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, neon vomit, pool of blood, oral aversion, blood infection, detached lifeline, leaking stomach acid, food allergies, electrolyte imbalance, blinders, puppy dog pajamas, lives in our hands, exhaustion.

A full life
We moved to Boston when Max was 7 months old, where Mark Puder and Kathy Gura saved his liver and life with Omegaven, 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, sharing, giggling, crawling, Paris, go go go, dolphins, hippos, and a mouse, intruding, healing, rocking, reassuring, family awards, conferencing, conjugating, eating, more giggling, praising, driving, graduating.

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 diapers.

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 entrances.)

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 totally predictable.

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 part.

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, even Mommy.

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 result.

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 overnight.

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 rushing in.

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 before-we-leave-California activities.

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 information.

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 accommodations.

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 text messages.

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 and Kai.

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 phone meeting.

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 quick sprinkle.

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 it.

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 week ago.

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.

Bye-bye valium.

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 inserted.

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 TOO boring."

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 negative.

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 in August.

Friday Jun 25, 2010

Randy appreciates a good fall.

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 Vietnamese sandwiches afterward, then continued south to the island of Alameda. To the kite-surfers.

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 it.

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 sand.

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 dying there.

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 difference.

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, waiting.

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 falls.

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


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 playmates.

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 AM.

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 bags.

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 them.

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 cold.

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 asleep.

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 home.

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 the best.

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 liberating, too.

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 having meetings.

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 over us.

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 move.

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 third choice.

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 desire.

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 Boulder.

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 afternoon.

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 school.

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 concert tonight.

They have seen live musicians here and there -- including Loverboy singing "Working 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 grove.

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 as such.

Friday Jul 23, 2010

We try to keep Max out of our fights. But he turns out to make a good referee.

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 numbers look.

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 the floor.

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 settled.

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 skills again.

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 pool below.

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 suspense.

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 any.)

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 boy.

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 flir.

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 it?"

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 so much."

Friday Jul 30, 2010

At 200 feet up, the most interesting sight is surprisingly easy to pick.

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 the water.

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 here.

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 home).

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 character.

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 surfing routine.

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 lead.

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 birthdays?"

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 Alcatraz."

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 of adventure.

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 reach.)

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 attention.)

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 packing.

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 moving-related supplies.

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 parking lot.

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 plan.

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 broken into.

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 me.

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 covers.

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 this year.

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 the kids.

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 Tahoe.

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 today.

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 explanations.

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 about Coriolis 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 tenants.

Randy reminds us that they won't be out of the house until tomorrow.

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 screwdrivers.

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. Our house.

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 yesterday.

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 yard.

In Berkeley, we had no yard -- just steep drop-offs above and below our house.

That got us out and about -- the adventuring mindset. Now, we just feel like staying home.

A different, but perfectly reasonable, sabbatical mindset, Randy declares.

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 friends.

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 sabbatical.

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 night.

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, Mom!"

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.

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 distance.

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 things.

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 the renters.

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 trashing it.

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 germs.

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 day.

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 rescheduled.

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 house too.

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 sing "California Girls."

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 titled "What 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 little better how 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.

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 home.

Monday Nov 8, 2010

We have had a rough month and a half. Some of the lows:

Tuesday Nov 9, 2010

And some of the highs:

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 classroom better).

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 them leftovers.

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 pace.

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 KERPWUNT!").

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 their presents.

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 good one.

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 treatments.

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 flashlight.)

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, he sobbed.

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 SOMEFING, MOMMY!

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 protest.

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 uncertain.

Kai power sleeps his way through an extra 4 hours, his usual approach to illness.

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 big-kid room.

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 him.

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 high.

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 the Elecare and inulin (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 half).

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 sleep uneventfully.

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 means love.

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 sweetly.

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


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 our classes.

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 afternoon.

Max's heavy coughing this morning was genuine. Hopefully they'll be ready to return to school tomorrow. And we can convince them to go.

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 with Ryan 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 a conference.

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 to school.

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 buy Thriller. He has been asking for it for some time, presumably missing it along with drives with Nanny Kate. Tonight, through their coughs and sniffles, Max blares Beat It and Billie Jean while Kai bangs his tom-tom.

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 wishing for.

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 way.

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 -- with Omegaven.

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 it.

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 wrestle.

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 him.

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 Mommy.)

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 procedure...

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 falling asleep.

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 still sleeping.)

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 11:00 tomorrow.

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 self.

I can't help but think of all the water Max and Austin plan to drink in heaven.

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.

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 spell love?"

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 systems hold.

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 asleep.

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 Switzerland."

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 of hills.

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 impossibly tight.

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 walking.

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 day.

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 notice us.

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 the weekend.

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 kids.

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 coming around.

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 giggling.

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 hoped.

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, SKI! instead.

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 through.

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 chocolates.

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 time.

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 can't.

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 the Tools 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 KLEENEX!

Friday Mar 18, 2011

I empty Max's bins at school, to bring home his extra clothes, and medical supplies, and boots.

For good.

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 program.

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 supply.

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 TOO LOUD!

Kai joins in, yelling, MOM GET ME OUT OF HERE IT'S TOO LOUD!


Kai quiets.

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 suit.

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 said NO.

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...

Grampa obliges.

Sunday Mar 27, 2011

Somehow, Kai is turning out to be the one they know in the ER.

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 the bean.

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 days ahead.

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 pillow too.

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 make sure.

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 line.

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 hands.

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 hour.

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 fine.

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 him otherwise.

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 to.

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 wanted.

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 game.

Max agreed.

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 pedal.)

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 girl's mom.

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 last diaper.

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 hours overnight. 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 situation.

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 is Melanie.

Max takes a lemon over to cheer Kai up. What a great idea! we say. It didn't work, he sighs.

He thinks.

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 with Max.

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, presenting posters.

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 imbalance).

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 inspiration.

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 Japanese.

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 mother, right?"

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.)

He thinks.

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 in Berkeley.

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 facebook.

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 know of.

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 others.

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 about Tiburon.

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 Wildcat Canyon.

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 Julia.)

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 sleep.

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.

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