomorrow over a red eye through Seattle tonight.
The line was considerably longer the second time. We realized we
needed to get our checked luggage back -- including Max's carseat (but
thankfully not his medical supplies, which we have become more
vigilant about keeping with
us). But our luggage had been sent to DC on an earlier flight.
The third time in line was unbearable. After borrowing a carseat from
United, I received an email from my student in Boulder, with her
itinerary for the meeting in DC. I realized we could try to fly to
Denver today, and get on my student's flight tomorrow. We could see
friends in Boulder tonight, and arrive in DC tomorrow afternoon
instead of after midnight. But the next flight to Denver was also
cancelled ("mechanical"), and subsequent flights were overbooked as a
So when our travel agent called with another option (arriving in
Chicago at 10:30 tonight, departing at 10:30 tomorrow morning), we
couldn't bring ourselves to face the line again. And those flights
wouldn't work very well with Max needing to be tethered 12 hours
So we try to make this a day that we'll appreciate being given. We
head to San Francisco, ending up in Hayes Valley (Dr. Karin's neighborhood in the
center of the city), where we eat lunch and the kids make the most of
running around a minimal park. Then I drive us on a nostalgia tour of
the city. Kai announces PEACE
REEDODA, JAPANTOWN just before falling asleep. When I point out
Alta Plaza a few minutes
later, Max is asleep too. We head west along the marina, past the Palace of Fine Arts, out toward
the coast. Randy stays awake just long enough to wow at the fog
I drive south to Golden Gate Park, marveling at how long I can wander
here without seeing any of our familiar landmarks -- Cal Academy, Stow Lake, concrete slide playground. Kai
wakes as we pass Spreckels Lake, and calls to throw rocks in the
water. It's a short stop. We can't find many rocks, and now that
everyone is awake, we want to try one of our
Max and Kai chant CABLE CAR throughout our drive to Hyde Street. We
catch one going toward the marina, and jump off to hike down and up Lombard Street -- a much
prettier way to see the crookedest street in the world.
On our drive home, Max declares that the only thing we have left to do
in our "Good Night, San
Francisco" book is see the aquarium. He may be right. It has
been an amazing year. And not an altogether horrible day.
Monday Jun 7, 2010
At first, I think our travel woes aren't nearly as bad as my sabbatical host's were on her
trip to Japan.
After flying all night, Silvia and her husband took a train from the
Tokyo airport into the city. They pulled all of their luggage onto
the train platform, then Silvia realized she still needed her laptop.
She popped back into the train, only to see the train doors close behind her,
just before the train sped out of the station.
She managed to get back to the right train station. But she couldn't
find the platform with her husband and their luggage.
Randy and I load the kids and all of our luggage (minus the 2 bags
waiting for us in DC) onto the airport shuttle this afternoon. We
discover that Kai has only one shoe on. Randy jumps off the shuttle
to find the other one. As he retraces our steps to the car, the
shuttle driver closes the doors. I ask him to wait. He asks why we
got on the shuttle if we didn't have everything we needed. I explain
that we just discovered Kai's missing shoe. He says he can't wait,
and pulls off. Max screams DADDY DADDY DADDY! Kai starts crying.
A businessman making phone calls puts away his earpiece when Max's
screaming makes it impossible to talk. Then he reassures Max that his
daddy will be on the next shuttle -- a more constructive reaction than
my ranting about the bus driver. The businessman uprights our
stroller when it falls out of the storage bin. Then he unloads our
two suitcases of medical supplies, two backpacks, two diaper bags, and
two strollers, while I tend to the kids, their lunch bags, Max's truck suitcase, Bobo, butch and Babar.
We all seem overcome with relief when Randy arrives on the next
shuttle. It doesn't matter that he doesn't have Kai's shoe. (It was
in the car, and Randy had efficiently already packed his keys in his
backpack, which was on our shuttle.) Nor does it matter that Randy is
incensed that I somehow missed his text messages with this
Our separation involved only a few minutes of crying. Silvia and her
husband's involved hours of searching, waiting, and attempting to find
their way in a foreign language.
So I feel relatively lucky.
Until our flight lands in DC, after midnight as scheduled. We receive
text messages from our intended housemates, warning us to NOT go to
the house we have booked for the week, and to head for a hotel room
they have reserved for us instead.
Tuesday Jun 8, 2010
I'm relieved to hear Sasha's
mom's presentation this morning, about her new measure of sustained
attention in children.
I'm relieved that her talk is great. Otherwise, I would feel more
guilty about the time she lost to work on it last night, while waiting
to move into the house we rented, and ultimately needing to find other
While we attend our meeting on Executive Function in Preschool
Children, our husbands pack up the kids and our belongings, and go to
the rental house. I have felt a little paranoid about these vrbo's
(vacation rentals by owner). Based on photos on the web, you send
money to a stranger and hope everything works out. And it always has
-- in Paris, Amsterdam, Mountain View,
Sonoma, Boulder, and Columbus. The larger spaces
mean a refrigerator that can hold Max's meds, counters and tables for
mixing his TPN and formula, and room for the kids to play. The vrbo's
often cost less than hotels, and allow us to travel with friends and
family. A place to call home.
Except when you arrive on the second day of your reservation, as
Sasha's parents did yesterday evening, to find a team of people
frantically trying to clean the house. The house was declared ready
hours later, without any linens on the beds. This is when Sasha's
parents booked rooms at the conference hotel, and sent their ominous
Sheets have been delivered today, if not silverware, trash cans, or
enough bath towels to go around. The guys deem the place livable.
They get settled into it while I give my presentation. I'm relieved
just to get through it, on 4 hours of sleep, after renting a car,
driving to Bethesda, and getting the kids tucked in by 3:30 AM. And
I'm relieved to feel right at home showing the video of Max yet again, after
Sasha's mom worked in a photo of Sasha with her Daddy for her talk.
Wednesday Jun 9, 2010
Today, my kids are the ones providing my relief.
I expected to sleep much longer than 5 hours last night. But I have
returned to my pre-pregnancy-&-nursing brain -- ruminating about the
conference, our housing, and anything else that springs to mind before
midnight and after 5 AM.
After two nights like this, I'm a wreck.
My main responsibility at the conference today is to participate in a
working group on neurodevelopment. I ask my kids if they're willing
to step up -- my academic kids that is. Chris and Hannah were prepared
to give my presentation after my flight was cancelled. Now they step
up to brainstorm challenges for the field, to present highlights from
the working-group discussion to the conference attendees as a whole,
and to write a document summarizing the issues. As Chris sits down
from his presentation, an NIH official beams, "If you're wondering
about the future of the field, there it is."
After the meeting, Hannah and I take the metro into the city with
Sasha's mom, to meet up with the kids and dads. We find each other
near the Capitol, and walk down the mall toward the Washington
Monument. In this grand space, Kai spends much of his time looking at
the pebbles underneath his stroller. The kids run excitedly to the
carousel. Kai decides he would rather ride in my arms than on a
horse. We stroll through the National Gallery Sculpture Garden. Max
asks why art can't be climbed on.
Sasha sits between Max and Kai on our drive home. Max asks, "Sasha,
are you happy or sad?" "Happy," she replies. "Then why are you so
quiet?" Max asks. She falls asleep moments later, and Max follows
suit. We've wondered a lot about Max's future. With this sweet
exchange, I think, there it is.
Thursday Jun 10, 2010
After an Indian dinner near the zoo, Sasha's mom asks her if she wants
to drive home to Pittsburgh with Mommy and Daddy, or go home with Max
We know what Max and Kai want.
As I did Max's cares this morning, Kai startled himself awake calling
SASHA. He and Max have loved running around restaurants and museums
with her the last three days, pushing her pink play stroller, and
watching her pee in her potty.
And Max has been watching Sasha eat. He chomped on a hot dog with her
at lunch yesterday, and wouldn't let me tuck him in at bedtime,
insisting he was too hungry. He asked for a plate of rice, announced
that he would eat it slowly, and did so over the next 15 minutes.
Today he watches Sasha drink. A bright green lime-aid. Randy is in
his first day of meetings -- the rest of us are at the zoo. We spend
the first couple hours wondering whether to leave. We can't find many
animals. They are probably trying to escape the heat. Max and Kai
cry as we fail to find any cooler spots for ourselves. As we
struggle, each adult pushing one stroller, we wonder how Randy
possibly managed all three kids yesterday, while Sasha's dad was in a
We come across a sprinkler station. Max runs through the cooling
mist, again and again, as other kids come and go. Kai calms after a
These stations are spread throughout the zoo, and they (together with
lime-aid, which Max gives himself small tastes of) keep the kids
happy. When Randy arrives after his meeting, Sasha and Kai have just
fallen asleep in their strollers.
The house feels eerily quiet when we return after dinner. We wish
Sasha had come home with us like our boys wanted. It's what she said
she wanted too.
Friday Jun 11, 2010
Shoes matter, sometimes.
After dropping Randy off for more meetings this morning, I finally get
a chance to shop for Kai. He has been exploring DC barefoot all week. It has
worked surprisingly well -- in the stroller, or on grass, cool
pavement, or indoors. But many surfaces are getting too hot as the
temperatures climb into the 90s.
So after 3 stores of searching and 3 potty stops (we thought Max might
take a potty-training break during our travels, but he has insisted on
sticking to his 4-year-old
plan), and after lunch and exploring wooded parks, we pick Randy
up and head to the Air and Space Museum. Kai puts his new blue
sandals to good use, running laps through a DC-7. Max manipulates the
controls of a Cessna 150. (Maybe this will make him less shy the next
time a pilot offers to show him the cockpit -- Max declined on our
flight out here.)
We head home to meet baba and jiji, who have driven down from
Cleveland. As we stroll around our Bethesda neighborhood, we come
across three shirtless, barefoot boys playing on a steep street that
dead-ends into ours. We stop to watch as one of the boys gets onto
his scooter. He accelerates down the hill out of control, then jumps
off his scooter just before it slams into the curb with him flying
over it. He is crying and bleeding from his chest and arms. But he
gets to his feet and says he is okay. As I walk him home, he explains
that his brake (his bare foot) didn't work, because it burned.
Max and Kai seem okay, not shaken like the rest of us. We appreciate
how lucky this kid was to be able to walk away, and the relative calm
of the rest of our evening. And shoes.
Saturday Jun 12, 2010
If you had told us, back when we were last dropping names in Boston, that we
would come to live with Christian's family again in
Washington DC some 3 years later, we probably would have wondered what
new treatment Children's National Medical Center would be offering.
If you had told us no, we would be getting together just for fun, so
that Christian and Max could hold hands running around the Air and
Space Museum this afternoon, with their 21-month-old brothers trailing
after them, I don't know that we would have let ourselves believe
We catch up late into the night. We don't know how or when we'll see
each other again. We'll hope it will be in less than 3 years. We
know that anything is possible.
Sunday Jun 13, 2010
My kids are better than drugs.
I have tried all manner of prescriptions to deal with my fear of
flying, which came about in 1997 after our Chicago-to-Stockholm flight
plummeted thousands of feet over the Atlantic in a matter of seconds
at forces of greater than 2G, sending children and food carts into the
ceiling, forcing the ceiling panels of the plane upward so that dust
was crumbling down on us and the plane's inner tubing was exposed, and
reducing most of us to screaming, crying, or moaning.
Many drugs, and other techniques, helped a little. But none of them
helped a lot. And I didn't like the side effects. I once felt out of
sorts after flying to a conference. When I asked a friend whether he
had attended the same session as me, thinking I could ask whether he
had detected anything unusual, he replied that he had walked into the
session right when I was yelling at the speakers.
So I have been surprised by how much I like flying now, with Max and
Kai. I wonder if the oxytocin of motherhood is leading me to trust
more and fear less. Or maybe the kids just give me something better
to focus on.
As our plane lifts into the sky this afternoon, Kai looks frightened
for the first time. He starts to cry as he sees the wing cutting
through the clouds. I reassure him that everything is alright. I
engage him with our bye-bye routine. We wave out the window.
Bye-bye, Washington. Bye-bye, D.C. Kai adds: Bye-bye Japantown.
Bye-bye Peace Reedoda. (He seems to share Max's confusion about exactly
where we ended up after our first long day of (attempted) travel one
After the pilots identified clear air turbulence as the problem on our
Stockholm flight, the crew assessed the damage to the plane and the
injuries to people, and decided that we could continue on, without an
emergency stop in Iceland.
Then, I wanted to make that landing in Reykjavik, and never get on a
plane again. Now, I look forward to the luxury of flying time with
the kids, with no internet or phone -- we otherwise feel like we have
to be wired at all times in case of an emergency. Max sits with Randy
-- talking, watching movies, and on the flight out here, giggling with
a girl he had run around with the whole time we waited to board. Kai
usually sleeps for an hour or two, and then wakes happily, ready to
play and chat.
Monday Jun 14, 2010
Max screams upstairs with Randy this afternoon.
I hate when we have to replace the button going into his stomach.
But we're lucky we lasted until today, after this button broke early
during our trip to DC. The inner seal on it popped out. Luckily, it
popped back in, and the break just meant a struggle to remove Max's
g-tube each time he was done with his feeds.
Now we can replace the button. (We only need to do this every few
months, as opposed to every few
days with some of the balloon-based buttons. But we'll remember
to bring replacements on future trips.) Randy uses a special device
that stretches out the small plastic tab that keeps the button in
Max's stomach, so that the button can be removed. Then he stretches
out the small plastic tab on a new button so that it can be
We gave Max Tylenol an hour before the procedure to reduce his pain.
But his screaming seems to last even longer than usual.
When Randy joins me downstairs, I ask how the replacement went, not
really wanting to hear the details. "Fine," he says matter-of-factly.
"Really? What about all the screaming?" Ah, he explains, that was
while he was clipping Max's nails.
Wednesday Jun 16, 2010
Max announces this morning that he is going to live with Logan and Maddie. I ask if he
will take Kai with him. "Yes, and Daddy too. Because this house is
I know what he means, how anticlimactic our routine feels after our
week in DC with baba and jiji and Sasha and Christian and Jamison's
families. I feel like I should offer some perspective, help him to
embrace the serenity of being home with just us.
But I tell him instead to just wait for the weekend.
Saturday Jun 19, 2010
I'm back on the farm, literally and figuratively.
We arrived last night, after struggling in Bay Area traffic through
San Jose, on south through the garlic smells of Gilroy, east on the
152 with a brief stop at Casa de Fruta so the boys could run around a
pond and ride a miniature train, and finally on to Kerman, half an
hour outside of Fresno. We pulled up to a kiwi farm. My college
housemate, Eric, emerged saying the same thing that was written on his
shirt: Welcome to the Farm.
It was his college orientation shirt -- Stanford is affectionately
known as the Farm. And this kiwi farm is where Eric was raised, where
his parents still live, and where I came with him during college.
We're joined by another housemate from those days and his family.
Randy and I finally get to thank Dave in person, for putting us in
touch with his father, who reassured us about Max's medical team
during our darkest days.
Max doesn't care. He is just excited to ride a forklift, splash his
feet in the pool with Kai, and run around with his old friends Olivia and Cole, and his new
friends Kelsey, Caleb, and Abby. He announces that he wants to swim
with the other kids. We haven't taken this leap yet, given the risk
of his IV line getting contaminated, but we have lots of tips
from other families. So we add Press'n Seal (to try to create a
waterproof barrier around his line) to the shopping list.
By the time Max wakes from his nap though, he has moved on to the tree
swing in front of the house, which sends him flying a good 20 feet
into the air. After dinner, we take a sunset walk around the farm,
where birds hover over the kiwi fields looking for prey.
We stay up long after Max and Kai go to sleep, playing games, laughing
until we cry. I get flack for wearing my Berkeley t-shirt. It's good to
be back on the farm.
Sunday Jun 20, 2010
I'm glad Randy knows what a great
dad he is.
Max isn't very focused on showing his appreciation today. He giggles
with Olivia as they bonk 13-year-old Caleb with balloons this morning,
trying to wake him from a nap. (None of us are getting much sleep --
staying up late, rising on farm time, and waking to interruptions like
Kai calling out BUZZ LIGHTYEAR! WOODY! during his dreams last night.)
Max "helps" Caleb make juice from oranges and grapefruits he has just
picked from the yard. He asks whether we can bring Caleb home with
us. His family is returning to Sacramento.
And I'm glad for friends who can help Randy celebrate. Last year, I
treated him to a gourmet home-cooked Father's Day brunch -- at Ben and Harrison's house.
Today, he gets to drive an ATV around the farm with Max on his lap,
watch quails doing their wobbly run around the farmhouse, and shoot
cans in the back yard (and enjoy the pinging sounds as his pellets hit
their target, and the silence as mine miss theirs).
Tuesday Jun 22, 2010
Our work projects have been a bit stressful lately. So we are
appreciating the little things.
Like Max telling me (and Nanny Kate) that he loves us. "Today."
Like Max sitting next to Kai on the steps, while Kate checks Kai's
temperature. The boys seem to have colds, and Kai has indicated that
his ear hurts. Max sweetly reassures him, "It's okay, Kai." His
temperature is slightly elevated.
Like seeing a baby turkey with its mom on our drive home from a quick
stop at the park tonight.
Like listening to Kai giggle maniacally afterward, at his first taste
of a donut. A vegan donut, so Max gets to taste too.
Wednesday Jun 23, 2010
Just last night, I was thinking how lucky we have been to stay out of
the hospital this year.
As I walked to the park to meet the guys, I thought about the letter I
might write to the family whose house we're renting, to say what this
place has meant to us. The place where Kai took his first steps, naked and giddy.
Where I weaned him. Where
Max has had his healthiest year yet. Not a single hospital admission
-- just the one false alarm
when Max and Randy were sent back home.
Kai's ear seemed to stop bothering him. But Max's temperature went up
to 101.8 last night -- over the threshold for taking him to the ER
(given the risk of an infection from his central IV line), getting him
started on antibiotics, and guaranteeing at least a 2-day hospital
stay while waiting for 48 hours of the blood cultures testing
I don't think anything can counter the dread that comes on with the
thought of a sudden hospital admission. It felt horrible back when
regular hospital stays seemed inevitable. It seems just as bad when
we have gone 20 months without one.
So it's hard to know if we are being rational in deciding not to take
Max to the hospital. But Randy persuades me. Max clearly has caught
some kind of virus -- runny nose, vomiting. When Randy took him to
the ER here under the same circumstances, they were sent home to wait
it out. So we wait.
This morning, Max's fever has broken. He is happy. I am thrilled.
And hoping I can still send that letter when we move back to Boulder
Friday Jun 25, 2010
Randy appreciates a good
He doesn't see Kai fall in Tilden Park this afternoon. Kai doesn't
seem hurt, but he won't stop crying. WOCKS, WOCKS! I point to the
flat rocks in the trail where he fell, thinking he wants me to
acknowledge what hurt him. He keeps wailing, WOCKS, WOCKS! Then I
remember: Kai had been collecting stones to throw in the creek. He
dropped them when he fell. I gather his stones, and return them to
his hands. He calms.
Randy didn't see me fall either. He is biking the mile back to the
trailhead, to get the brake pad for my bike. I discovered that it was
missing, rendering the brake useless, while descending down a steep
rocky slope. Luckily, I was walking my bike. No fall.
After Randy repairs my bike, we ride the Gorge Trail to Jewel Lake,
where we appear to hallucinate a turtle. Every time we call the boys
to come see it, the turtle dives under water. Probably a wise move,
since the boys are always running back from their search for WOCKS.
On one of his final runs, Max trips and goes flying. He doesn't calm
after Randy checks his impact points and declares that he is okay.
Then Randy starts raving about what a good fall it was. Max flew
through the air, then rolled across the ground, just like he should to
disperse the impact of the blow. Max calms, listening to Randy
describe his Hollywood fall.
Saturday Jun 26, 2010
"I want you to go first, Mommy." This is what Max says at the sight
of kite-surfers in the Bay this afternoon.
Today was supposed to be a hang-around-the-house day. But Max's
omeprazole needed to be
picked up in Oakland. So we went for nearby
sandwiches afterward, then continued south to the island of Alameda. To the
We throw rocks into the water and watch a pelican dive for fish.
After Max runs laps at a playground and joins two older girls to send
playground chips down a winding slide, the boys are quickly asleep in
the bike carrier, and we go for a longer ride.
We don't kite-surf. But I love that when Max saw this exciting new
thing, he assumed we would be trying it.
We pass back through Chinatown in Oakland for dinner on our way home.
The staff coo over Max and Kai. Kai's face is covered with sauce from
the hand-pulled noodles, and he guzzles the soy milk they offer. Max
serves all of us dumplings. But not himself. The waitress asks him
if he doesn't like them, and keeps trying to give him more water.
After we get home and hook Max up, he insists he is hungry. Now he
happily munches hand-pulled noodles. A little bit comes back up, but
most of this exciting new food stays down.
Maybe we'll try kite-surfing next time.
Sunday Jun 27, 2010
Maybe we shouldn't have avoided the Gay Pride Parade -- given how Max
wants to replace me.
Our plan today was to go into San Francisco. We are trying to take
advantage of the things we know we'll miss when we return home -- a
bike ride along the marina, a stop at the Exploratorium, playing in Golden
Gate Park. But then Randy learns from Charlie and Leo's moms that
today is the Gay Pride Parade. The city will be a madhouse - another
Amsterdam. They're avoiding
So we head north to Point Reyes National Seashore instead, to ride
bikes along a narrow, sandy trail, out to a calm inlet. Randy and the
boys carry buckets of water to create their own little pool in the
When Randy told Max why the city would be too crowded today, he
explained that two mommies, like Charlie and Leo's, means being gay.
Just yesterday, Max told me that he wanted one of them (Angie) to be his mom. Two
daddies is also gay, Randy adds. Max thinks for a split second before
declaring, "I want two Daddies!"
Tuesday Jun 29, 2010
We go to an undisclosed location this afternoon. And I think about
We have learned, on this second try at surfing, that you're not
supposed to broadcast your surf spot. The roads to get to ours are
intentionally unmarked -- the signs keep being taken down to protect
the water from crowds.
But I haven't learned enough (though I was taught) about protecting my
head from my board. I get whacked as mine comes crashing down with a
wave. I head in to shore to take a break. Randy and Rich watch me in front of them.
I am almost on the beach. Moments later, they notice someone far out
in the ocean behind them.
I haven't learned enough about rip currents either.
I paddle and paddle, trying to get back to shore. I am being pulled
further out to sea. Rich paddles out to rescue me. He gets us both
out of the rip
current that swept me out. He powers us along, parallel to the
shore. He pushes me ahead, and paddles and paddles, then pushes me
ahead, and paddles and paddles. My paddling doesn't seem to make a
Every time I catch my breath, I ask Rich if we are going to be okay.
I only believe him once we are out of the water.
True to form, Randy kept on surfing. He knew we would be fine.
And Max and Kai played on the beach with Nanny Kate, unaware. Their
experience this time around was as much better as mine was worse.
We gather together. I never knew tortilla chips and a little red wine
could taste so good. While we feast, Kai happily runs up and down a
sand dune, and Max stomps on Randy's sand castle attempts.
We are fine. But I think I'll hold off on kite-surfing.
Wednesday Jun 30, 2010
Kai wants me to keep surfing. I'll watch him for now.
The last two mornings, while I have been doing Max's cares, Kai has
been surfing in his crib. He calls out, I'M SOOFING! Or, A BIG WAVE!
Then he gets down on his belly, waits, jumps up, puts out his arms,
and rides it.
He does it again this morning.
On our play pad this evening, where Kai has watched Randy and me doing
our land practices, he directs me, CATCH A WAVE! I lie on my belly.
Kai sits on top of me. Normally, I rock him gently off, then jump up
quickly -- to get up before Kai climbs on me again, to practice the
quick motion needed to get up on the board.
I'm too stiff today. So Kai lies down next to me, then jumps up and
catches the wave himself. He lies back down. We relax on our boards,
Thursday Jul 1, 2010
We take Max to see his second movie in a theater. (The first one was
Up, over a year ago, where Max took a couple breaks to walk around
outside with Daddy.) We go to the wrong theater. The right one is
just a block away. We would have realized sooner had someone been
waiting outside the theater like Max does, running in circles and
yelling at the top of his lungs, TOY STORY FREE!!!
The intensity of the movie proves to be a bit much. Max watches the
last 20 minutes from Randy's lap, while I sniffle next to them.
Friday Jul 2, 2010
Randy doesn't appreciate all
The single-track we rode out to the inlet at Point Reyes was rutted, making
it tricky to maneuver a bike through, let alone a bike attached to the
trailer carrying Max and Kai. On our return, Randy fell over into the
shrubs. He thought he was fine.
I ventured into the Point Reyes shrubs once during college, while
hiking with housemates Dave and
Eric. Dave and I got ahead of the rest of the group, and had the
brilliant idea of crouching in the shrubs to hide. We itched for
weeks afterward. We had crouched in poison oak.
And that, Randy has discovered, is what he fell into.
Saturday Jul 3, 2010
That's how we thought we'd react today. It's not the reaction we
thought we'd inspire.
We meet my faculty collaborator and her husband at the Berkeley
Botanical Garden. We're here to see the "corpse flower," the first
bloom for a 15-year-old Sumatran plant here. We have heard that the
flower smells like rotting meat and attracts flies to pollinate it.
It is supposed to be ugly too -- "liver-colored."
The boys gaze upon it briefly, then are ready to move on. Not because
the flower stinks -- it has apparently been pollinated since it first
opened 4 days ago, and has lost its odor. Not because it is ugly --
it is a magnificent, 4-foot tall display of burgundy, chartreuse, and
orange. The boys move on to what makes them most excited to come here
-- finding waterfalls and streams to throw rocks into.
Silvia brushes past Randy on her way to cross a stream. She then
focuses on trying to scrub her pants clean. Randy thought his legs
were surviving their poison-oak encounter, but today they are a bit
oozey. As Kai leads me up a steep pathway, my big toe catches on his
shoe. The toenail, which turned black after our snowboarding trip to
Tahoe, rips off.
Thankfully, the rest of the day -- the boys refuse to nap at home, so
we drive to the southeastern edge of San Francisco to Candlestick
Point State Recreation Area, then feast on burritos in the Mission
District -- isn't gross at all.
Sunday Jul 4, 2010
He loves her, but she loves him, and he loves somebody else...
Max can't get enough of Lia. We have
driven down to her family's
house in Sunnyvale, planning to caravan on to Santa Cruz for the 4th
of July. Max watches Lia walk on her hands, do cartwheels, throw a
tennis ball in the air and hit it with her racket, hit softball
pitches from her dad with her bat, and jump rope on one
foot. Max suggests that Lia can drive our car to Santa Cruz. She can
do anything. Max wants her to hug him and hold his hand.
Lia can't get enough of Kai. She follows him around her house, saying
she wants to lift him. When she catches him, she wraps her arms
around his chest, picks him up off the ground, and holds him or walks
around with him until he cries.
Kai clings to me.
The lyrics to that song go on to say, "You just can't win." But
things resolve just fine.
The traffic into Santa Cruz looks terrible, so we go to Big Basin
Redwoods State Park instead. Max turns to following Derek around.
Kai collects rocks to throw into the stream. All four kids are happy
exploring inside the base of a giant redwood together.
Our plan is to get home and get the kids tucked in before the
fireworks. But the traffic, and beautiful park, and Max's cares push
things late. So as we drive all the way up and over the San Francisco
Bay to get home, we get treated to one fireworks show after another.
Max and Kai race to spot the next bursts of light ahead -- the blues,
the reds, and the pinks.
Monday Jul 5, 2010
I DID IT!
This is what Cole said
yesterday, each time he stomped on a plastic compressor that launched
a soft rocket across his family room. (We stopped at his house on our
way to Sunnyvale, to pick up one
of Kai's sandals, left behind this time on the kiwi farm.)
Cole sounded just like Kai.
As parents, we think no one compares to our kids. But on the farm, I
would hear Cole talking and think it was Kai, and Cole's parents
confused Kai for Cole. None of us have experienced this with other
The only difference is that Kai, who is 3 months younger, notes his
achievements by saying, "YOU DID IT!" (He also says DO YOU!
to insist on doing things by himself, like brushing his teeth.)
He must have heard us pointing that out yesterday. Today, he draws a
colorful set of circles. He jumps 180 times on the trampoline. He
eats dinner. After each accomplishment, he sounds even more like
Cole, as he announces: I DID IT!
Tuesday Jul 6, 2010
Our second trip to the ER
here isn't so bad, all things considered. It is in the middle of the
night again. But Max and Kai get to sleep through it. Randy's poison-oak leg is aching, his
lymph nodes are swollen, and he has a fever of 101.5. He starts on
antibiotics in case his leg has become infected, and is home by 3:00
Wednesday Jul 7, 2010
Giving away our stuff may be harder than I thought.
Our plan is still to donate everything that won't fit into a moving
trailer when we move back to Boulder next month. We have been trying
to prepare the boys, talking about how their toys will make some other
kids here really happy. We figure we have weeks to go.
Then I hear about how busy Bo's mom is, pumping. Bo's baby
sister arrived last month. I offer to send my extra milk storage
Then I realize I can send my nursing pillow and shawl, too. They are
hard to say good-bye to, after seeing us through our months in the
hospital and in Boston and many moments of bliss. They mark the end
of a treasured era. But this is a perfect way to say good-bye to
And I realize I can send my pump. Max trails after me as I gather and
clean everything. He asks what I am doing. He sighs, and says the
pump is sad. The pump doesn't want to go. I explain that it is going
to a good home, where it will be appreciated instead of sitting
unused. He asks when we will say good-bye to it. He sighs again. He
asks if Bo's mom is nice.
She is very nice. And the pump has meant nothing to Max. So we'll
see how it goes giving his toys to strangers.
Thursday Jul 8, 2010
Randy has been thinking that it's cute, how Max has been sleeping on
the floor the last couple nights. He lies next to Kai's crib, and
seems to just want to be closer to him.
Then Max tells Nanny Kate this morning that he has a song to sing:
One-eyed spooks wake me up in the middle of the night,
and that's when I want to sleep next to my brother.
Their eye is little green circle,
and I see it as I wake up in the middle of the night.
One-eyed spook's green eye,
and it's very spooky.
He explains that the song is called One-eyed Spooks, and it spooks him
out a little bit.
Randy and I are baffled. (Randy has re-joined the waking world, since
his fever broke early yesterday.) We wonder if the green eye is a
light on one of Max's pumps. We wonder if he should be reading less
spooky books. He and Kai love going to the library with Kate. Max's
favorite stories are the spooky ones -- The Berenstain Bears and the
Spooky Old Tree, and My Mama Says There Aren't Any Zombies, Ghosts,
Vampires, Demons, Monsters, Fiends, Goblins, or Things.
At tuck-in, Max talks about the one-eyed spook again. Randy turns off
the light. He immediately sees the little green eye of the one
eyed-spook. He explains to Max that it is a light on his baby
monitor, reflected in the mirror over his sink. Max crawls right into
bed, and sleeps soundly through the night.
Friday Jul 9, 2010
We wash Kai's feet on special occasions.
Tonight they are covered in mud, after his stomping in a puddle while
romping around the Palace of Fine
Arts with Max. Our planned destination was the Conservatory of
Flowers in Golden Gate Park, but the beautiful Palace grounds (and
lagoon to throw rocks into) proved too inviting. We wandered around
Ghiradelli Square afterward.
Back at home, Kai exclaims "Sasha!" as I
wash his feet. It takes me a while to catch on, but he eventually
confirms that he last had his feet washed with Sasha, after exploring DC barefoot.
Saturday Jul 10, 2010
Max tells a medical director at Stanford Children's Hospital that he
can't use the potty, because he is sick.
She follows up with me, because she doesn't think that Max should view
his condition as limiting him in this way.
We are hosting our second Berkeley
dinner party, for our PhD advisor and his wife, the medical director. It goes more
smoothly than the first, starting with appetizers at the
no-moving-big-red-train park while the boys play, followed by a bit of
final cooking at the house, hook-up, and extended tuck-in, and relaxed
catching-up for the rest of the evening.
I eventually figure out what Max was talking about. He doesn't think of himself as sick. His condition is just his
condition. But he is back in diapers for now, with stuff coming out
his distal intestine as he fights off a bug. He was talking about his
Sunday Jul 11, 2010
When we get home tonight, Max says he wants Kai to apologize to him
again. I want to tell him that one apology should be enough, but my
heart isn't in it.
Max has been vomiting. Little spit-ups yesterday, an explosion today.
I spent this morning titrating his formula, while the boys and I
explored a redwood grove in the botanical garden. We came home as
Randy woke. Max had his enormous vomit not long after Randy switched
to taking care of him.
I ask Randy whether he has been cautious in what he has given Max to
drink. He says he gave only two sips of formula. I ask how big they
were. Small, he says -- 10-15 cc. What about how much water he has
given?: An unlimited amount.
I am incensed. After my efforts to ensure Max can keep his food down,
Randy has brought it all back up -- an unpleasant experience for all
of us, and one that risks dehydration and robbing Max of calories.
Randy is incensed that I feel the need to point out what he has done.
We argue as we head out for a bike ride in Tilden Park, as we head
back home because Randy has forgotten his antibiotics, as we drive down to
town since Max has fallen asleep in the car and so Randy can fix his
biking shoe, and as we drive north along the park since Kai has fallen
Our bike ride to Jewel Lake
helps to ease the tension. We walk a beautiful wooded path along the
lake, thinking it will be a quick loop. At some point, Randy wonders
whether we should turn back, whether this will be another Three-Bears experience. It is
-- except that the loop turns out to be one mile instead of 20, and
the kids are hiking instead of riding. No problem. They only
complain when we try to put them back in the carrier at the end of the
loop, and when we interrupt their racing back at the car to go
When we get there, Kai throws Max's favorite bobo monkey on the
ground. This is what Max demands apologies for. Kai won't give him a
second one. But it's not a bad idea. I feel much better after
offering mine to Randy, and he offers his to me.
Monday Jul 12, 2010
As I do Max's morning cares, he asks what day it is. Then he
declares that Monday is missing day.
I thought this sabbatical had prepared me better for this.
In the beginning, every time someone asked how the sabbatical was
going, I would say that I was struggling to find the right balance
between work responsibilities in Boulder (via email and skype) and
Berkeley. At some point, I realized I would never find that balance.
It was liberating, like with Max's cares, to accept that we can only do the
best we can, even though what we do may not always turn out to be for
This sabbatical has also helped me to appreciate that I'll never find
a perfect balance between working and being a mom. Accepting this is
But I'm still unprepared for Max's explanation for why today is
missing day. It's the day he misses Mommy and Daddy because we start
Even worse, I need to tell him that Daddy is leaving this afternoon
for 2 days in DC. I know how important his meeting is there, but I
still feel ill-equipped to answer Max's repeated questioning about why
Daddy needs to go. It's missing day for all of us.
Wednesday Jul 14, 2010
Max is experiencing just a bit of what Randy and I went through after
he was born. Kai has been spared.
One of the toughest things for us in Max's first weeks was waking.
Each time, the realization of what had happened would come flooding
This has been Randy's hardest trip on Max by far. He has had brief
moments when he seemed to forget, like when I took the boys yesterday to see the Scream Machine, a roller coaster exhibit at the
Lawrence Hall of Science. But every time Max wakes, he remembers
immediately. He woke around midnight Monday and started crying. He
does the same thing at 5 AM this morning. And again, after his nap.
He can't be consoled. DADDY DADDY DADDY.
Kai looks around, confused. He has shown no signs of noticing that
Randy has left town. He listens to Max's wailing, and asks, over and
over, "What happened?"
Thursday Jul 15, 2010
After 71.5 hours apart, Randy enters the house to reunite with Max and
Kai. I don't know what to expect. They don't seem to know either.
Kai freezes where he is standing. He stares at Randy, stunned. Max
is sitting on the play mat, with his back to Randy. He also doesn't
Randy walks around in front of Max. Max asks him why he is wearing
shoes in the house.
I know how much we (at least Max and I) have missed Randy. Nanny Kate
confirms that Max was just asking for Daddy.
Randy breaks out his signature technique. He lies down on the mat.
The boys rush to climb on and wrestle him, welcoming Daddy
home with giggles and hugs.
Friday Jul 16, 2010
We have been asking Kai the wrong question.
Whenever I ask what he wants to do today, he gives the same answer:
Fwow wocks in water. I ask, are you sure? Anything else you might
want to do? He always sticks with his answer.
But today, I say, okay, throwing rocks in water is your first choice.
What is your second choice? After he provides that, I ask for his
He branches out for the first time. His options: 1) Fwow wocks in
water. 2) Fwow leaves in water. 3) Fwow money in water.
This gives us a slightly better chance of satisfying at least one
We drive down to Santa Cruz to say goodbye to Derek and Lia. They are flying to visit their grandparents next
week, and will return to the Bay Area after we have left for
Kai makes the most of this final chance. After Lia insists on lifting
him in the air, he holds her hand as they head down the boardwalk.
Max and Lia drag Derek onto the roller coaster. Kai is not thrilled
about the couple of rides he can go on either. But as he sits with us
next to a fake stream, waiting for our cave-train ride to leave the
station, he does get to throw a penny in the water.
Saturday Jul 17, 2010
Max kicks at me while I do his morning cares. I think he continues to
be upset about Randy's trip, even after his return. As I wonder how I
can help Max make the connection, so he can process the issue and move
on, he blurts out, "Daddy was gone for too long."
We try to make it up to him with a trip to the Albany Bulb this
I have never been here. And when Randy told me 5 months ago that he
had taken the boys to a homeless encampment filled with
post-apocalyptic art, I thought it sounded like a bad idea.
But now I see why this landfill is so highly rated. It is an
outcropping into the San Francisco Bay north of Berkeley, with
gorgeous views, rugged terrain, and plenty of dogs out for walks. And
signs of a shanty town if you look hard enough, and larger-than-life
sculptures made from scrap metal, driftwood, and concrete. An
incongruous sight to behold.
The boys chant YAY YAY YAY as they approach a towering sculpture of a
woman with her arms outstretched to the sky. They could be cheering
the hill they are flying down toward the water, riding in the bike
carrier behind Daddy. They giggle together as Randy zooms them up and
down the mini roller-coaster trails in the inner part of the Bulb.
He may have been gone too long, but Daddy is definitely back.
Sunday Jul 18, 2010
We have been telling Max that goodbye doesn't have to mean goodbye
forever. Today, he gets to see for himself.
He seems to feel as sad as us about leaving Berkeley. (He also seems
to feel as happy as us about returning to Boulder.) So, I have been
reassuring him that it's only goodbye for now -- that I cried when Eric and I said goodbye almost
20 years ago, but we've had so much fun together this year, and Randy
and I have been reconnecting with friends from as far back as grade
We head to Golden Gate Park, and the Conservatory of Flowers -- the
oldest public conservatory in the western hemisphere. After a quick
tour of the highland-tropics and potted-plant rooms, the boys camp out
to watch the fish in the lowland tropics. Randy and I relax on the
beautiful grounds afterwards, while Kai snacks and Max runs.
We bike to Stow Lake, where
we meet Derek and Lia's family. We thought Santa Cruz was our last chance
to say goodbye, because of my work pressures this weekend. But my
Berkeley network connection has been down, preventing my planned data
analysis. So Lia gets to show Max and Kai the tooth she lost after we
saw her Friday -- her first. All four kids get to throw rocks in the
water. Derek draws a Yield sign for Kai at our Thai dinner afterward.
(For some reason, Kai talks about Yield signs almost as much as he
talks about fwowing wocks.)
Hugging goodbye at the end of the night is tough. I'm glad that what
we've been telling Max is true.
Tuesday Jul 20, 2010
As I'm getting Kai ready for bed, I slam my finger in his dresser
drawer. I yelp. Seeing the concerned look on his face, I try to
reassure him, "I'm okay." Kai cradles his finger and hunches over it.
He reassures me, "I'm okay, too."
Wednesday Jul 21, 2010
It's Christmas in July.
We are trying to avoid the mistakes of our move here. This means
preparing to go even when it feels way too early to Randy. Nanny Kate
and I have been boxing up the kids' toys for donation. (They will go
to a good home here.) It
means planning to spend the first two nights of our drive in one
place, not too far from here. (Our late departure out of Boulder last
August meant a delayed start to the 12-hour TPN hookup that night,
which then threw all the subsequent days off. One extra day might
help us to recover if (when) we're running 5 hours late again.)
And it means trying to think of all the things we need to do before we
go -- like check behind the bookshelf where mail occasionally disappears
as it descends from the mail slot. That's where Randy finds Christmas cards from Ellie, Austin and Chase today.
Thursday Jul 22, 2010
I didn't expect to see our
kids stunned, frozen in their
tracks, again any time soon. But that's what they are at their first
They have seen live musicians here and there -- including Loverboy
for the weekend" as we rode the Sky Glider over
the Santa Cruz boardwalk at
sunset. But this is the first concert we have come specifically to see --
bluegrass and soul groups performing in the botanical garden redwood
Max and Kai stare at the performers for a couple of minutes.
That's enough for Max. He runs off to explore the grove, and refuses
to return to the amphitheater for the rest of the evening. Kai runs
off to throw rocks over a bridge, but then returns to the music. When
he and I check on Max back near the car, Randy asks the boys if they
want to go back to the concert. Kai immediately races back to it.
His excited summary of the evening: Moosic, moosic! Mommy clap, I
clap! He doesn't mention our dancing, perhaps not recognizing it
Friday Jul 23, 2010
We try to keep Max out of our fights. But he turns out to make a good
Randy prepares to draw Max's labs this morning. It's stressful under
any circumstances, affixing the "vacutainer" to Max's IV line to draw
out his blood into vials. We do this sterile procedure too
infrequently (every couple months) for it to feel routine. And we
somehow skipped the last draw, so we are anxious to see how his
I pop out to put a bill payment in the mailbox, and some toys into
their moving bins.
Randy bellows for me. He has started Max's procedure. Kai is crying,
covered in food, ready to throw Randy's ceramic bowl of cereal onto
Randy asks where I've been. I ask what in the world he was thinking.
We debate which was more ridiculous -- me leaving as Randy finished
his extensive prep for this critical procedure (I didn't realize he
was finishing. He didn't mention it when I said I was popping out.),
or him starting the procedure with Kai in such a precarious situation
(He didn't realize I would take so long, or that Kai might not stay
happy sitting in his high chair.) And so on.
Randy is ready to hand me the first vial of blood to rock back and
forth and label. I am still trying to get Kai cleaned up and
Max lies still in Randy's arms. He asks, "What, Daddy?" Randy gives
an unfavorable assessment of me.
I'm not at my best, but I don't want Max to think this of me.
He declares, "Daddy, you should wait until Mommy is ready. You are
being kind of bossy to her."
His comment disarms us completely. We quickly transition to focusing
on the procedure, and on sandwich hugs afterward.
Max makes a good mediator too. But we'll try not to call on those
Saturday Jul 24, 2010
I never knew bowling could be so suspenseful.
As we leave the playground near Zeum, where Kai has insisted on
flyng down the 2-story slide over and over again, Max spots a bowling
alley. He pleads to go in. Randy suggests that they first show me a
waterfall fountain they discovered nearby on an earlier trip. Max
falls to the ground in protest.
The waterfall isn't running. Kai throws a coin into the quiet
Max convinces Randy to go in the bowling alley, get them both suited
up in bowling shoes, and set up to bowl a full set of 10 frames.
Kai shows no interest. I coax him inside just to see what Max and
Randy are doing. Max bowls a couple frames, then is content just
monitoring the balls magically returning after each turn.
Kai bowls the rest of Max's frames. Randy sets Kai's ball near the
bowling line, and Kai pushes it. He watches to see what will happen.
He watches, and watches. His ball, even with an extra push from Randy
at the end, always seems to be on the verge of slowing to a stop. It
drifts toward a bumper (which comes up to block the gutter for the
kids' turn), then drifts back toward the track. Its movement is so
slow that it is hard to predict where it will go -- there is no sense
of a trajectory. Somehow his ball eventually reaches the pins,
improbably managing enough momentum to knock some down. Kai tracks
the whole journey, then turns around to get his returned ball. He
cries a little whenever he has to let Randy take a turn.
The score ends up being pretty close, thanks to the bumpers, and to
the game timing out before Randy's final frame. It was worth the
Sunday Jul 25, 2010
This afternoon, Max tells Randy, "When Mommy asks what my favorite
part of today was, I'm going to say, 'those big guys diving.'''
We have come to Alamo, to meet friends and experience summer. Alamo
is only half an hour east of Berkeley. But that is far enough to
escape the Berkeley cold. (The quote falsely attributed to
Mark Twain, "The coldest winter I ever spent was a summer in San
Francisco," applies just as well to the Berkeley hills. The warmest
months here are September and October, when the valleys to the east
cool and pull less wind and fog through the Golden Gate Bridge. We
have been dressing in layers under Polartec, and often don't shed
Max watches Eric and his
brother Mark try to outdo one another jumping off the diving board
into the pool -- starting from handstands or running leaps, twisting
and flipping in the air, and entering the water with body slaps that
make us wince.
Kai cries and leaves the scene after the first cannonball. Max
squeals in delight.
Olivia sidles up to Kai. She
watches him closely, repeats whatever he says, giggles, and asks me
why he said that. Kai averts his eyes -- the shy reaction that seems
to make 5-year-old girls all the more interested.
Max bonds with Olivia's 4-year-old cousin, Ella. She has a g-tube
too, for a kidney condition. They show each other their stuff, then
run off to play. They fill buckets of water from the pool and pour
them out. They follow each other around the yard. Max sits next to
Ella and announces, "I want to be with you." During a bathroom break,
Ella tells her mom that she wants to go back to play with that nice
I asked Max what his favorite dive was, soon after the dives. That's
when Randy told us about Max's plans for his conversation with me. I
think he picked his favorite part of the day a little early.
Monday Jul 26, 2010
Maybe Randy should give away the kids' toys.
I've made this process easy on Max and Kai -- at least since realizing
they always say NO when asked if they are ready to part with a toy,
even if they don't notice when the toy is missing.
So I bring a box of toys that they haven't missed to a friend this
afternoon. I promise Fei
that I won't insist on telling her a story about each and every toy --
about what surgery the toy saw us through, about how it was given or
handed down to us, about how Max shared it with Kai. But I can't help
myself when she pulls out Juniper
Giraffe. Fei humors me.
I thank her for easing our parting with babyhood. Her 9-month-old
will love these toys. And I'll try to follow Max and Kai's lead in
not noticing what's missing.
Wednesday Jul 28, 2010
Kai is a mad flirt.
He has been carrying around 5 foam letters from his alphabet floor
tiles. He sets them on his high chair tray, holds them in his car
seat, and brings them into his crib. He gets a little panicky if one
is missing, demanding "Where's my R?", or exclaiming "My I, my I!" He
can get angry.
Actually, he's usually content when he has all 5 letters. So I guess
that makes him a happy f-l-i-r-t, and a mad lirt, firt, flrt, and
Thursday Jul 29, 2010
"Can you reach it?"
Kai asks us this question many times a day -- whenever he drops
something (like one of his letters) from his high chair, car seat, or
crib. He has just expanded his repertoire to ask next, "Can you wash
Flattery gets him everywhere. He tempers his demands with another
recent routine, gazing up and declaring, "I like your eyes so much. I
like your mouf so much. I like your hair so much. I like your nosey
Friday Jul 30, 2010
At 200 feet up, the most interesting sight is surprisingly easy to
We have brought the kids to the observation platform of the Berkeley
campanile, the campus clock tower that is visible from points all
around the northern part of the bay. (The trip up involves an
elevator ride followed by 38 stairs, which Max and Kai count out,
shouting as they climb.) We can see our neighborhood to the north,
the "soap hotel" to the south (the enormous white mass of
the Claremont, which
Randy had all but convinced Max was made of soap), and the span of the
bay to the west.
But the most interesting sight is right in front of us: a baby girl on
a feeding pump, in her dad's arms. This is the first time we have
bumped into someone on a pump outside of the hospital. I try to catch
the dad's eye, but then realize that I may seem like I'm staring,
leading him to avoid eye contact. I know that feeling.
So I approach him to ask if she has a g-tube. (It's a GJ, which
delivers fluid into the stomach via the g-part, and into the intestine
via the j-part.) I tell him that Max has a g-tube. The baby's mom
joins our conversation. Randy has just given Max a sip of formula.
They ooh and ahh and congratulate us on making it to bollus feeds, and
marvel at how healthy Max looks.
I want to sit and talk with them. Unfortunately, the most interesting
sight to the boys, after a bit of fascination with the 61 enormous
bells hanging above us, is the stairwell going back down. I have to
cut off the conversation to chase after them. But maybe this is a
good sight for that family.
Saturday Jul 31, 2010
Chasing is okay, but catching is not.
That's what Randy declares after a teary fight today.
We are watching octopus arms undulating in the sky, at the annual
Berkeley kite festival. The sky above the marina is a sea of color --
one enormous octopus after another (apparently a world-record
collection -- Kai's favorite is a purple octopus pair), dragons, a
scuba diver (my favorite), Nemo. We catch the final battle in a fight
that began with 20 kites in a field, and ends with the last two kites
becoming entwined, swirling and diving, with one kite falling to the
ground while the final survivor floats higher and higher above the
wreckage. Some of the kites here serve as entertainment centers. A
huge parafoil kite flies a couple hundred feet above the truck it is
affixed to, with a cylindrical kite (Randy's favorite) spinning around
the line below. Small umbrella-shaped kites (Max's favorite) get sent
racing up the line to the spinning kite, then collapse and come
rushing back down. Another kite flies up the line, and when it hits
the spinning kite, a parachute detaches and deploys on its way toward
Katie is trying to fly her
kite. Max jumps up and tries to catch it. They giggle. But then Max
catches the tail. Katie gets mad. Max doesn't understand why she
doesn't want him to catch her kite. This makes Katie very sad. The
fun is over.
I feel the same way about us chasing down some of the last things we
want to do before leaving Berkeley.
We stopped at the soap hotel
after dropping off Max's labs last week. I think Randy had Max
convinced that the hotel was at risk of melting after each rain. They
would always check to see whether it was still there when we drove
past. When we finally stopped, I wished we hadn't -- it became just a
fancy hotel, as opposed to something mythical.
And on our way home yesterday, we finally stopped at a cute market in
Rockridge that we have been curious about. I bought two bins of
blackberries -- one turned out to be moldy, the other, flavorless.
Luckily, even when catching is not okay, the kids seem willing to put
aside their differences. Max and Katie end the outing watching the
extended reigning in and compressing of Nemo together.
Sunday Aug 1, 2010
Usually, I'm the only skeptical one.
On Friday, Randy and I went to view the U-haul trailer we plan to move
with, to see if I should stop worrying that we can't possibly fit
everything, or if Randy should stop being so confident that we can. I
seemed to be right when we looked at the trailer from the outside, but
(thankfully) Randy seemed to be right when we looked at the trailer
from the inside.
So maybe we should hesitate more when both of us are skeptical, like
this afternoon as we head to the San Francisco Museum of Modern Art.
The boys are giddy. They have not napped. Their track record with
art involves wanting to interact with it -- which worked with a
Jean Tinguely sculpture in
Amsterdam (Max still talks about pushing the big red button on the
floor that made the sculpture come to life). It didn't work in the National Gallery Sculpture
Garden, where Max spent his time scheming about how to race under
the rope barriers toward the sculptures before we could catch him.
Kai falls asleep just before we park. When he wakes 1.5 hours later,
I bring him in and find that the museum is free -- only 30 minutes
left. Max gives us the whirlwind tour -- through Calder mobiles,
Warhol lithographs, and a gold bead curtain hanging in the entrance to
an exhibit. Max apparently spent much of Kai's nap running in and out
The boys offer their commentary. Max deems a Louise Bourgeois spider
SCARY (her spider in the National Gallery Sculpture Garden was one of
the few sculptures he didn't try to approach). Kai gazes at four
large blocks of solid color on the wall, eagerly announcing RED!
BLUE! BLACK! GREEN! Some of their judgments are wordless, like when
Max rushes toward a large Calder sculpture on the rooftop garden, and
runs happily under its arches. Kai declares, THIS IS MY FAVORITE!
about a new piece of work with each room we enter.
Seeing this art through their eyes feels perfect. Their lack of
skepticism makes the MOMA an exhilarating experience for us all.
Monday Aug 2, 2010
I'll have to remember this when we start asking Max what he did in
preschool. (The plan is for him to start attending later this month,
once we are back in Boulder.)
When Nanny Kate arrives this morning, she asks Max what he did this
weekend. It's hard to predict which event will spring to his mind:
triple haircuts at the barber shop Friday (Kai's first professional
cut), campanile, Tilden Park carousel (where I took the boys Saturday
morning), kite festival, MOMA, peace pagoda (where the boys
pleaded to stop on our drive to the MOMA and again during our walk in
Japantown -- we finally stopped there after dinner, then struggled to
convince the boys to stop running around the pagoda so we could head
Max's summary of what he did this weekend?: "Nothing."
Tuesday Aug 3, 2010
Max and Kai are friends in reality too.
But their developing pretend relationship is at least as adorable.
The first indication was that Max assigned Kai to be Gnocchi in
Curious George -- a cute kitten instead of
a peripheral or evil
Then Kai started insisting on who he would be. I'M WEX! (the dinosaur
in Toy Story) or I'M PERCY! (the train friend of Thomas). He insists
on being these characters even if Max has crafted a different theme,
like this morning, when Max and I are Mudge and Henry from the
children's book series.
Max tells Kai, "Rex doesn't count." Kai insists. He doesn't
understand that "not counting" means not part of the theme. Kai tries
to echo Max's statement, saying: "Wex doesn't count vewy well."
He sticks with Wex. And he insists that we watch him as I do Max's
cares. He stands up, falls to the crib floor, and rolls around -- his
I ask Mudge, "Wow, have you ever seen a dinosaur surfing?" He
replies, "I guess so, because I just did."
Wednesday Aug 4, 2010
Before our big move, we are appreciating routines. And Max is helping
others to break out of theirs.
We took him in for his final checkup with his Oakland GI doc
yesterday. His labs look good. His TPN formulation will stay the
same, as it has across this very stable year.
Max wanted to make a final stop at Barney's (a gourmet burger place)
after his checkup. Randy and I tried to earn it with a bike ride to
the Codornices playground at
the end of the day (or really, with the bike ride back -- 10 minutes
down, 30 minutes back up).
Max went for the concrete slide, as usual. As he climbed up the steep
steps in the hillside, an older boy was trying to convince a woman to
go down the slide. He pulled her toward the drop-off. She pulled
back, and was trying to walk away. Max squeezed through their tussle,
sat down, and flew down the slide. The older boy said, "Did you see
that? If he can go down, so can you." The woman followed Max's
Friday Aug 6, 2010
On clear days, we can see Alcatraz from our family room. Now we know
what the kids think of it.
We figured today's tour of The Rock would amount to a fun ferry ride
to the island, an interesting building to explore, and grounds to run
around. That seems to be what it is for Kai.
But Max is puzzled. When he sees a tiny prison cell and hears that
this is where someone lived, he says, "But it's just a bathroom." As
he takes in row upon row of cells, he asks, "How did they do
The kids are mellow enough to let Randy and me listen to an audio
tour, describing escape attempts like the one depicted in Clint
Eastwood's "Escape From Alcatraz." (Three men gradually chiseled
their way through the back walls of their cells, concealing their
progress with fake walls, then climbed through an air vent and tried
to escape on a raft made of raincoats -- they are presumed to have
drowned in the frigid bay, but the case is still open.) Former
inmates describe how they could hear the sounds of laughter, and
freedom, coming from San Francisco, and how the saying was: "Break the
rules and you go to prison. Break the prison rules and you go to
The audio tour doesn't address Max's questions.
Saturday Aug 7, 2010
Olivia and Cole's mom
suggests that our kids may come away from our year here with a sense
Kai doesn't demonstrate much of one at our going-away party at the
no-moving-big-red-train park this afternoon.
He clings to me for the first
couple hours again. (He did the same thing during our trip to Habitot
this morning, a gift from my
lab group in Boulder. He enjoyed handing groceries from his mini-cart
to Max at the cash register, working the controls of a space shuttle
with his brother, and painting on a wall -- as long as I was within
Of all the people at our party, baby Ariela seems the most
threatening to Kai. I don't think he knows that his toys are being
passed down to her. (And even if he did, he seems ready to move on,
declaring, "I played with that long time ago," when I pulled out a toy
to see if he would part with it.)
Randy wants Kai to feel more comfortable in crowds. I want Kai to
know it's okay to prefer one-on-one.
He finally breaks away from me to sit in Nanny Kate's lap. Later, he
shows Kevin how he can jump
off a tree root, over and over. Kevin provides a more appreciative
audience than Max usually does. (Max likes to throw himself down our
flight of steps to land on the play mat, then encourages Kai to take a
turn. When Kai jumps from the very bottom step, Max offers
assessments like, "Kai, that is not very cool.") Kai breaks from me
another time to sit with Olivia in the train, where she repeats what
he says again. Later, Katie
lifts Kai up to try to help him get enough momentum for the stomp
rocket. (It doesn't work, but Kai doesn't seem to mind the
The stomp rocket is a gift from Olivia and Cole,
who introduced us to theirs on
the 4th of July. It's a big hit, for the gift-givers, for Max and
Katie, Zoe and
Ian, Charlie and
Leo, Ella and Evan, Eva
and Zach, Sadhana -- and for
many of the adults.
Even with all the good-byes, our departure still doesn't feel real.
Randy makes surfing plans
with Rich. I have to break the news that we can't possibly fit them
in during our last week here. Randy and I will be finishing up work
projects, seeing old friends who will be visiting from Princeton, and
And hoping we'll bring the year's sense of adventure home too.
Sunday Aug 8, 2010
A movie about our day would end with us in the parking lot of the
Berkeley hardware store, searching for Max's shoe.
We would be there in the beginning of the movie too, shopping for
In between, we would be seeing the making of Toy Story, Monsters Inc.,
Up, Nemo, Cars, and WALL-E, at the Pixar exhibit at the Oakland Museum
of California. The collection of storyboards, sculptures, and
paintings is designed for older kids and adults, but it does a pretty
good job holding the attention of a 4-year-old who knows many of these
movies by heart, and an almost-2-year-old who has never seen them.
Ironically, this is the one day out of the year when Max is not
wearing his Lightning McQueen shoes. We discovered that one of them
was missing when we arrived. Luckily, we had hand-me-down sneakers
from Derek in the car. Even
luckier, Lightning McQueen was waiting for us when we got back to the
Tuesday Aug 10, 2010
I receive a call from Randy's phone. The caller sounds but too old to
be Kai, but too young to be Max.
(When I describe this puzzle to Max later, he guesses, "Daddy?")
I'm stunned to discover that the caller is Kai. I have known that his
language is exploding, even though I missed last
month's checklist. He likes
to talk about islands, concrete slides, rockets, cubes, fog,
octopuses, and TPN.
At least we know he is talking about those things. At the
party, Kevin marveled, "Wow,
Kai has a lot of words." He added, "I didn't understand any of them,
but I could tell that they were different.
Still, it's shocking to hear Kai without seeing him. I see him and
still see my baby. I hear him and think... not Daddy, but much more
on his way than I realized.
Wednesday Aug 11, 2010
I'm thinking we'll pack up our house Sunday morning, right before we
hit the road to drive back to Boulder.
Nana uses a massage therapy technique where she takes a muscle that is
pulled too tight in one direction, and she pushes it further in that
same direction. It might seem counterintuitive, but this technique
allows the muscle to then return to a better position.
When I have tried to involve Randy in our moving preparations, he has
dismissed each task I list on our to-do as something that "will take 2
seconds." If all the tasks really take 2 seconds, we will be fine
waiting until Saturday to start packing. That seems to be Randy's
Randy is not known for his time-estimation skills.
So I'm proposing we wait until Sunday.
Friday Aug 13, 2010
Today is much better than yesterday. It begins with our car being
That gives you a sense of how bad yesterday was.
Our plan for Thursday was to enjoy one last outing to the city to meet
visiting friends, to explore the Zeum area and Japantown. But we were
too busy washing slip covers for all the couches in the house, after
discovering Wednesday night that the dry cleaner couldn't get them
clean. (Who buys white couches?, Randy keeps wondering aloud.) Then
we learned they are washable.
And I was too busy blowing my nose, and wiping Max's and Kai's. As
usual, I felt like no one could understand my misery, while the boys
were troopers. Max would pause to spit up, then move back to playing.
Kai would cough like he was choking, but as soon as he could suck in
some air, would cheerily reassure, "I'M OTAY, MOMMY!"
Our friends came to the house. While Kai napped, Max taught Maddie and Ella (and their
parents) about trestles and tenders, and they constructed a
spectacular train track modeled after the Bay Bridge.
We hung the slip covers to dry on the balcony, then popped out for
dinner. (Other potential hanging locations are all being used to dry
our clothes, after our dryer stopped working Wednesday. We have half
a dozen loads left to run somehow before moving out.) While Max
napped in the car during dinner, Kai charmed our friends (and vice
versa) enough for Randy to leave him while coming to swap places with
We came home from dinner to discover something about our majestic
redwoods. In all the time we have spent admiring these trees, we have
never noticed that they sport the tiniest of berries. Purple berries.
Purple berries that drop from the trees and splatter white slip
Make that a dozen loads left to run.
Today brings much more of a sense of progress, despite the overnight
theft of our camcorder and a roll of quarters from our car. Randy and
Max drive to Richmond to pick up the trailer. A dryer repair man
comes. By the end of the day, we are as packed up as we were at the
start of the day we left
Boulder. This isn't saying much. But it's enough for Randy to
suggest we might squeeze in our last outing to the city tomorrow.
Saturday Aug 14, 2010
We'll have one year to enjoy Boulder after we return. At least,
that's how I'm hoping we'll treat it.
In our last weeks in Berkeley, we have been trying to find the balance
between enjoying familiar places and checking out new ones. Randy
pointed out that going to new places actually counts as our routine
And catching up with friends, old and new.
That's the mindset of just-one-year that I want to bring home to
Boulder -- to see friends more often, to keep finding adventures with
We don't make it to San Francisco today. I do get to take the boys
for one last ride on the steam train in Tilden Park. Zoe comes over to say good-bye.
Max doesn't understand why she doesn't want to wrestle. Randy drives
the boys around town for final errands. I walk to meet them afterward
at the no-moving-big-red-train park, where we watch the fog roll in
over the bay one last time.
Sunday Aug 15, 2010
The lump in my throat as we drive out of Berkeley isn't about our late
departure. 4:00 is late even by our standards, but it's not a problem
for our short drive to Lake
Yes, we're sad to hear the boys call out good-bye as we drive -- to
things we can see (Bay Bridge, Golden Gate Bridge, Alcatraz, Solano
tunnel, Target) and things we can't see (Peace reedoda,
Japantown, Steam Train, Rocket Ship -- possibly a reference to Habitot from Kai).
But I'm surprised to discover that what feels most sad is saying
good-bye to Max and Kai. We are coming home with different kids.
I ask Kai if he remembers. His transformation is most apparent. Our
packed car reminds us of the drive from Boulder to Berkeley -- how
Neko would sit on Kai, and how they would roam around each new hotel
room together on all fours. Not speaking.
Kai says he remembers. I believe him. He answers not with his usual
YES, but with HEH -- the way baby Kai once said yes, long ago.
Monday Aug 16, 2010
Day 2 of our move brings appreciation of grandparents.
Max asks to go to Ski School. He apparently remembers not his unhappy ski
lesson here during our trip with
baba and jiji last spring, but a toy truck he tried to bring home
from the day care. (Vehicles make a lasting impression. Throughout
the year, he has asked about a toy Jeep we left behind in Boulder.)
We don't make it to look for the truck. And we just miss the closing
of the paddle boat rentals. We miss the rides up the gondola, too.
We miss everything because we are too busy relaxing -- taking today to
recover after the frenzy of packing up the house, and in preparation
for the long drive ahead.
After sleeping in, we walk to the lake, where Kai plays on a
playground, and Max and Randy build a sand castle. Max eats french
fries and potato chips at lunch on the water -- his appetite has
returned as he has recovered from his cold. He falls asleep in his
stroller as we watch a motorboat being towed out of the water, and Kai
quickly follows suit. They wake in time to throw pennies in the
fountain at the ski resort, after the boat rentals and gondola have
closed. Max eats rice and beans for dinner at a taqueria that baba
found on our earlier trip. The boys run through a beach-ball water
sprinkler they see on our walk back to the motel.
We can't believe everything we put Grandma and Grampa through during
our move last year, when they arrived in Boulder to find that we had
barely started packing, then went from one exhausting day of driving
to the next. We wish we had treated them to a day like today.
Tuesday Aug 17, 2010
That is the judgment of the boys today as we drive across Nevada on
Highway 50 (the "Loneliest Road in America"). Luckily, they aren't
talking about the drive.
They have been remarkably good in the car. Kai points out road signs,
a helicopter, the moon. They take in the open landscape (WHOA is
Max's response when he wakes as we climb steeply out of a valley this
afternoon). We work on puzzles -- like why do some of the mountains
have large dark spots on them? (Max eventually gets that they are
shadows from the clouds.) Max tells Buzz Lightyear jokes.
It's only when Randy and I start singing that we get into trouble.
We pick songs related to being on the road: America the Beautiful, Here
in my car..., Born to be Wild, Little Red Corvette, Rockin' Me,
California Girls, Take me home country roads, Hotel California.
The boys sit in rapt attention, hearing these songs for the first time
(with the exception of California Girls, which Kai has been asking us
to sing every day for months).
But then Randy breaks out an old tune. He gets through just a couple
lines of "Wheels on the Bus" before Max cuts him off with his judgment
of BORING! Kai chimes in with REE DUN DANT!
They have learned these terms from a scorpion in "Wild
about Books" -- a character who offers stinging one-word critiques of haikus written by
insects. The boys may not know exactly what the words mean, but they
know that they always elicit giggles, like they do from all four of us
Wednesday Aug 18, 2010
The sight of a Welcome to Colorado sign brings high-fives all around
our car. Max is beaming. He suggests, "Let's drive all night until
we get to Boulder."
We are catching the last light of day, after spectacular views of
canyons and cliffs across Utah. And some less than spectacular
These began yesterday, when Max asked why the desert is the desert. I
said something about them being hot and dry, but realized this was
more description than explanation. Randy tried to muster something
effects, adding that Aunt Katie had once explained deserts to him.
We agreed to wait for an answer from her.
Today, Randy explains the slanted stripes we see in the towering rock
formations -- layers of sand that formed in water, solidified, then
became upended. This elicits another WHOA from Max. When Max asks
why we see water in the distance that isn't really there, we can't
offer much more than the label, mirage.
We would miss real views of Colorado if we drive through the night.
But I have been contemplating Max's plan as well. We can't wait to
get home -- just to be there, but also to assess the damage we fear from the
Randy reminds us that they won't be out of the house until
So we settle in Grand Junction for the night. Feeling very close.
Thursday Aug 19, 2010
Randy and I are strong in the face of different stressors.
We enjoy a beautiful drive through Glenwood Canyon and the Colorado
Rockies on our final leg of the trip home this afternoon. Max's
questions are easy to answer today -- over and over again. "When will
we see Toshio?" For dinner tonight, at his house, on our way home.
Max works on a present for Toshio during our drive. I think his big
cousin may not see the merits of a "spider" crafted from a water
bottle label, but Toshio gives it an appreciative "cool," and the boys
run off to play.
A couple hours later, we arrive home to a place that looks even worse
than we feared. All our carpets need to be replaced. Randy had
seen some stains during our January visit and suspected as much. I am
still saddened to see how abused the floors looks. Our couches and
benches and tables and dressers look like the four children who lived
here were in the habit of running around with scissors and
Randy surveys the same scene and cheerily announces, "Some of our
furniture is totally intact!" As we take in more and more of the
damage (it looks like the kids also ran around with paint), Randy
declares, "It will be fun to get into home improvement mode. It's fun
to fix things."
I can't seem to remember what situations I am the strong one in. But
I don't think I am ever this strong.
Saturday Aug 21, 2010
We discover a major obstacle to maintaining the sabbatical mindset.
Not the need to fix it. We continue to be baffled by the damage.
(How is it even possible to ruin pots and pans? Melt the microwave?
Break the stove, the garbage disposal, and the track lighting?) But
the damage is actually getting us out and about, to look at (or giggle
while jumping on) carpet replacement options in Boulder and Denver
Then this afternoon, Randy sets up a canopy to shade the back yard,
over a wading pool he fills for the boys. Max plays in it all
afternoon. Kai joins him after his nap. We eat dinner on the deck,
enjoying the part of our property with no visible damage -- the back
In Berkeley, we had no yard -- just steep drop-offs above and below
That got us out and about -- the adventuring mindset. Now, we just
feel like staying home.
A different, but perfectly reasonable, sabbatical mindset, Randy
Sunday Aug 22, 2010
Kai is coming around.
Max woke on Friday asking to go play with Ben and Harrison, and Ollie and Mason. Colorado
Kai asked to go play with Charlie and Leo, and Zoe and Ian. Max explained that
they are in Berkeley, we are in Boulder. Kai burst into tears.
On our way home from carpet shopping, he asked us to stop for "5
minutes, no-moving-big-red-train park."
Yesterday, while Randy and I savored not going anywhere, Kai asked
repeatedly if we could go home.
He seemed to register our response. He has the following conversation
with himself throughout today: "Let's go home. We ARE home!"
Tuesday Aug 24, 2010
Our transition back has been so overwhelming that I am looking forward
to relaxing at my dentist appointment in a couple days.
Wednesday Aug 25, 2010
We wouldn't have hosted tonight's dinner party before our
Madeline and Veronica have
taken a road trip from LA to Boulder this week. Our house is a wreck,
and not just from the rental damage. Their family steps their way
through suitcases, laundry baskets, and moving bins, for an evening of
stomp rocket, pool play, hackey sack, and
trains. Sweet hugs are exchanged among the kids at the end of the
We are grateful the sabbatical has helped us to embrace the chaos.
Thursday Aug 26, 2010
We have been living in a bubble.
We knew this at some level. But we didn't realize what would happen
when the bubble burst.
I have been trying to get Max and Kai set up this week to start
preschool and daycare. They need to make 3 1-hour visits to their
classrooms before they can start.
Their first visit was Tuesday. I met with Max's teachers and the
school nurse for an hour beforehand, to go over Max's medical history
(the abbreviated version) and his current needs.
When Nanny Kate brought the boys in, Max was clearly disappointed to
be entering a roomful of adults, instead of a roomful of toys or a
playground. He put his head in my lap -- highly unusual behavior for
him. Kai followed suit -- not so unusual for him.
Kai stayed by Kate's side during his classroom visit. Max stayed by
the toy trains during his classroom visit, even though the other kids
were playing outside. The teachers and I finally coaxed him out to
play a bit.
When the kids lined up to come inside, they counted off as their heads
were tapped. Max was beaming as he belted out EIGHT! for his turn.
He went inside for lunch, got a napkin from his MAX bin, sat with it
in front of him at the lunch table, put it on his lap when the girl
next to him told him to, and nibbled some tortilla and passed other
foods around the table.
Their second visit was supposed to be yesterday morning, to
participate in indoor activities. But Max's morning cares were messy,
and by the time all was cleaned up, we were too late.
We make it on time today. Max's class is in circle time. He runs
over to sit next to the girl who told him to put his napkin on his
lap. When I come back 20 minutes later, he excitedly says hi, takes
the sip of formula I offer, then just as excitedly says, "Good-bye,
He also greets Kai, who is clinging to me. Kai won't let me leave his
classroom without him. ("TOO SPOOKY.")
Kai is unhappy here. Max is happy, but I don't know if he can stay.
We need to figure out a way for him to manage his formula by himself
-- 20-cc sips every 20 minutes. We are searching for alarms, easy
pour bottles, and small cups. Nothing is working so far -- lids that
can be tightened enough for the formula to be shaken are too difficult
to remove, bottles that pour smoothly spill too easily, and Max
doesn't pay attention to the alarms and tries to pour more than he
should. We also don't know if it will work for his teachers to
contact us whenever any problems arise with his various dressings.
In our bubble, Randy and I saw our kids throughout the day. Kai was
totally comfortable with Kate. Kate was totally comfortable with
Max's cares. Both boys had many friends, through our friends --
people who understood about Max's medical situation.
Now we are seeking the acceptance of strangers -- of Max's teachers,
his peers, his peer's families. We are hearing about how some short
gut kids get made fun of, or how they make friends at school but the
friends' families are reluctant to get together outside of school.
Our house isn't yielding any better news. Randy is unable to fix the
stove this afternoon, and I can't scrub out the bright stains around
the house and on the linens.
I agree with Kai. It's spooky outside our bubble.
Friday Aug 27, 2010
Nanny Kate is the one taking the boys to daycare and preschool today.
This helps a lot.
Not because of how the kids react. Max still happily says good-bye
after Kate brings him his sip of formula. Kai still refuses to be
left in his classroom.
But Kate worked in a day care before joining our family, the day Max
turned 1. She has seen how kids struggle to adjust. She never
thought much of it. She knew they always would.
And, Austin's mom has given
us a good back-up option for measuring out Max's sips -- send him in
with a cooler of pre-filled sippy cups.
Bubbles pop, but it may be easy enough to keep making new ones.
Saturday Aug 28, 2010
Max thinks we are back
in Yosemite. As we drive
into the park this afternoon, he says he wants to ride the bus that
goes around it, again. The boys run along paths and scramble on rocks
while we take in the big views -- not of granite cliffs but of
mountains. We are just an hour from our house, in Rocky Mountain
National Park. The boys enjoy the mild temperatures (Randy and I have
been excited to finally experience some summer after leaving the fog
of Berkeley, but Max has been wilting in the Boulder heat), while we
enjoy a break from the stresses of our transition.
Sunday Aug 29, 2010
When our friend Jan calls, Randy is out with the boys shopping for
shot glasses. She asks if things are that bad.
They are actually pretty good.
I unpack several bins while the boys are out, and get most of Max's
medical supplies organized. The dozens of remaining bins (some in the
garage from our move, the rest in our shed from just before our move)
can keep waiting.
We enjoy dinner with Dick and
Jan -- with the boys jumping on their trampoline and giving puppet
shows beforehand, and throwing rocks into their pond afterward.
And the shot glasses work well for Max. They limit his self-pours of
formula, in preparation for his first full day of preschool
Tuesday Aug 31, 2010
As soon as I mention school this morning, Kai starts crying.
But on our drive in, he decides that he wants to introduce his teacher
to Babar and Butch. (We now
feel secure bringing them in to school. We can order more Babar's if
one gets lost. We had been terrified of losing our no-longer-made
Butch, but Grandma Julia saved the day by sending us one that her
other grandkids outgrew.)
Kai freezes when I give him a hug and a kiss and go to leave. His
teacher suggests he walk me to the gate and give me a high-five. He
stands, frozen. I walk to him, and hold up my hand. He high-fives
me. Then he goes back to standing frozen.
I leave quickly, as they recommend. I wander the paths and corridors
back to Max's classroom, where he ran in as soon as we arrived. I
find him on the playground. I can hear Kai screaming in the
But he is done screaming by the time I get Max set up with his
formula, and his alarm system (Randy's voice saying, "Max, it's time
to drink your milk!").
And Kai is not crying when Randy stops in at lunch to check Max's
dressings. (Max is using the exercise equipment.) Kai is also not
crying when Randy picks him up at the end of the day. (Max is chasing
another kid around.)
Progress. But the teachers do have one question for Randy. What does
"Mommy get veeber" mean? Kai apparently made this request all day
long. Randy quickly realizes. "Mommy get Kai-bear."
Wednesday Sep 1, 2010
When the renters first visited
our house, we should have realized they would be wrecking
But we didn't see the writing on the wall (figuratively) -- and
(literally) even until yesterday, when we discovered scrawling across
several feet on the interior of the stucco wall behind our house.
The wall was brand new for
Max asks if our house is being thrown away. I reassure him that we'll
definitely be keeping it, even though I talk about the renters
Friday Sep 3, 2010
I ask Kai 3 times if he had fun at day care, just to see if he will
stick with his answer.
He had a promising start, on this second full day. (The boys will
attend on Tuesdays and Fridays for their first three weeks, with Kate
watching them on the other weekdays. Then Kate will move to Portland
to go back to school for her MFA, and the boys will hopefully
transition to full-time.)
After Max ran right into his room again, the school director stopped
me to discuss Max's allergies. (They would like for us to provide food
for him each day in case he is allergic to everything being served.)
Kai pulled me down the hall, saying "Let's go to Bear Room."
(What a perfect name for his classroom. Kai-bear is so much of how
Kai thinks of himself that when he decides we are all bears, he names
us: Mommy Bear, Daddy Bear, Max Bear, and Kai-bear Bear.)
But Kai cried and cried as I left. The glare on the classroom window
made it hard for me to see him as I walked back toward the car. But I
could hear him.
Randy forgot to ask how Kai was doing when he stopped in with Max's
lunch. He was too excited to see Max sitting with everyone, passing
food around the table, sharing the tupperware of tortilla and grapes
and pasta that I packed for him, and nibbling.
Kai was not crying when Randy picked the boys up at the end of the
day. Both kids came home talking excitedly about their days. Kai
particularly liked circle time and running in a circle.
And every time I ask if he had fun at day care, he says yes.
Saturday Sep 4, 2010
Now I remember what we were dreading about preschool and daycare.
We have been focusing on Max's formula-pouring and Kai's separation
anxiety. But their sniffling and coughing today remind us of all the
Kai should handle them like any other kid. Max is trickier, since
every cold slows his digestive system dramatically, requiring us to
cut his feeds to avoid dumping and vomiting. We will need to monitor
how this affects his growth.
We head to Pikes Peak -- another chance to escape the heat, and for
the kids to rest during the long drive.
The views at 14,110 feet (which inspired the song, "America the
Beautiful") make this outing a favorite for Randy -- and a chance to
show the kids that Colorado offers plenty of opportunity for
adventure. Max is happy running around with Randy at the top.
But the thin air at 14,110 feet (and a lack of nap) makes Kai melt in
my arms. He refuses to leave them, so our exploration of the peak is
much more limited. When he cries, I ask him about Loyo, an exuberant
boy in his class who ran over to show me his cooking pot on Kai's
first full day. Kai immediately perks up. LOYO IS MY FRIEND, he
informs me. I ask what they like to do together. JUMP.
All things considered -- colds, separation issues, too much driving,
and too little oxygen -- Kai's declaration is my favorite part of the
Sunday Sep 5, 2010
Max asks his friend Ryan to
come into the bathroom with him this afternoon, to watch as I do his
cares. Afterward, they run back to playing with trains and pretending
to be trains. I don't know what Ryan thought. But I'm glad that Max
wasn't worried about it.
Monday Sep 6, 2010
Smoke fills the air above the foothills to the northwest this morning.
It blots out the sun by evening. We try to protect the kids from how
scary it is (3500 acres, 0 percent contained), so that Max's biggest
concern is that his playdate with Ben and Harrison has to be
Tuesday Sep 7, 2010
Kai eats at day care today. This is apparently the first time he has
felt safe enough to do so.
Wednesday Sep 8, 2010
Max tells Nanna (who arrives this afternoon) what he doesn't like
about school: Quiet time.
After lunch, some of the kids at school nap. All of them are supposed
to be quiet. But Max chatters away. This has turned out to be the
hardest-to-mange aspect of his transition to preschool.
Max excitedly describes today how to get to Kaitlyn's house (turn like
this, then like this, then like this, then up a hill). She's a cute
kid in his class. Max confirms that he told her how to get to our
Hopefully he can learn to whisper.
Thursday Sep 9, 2010
Max says he doesn't want to go to school tomorrow. This is unusual
for him. He clarifies: He doesn't want to go to school while Nanna is
visiting. He doesn't want to miss out on any time with her.
Saturday Sep 11, 2010
As Kai turns 2 this morning, I watch him, wondering, "What happened to
Kai?" He is crying. He has been strangely fussy over the last week,
unconsolable upon waking.
Max has a blast at our bring-your-own instrument party, running around
with 20 other kids, and getting so wired by the end of the night that
he is trying to convince people to shoot stomp-rocket air into their
mouths. He explains that the air shoots out your nose. He doesn't
manage to convince anyone to follow his lead.
Kai is too overwhelmed to blow out his candles (Max does it for him,
after waiting surprisingly patiently). Kai doesn't want to leave my
side. But he does warm up to people accommodating his requests to
Monday Sep 13, 2010
I never expected ostomies to be relevant to my job.
But last year, one of my
students emailed me a New York Times piece
You Don't Know Makes You Nervous." The piece describes how people
are happier knowing they have a high likelihood of developing a
disease than not knowing what their risk is. They are happier knowing
they'll get an intense electric shock than not being sure. And, they
are happier knowing they'll have a permanent ostomy than thinking it
might be temporary.
We can relate. The uncertainty around Max's condition in the early
days felt worse than actually receiving the worst possible diagnosis.
The long-term plan for his ostomy felt stable and manageable compared
to the uncertainty our friends faced, of when to reconnect the small
and large intestines.
Watching those friends move
on has been hard. But who knows what possibilities might open up
for Max down the road.
Now, thanks to that student's research, I feel like I understand a
our brains struggle to deal with all this uncertainty.
Tuesday Sep 14, 2010
Max's teachers know when he is faking his condition.
He vomited at school last Friday. I explained that with no fever, he
probably just had a slowed intestine from the tail end of his cold,
and we could just reduce his sips of formula.
I spent the next hour trying to make this case.
But the final decision was that we could not change his medical plan
(which specifies how much formula he should get) without approval from
the school nurse (who was not available) and Max's doctor. We are
working on setting up a more flexible medical plan, given how often we
adjust Max's formula to meet his needs.
Max spits up again today, twice. I offer to stop in again. But the
teacher who witnessed it suggests I hold off. She had watched Max
spit up just after taking his sips of formula. Then she eyed him as
he asked afterward if he could play with trains. Max explained that
he got to play with trains after his vomit last week. His teacher was
not freaked out by his spit-ups. She was on to him. She explained
that he could not get trains by spitting up. Max is fine.
Wednesday Sep 22, 2010
Max's teachers are on to him in more ways than one.
They report today that he has a crush on Kaitlyn. He likes to ask her
for hugs, and check on her in the bathroom. We are trying to convince
him to play it a little more cool.
Thursday Sep 23, 2010
Max and Kai said good-bye to her last night. They have never known a
time without her -- Max doesn't remember his first year, filled with
surgeries and liver disease. Kate's mom gave the boys a spectacular
book to remember her by, which begins with Kate's birth and ends with
the boys grown up and telling Kate about their latest adventures.
- We have moved house.
- I am the one asking Kai for the high-five, hug, and kiss when I drop
him off at day care.
- Nanny Kate is gone.
The first time that Kai didn't cry when I dropped him off at daycare
(last Tuesday), he was distracted by a musician setting up a big drum.
I met Loyo's mom on my way
out -- she had been wondering why her son was calling KAI KAI in the
mornings. We learned at parents' night that Max and Kai often chat at
the fence between their playgrounds, for upwards of half an hour, with
other kids gathering around them. At least Kai is happy enough to
interrupt his playing to oblige my good-byes.
And the boys have also been amazingly happy with moving -- again.
Living in our basement with all of our belongings, and watching guys
with big trucks and power tools cutting up our bedrooms upstairs,
seems like a great adventure. Randy and I made a last-minute decision
to invest in home improvement, rather than spending money just to
repair and replace everything the renters ruined. They have never
acknowledged or apologized for what they did.
Even with all the sudden changes, it still feels so good to be
Monday Nov 8, 2010
We have had a rough month and a half. Some of the lows:
- The loss of the boys' great-grandmother, Mautch. She lived in
Boulder, but was buried in Crestone, 4.5 hours south of here. Max was
somber at the funeral and afterward. He talked about how sad it was
when Mautch's coffin was lowered into the ground. He wanted to know
where her face was. When we returned home, he asked an elderly
neighbor whether she was dying.
- The week before, Randy was incapacitated for 4 days with the
stomach flu. At least he managed to clean up after himself. The boys
caught it too, and kept me busy while they stayed home from school.
Max felt well enough after we administered IV fluids to promise,
"Daddy, I will take care of you every day almost." I tried to hydrate
Kai with water, while waiting to see whether he could keep even that
down. "Water is for plants, milk is for Kai bear," he protested.
- All the vomiting meant that we had to cancel a much-anticipated
trip to Pittsburgh, where we had planned to stay with Sasha (who talks about Max and
Kai being her brothers), see Austin and Chase, get Max
checked out by his (potential) transplant team, give research talks,
and get nostalgic.
- Living out of boxes and hampers in our basement -- while we wake
with contractors, wait for back-ordered bathroom supplies, and give up
on the renters ever reimbursing us for all their damage -- feels
distinctly not fun in the context of vomiting and death.
- All the chaos also meant that we could not find Kai's dinosaur
costume for Halloween -- the hand-sewn one from baba that Toshio and
Max each wore when they were
2, and that Kai was set on for the boys' Toy Story theme -- Max as
Woody (with a costume made by baba), and Kai as Rex.
- The guys have all been sick again over the last week. Not as
debilitatingly so as a month ago, but still.
Tuesday Nov 9, 2010
And some of the highs:
- Mautch's ceremony was a loving celebration of her 97 years of
life. She died peacefully in her sleep, surrounded by family, after
having had the chance to say many long good-byes. After each of the
beautiful songs sung at her gravesite, Kai called out YAY!!
- The funeral brought Max and Kai together with their cousins. On
our drive to Crestone, I described to Max what he could expect at the
ceremony: bagpipes, songs, stories, coffin, tears. He thought about
this, and said, "I think.... I want.... I hope..." He paused to take a
sip of formula. I asked what he was going to say. He said that he
hoped that Maya and Mateo's
hotel room would be right next to ours. It was. Perfect for the kids
to run back and forth testing which room had the best beds to jump on.
Randy's 20-something cousin Morgan was on the other side of us. Kai
couldn't stop following her around and talking about her. At one
point, he drew a line under his nose with a pen. It looked like a
little mustache, like he was trying to make himself look older for
- We got to Pittsburgh in between illnesses, for a separate trip we
had planned around a conference for Randy. We were able to expand the
trip to stay with Sasha, see
Austin and Chase and Lorenzo and his little sister
Francesca, take Max to transplant clinic, catch up with colleagues who
have followed Max's story, and get nostalgic. Max was interested in
our reminiscing for the first time, asking repeatedly where he and Kai
and Sasha and Derek and Lia
and Kieran and Avani and
Lorenzo and Francesca were while their parents were having so much fun
15 years ago.
- We drove from Pittsburgh to DC for Halloween and the Rally
to Restore Sanity. Sasha just happened to have an extra costume
that she lent to Kai for the occasion: a size 2T dinosaur. Rex and
Woody and Angelina Ballerina roamed the mall and then the Air & Space
Museum among the (very polite) mobs for sanity.
- AMAZING. Kai loves to say this, usually about how much he is
eating. We have had some fantastic moments of hearing and saying it
about Max's progress. His Denver GI team said it when they saw Max at
the end of September, for the first time since before our sabbatical.
So did the cashier in the hospital cafeteria, who saw us every day
during Max's first four months of life. His Pittsburgh transplant team said
the same thing two weeks ago. (Max had run all the way to the
appointment from the hospital parking lot, after we discovered that
the rental car key to get us to our appointment was in Randy's pants
pocket, on him at his conference. He borrowed a colleague's car and
drove home to give us the key, so that we could arrive 45 minutes late
for our appointment, even with Max's running.) This team last saw Max
when he was 7 months old. Now they are signing off on him. We can
get back in touch if we are interested in transplant down the road,
but he is doing so well that we can just wait to see how his intestine
develops and medical
options advance. We have already been doing this, but it was
great to hear it from the source.
In between hearing those AMAZINGs, we were asked a question that made
us say it. Max's teachers asked if his reduced eating has any other
effects, like increased oral stimulation needs. I relayed the story
about how when he was diagnosed with Hirschsprung's at 3 weeks, we
were told that he would be delayed in speech, and how incredulous we
were initially (no neurons in the intestine means a speech delay?).
The teachers listened, then one of them asked, "So was he delayed in
speech?" We were amazed that they had no idea he had needed years of
speech therapy. But as they explained, there is just no evidence of
- Our basement adventure feels a bit more like an adventure again
(rather than a ridiculous decision), thanks to just a bit of
normality restored on the main floor. Our guest room is back
together, just in time for baba to visit to help out while Randy is at
a conference in DC. The boys don't seem to miss this, their old room,
and are excited to keep living in the basement. It seems like they've
never lost their sense of this remodel as an adventure.
Thursday Nov 18, 2010
Moms have to be strong in the face of kids who so love their Daddies.
Or have another kid.
This week, Max and I started dropping Kai off in the Bear Room at
school before heading to Max's Rainbow Room (at the suggestion of the teachers, who think that
switching the drop-off order this way may help Max to settle into his
So Max witnesses Kai screaming and clinging to me when I try to say
good-bye. Kai had a month of happy good-byes from mid-September to
mid-October, but has been protesting drop-offs again ever since.
Max just can't wait for Daddy to pick him up at the end of the day.
But he is perplexed by his brother. "Kai is so FUNNY!" he declares as
we leave the Bear Room. "Why does he miss MOMMY?"
Friday Nov 19, 2010
Today is the happiest day of Kai's life.
For months, he has been using anything and everything -- a baby doll,
a spoon, a toy truck -- as a guitar. He strums, sings, and dances.
When we ate in the hospital cafeteria a couple months ago, Kai left us
to walk several tables away, to the next diners. He glanced furtively
at them, sitting to either side of him, before bursting into song.
When people see that he wants to sing (like he did at the baggage
claim in Pittsburgh), they'll often ask if he knows the abc's, or some other children's song. Then he belts out "KEEP THEIR BOYFRIENDS WARM AT
NIGHT" and "BACK TO THE CUTEST GIRLS IN THE WORLD."
When he struggles to say goodbye at daycare drop-off, his teachers
reassure him by saying that they'll play the Beach Boys. He grew to love
them during drives around Berkeley with Nanny Kate.
This evening, he opens a very belated birthday present, which he has
just watched Randy purchase at Target. His very own guitar. He looks
ready to jump out of his skin. He is bursting with excitement like
we've never seen.
Monday Nov 29, 2010
Max tells one of his teachers about how we have no kitchen and no
place to eat at home, because of the renovations. It's not true --
our kitchen area has been completely untouched. But we know what he
means. Waking with 1 to 4 contractors in our house each morning is
starting to feel that invasive.
Friday Dec 3, 2010
A colleague comes to town to
talk about her research on infant learning. She has followed Max's
story from the beginning, and feels like she knows him intimately.
She is still amazed to see how big his personality is in real life.
Saturday Dec 11, 2010
Kai is wearing overalls for perhaps the first time. He keeps calling
Sunday Dec 12, 2010
Today is the second happiest day of Kai's life.
We go to Denver to watch Cousin Toshio's taiko drumming practice. Kai
is mesmerized by the pounding and spinning and jumping and shouting --
except when he gets overwhelmed and needs to leave the room to listen
from a distance.
When we return home, he plays a drum that Nanna gave us long ago. He
plays and plays. I can't get him to join us for dinner until I hide
the drum, and promise that he can play it again after he eats.
Monday Dec 13, 2010
We continue to marvel as medical options advance --
human intestinal tissue has been grown in the lab -- and to
appreciate the luxury of watching and waiting.
Thursday Dec 23, 2010
People are often surprised to learn that Max is on only one
medication. Yes, he gets his IV-nutrition overnight, but when it
comes to medicines, for years he has been on only one.
And now he is on zero.
Many short-gut children are on a regimen of antibiotics (e.g., one
week on, one week off, rotating through several different kinds), in
an effort to control bacterial
overgrowth. Max's doctors have encouraged us to try more
antibiotics to see if he might thrive even more with them. But we
have been happy to use them only once every couple of years instead,
when he has had a clear episode of bacterial overgrowth.
So his single medication has been omeprazole, an antacid. I stick
a syringe of it into his stomach button each morning, and Randy sticks
one in each night. It is designed to reduce Max's stomach acid, which should help to reduce his fluid loss (because
acid can draw fluid into the intestine) and also reduce any irritation
to his skin.
But recent discussions among the yahoo
short bowel syndrome group reminded us that omprazole can also
lead to bone problems in the longer term, and might impair digestion
and increase allergies. We had tried to take Max off of it last year,
but quickly put him back on after his ostomy outputs increased.
We learned that we may need to do a more gradual wean, because the
system can bounce around and overcompensate (producing even more acid
than usual) as antacid is reduced. So we have been reducing Max's
dose by drips and drops over the last 6 weeks. His system has seemed
to gradually stabilize with each reduction.
I give Max his last cc this morning.
Saturday Dec 25, 2010
You would think that getting a new master bedroom would make for a
great Christmas present.
And it does.
But it's nothing compared to Scotch tape and a flashlight.
After the frenzy of getting the bathroom painted yesterday (a day
after returning from a fun trip to the mountains with my family) and
then moving in today, just in time for baba and jiji and Naoko and
Mike to come stay with us tonight, the best gifts involve a slower
The boys spend an hour with their stockings this morning -- each
focusing on one favorite item. Max applies his shiny new roll of
Scotch tape to everything in sight ("How does Santa know what I
like?"), while Kai dunks his underwater flashlight ("It goes
As Cousin Toshio and all the family arrive, Max and Kai couldn't be
more excited -- Kai for everyone's presence (he loses interest in
gifts after the flashlight) and Max for everyone's presence as well as
The new bedroom is good. Christmas couldn't be better.
Tuesday Jan 4, 2011
We have been wondering how and when to start potty-training Kai. When
I pick the kids up from school this afternoon, after their nearly
3-week holiday break, I learn that Kai has been peeing in the potty
here for a long time. Randy and I are stunned. We ask Kai whether he
was ever going to let us know. He giggles over the pleasure of his
secret, and gives an emphatic NO.
Wednesday Jan 5, 2011
During our drive to school, Max asks: How many Christmases do we get
to have in our life?
He wants more and more. I'm glad that he seems to think this was a
Randy came down with a fever of 103 a few days after Christmas, and
has been incapacitated since. I came down with a mild version of it.
Max and Randy got pinkeye. All four of us got colds.
So while Randy and I did our best to get through the days (and the
nights, with the boys calling out often), our families shopped and
cooked and cleaned and shoveled snow. Nanna gave us healing
We apologized for being such poor hosts.
But our families seemed to agree with Max.
We're lucky they come here for the kids, whose ailments did not dampen
their enthusiasm for learning to play ping pong (aka the "whacking
game"), zooming Lightning McQueen and Chick Hicks around their new
remote-control race track, and being read to from their Christmas
books. (Kai eventually came around to appreciating more than just his
And we're lucky we got to have this Christmas in our life.
Thursday Jan 6, 2011
Max tells Randy about a new kid in his class. We can't understand
what the boy's name is. Randy asks if he is Chinese. NO DADDY, HE
TALKS JUST LIKE ME! The name sounds like it could be an Asian name.
Randy asks if the kid looks like Max at all. NO DADDY, HE HAS A RED
JACKET WITH A WHITE HOOD!
Friday Jan 7, 2011
The last time Max looked this shocking, we got plenty of warning.
It was when he was in the NICU at St. Joe's. The nurses were having
trouble accessing his tiny veins for his IVs -- this was before he got
his permanent broviac. They finally got one into his head. They
warned us that it might be jarring to see him with a big IV coming out
of his forehead. It was.
I don't get any warning today.
Randy finally feels well enough to venture out of the house for the
first time in 11 days. He picks the kids up from school. When Max
walks in the door, I shriek. And for the next hour, until tuck-in, my
jaw keeps dropping every time I look at him.
He has been twirling his hair over the last month. It started
innocently enough, with him joking that it makes him look like a
curly-haired girl in his classroom. But his twirling got more intense
over time, so that he was actually pulling out clumps of his hair.
All attempts to get him to stop have failed.
So the guys stopped at the barber shop on their way home.
Randy tells me later that he thought about texting me a warning. But
he thinks I handled it well, the sight of Max walking in with a shaved
head. From shrieks, to stunned silence, to awe.
It's different, and dramatic, but actually kind of cool. Our little
monk. Our Last Emperor.
And he seems thrilled.
Saturday Jan 8, 2011
When I lifted Kai into his carseat two days ago, he whimpered. I
asked him what was wrong. MOMMY SAID KAI BEAR IS GETTING TOO HEAVY,
I reassured him that I'm very proud of how big he is growing. But he
is clearly upset to see how it makes me struggle.
After I lifted him into his crib last night, I brought my hands around
to hold my aching lower back. His face clouded with concern. He
implored me to make things better in the way he knows best. EAT
Monday Jan 10, 2011
I lift Kai's arm to wake him so I can try to get the kids to school on
time. It falls like tofu back onto his crib.
He is supposed to transition from the Bear room to the Penguin Room
today. I wonder if he is sleeping in as part of his extended
I think about all the sicknesses we've been dealing with (Randy
thought he felt another one coming on this weekend). I think about
tomorrow's start to our higher-pressure semester (we have only 15
minutes between the end of the class Randy is teaching and the start
of mine, so we have to hope that we don't get called to do Max's cares
around noon -- and that the kids stay healthy).
I let Kai sleep.
Max says he feels very tired too. Really he just seems sad over the
idea of leaving Kai behind. I need to stay home with Kai, so I let
Max stay also.
I wonder if Max is feeling anxious about his (lack of) hair. He seems
genuinely happy with his new look, but several adults who have been to
our house have not said a word about it, I suspect out of fear that it
might have been medically-instigated. So Max may be feeling
Kai power sleeps his way through an extra 4 hours, his usual approach
Hopefully both boys will feel more ready tomorrow.
Tuesday Jan 11, 2011
The kids at preschool react to Max's shaved look just like they've
reacted to his condition.
When we pick him up this evening, we ask what the kids said. Max
replies, "Nothing." Then he remembers that one kid (the one who doesn't speak Chinese and has a red coat) said something. But he can't remember what.
He seems a little disappointed.
But the teachers may have made up for it, exclaiming when I dropped
Max off and taking turns rubbing his head. He was beaming.
Wednesday Jan 12, 2011
It's clearly too soon for Kai's transition to the Penguin room.
He cries and clings to me at drop-off just like the old days.
He quickly got changed out of his outfit on his first day. His shirt
had snaps at the bottom, like a onesie -- one of my cozy favorites,
but apparently unacceptable for the serious potty-training in this
The handout from his class describes a desire to help kids to "develop
a love and respect for books, enjoy stories, rhymes and songs." All I
could think is that these teachers don't know. They don't know that
Kai loves singing the Beach
Boys, carrying his dog-eared copy of Food Rules around with him
everywhere, and saying "Kevin seven -- it rhymes!" They don't know
what Kai loves, and they don't know all the things to love about
That's what I see.
Randy sees Kai happily engaged in activities at pick-up, and gets the report about
how contentedly he played, ate, and napped.
It's clearly too soon. For me.
Friday Jan 14, 2011
Max wakes at 5 am, coughing. He tells me his formula pump is set too
Last night, the babysitter called to let us know his pump was beeping.
Randy and I were at a dinner for an annual conference here (the one we
flew back from Berkeley for
last year). I got up to leave the dinner.
The babysitter does not know how to operate Max's pumps. She has been
helping us around the house and with medical supplies a couple of
evenings a week, and doing some light babysitting after the kids have
been tucked in. She is wonderful.
Randy suggested I stay. He was convinced he could talk Kelly through
fixing the pump over the phone.
Or that Max could help.
He has been taking on more and more of his own cares. He measures out
(a prebiotic) for his formula every night. And he starts his
formula pump at tuck-in, which involves pushing a series of 8 buttons
to clear the numbers from the previous night and set the pump rate
(which is higher for the first half of the night than for the second
Max didn't end up needing to help. After a couple of phone calls,
Kelly was able to fix the problem.
But at 5 am, Max decides that the rate is too high. His digestion may
be slowed, which happens periodically. I am groggily trying to decide
what to do, when Max directs me to turn the pump down 4. (4 downward
presses, which reduces the feeding rate by 4 cc/hr.)
I follow his instructions, and stumble back to bed. He goes back to
Saturday Jan 15, 2011
The kids are too tired tonight to hate.
Max knows we don't like when he uses that word. He went through a
phase last fall when he said it all the time. Now he says it every so
often, watching to see how people will react. We pretend that he
It's easy to pretend with Kai. When he says, "I hate you," he gives
his cuddliest bunny rabbit look.
When Kai and I walk downstairs for tuck-in, he tells me, "Mommy and
Daddy go upstairs, so Max and Kai-bear can hate." He smiles
This morning, Max told me that after he and Kai are tucked in, he asks
Kai if he hates him, and Kai says yes. Then Max says, good thing,
because I hate you too.
But both boys were up late last night with a post-conference gathering
at our house, and the night before with Max's pump beeping. And they
skipped naps for a long day of playing together -- reading, coloring,
chasing each other, and playing music, while Randy and I continued to
unpack our seemingly never-ending supply of bins.
They go straight to sleep instead.
Monday Jan 17, 2011
WHY MAX IS SPITTING UP? WHY HE IS NOT DRINKING?
Randy and I have the same questions as Kai. The spitting up started
yesterday, and has decreased today. The lack of interest in his
formula started yesterday, and is worse today. Max drinks water and rehydration solution instead.
His temperature is elevated, but not to the level of a fever.
It is probably a cold, which may have begun when his formula-pump rate needed to be
turned down. If so, it is yet another cold in a long succession
since Max started school.
His coughing and altered drinking schedule will probably require us to
keep him home tomorrow, on our day of back-to-back teaching. But we
are grateful for just colds.
Tuesday Jan 18, 2011
And we are grateful for 15 minutes.
Kai is staying healthy, but since Max is still coughing and refusing
to drink his formula, it's easier to keep them both at home. So
that's what I do until noon. Then I put them in the car and head to
campus. Randy finishes teaching his class, meets me at the car, and
drives home with the kids, while I go to teach my class. Some
meetings get cancelled. But now we know that we can manage a school
day with the kids at home, thanks to the 15 minutes we have between
Wednesday Jan 19, 2011
We need to stop giving the kids reasons to pretend they are sick.
They stay home again today. This means getting to spend time with our
friend Michael, who arrived
last night from Providence.
And after we pass a drum store on our way to breakfast, it means
getting to watch Michael jam on a 15-piece drum set. Kai's eyes are
wide. He jumps up for his turn. He insists on using one hand to hold
mine, while he drums with the other.
We come home with a tom-tom drum. Kai plays it for much of the
Max's heavy coughing this morning was genuine. Hopefully they'll be
ready to return to school tomorrow. And we can convince them to
Saturday Jan 22, 2011
We didn't know we were in the eye of the storm.
Max was finally healthy enough for the boys to go back to school
Thursday. Last night, they played cars and drums and ping pong
and Max and Henry at a
birthday dinner party we hosted for a colleague. This afternoon, they
get in one more trip to the drum store with our friend Michael, before
he heads to the mountains for
But tonight, we wonder again when the boys will make it back to
school. Max's cough is back. And Kai has caught it.
Tuesday Jan 25, 2011
Sick but happy.
All the guys have colds. The boys are thankfully healthy enough to go
And to keep the moosic going.
Kai focused on his Christmas saxophone toy from Grandma and Grandpa
Sunday afternoon. On Monday evening, Max finally convinced Randy to
He has been asking for it for some time, presumably missing it along
with drives with Nanny Kate. Tonight, through their coughs and
It and Billie
Jean while Kai bangs
Thursday Jan 27, 2011
Be careful what you wish for.
We have been trying to juggle family and work. The latest plan is for
me to take the kids straight to school in the morning (and have Kai
eat breakfast there instead of at home -- the earlier drop-off time
also works better for Max's transition into his classroom), and after
we eat dinner as a family, for Randy to tuck both boys in (instead of
him taking Max and me preparing Kai).
Today is Day 2 -- of this more balanced split of kid-care between me
and Randy, and more work time for me and less time with the boys.
I miss them.
Friday Jan 28, 2011
And be careful what you wish for when you're being careful what you're
I am being careful about wishing for more time for work. And I am
wishing for a chance to spend a little more time with the boys.
We are running late this morning. I contemplate feeding Kai at home.
I end up rushing the kids in to school, but we miss breakfast by a few
minutes. Kai seems happy enough with the raisin snack he ate on the
My next chance is at tuck-in.
Max runs to get an empty soda can, which he likes to drink his tuck-in
water from. But he is connected to his IV pumps, and Randy can't keep
up with him. Max has been very energetic as he recovers from his
cold. Suddenly, the floor is sprayed in white --
Randy quickly clamps the IV line, to prevent any bugs from entering
Max's bloodstream, and confirms that Max's broviac is fine. The break
is in the line near the pump. Randy takes Max to the dining room to
prepare a new Omegaven and line.
I clean up the fish oil. And I take Kai downstairs for tuck-in, where
I listen to his spirited reading of a Henry and Mudge book. I'm glad
for the chance. But I hope the next one will be less dramatic.
Sunday Jan 30, 2011
Kai is totally happy during our drive to the ER.
Max is a little anxious. We try to calm him with stories about how we
made this drive when Max was
born (enjoying a brilliant sunrise, after a night of waiting, with
Randy parking and the two of us walking in together), and
when Kai was born (careening
up to the entrance, abandoning the car, with me moaning as I was
rushed in by wheelchair).
I am strong and calm, as I have been since waking from a nap to
discover Kai bleeding from several places around his left eye. I
soothed Kai. I reassured Max. I worked to convince Randy that we
should go to the ER. (I thought we should take Kai there even before
discovering a chopstick shard lodged in his eyelid. Randy agreed only
after determining that he could not pull it out.)
The medical team asks whether I am ready for them to try to remove the
fragment. ("Definitely better me than Dad." Randy and Max are
getting a movie from the car for Max to watch.)
The team swaddles Kai in a blanket so that he cannot fight them. I
sing Baby Beluga. Kai screams. He screams as they try to stabilize
his head, as they shine a bright light on him, and as they extract the
fragment from his eyelid. He screams as they turn up his eyelid to
assess the puncture, as they insert a dye into his eye to check for
damage, and as they rinse his wounds.
I hold him. Max comes in and gives Kai stickers.
When we get home, Kai summarizes the incident: "I was playing my drum,
with my drumstick, I mean my chopstick. Then I went to the hospital."
We don't know much beyond that. Randy saw that Kai was going back and
forth between snuggling into pillows on the couch and playing his
tom-tom. He thinks that the chopstick got wedged into the back corner
of the couch, and Kai fell onto it.
We will apply an antibiotic ointment to his wounds for the next 5
days, and take him for a checkup in a couple days. He did not need
stitches, and his wounds did not bleed much. The test showed no
scratching of the eyeball. His pain has been manageable with Tylenol.
His eye should be fine.
Everyone else seems good with that.
Max talked about how sad he felt when we were assessing Kai's injury
before heading to the ER. He whimpered when the physician's assistant
described our options (sedating Kai, or trying to immobilize him).
Max was so upset during the procedure that I could hear him crying
outside the room, over Kai's screaming. But by tuck-in, he is
reassured enough to stop empathizing, and declares, "I don't want to
sleep by that bloody guy."
Kai was handed a bag of goldfish crackers on his way out of the ER,
and finished it during the drive home. He interrupted his dinner only
to get an extra spoon for his quinoa. He pushed his chair to the
kitchen, climbed up on it to open the silverware drawer, reached for
the spoon, changed his mind, and reached for a chopstick. I was
hovering, and said NO. He went with the spoon.
I stayed strong until I saw the team pull the 1/2 inch shard from
Kai's eyelid. Now I feel like I did when we watched Max stop breathing after one of
his surgeries. I feel like I can't really breathe. I can't shake
Randy doesn't get it. Everything is fine.
Monday Jan 31, 2011
I wince watching Kai today.
It's not just his eye, which is mostly swollen shut. Randy had
reported that it was looking good overnight, but later realized that
he had no way to tell while Kai was sleeping. He reminds me of the
spider-baby in Toy Story.
But what is most disconcerting is Kai's complete disregard for our
hopes that he will sit quietly while his eye heals. I keep the boys
home from school so that I can keep a close watch on Kai's pain and
any signs of infection. Kai runs around the house giggling with Max.
When Randy cautions them to be careful, Kai tries to get Max to
I thought I was keeping Kai home for his sake, but seeing how happy he
is works wonders for me.
Only twice does he say that his eye hurts. Once in the morning when
Randy asks how his eye feels -- Kai points to his bad eye and says it
feels fine, then points his good eye and says it hurts. And once in
the afternoon, when he catches a glimpse of himself in the mirror. He
stares for several seconds at his puffy lump of eyelid, declares that
his eye hurts, then goes back to playing.
I give him tylenol only once -- at 4 AM, when he cried out and
whimpered until I gave it.
If the winter storm here doesn't close their school, Kai should be
ready to return tomorrow -- by which I mean, I should be ready to let
Tuesday Feb 1, 2011
Max's first year prepared us to be strong in the face of medical news.
So I'm unprepared for feeling like I could collapse at Kai's follow-up
appointment this morning.
After the doctor meets Babar, Kai lets him touch his eye, and shine a
light into it. He tracks the doctor's finger -- right, left, up,
down. At first he moves his head in each direction, but eventually
the doctor gets him to move his eyes.
The doctor says that Kai's eye is healing well, and should recover
completely. I feel weak with relief.
Thursday Feb 3, 2011
Kelly comes to help us out on
Sundays and Thursdays. She greeted us when we came home from the
hospital with Kai this weekend, and gasped at the sight of him. His
eye looked even worse Monday. His teachers cried out in horror when
they saw him Tuesday.
When Kelly sees Kai tonight, she gasps again. She is shocked, and so
are we, at how you can barely tell that anything happened.
I actually had a sleep-deprived crazy moment this morning, leaning
over Kai in his crib, when I wondered, "Did you hurt your eye?" I was
confused for a second, because it looked like he had been in some kind
of minor scuffle, not like he was healing from an eyelid punctured by
a half-inch shard of chopstick 4 days ago.
Wednesday Feb 9, 2011
Max is struggling with behavioral issues at school.
This quickly overwrites all the great stuff that has been happening.
Like how quickly Kai's eye healed completely. How he squealed with
delight playing catch with Aunt Katie, who came to visit last weekend
(along with Nana). How Max told her that he wanted her to stay
forever. How sweetly the boys sat in Nana's lap to read. How Max is
suddenly sounding out words and reading books on his own. How Kai
announces tonight, "I love Mommy and Daddy." (Before this moment, he
had always claimed that he didn't love Daddy, because he loves
And Max's issues suddenly bring up all kinds of memories.
Like how many days we had to wait until we could hold him after each
surgery in his first weeks and months, and how impossible it seemed to
get him enough painkillers, but not too much. How high his bilirubin
levels got while we waited for Omegaven and watched his condition
deteriorate. How much pain he endured through countless other
episodes, some of which we had to hold him down and subject him to,
like stomach buttons that made him bleed, skin granulations around his
stomach opening that we had to burn off, and weeks of epogen shots.
Normally, when we revisit these memories, we feel incredibly lucky and
grateful to be where we are. Now, we wonder whether these experiences
have anything to do with why Max is having trouble controlling his
frustration and anger at school.
Maybe, maybe not. We'll try to look forward. And to appreciate what
shouldn't get overwritten.
Thursday Feb 10, 2011
Speaking of holding Max down and subjecting him to a painful
His labs (which Randy drew last week) were a little off. His BUN is
up, indicating dehydration, and some of his electrolytes are outside
the normal range. He also hasn't been growing well in recent months,
probably in part because of the constant stream of colds the boys have
brought home from school, which slow Max's system and require us to
cut back on feeds to avoid dumping or vomiting.
So his TPN is being adjusted.
The last time his electrolytes were off was two years ago -- his
behavior was off as well, and it normalized as soon as his
electrolytes did. So I am hoping.
We have been giving him extra IV hydration fluid some afternoons, but
it never seems to be enough. Two days ago, Max cried for 20 minutes
over having his water restricted. I told him that Austin is going through this
too, because drinking water also causes him to dump and get more
thirsty. Austin asked his mom whether he could have all the water he
wants when he gets to heaven. Max calmed, and asked, "What did she
say?" The earnestness in his voice broke my heart as much as Austin's
question did. I told him that she said yes. Max announced that he
would drink 100 pounds of water when he gets to heaven.
The glucose in Max's TPN is being increased to help his growth, for
the first time in 20 months. And this is the reason we need to hold
him down tonight. Randy pricks himself to test the glucose system and
make sure it doesn't hurt too much. OUCH!! he yelps.
Max is anxious, waiting the recommended 3 hours after getting hooked
up for his test. (We weren't planning to give him advance notice, but
somehow he knew it was coming, even before Randy's yelp.)
He ends up being much braver than Daddy. He doesn't even wince as
Randy pricks his finger. His blood sugar is fine.
We are hoping the same will be true for his growth, and his
electrolytes, and his behavior.
Friday Feb 11, 2011
I gt a call to pick Max up from school this morning. He is apparently
He has been waking before sunrise almost every day this week.
(Waiting for the sun, then watching the light spread from one side of
the sky to the other over the course of an hour, turns out to be a
great way to intuit how time zones work. Max now seems to totally get
why Pittsburgh has been awake for a couple of hours when Berkeley is
He ran around with Kai all morning. But maybe that caught up with
him, perhaps in combination with the bad dynamic he seems to have
entered into at school. He comes to work with us and seems fine.
Saturday Feb 12, 2011
For 4 hours after Max wakes, he talks about a friend from school.
Then she arrives for a playdate. They race Lightning McQueen and
Chick Hicks around the track, and draw together. Kai hugs Max's
friend good-bye 3 times. Max plays it a little more cool. But as we
say goodbye, and the other mom suggests we do this again, Max suggests
Wednesday Feb 16, 2011
We head to Pittsburgh for a weeklong playdate with Sasha (and for Randy and me to
give talks). Sasha's dad notes how well she gets along with Max and
Kai. He wonders if it is genetic -- parents who like each other have
kids who like each other too? Sasha's mom wonders if it is based on
early exposure -- some of Sasha's other close friends are also kids
she met in her first couple years of life. Or maybe our kids like
friends who are associated with their parents hanging around? But as
Max and Kai and Sasha giggle and play together, they don't seem to
notice us much.
Sunday Feb 19, 2011
We meet Austin's family at
Station Square this afternoon. Austin tells Max that he feels really
thirsty a lot, just like Max. Talking with Austin's mom about our
struggles, I feel the same kind of complete understanding.
Tuesday Feb 22, 2011
During 3 hours in the ER with Kai tonight, I catch a glimpse of how
much easier Max's life could be.
Kai's life seems incredibly easy. When we pick him up from daycare, his
teachers always give the same report: good eating, good napping, good
playing. Max has been asking, "When will Kai ever have a bad day?"
The answer turns out to be: When we prohibit him from drinking.
We have come to the ER on our way home from the airport, after
noticing that Kai was gasping in his breathing every 10 seconds or so.
We realized that his breathing has sounded raspy ever since we said
our sad goodbyes to Sasha this afternoon. Her nanny had mentioned
something about him inhaling some applesauce, then coughing some out.
Googling "child inhaled food" doesn't look good, and calling the
after-hours doc gets us routed to the ER.
Kai is not allowed to drink until the problem is identified -- which
means no water across 3 hours of mostly waiting, with brief
interruptions to get vitals taken, get checked in, get listened to
with a stethoscope (by the person who extracted
the chopstick shard from his
eyelid), and get an x-ray. (In the meantime, Randy hooks Max up to
his TPN in the car.) Kai is remarkably good, but he pleads for water
and requires constant distraction and attention.
All looks fine -- we can take Kai home, and just watch for signs of
infection. As soon as I give him water, he is back to his easygoing
I can't help but think of all the water Max and Austin plan to drink
Wednesday Feb 23, 2011
The last week is a blur.
It is in part from the stress of our return route via the ER.
It is in part because of all we squeezed in, including:
The blur is also a result of Max deleting my notes about the trip.
Randy doesn't use his Notes program on his phone, so Max
routinely writes and deletes notes there. They didn't realize that
the same isn't true of my notes.
- The Cloud Room (a large black space filled with silver helium
balloons to run among), at the Warhol museum, Friday. The boys had
been asking to return since they romped through it last October. They
met baba and jiji, who drove up from Cleveland.
- The Science Museum with baba, jiji, and Sasha's family Saturday: Kai
spent most of his time staring at a basketball-playing robot, and has
been talking about it every day since.
- Catching up with Lorenzo and
Francesca's family and Anne and
Guy's family afterward.
- Dinner at our friends Marlene and Dave's Sunday. We didn't see
much of their 2 older boys while our kids were playing with Sasha and
another girl. But we saw a lot of their vehicle toys.
- Lunch Monday with a friend from Boulder, who is now a postdoc at
CMU. We met at the Phipps Conservatory -- a lovely place for lunch
(and to explore in tropical warmth afterward, as a blizzard came down
outside), but with 3 kids and 2 adults (Randy was in his day of
meetings), Chris and I didn't get much conversation in.
And Sasha's mom somehow deleted most of her photos from the week.
It is a happy blur.
Saturday Feb 26, 2011
We wonder whether Lia can
still lift Kai. He has packed on the pounds since we said goodbye to
her and Derek last summer (and he now weighs more than Max). Their
family is staying with us at the tail end of their spring break trip
to Colorado. The kids pick right up with their playing. And their
hugging. And their lifting.
Tuesday Mar 1, 2011
How do you spell love?
Today isn't one of Randy's best birthdays. All the guys have colds
again. Randy's ear is plugged and has been driving him nuts for days.
We need to draw Max's labs to check whether his new TPN formulation is
normalizing his electrolytes -- I collect a urine sample in the
morning, and Randy races to draw his blood in the evening so he can
drop everything off before the lab closes.
Our main celebration takes place over a birthday box the kids and I
packed yesterday, while they were home sick from school. I threw in a
tour book of Switzerland, which we (in theory) leave for in a few
days. We made origami cupcakes. The boys drew pictures. And while
Max was working on his birthday card for Daddy, he asked, "How do you
Saturday Mar 5, 2011
I've never been so excited to see a pen cap.
Or to see how many people respond to a flight attendant making the
classic request: "Is there a doctor on board?"
We are flying to DC, en route to Switzerland, where Randy is scheduled
to give a keynote address at a robotics conference. A dozen dings
sound out as doctors around the plane hit their call buttons.
Max thinks he swallowed a pen cap. He is feeling pain in his
esophagus. Kai and I sit in the row behind Max and Randy, watching
them confer with an EMT, an ER doc, and a pediatrician. The flight
attendant brings a stethoscope.
Max is breathing normally. We are told that he should be able to pass
the pen cap through his intestine. We should not give him anything by
mouth until after we land, because the pen cap might cause him to
vomit and choke. The flight attendant arranges for paramedics to meet
us at the gate. They will be ready as Max takes his first drink.
As we prepare for landing half an hour later, I dig around under all
our seats, gathering Kai's collection of shapes and books and
characters. I see a pen cap. We ask the flight attendant to bring
back the pen she took from Max. The cap matches it.
Max seems as relieved as the rest of us.
Our best guess is that he bit the cap off the pen, and it flew off
behind him. He seemed genuinely confused about what had happened, and
got increasingly scared as he saw us reacting to the possiblity that
he had swallowed it. (We searched for the cap then too, but didn't
find it among our layers of stuff.) Max has also been having pain in
his throat over the last few days, possibly due to the antibiotics he
has been on since Wednesday, for a double ear infection.
Just in case, we still wait to have Max drink until we are off the
plane (following a pain-free landing for him and Randy, despite their
clogged ears). He drinks without any problem.
I receive an email from a friend, wishing us a wonderful trip with no
medical challenges. I am also hoping for no more false alarms.
Sunday Mar 6, 2011
There's no way this is worth it.
Our flight to Geneva has us soaked in soda, vomit, pee, and poop. My
spilled ginger ale drenches my pants and Randy's foot behind me. Kai
poops through several overnight diapers, exhausting
our woefully inadequate carry-on
supply. Max wakes from a brief sleep, screaming in pain -- his
antibiotics may be causing acid reflux. He takes 15 minutes to settle
with some benadryl. Then he throws up into Randy's hands. His ostomy
bag needs to be changed -- recent batches of these products have been
bubbling and then bursting, requiring frequent preventative changes at
the first sign of bubbles. Then Max pees down his pajama leg,
probably as a result of being hooked up to his TPN fluids 4 hours
early for the flight. Our woefully inadequate carry-ons don't include
any extra PJs. Randy does laundry in the airplane bathroom.
We land in Geneva on an hour or two of sleep each. The first question
is whether we can walk with our luggage: two suitcases of medical
supplies (one containing 40+ pounds of ice packs and TPN), one
suitcase of clothes, one oversized bag (holding carseats, ski suits,
and diapers), two strollers, two diaper bags, two backpacks, two
lunchbags, two kid suitcases. Thanks to backpacks strapping onto
suitcases, suitcases strapping onto suitcases, and oversized bags
converting to backpacks, we find that we can slowly make our way, to
exchange cash and then collapse at a cafe.
We indulge in chocolate croissants, with rich European coffee. We
watch as a couple of trains to Lausanne (where the robotics conference
starts tomorrow) come and go. We are in no rush. We eventually board
a train for our 45-minute ride.
We watch the city scenes of Geneva fall away to rolling hills and
small villages as we savor the groggy, excited feeling of having no
idea what's to come. The train conductor stops by and gives Max and
Kai fun little tickets to keep. They are giddy.
Our hotel is 300 meters from the Lausanne train station. 300 meters
up, that is -- up the steepest cobblestone incline ever to have seen
a collection of luggage this massive. We rest often. Our strapping
Fighting sleep after lunch at the hotel, we take the metro to the
nearby town of Ouchy, on Lac Leman (Lake Geneva). As we stroll to the
Olympics Museum (Lausanne is home to the headquarters of the
International Olympics Committee), the kids fall asleep. Randy and I
follow suit, after stopping to rest on a bench facing the water and
the sun. We repeatedly wake, squint out at the lake, and fall back
We sit here for two minutes. Or two hours. We have no idea.
It feels totally worth it.
Monday Mar 7, 2011
Berkeley was good preparation
for Lausanne. As was the the struggle to our hotel.
This town is beautiful -- with many striking architectural works set
above views of Lac Leman (clouds block our views of the Alps
beyond). And it is steep.
This works out fine before Randy heads to his conference. We stick
the kids in their strollers, and lean our bodies into them to push
against the cobblestone inclines. We head up to the Old Town, to see
the Cathedrale Notre Dame, billed as "the finest Gothic building in
The kids are more impressed by the shopping district on our way back
down to the hotel -- at least by the toy store we stop in. Then we
grab sandwiches for lunch, for a bargain $20 (we are paying more
attention to prices today, after yesterday's chicken nuggets plus admittedly-delicious duck and sole lunches ran
us 5 times that). Randy heads to his conference.
Max and Kai and I consider our options. The hills would be daunting
under the best of conditions. I can only push one stroller. We are
groggy with jet-lag. Max has low energy, because he has had little
interest in his formula since starting his antibiotics (which kill off
the good bugs along with the bad, throwing off his digestion). Kai
vomited after breakfast -- we're not sure if he is sick, or was just
reacting to eating a full meal at 2 AM Colorado time.
So we opt to walk down the steep hill from the hotel. To the
bus stop at the train station. Our first choice was to check out a
kid train in the nearby lakeside down of Vidy. But after learning
that it doesn't run today, we head for a skatepark there instead. We
jump off the bus to walk through a cemetery next to the skatepark.
The kids fight over the stroller. I end up shuttling Kai into the
cemetery, setting him on some steps, and returning for Max. We slowly
make our way through the steep, pretty grounds to the edge of the
Vallee de la Jeunesse, where the skatepark is. It is a dramatic edge
-- a cliff that drops down to the valley far below. We can only
admire it before heading back to the bus stop.
We plan to get off to check out the park around the kid train. But
that bus stop turns out to be in the middle of a busy traffic circle,
with long steep walks in every direction. The bus ride seems like a
better adventure. We wind our way back through the hills, past the
botanical gardens, past the train station, up around Lausanne to the
Place St. Francois, above our hotel so we can walk down.
Over dinner in the hotel's Thai restaurant, Max and Kai tell Daddy
about our big afternoon: going to a cemetery. And up and down a lot
Tuesday Mar 8, 2011
Our goal is to find fun in Lausanne without walking.
Kai's digestive system seems to have normalized, but Max is still not
tolerating formula, either by mouth or by g-tube overnight. And while
I do Max's cares this morning, Kai falls back asleep sitting up in his crib.
Max and I let him rest while we play Wurfelzwerge, a fun
dwarves-and-dice game that the kind toy-store owner pointed out
yesterday (also considerably lighter than the marble and wooden-track
building sets that the boys were focusing on).
The leisurely morning gives us enough energy to trek up to the Place
St. Francois. We catch a bus that takes us up into the highest hills
of Lausanne, through an enormous wooded park, around curves that seem
I wait until Max and Kai are ready to get off. They really like the
bus. So we take it all the way to the end of the line. We sit and
wait there, and then get off on our return trip, at Lac Sauvabelin.
The boys pick up bread from the ground and throw it to the ducks. Max
checks out an ibex at the rare animal reserve. Kai cries. Max tries
to reassure him by directing his attention to two wobbly baby ibexes.
Kai deems them scary too.
We hop back on the bus, and head back down toward town, to the
Collection of Art Brut, created by people on the fringe -- psychotics,
criminals, and spritualist mediums. Maybe it's their lack of artistic
training. Or more likely, the cramped space of the museum compared to
the Van Gogh, the San Francisco MOMA, and the Warhol. For the first time, the
boys have no interest in art.
They aren't just tired. When I receive a text from Randy asking if
we're up for a sunset boat banquet with his conference, I'm unsure.
He is unsure. (He was well into his keynote address by the time we
woke.) The boys say YES!
So we catch another bus, back to the lakeside town of Ouchy (still too
cloudy to see the Alps). We climb a large boat play structure, and
walk along dramatic fountains. We board the real boat, watch the
sunset from the water, and do puzzles on napkins.
And we appreciate all the fun to be had in Lausanne without
Wednesday Mar 9, 2011
In preparation for this trip, Nanna was emailing us a French word a
day. The one we really need today is ENTRE.
We rent a car this morning to head into the mountains. A car! Not a plane
or a train or a bus, I point out to the kids. Also, Max adds, not
walking or taking strollers or the metro or a boat!
One advantage of a car is picking our own route. We drive around Lac
Leman with gorgeously clear skies -- giving us our first real view of
the Alps. We stop to tour the Chateau de Chillon and to eat lunch on
the water and play in a park in Montreaux.
And one DISadvantage of a car is picking our own route. As we make
our way around the south side of the lake, just past the town of
Evian, we find that our road into the mountains is blocked off. Randy
zips off onto a side road. I protest, saying we have no idea where we
are going. The boys continue to sing together in the back seat,
alternating between children's songs and the Beach Boys.
My map makes it look like we cannot get to our destination this way,
unless the road is blocked for only a short distance. We come across a
detour sign: Route barre entre Thonon-les-Bains et Bioge.
Thonon-les-Bains is a town on the lake. Bioge is a town further
toward the mountains. I think ENTRE means at the start (like a first
course in a French dinner, unlike the American usage of the term for a
main course). This would mean the road is blocked starting here. It
would mean we should turn back.
Randy thinks ENTRE means between. The term for the first course has
another E at the end. This would mean we should keep going, as long as
these roads get us to the other side of Bioge.
Since Randy is driving, while we debate we are already on our way to find
out whether he is right. Eventually, the roads do in fact get us past
the detour. We arrive in Morzine at sunset.
I make Max's TPN on the only available surface in our room, a shelf in
the closet. The room can barely contain us, and Max's medical needs.
But we are thrilled to be here, and no longer entre.
Thursday Mar 10, 2011
We never expect our travels to go smoothly. And we are always seeking
new experiences. But we are still surprised to find ourselves
trekking through manure this afternoon.
After letting the boys sleep in, we gradually make our way out of the
hotel to catch a bus down to the ski resort of Morzine. The bus
passes the daycare where we have reserved 2 days of care for Max and
Kai. We walk down a long road back to it, only to find that we have
missed an 11:00 drop-off deadline. The kids inside are eating lunch,
and it is too late for us to check in for the full day of care, so we
are asked to come back at 1:30.
We walk to a nearby cafe for lunch. Kai eats a whole ice cream cone
afterward. I watch him savoring it. This is very much the pace of
The drop-off at daycare goes smoothly, with high-fives, hugs, and
kisses. Randy and I rent snowboarding equipment, and are on the
gondola at a leisurely 2:30. We surf down the nice spring slush.
We come down for our final run with plenty of time to make the 5:30
daycare pickup (this is also the time when the lifts stop running).
But as we descend, we find less and less snow. Finally, we snowboard
up to a horse grazing in grass.
The snow ends here, but the base is still a long ways off. So we take
off our boards and hike through horse pastures, toward a ski lift we
can see about a quarter mile away. We find more dirt underneath it,
but also enough snow to race down to the daycare just in time. Max
and Kai have had a great afternoon.
We stop at the rental shop to store our equipment, then walk to the
center of town. We see kids on an inflated platform trying to knock
each other off of wobbly inflated stands with inflated bats. Kai is
transfixed. I pull him away, so that we can catch a bus to the town
church, where we wait for the bus to the hotel.
We watch other buses come and go. We shiver.
And we discover that the bus to the hotel stopped running at 5:30.
We take a bus back to the town center, where we eventually catch a
taxi. And where we confirm that it is easy enough to park around the
resort, which should make tomorrow a little smoother. It should at
least be less manure-y.
Friday Mar 11, 2011
We learned a few French medical terms in preparation for a possible
emergency during our trip to Paris, when Max was a baby. Those aren't
the terms we need urgently today.
Maybe we are distracted by the kids' faces when we pick them up from
daycare. They are adorably painted like animals. We spy on the kids,
watching them play happily together for a few minutes before they
We head home, telling them about our day, which felt very full despite
us dropping them off not too long before the 11:00 daycare deadline.
This drop-off still gave us enough time to explore almost all of
Morzine, from slushy surf runs to steep icy ones (while avoiding
manure runs, which we also saved a group of grateful skiers from) --
with spectacular views of the Alps and a break for crepes chocolat.
Back in our hotel room, Kai asks for Butchi. We don't panic at first
-- it often takes us a moment to locate his blanket in the chaos of
travel. But gradually, we realize we must have left him at the
daycare. The daycare that is now closed for not only the day, but for
Randy rushes back to town. I prepare Max for the possibility that we
may not be able to get Butchi back for Kai. He starts to whimper.
Soon after, I receive a text message from Randy: Trouve. I
think this means he found Butchi, but I'm not certain of the meaning,
or of Randy's knowledge of the meaning. So I say nothing to the
But Randy apparently knows not only TROUVE, but PERDU and ENFANT and
BLANKET (which works, apparently), and communicated them to the
French-speaking-only employees at the daycare-for-locals, next door to
the closed daycare where Max and Kai were. This was enough for them to let
Randy in to get Butchi. And for him to receive a hero's welcome when
he arrived back at our hotel.
Saturday Mar 12, 2011
We had big plans for today: take the kids skiing on the bunny hill,
ride the miniature train through Morzine, shop for souvenirs, and
walk across the suspension bridge near the center of town.
But Kai has never skied. Max hated it
in Heavenly, and tolerated it
in Snowmass. We figure all
kids have to go through a long period like this before eventually
We are wrong.
After a couple of runs down the bunny hill, Max starts giving tips to
Kai. (STAND UP!) And he pleads to go on the gondola.
We ride it up to a more advanced kid area with a magic carpet (a
moving sidewalk going up the slope). Max skis run after run. He lets
Randy release him more and more. And he gives Kai more and more
advanced tips. (PUT YOUR WEIGHT ON THE SKI THAT IS GETTING AWAY!)
Kai is content to sit at the top of the slope, watching Max and
snacking until his bag of Wheat Thins is empty. Then he skis down,
holding my hand as I run along beside him, videotaping blind. Babar
is zipped in my jacket, with his head poking out to watch. Kai can't stop
By the time we ride the gondola back to the base, the miniature train
has stopped running. We discover how much the suspension bridge sways
on our long stroll back to the hotel. We don't have time to shop.
We eagerly discuss possibilities for skiing back in Colorado. The
boys can't wait to go again. The day has turned out to be even bigger than we
Sunday Mar 13, 2011
We picked Morzine based on baba and jiji's recommendation, as a
family-friendly ski resort -- one where the kids (and Randy and me)
wouldn't get run over on the slopes.
We've heard tales of aggressive Alps skiers, including from a friend who
jumps cliffs in Chamonix. We drive there today. As the sheer
glaciers come into sight, Max declares, THAT LOOKS LIKE A FUN MOUNTAIN
TO SKI DOWN! We take a gondola up, swinging in the winds (the famous
gondola here up to the Aiguille du Midi is closed due to 120 kph winds
at the top). As we get out and walk across the snow, Kai calls to SKI,
We only stop for lunch and views here, so that we can drive to Geneva
for our flight home tomorrow. We arrive in the city with just enough
time to walk across the lake and wander around the old town, and for
everyone to declare the same answer over dinner (fondue, at last)
about their favorite part of the trip: SKIING!
Monday Mar 14, 2011
When Randy and I returned from our first trip to Paris together, we
brought no purchases home. The customs agent looked skeptical. We
explained that we were poor graduate students. He waved us right
I expect the same skepticism when we fly home today, after a week in
Switzerland and the French Alps (and a few moments in Italy, after
driving through the Mont Blanc Tunnel connecting Chamonix and
Courmayeur). We are bringing home only Wurfelzwerge and a bag of
I am ready to just point to the kids. They kept us on the move during
the day, and exhausted us during the night. (Max's antibiotics had
him waking screaming in pain each night, until he finished his
prescription on Saturday.)
But maybe this is obvious. No questions are asked on our smooth
return home today.
Tuesday Mar 15, 2011
After the boys wake, Kai says to me: Open the shade and see if it is
morning or nighttime. I think it is morning, but I'm not sure.
I open the shade in their room. It is dark, not quite 5 AM. But I
know what he means. I have been up for a couple hours already, and am
thrilled that they have managed to sleep until almost noon Switzerland
Wednesday Mar 16, 2011
We have fantasized about Max and Kai visiting Fukushima.
Fukushima is where my mom is from, where her parents are buried, and
where my aunts, uncles, and cousins live still.
I first visited when I was 12. Junko and Naoko and I played badminton
with our cousins. We ate corn from our Aunt Yu's garden. Naoko
kicked a hole through her shoji (rice paper wall), accidentally, while
sleeping. We talk about it every time we visit.
These are the aunts who jump-started my broken Japanese
when I returned as an adult. Who accepted my countless gaffes (like telling my Aunt Yu that we
thought she was insane, but in a good way). Who gestured so well in conversations
for Randy that he thought he had learned Japanese. Kai's middle name is derived from
their family name.
Our last trip there was New Year's Eve, two years before Max was born.
Randy and I celebrated with my cousins at a local shrine, ringing
bells and drinking amazake (a very sweet sake), after doing the
customary cleansing of our hands and mouths with water ladled from a
stone basin at the entrance.
On that trip, I informed my Aunt Michiko: ďRandy thinks Iím a slut,
and thatís why Japanese people recognize that Iím not from here even
before I try to speak.Ē I had used a word that I thought meant
"messy." I caught the error soon after. Aunt Michiko seemed totally
accepting, of both my initial claim and my attempt to correct it.
This is what I think of when I think of Fukushima.
Not Chernobyl, not 3 Mile Island. I can't comprehend it. I just
Thursday Mar 17, 2011
Kai stands in his crib this morning, demanding: MOMMY I NEED A CUP,
MOMMY I NEED A CUP! He is holding a cup.
Max says, "Kai, that is not a nice way to ask. You should say, 'Mommy
I don't like this cup. Could I have a new cup please?'"
I think about
of the Mind, a preschool program that aims to improve
self-regulation by tapping what is known about child development,
particularly from the work of Vygotsky, a Russian psychologist. One
of the developers of the program spoke in my lab meeting last month.
Her talk was right on target for Max, including her observations that
as kids are learning, and before they can regulate their own
behaviors, they will try to regulate the behaviors of other kids.
Moments after advising Kai, Max sneezes. He demands: MOM, I NEED A
Friday Mar 18, 2011
I empty Max's bins at school, to bring home his extra clothes, and
medical supplies, and boots.
I feel like we have failed him.
At some level, I know this is not rational. I know because of how I
am beating myself up -- on the one hand, for not trying longer to find
some way for this preschool to work out, and on the other hand, for
leaving Max here as long as we did.
He has been coming to work with us this month while we've tried to
find a solution. We thought we were making progress on his behavioral
issues at school, but then were suddenly told that we weren't. We're
still not quite sure what happened.
His medical stuff can make people uncomfortable. We know other
families with kids with medical conditions who have felt like they
were pushed out of their schools. One teacher even happily announced
"Tomorrow will be a better day!" while waving a family's letter
withdrawing their child.
Or maybe the problem was something we were doing, which will become
obvious to us with some distance.
Or maybe it was just Max.
Last night, we finalized our decision to withdraw him from the
We are not sure what's next.
Sunday Mar 20, 2011
This is the most therapeutic birthday party I've ever been to.
Randy and I are emotionally spent, after everything involved in our
decision to withdraw Max from his preschool.
So it is a beautiful sight this afternoon, watching Max (and Kai) run
around happily for several hours with kids at Mateo's birthday party.
Tuesday Mar 22, 2011
At tuck-in, Max asks me to get him a full box of kleenex, for the
tears he will cry for Daddy.
Randy is on his way to meetings in Malibu. He'll only be gone for a
day, thankfully. So I'll have just one night of sleeping in 2-4 hour
chunks around Max's cares. And we won't exhaust our kleenex
Wednesday Mar 23, 2011
After I get the boys tucked in tonight, Kai talks excitedly in his
crib. Their rhythms are a little off with Randy away (though Max and
I got to bond over painting a birdhouse at Color Me Mine, and watching
a show about the moon at the Fiske Planetarium).
As Kai chatters, Max yells to me upstairs: MOM GET ME OUT OF HERE IT'S
Kai joins in, yelling, MOM GET ME OUT OF HERE IT'S TOO LOUD!
Max clarifies, NO KAI, YOU'RE THE ONE MAKING IT LOUD!
Max keeps calling, MOM GET ME OUT OF HERE IT'S TOO LOUD!
Thursday Mar 24, 2011
I should stop expecting anything other than textbook behavior from Max
and Kai in my lab, given how
spectacularly Max shocked us a couple years ago and how beautifully Kai followed
But this morning, I'm shocked again. I can't believe that for all of
Max's talk of heaven, he can
still be fooled by a tall glass of water:
Friday Mar 25, 2011
I'm glad today is the day Kai finally finds his fish book.
He has been asking for it often. So I've been searching the house for
any books involving fish. But as I've presented each find to him (Flood Fish, an animal book from
Naoko, Food Rules), he has
This morning, while he and Max are playing with Grampa (who arrived
yesterday), Kai spots his book. Sure enough, it has a colorful fish
on the cover. He happily reads the book to Grampa. Then he asks
Grampa to read it to him.
The book is actually a thick pad of construction paper. Reading it
entails flipping through the pages, labeling each one: Red, Green,
Blue, Black, Orange...
Sunday Mar 27, 2011
Somehow, Kai is turning out to be the one they know in
Our day with Grampa was otherwise quite nice: brunch at Le Peeps,
hiking Eldorado Canyon, and dinner at Southern Sun. But as we were
calling it a night, Kai pushed a black bean into his nose.
It was right near his left nostril, and he might have just brushed it
away. But instead he pushed it in.
We drove home so Randy could try to suck it out with a syringe. Kai
screamed. Randy tried mouth-to-mouth -- plugging Kai's other nostril
and blowing into his mouth to try to dislodge the bean. Three times.
Kai screamed. Max whimpered. No bean.
So I drove Kai to the ER while Randy tucked Max in. Kai talked happily
all through the drive.
As I check him in, he asks if they will give him a pinwheel again. I
worry that he is liking this routine a little too much.
His later screaming should prevent this.
The wait is short. The doctor sees Kai quickly. But she doesn't see
If it's in there, it's in there really deep.
She inserts a shockingly-long catheter into Kai's nostril. A balloon
at the tip is then inflated, so that when the catheter is removed, the
balloon pulls anything in its path with it.
A beautiful black bean.
The device is so elegant, the procedure so simple. Like we barely
needed to come in. But if we hadn't, we would have been dealing with
a nasty infection later, they assure me. And the Katz extractor
is not for home use.
Kai screams through the procedure, and through the final check with a
bright light into his nostril, but all looks good.
When we get home, Kai excitedly tells Randy about how he got a
popsicle, again -- and this one had two handles (popsicle sticks),
instead of just one.
Randy tells Kai not to think he'll get three popsicles next time.
Wednesday Mar 30, 2011
We have amazing friends and family.
They are teachers, child development researchers, behavioral
therapists, directors of institutes in early education, parents. They
are just great people.
We are visiting other preschools. We still don't have a plan. But
our friends and family are helping us to see that there are better
Thursday Mar 31, 2011
Suddenly, our struggles over the last months feel like nothing.
Robin, the boy in the
Netherlands with Hirschsprung's, who was thriving after his intestinal
transplant, died unexpectedly this morning -- following a double
pneumonia and laryngitis.
He was just a few months younger than Max. He had a Lightning McQueen
Friday Apr 1, 2011
Aria, the girl from New
Zealand with Hirschsprung's, is just 6 days younger than Max. She is
now fighting post-transplant cancer.
Tuesday Apr 5, 2011
When Randy picks Kai up at daycare, a teacher and the director wish
him happy birthday. His birthday was over a month ago. But Kai has
continued to sing happy birthday to him, and apparently does so even
in his absence.
Friday Apr 8, 2011
The food challenge is aptly named.
Max was pleading last year to get his allergies re-checked. He knows
he might outgrow them someday, and wanted to eat the same foods as his
friends at school.
A skin test in January revealed that he still has whopping allergies
to milk, eggs, and nuts, and peas. But he showed negligible reactions
to bananas and strawberries. The next step is the food challenge. So
Max and I head to Denver early this morning, where he can eat
carefully measured amounts of these foods in a controlled setting.
We were told the appointment might last an hour or two. From door to
door, the whole ordeal ends up taking 10.
The first question is whether Max wants to take the food by mouth, or
by g-tube. I should have thought of this. He says he'll eat it.
He starts with half a strawberry. He doesn't like the seeds, but
manages to get it down. He seems fine. We wait for half an hour to
Then he gets a whole strawberry. He seems fine after this too, but
struggles to finish it. He has already eaten more than he eats on
most days. (His interest in eating still comes and goes, but is
almost always low in the morning, when he has just come off of his TPN
and overnight g-tube feeds.) We wait another half hour to make
sure he is fine.
Then he gets a bowl of 4 strawberries.
I feel as overwhelmed as Max looking at it. Eating this much would be
unprecedented for him. We opt to go through the g-tube.
The nurse brings a syringe. It is too big. She brings a smaller one.
It has the wrong kind of tip. I go back to our car, and find the
syringes for Max's Omeprazole. That medication was
much easier to draw up and administer than dose after dose of blended
strawberries, which take about 20 minutes.
Now we are supposed to wait an hour.
Toward the end of this period, Max says his eyes need to be rinsed.
(He had a routine of doing this every morning for a while.) When he
returns from the bathroom, his eyes have puffy red lumps under them.
As the nurse notices and walks us briskly to the exam room, the puffy
redness spreads across Max's nose to connect into a bright thick
And just as quickly, while we wait for the doctor to arrive, the
redness and puffiness subside. The doctor notices only a bit of
swelling. He thinks it probably wasn't the ingested strawberries by
this time, but more likely an irritation from whatever was on Max's
We wait another half hour to be sure.
Then we do it again. Max is brought a sliver of banana. He excitedly
downs it. We wait another half hour. He is brought a larger chunk.
He struggles a little, but finishes most of it. We wait another half
He recoils at the bowl of banana chunks that arrive next. We break
out the syringe again.
And now we wait our final hour-and-a-half to ensure that all is
During the waiting periods, Max has his vitals checked, and gets
stickers to put on his progress chart (which he is excited to turn in
for a prize when he is done). We play pac-man on the free
waiting-room table. Max shyly agrees to play a memory game with
another kid. I work. We read Stuart Little. We try unsuccessfully
to start up the game-room Wii. I cancel my afternoon meetings. We
talk about what a good job Max is doing.
By the end, he can barely drag himself over to the prize room. He
quickly falls asleep during our drive home.
We'll be better prepared next time. Thankfully, the food challenge
was not challenging in the way that matters most. We can add
strawberries and bananas to Max's menu.
Saturday Apr 9, 2011
Max does things his own way. I'm not sure how hard to try to convince
At the allergist yesterday, Max's progress chart had 10 star shapes on
it, for him to place his stickers in after each of his food
challenges. His chart hung with the other kids' charts, on the door
to the room where they got their vitals checked. All the other kids
put their stickers neatly in their stars, or had clearly attempted
Max didn't seem to notice the stars. He lined all his stickers up
next to one another. He explained that he was making a train.
I caught myself in the middle of correcting him. They were his
stickers, for his day of tests -- he could arrange them however he
But at the pacman table, I kept trying to convince him to do the
normal thing. He did briefly, as he learned the rules -- moving the
joystick to eat the dots and the fruit and run from the ghosts. But
he quickly transitioned to just moving his pacman to one location and
waiting to see how long the ghosts took to find him.
I explained that you can't hide -- the ghosts will always find you.
And they did, again and again, wherever he sat. His turns were over
in a matter of seconds. On my turns, I ate and fled as quickly as I
could. My wrist started to ache. I switched hands.
But Max insisted on trying different hiding locations. Finally, he
moved his pacman toward the bottom of the board, and waited. And
waited. The ghosts passed right by, over and over. They couldn't see
him. We sat and watched the clueless ghosts circling right around him
for several minutes, until Max was called out for his next test.
This was way more interesting than anything I've ever seen in this
Sunday Apr 10, 2011
I'm grateful for energetic kids today.
One of them is Max, who rides his bike over a mile this afternoon, to
a benefit for Japan on the
Pearl Street Mall. Then he runs off to play with Ryan. (Kai rides a perpetual
wheelie -- leaning back, front wheel in the air, with me pushing his
tricycle with a pole designed for this purpose. He insisted that he
wanted to bike too. He didn't mention the part about not wanting to
The other energetic kid is a girl jumping wildly to the taiko
drummers. By the time I spot her, I have been searching for half an
hour for someone Kai's size. When the song ends, I rush over to the
This is Max and Kai's first big bike ride of the season, so we don't
have a routine down -- or an extra diaper with us. We usually pack
them into strollers or our bike trailer. The girl's mom gives me her
After Kai is all cleaned up, we listen as the raffle-ticket winners
are called. I am hoping to win something big, to give to the mom in
thanks for the priceless diaper. I bought dozens of tickets, but my
name isn't called. Many people seem to have bought many tickets. All
the proceeds will go to relief efforts in Japan.
I'm grateful for generosity too.
Thursday Apr 14, 2011
We feel like we have Max back. And then some.
He is happy.
He is energetic.
He is affectionate.
His TPN is still being tweaked -- more sodium, less potassium, and
most recently, more phosphorous. He is also getting
15% more fluids, and an even greater increase in glucose.
All of this means he is tethered to his pumps for an extra 2
This afternoon, he insists on playing tag with me around my office
area. He sees a couple of his classmates when we pick Kai up at
school, and they eagerly wave and call hi to one another by name,
laughing and talking. Max tells us how much he loves us.
Lots of things are going well -- Max's intestine has slowly recovered
from the antibiotics for his ear
infection, he is tolerating his formula again, we are enjoying our
time together, he loves playing with sitters Kelly, Julia, and Eden a couple days a week, and
we feel relieved and grateful to be moving forward from his preschool
So we don't know what's driving his improvements. But if being
tethered 14 hrs/day is helping, it feels totally worth it.
Friday Apr 15, 2011
Kai's terrible two's have been manageable. Even for Max.
Kai has had just a handful of meltdowns over the last 7 months.
Tonight's arises over Randy shutting the front door to the house, when
Kai wanted to do it all by himself. Kai wails in the foyer.
Max digs around in the grocery bags they have just brought home. He
pulls out a lemon.
Ever since dinner at our friends'
house in Pittsburgh, Kai has requested lemons in his water. He
loves lemons so much that when he kept asking to go to Lemony's Lab
the other day, we figured it had something to do with his citrus
obsession. Eventually, we realized he was talking about my lab, which
he apparently thinks of as belonging to a postdoc he played with there
(while Max was getting tricked
out of Graham crackers). The postdoc's name
Max takes a lemon over to cheer Kai up. What a great idea! we say.
It didn't work, he sighs.
Suddenly, he asks, "Kai, do you want me to squeeze you some orange
juice?" Max has been squeezing mandarins with a hand juicer for all
of us recently. Kai doesn't otherwise drink juice.
Kai quiets. Then he comes running over, squealing, "MASH, SQUEEZE ME
SOME ORANGE JUICE!"
His tantrum is over. These have been manageable -- especially
Saturday Apr 16, 2011
Max's energy translates into a bike ride to and from REI this
afternoon (he rides along the bike paths that criss-cross Boulder,
while Randy skateboard behinds him), and hugging and wrestling with
cousin Toshio, who we meet there.
Sunday Apr 17, 2011
My palms are drenched in sweat this afternoon. Max calls DON'T,
DON'T! Kai calls YIKES YIKES!
At least this is what we do during the larger acts of the Peking
acrobats performing on campus -- as they leap and flip through hoops,
as they jump onto a circling bicycle that ultimately holds 10
acrobats, and as a guy builds a stack of chairs up to the auditorium
ceiling and balances himself at the top on one arm.
We recover during the precision contortion and balancing acts, like
one featuring a taller and taller stack of wine glasses being balanced
on a woman's nose. The boys don't understand why this interesting.
The announcer warned children at the start of the show not to try any
of these dangerous tricks at home. Luckily, Kai's excitement
translates into jumping down a couple of steps into our mosh pit over
and over again, and Max says he will wait until he is 10 or 14 to work
on his acrobatic routines. For now, his biggest excitement is the
idea of riding a bike inside.
Wednesday Apr 20, 2011
Having Max and Kai sleeping in the same room again, after 3 nights
apart, feels bittersweet.
The sweet part is their giggles before they fall asleep.
The bitter part is Max's disappointment at leaving his fort.
Last weekend's trip to REI yielded a bargain 5-person tent ($7 per
person!). The boys were squealing as they helped Randy put it up in
our family room Sunday. They played inside it for most of the
afternoon -- we struggled to convince them that acrobats would be
worth leaving it for. Max has slept in it every night since.
Kai deemed that too scary. Randy ultimately deemed it too hard on his
back, with hunching over for Max's middle-of-the-night cares. So the
tent came down today.
It will go up in our back yard when the nights turn warm enough. We
will see who joins Max in it.
Tuesday Apr 26, 2011
As we leave my office at the end of the work day, Max asks how I think
Kai will react. Max is worried that Kai will be so sad, and he
wonders what we can do. I suggest we wait and see how long it takes
Kai to notice.
When we get to the daycare, we see Kai running and flinging himself on
a mattress with several other kids. They are exuberant. Kai is just
as happy seeing us. He stays happy through me getting his shoes on.
So Max has to ask. Kai, do you notice anything different? Kai
doesn't. Anything that starts with a D? Still no.
We are almost back to the house when it hits Kai. WHERE'S DADDY? Kai
accepts the explanation that Daddy is at the airport. It's just
another 24-hour trip, this time to DC, but these are a big deal for
Max. He has been bracing himself.
Max can't fathom Kai's nonchalance. Before tuck-in, he asks Kai if he
wants to search the house for Daddy. Max seems to be taunting him,
trying to see if he can get Kai riled up. Still no.
Wednesday Apr 27, 2011
It's always a wreck of a day for me after Randy leaves town. He
normally stays up late working, so that he can do Max's 3 AM cares
(and then sleep in late), and I get up with the kids around 7:00.
When he leaves town, I try to sleep in chunks around Max's night
cares. Last night I managed to fall asleep only after doing them.
We welcome Nanna, who arrives this afternoon and watches Max ride his
skuut bike around campus, while I drop by the University's
undergraduate research day to cheer on three students from my lab,
And we welcome Randy, who manages to catch an early flight home, in
time to tuck the boys in.
And I go to bed.
Thursday Apr 28, 2011
Max has been asking whether I will hug my students after my final
meeting of my undergraduate course, this afternoon.
He has been very tuned into our schedules while coming in to school
with us. He knows how sad I am to see my course (on real world
implications of research on child development) come to an end.
I've told him it's not really like that in college.
But when the students clap at the end, I tear up and end up hugging
one who comes to talk with me afterward.
Then the graduating seniors from my lab (one of whom joined while she
was still in high school!) present us with a farewell gift certificate
-- dinner for two and a night of babysitting. I'm so excited for them
and proud of their accomplishments, but so sad to see them go.
I'll tell Max: I take it back.
Friday Apr 29, 2011
Max has been inspired by a variety of artists.
His latest phase employs the medium of black pen on paper. Max
concentrates on making tiny marks across the page, one series after
another. He explains that he is "writing Miyazaki movies."
Nanna introduced him to Ponyo, and today Max introduces Nanna to
Totoro. They are wonderful films (and with their wonderfully strong
girl characters, they help to offset the Pixar
Over the last few days, Max's art has transitioned to magic markers
as his tool of choice, with bright colors splashed across the page.
Spirals are a common motif. He and Nanna have been spending the
mornings drawing together. Clearly, he has found another
Tuesday May 3, 2011
When the guys come home at the end of the day (Kai from daycare, Max
and Randy from the office), Max and Kai give me quick "hi"'s. No
running over for hugs. No telling me random facts about their day.
They don't get to spend much time with each other. They have the
weekends, but those are often filled with activities -- a classmate's
Chuck E. Cheese birthday party followed by Scrabble with cousin Toshio
on Saturday, and saying good-bye to Nanna followed by Toshio's bowling
birthday party on Sunday.
So they don't have time to spare when they reunite at the end of the
weekdays. They run into the back yard. They ride their bikes, throw
rocks, and take breaks to eat olives. They giggle. I'll take it.
Wednesday May 4, 2011
It's a good thing that I'll take it. The boys skip the "hi"'s to me
altogether today, and run straight into the back yard to play when
they get home.
Sunday May 8, 2011
My first Mother's Day gift today is the boys sleeping in late. They
are recovering from a neighbor's Kentucky-Derby birthday party (with
pony rides!) yesterday, followed by a Hope-to-Japan benefit dinner
organized by local women (including Nanny Kate's aunt).
Actually, the first gift came two days ago, when Randy had the boys
give me dandelions from the yard. I put them in bowls -- a couple on
the dining room table, and one in my study. And this afternoon, Randy
picks out a pretty plant and I select an orchid, at a garden center
where we watch Toshio drum in a taiko concert.
Of course, the real gifts came a little less than 5 years ago, and a
little more than 2.5 years ago.
They bring daily gifts of conversation.
This morning, Max asks if I am half Japanese or full Japanese. He is
baffled by how I can read Japanese characters as I name fruits in a
book with Kai ("Ichigo means strawberry"), yet I don't know what one
of the fruits (ichijiku) is, even with a picture.
On our ride home from the taiko concert, Max announces that he is half
And when we call baba to wish her a Happy Mother's Day, she informs us
that ichijiku means fig.
So many gifts.
Monday May 9, 2011
As soon as Randy wakes on the weekends, Kai goes running in excitement
-- for his drumsticks.
Kai came home from Toshio's taiko concert yesterday and went straight
for his drums. When I told Toshio's mom, Randy pointed out that there
was actually nothing unusual about Kai's behavior. When we leave
town, he often talks wistfully about his drums.
So we are not surprised by the report at daycare pickup, though it's a
first: Kai played everything like a drum today, inside the classroom
and out on the playground.
Wednesday May 11, 2011
Maybe they should call it Mommy's day.
On Sunday, Max asked, "Is Mommy coming to brunch with us?" Randy
answered, "Yes, for Mother's Day!" Max paused, then asked, "Mommy's a
This morning, Max tells me that he wants to go back to Color Me Mine, to paint
something for Daddy's birthday. I explain that Daddy's birthday is
far away -- after Max's birthday, after Kai's birthday, and after my
birthday. But Father's Day is next month. GREAT! Max decides he
will paint something for Father's Day.
I mention that Mother's Day just passed. Might he want to make
something for that? (The dandelions the boys picked for me on Friday
didn't last long.)
YES! he declares. "I want to go to Color Me Mine to paint something
else, to give to Daddy for Mother's Day!"
Thursday May 12, 2011
I'm not used to talking with rock stars.
Randy is concerned at first, over how giddy I am about it. But when
he hears who I am talking to, he is amazed.
I did sit next to John Lee Hooker once on a plane, flying home
from college, when I somehow got bumped up to first class. But I had
no idea who he was, so my mortified friends said it didn't count.
When he told me he was a blues musician, I naively mentioned The Blues
Brothers (a movie that he was in).
One of those friends recently
pointed out another connection -- to the guy
sitting at #1 on the Amazon bestseller list. We were living in
(and child-proofing) his home
But the rock star I'm talking with now is someone we have followed for
the last 4 years. He was the thriving, swimming 14-year-old with
extreme long-segment Hirschsprung's to us at the start. Now, he is an
18-year-old providing insights and advice to other families via
He laughs at my suggestion that he is a rock star. I don't need to
convince him. Several other fans jump in to do so.
Sunday May 15, 2011
It's better to give than to receive.
Every day for the last week, I have asked Kai what he thinks his
friend Faustino would like for his birthday. Each time, Kai has given
the same answer: Eggs.
So we stop at the toy store this afternoon, pick up a half-carton of
cute wooden eggs, and head to Faustino's party.
I ask Faustino's parents if he has a thing for eggs. Not that they
Kai was just as adamant that his friend Daniella wanted boats. So
that's what we took to her party a couple weeks ago. Her parents were
just as baffled by Kai's insistence. (But they report today that she
does really seem to like his gift.)
Kai has received many thoughtful gifts over the years. None are not
quite as endearing as seeing how set he is on what to give to
Wednesday May 18, 2011
So much has changed in the 8 months since we said good-bye to Nanny
Kate. And so little.
She has finished the first year in her MFA program in Portland. The
boys come in close to the videoskype screen this evening, to check out
a clown nose that she puts on for them.
Kai plays his drums for her, while Max picks out long songs on a
musical robot and jumps on the couch to them. I don't think he ever
had this kind of energy all the way into the evenings back then.
Kate tells Max that she has been showing friends the card he sent last
month, which said, "I am really a fan of Beach Boys and The Cure" -- a card that he
insisted on writing and sending to her after I discovered him lying in
bed, blasting Boys Don't Cry on the iphone. Kai impresses
Kate with a story about going to the conservatory.
They seem years older.
But whenever we pick them up in our Audi, they still announce, "KATE'S CAR!"
Thursday May 19, 2011
As I do Max's morning cares, he explains that he is leaving his slinky
by the door at night, to keep the scares out. (He and Kai have been
waking in the night and calling out for us recently.)
"Do you know what you have?" I ask. "You have good ideas, and a lucky
little brother, with you helping keep the scares out."
Kai chimes in. I'M A GOOD DRUMMER! "Yes, you are!" I confirm.
MICHAEL FRANK IS A GOOD DRUMMER TOO!
Saturday May 21, 2011
I take the kids to the farmers' market in the morning, while Randy
sleeps. He plants vegetables with them in the back yard, while I work.
(Mainly, he plants while they play.) We go for an evening bike ride,
with Max getting out of the trailer to ride his skuut on the bike
paths. We throw rocks in the creek, then return home to make our
farmers' market dinner. Summer is here.
Sunday May 22, 2011
Max announces tonight, "It's nice to be home." Collapsing with
exhaustion and relief here certainly helps us to appreciate it.
We have spent most of the last 5 hours on our bikes, ending with a
beautiful sunset among dramatic storm clouds. We would have enjoyed
the scene more had we been more certain how to answer the kids, who
kept asking if we were lost.
Our plan was simple enough: to bike to the Boulder Reservoir, about 7
miles away. We ran into a programmer from Randy's lab on the bike
paths. He seemed shocked by our planned destination, probably because
Max was powering himself on his skuut bike. Max did in fact make it
most of the way, but hopped into the bike trailer (with his bike
hanging off the back of it) when our route took us onto the street.
We picnicked on a reservoir pier, and the guys dipped their feet in
the cold water.
The most direct route home was the way we came. But wouldn't it be
more fun to take a loop route? Just like when we biked
the 3 bears back in the Bay
Area. Randy proclaimed that taking this loop wouldn't be much longer
than turning back. And it would be mostly downhill.
Our route around the reservoir came to the road we anticipated, but
with a big trench between the path and the road. I carried Randy's
bike while he carried the trailer with the kids in it. We reminisced
Another path came to the road, but it was blocked with private
property signs. Most of our paths through the Boulder Valley Ranch
came to cattle gates, which we opened and closed behind us, noting the
warning to keep pets close when moving through livestock. We remember
how intimidating the cows seemed when we went mountain-biking in
The route back ends up being 3-4 times as long as the route there
(with Randy insisting that it is just about to be
downhill-the-rest-of-the-way). Just like with 3-bears.
It IS nice to be home. But it also nice to have that lost,
adventurous sabbatical feeling again.
Monday May 23, 2011
Kai's teacher asks what he did this weekend. I'm curious to hear his
take on yesterday's reservoir outing.
He tells her: Daddy biked down a steep hill. Max said NO! (As did
Mommy.) But Daddy biked down and got stuck in mud at the bottom. He
couldn't get back up! (And he realized that the path he thought he
saw across the muddy reservoir bed wasn't a path after all.) Mommy
came down and pushed us up the hill. Then when Daddy rode, the mud
sprayed back at us! (The kids cried at first, when only the mesh
screen on the bike trailer separated them and the mud chunks breaking
free from Randy's tires. After Randy lowered the clear vinyl
protector, they giggled through the rest of the show.)
Yep, that happened too.
Friday May 27, 2011
It's good to take a deep breath, Daddy.
That's what Kai says as we drive to the airport, following a frantic
morning of packing, after a busy week finishing up work projects.
(Frantic for us, at least. The boys enjoyed a fun final morning with
We are actually headed for the hospital. Randy discovered at midnight
that we have no Elecare left. Zero. This is the formula that Max
drinks during the day and gets through his g-tube overnight, for about
half of his calories. Our next shipment is due next week.
Randy can't believe I didn't realize. (I'm in charge of ordering
these supplies.) But I've been ordering the same amount for the last
year and half, without any problems. It was apparently not quite
enough, but we had a little cushion and didn't notice, until we
finally ran out prematurely.
I can't believe Randy didn't realize. (He is the one who mixes the
formula each night.) What about when he took the last can the day
before? Or finished the second-to-last can the day before that? But
the supplies have always been replenished for him in time.
We fail to resolve who is more to blame. Not for lack of trying.
We looked for a way to fly back to the Bay Area as planned. I posted
on facebook seeking anyone in Denver or San Francisco who could lend
us a few days' worth of formula. I emailed the company that mails us
our regular shipments. Randy emailed Max's doctor. We went to
This morning brought welcome options. A facebook reply from someone
local who could lend us some cans -- but a different flavor than Max
is used to. The company could ship some cans to arrive in California
tomorrow. (Randy also called a local company, but learned they had no
supplies on site.) The hospital could give us some cans -- the same
kind as Max's usual.
We don't want to take chances with new flavors or a skipped day of
formula on the trip, so we swing by the hospital. I run in and out.
We catch a bumpy flight to San Francisco, and drive down the peninsula
to spend a couple of nights at Stanford.
Over take-out bi bim bap and seafood pancake from a local Korean
restaurant, I remark how well this has all worked out. Max is getting
hooked up, and we are getting settled into our hotel.
Max responds by cheering, BIG ADVENTURES!! Kai echoes him, and they
yell and giggle over the excitement of it all.
Worth the deep breaths required.
Max's First Year,
Max's Second Year,
Max's Third Year,
Max's Fourth Year,
Top of Page,
Max's Sixth Year
Max's Ninth Year,
Website copyright 2007-2015 Yuko Munakata (munakata AT colorado.edu).