The neonatologist was wrong. This is Max's story.

(Newest entries are at the bottom -- dates can be clicked on the left.)

Thu May 28, 2009

Max's first year

Max's second year

Max's third year

Fri May 29, 2009

Sat May 30, 2009

Whenever Max calls out for us after tuck-in, I am the one to go to him. Randy is too likely to indulge him, but I know Max needs to sleep. I might read him just one story. And I limit myself to three of the imaginary grapes he usually offers, then insist on carrying the pretend bowl out with me despite his protests.

But tonight, Max wants to talk about his inflatable globe. He describes places and asks me to point them out. D.C., where Daddy flew this week. The place where Max and baby Kai and Daddy and Mommy will fly this summer, and the place we'll move to after that.

I spent a college summer working at AAA, because I wanted to play with maps all day.

So I can't bring myself to cut Max's questioning short. Instead, I move on to opening a map of the world on his bed and explaining how it relates to the globe. He points to random places on the map, tracing an arc from the starting point of Denver each time, and I tell him about his destinations:

• Sweden: Where his favorite author lives. Her protagonists are often hippos.
  
• Spain: Where they eat dinner at 10 pm!
• Turkey: Where my college roommate is working for the State Department at the American embassy. She moved there last year with her husband and four kids under the age of 10 -- the youngest was 9 months old -- for a 3-year stint. They are immersing themselves, touring ancient ruins and participating in archeological digs, staying in cave hotels, and entertaining throngs of local kids and adults with the culture they brought with them, in unlikely forms like a pogo stick. Whenever I wonder how we're going to manage Berkeley, I think of them. I remind myself that we are talking about only ONE year, TWO kids, ONE time zone away (and close to ZERO culture shock and new languages to master)!
• Italy: Where (after I name it) Max jumps in to say that he wants to go see Ollie, who is there with his family.
• New Zealand: Where Aunt Katie got kiwi t-shirts for him and Kai.
• Patagonia: Max points here several times, to the tip of South America. Patagonia, where... it's very far away. And very beautiful?

Wed Jun 3, 2009

Kai prefers his toys upside-down these days. After briefly playing with the buttons and knobs on top, he flips them over and studies their underbellies.

This reminds me of a photo that Randy took of a towering outdoor Buddha in Kamakura, near Tokyo. The bronze statue's image is famous, but my aunt was shocked that she had never seen the perspective Randy captured, from the back, where huge open windows let air flow into the Buddha's torso.

And this reminds me that Max reminded me of this same photo, with his toy-tinkering around the same age.

Thu Jun 4, 2009

We just might throw Max's 3rd birthday party in Boulder, not Berkeley.

Fri Jun 5, 2009

At our regular Thursday appointment, Speech Therapist Beth declared that she was ready to stop seeing Max.

We knew he was making great progress, but her announcement still came as a shock. Beth explained that in charting all of Max's language abilities, she realized that he is now doing everything he should be doing at this age. The only exception is pronouncing the "k" and "g" sounds, a skill that should continue to improve with Max's eating.

I couldn't get my head around this change in perspective, since our plan was to follow the recommendation for Max to continue with speech therapy through preschool. So we pulled up that recommendation from Max's assessment team. Sure enough, aside from the k/g sounds, Max has already achieved all of the language goals that the team set for him to meet by February 2010.

He may not be able to say congratulations, but he sure deserves them.

Sat Jun 6, 2009

Sun Jun 7, 2009

He has been having trouble falling asleep. So we have started counting sheep. He counts tonight at tuck-in: ... 41, 42, 43, 44, 45.

I'm sure it doesn't help that he begins mainlining sugar at bedtime, with his TPN hookup. But he has done this for 3 years, and has usually managed to fall asleep quickly after his 9 pm tuck-in. Ever since his rotavirus though, he more often spends a couple hours playing in his room, jumping maniacally on his bed, and crying out for us before falling asleep.

Counting sheep doesn't seem to be helping him. But it is entertaining me: 46, 47, 48, 49, forty-ten, forty-eleven, forty-twelve,...

Mon Jun 8, 2009

We reassure parents extensively before each study. If their child does anything that seems bizarre, that behavior is probably exactly what we are looking for, as a window onto how our knowledge develops. They shouldn't worry, even if their child repeats actions again and again, when they no longer make sense, and even if their child seems to know exactly what they should be doing instead. We reassure parents extensively after each study too.

But Max is so smart, right? It seems to be a trend among Omegaven kids -- maybe because they're mainlining the fish oil that might help make us smarter. Each day brings adorable developments in his eagerness to read (English and Japanese), his counting, his memory, his stories.

So even though I know that today's games should trip him up, I'm still amazed to see him look just like the hundreds of other kids we have tested in this paradigm (developed by Phil Zelazo), and behaving just as we predicted and described in a paper 8 years ago (see Max's video).

Randy and I laugh off the post-study reassurances from the grad student too. It's reassuring in its own way, once the shock wears off, seeing Max looking like such a typical 3-year-old.

Tue Jun 9, 2009

When he calls for me after tuck-in tonight, he declares, "Daddy having trouble with that Japanese book. Read it with Mommy." He flips through it, pronouncing Japanese sounds like a native. But they have nothing to do with what is written on the page.

His sense of English spelling can be similarly free-form. This morning, he reads the letters on Kai's director chair: "K," "b," "one." These all seem like reasonable confusions. Then he announces what they spell: Max! Later, Randy reads letters on a book cover: H - I - P - P - O - S, and asks Max what they spell. Hippos go berserk!

Max hasn't learned how to read, but he's eagerly learning.

Wed Jun 10, 2009

Thu Jun 11, 2009

Fri Jun 12, 2009

Some aspects of our number knowledge seem to be tied to the language we learn in. When bilinguals learn number facts or operations in one language, they are better at retrieving that information in that same language than in their other language, at least when the numbers are large and exact (e.g., precisely 63). When the numbers are approximate (e.g., around 60), bilinguals can retrieve the information they learn in one language about the numbers equally well from either language. The approximate number system, which is common across other mammals, is not tied to language.

Max asks me to count sheep tonight. I ask if he wants me to count in English, French, or Japanese. He instructs me, "Just count in numbers!"

Sun Jun 14, 2009

Her little brother, Mateo, is closer in age to Max, but doesn't seem to be of interest to him. Two winters ago, when Max looked at a photo of our families together, he pointed to Randy and said "Dada." He pointed to himself in person, then to himself in the photo. He pointed to Aunt Corrie, and looked to me for her name. He did the same with cousin Maya. We went through several rounds like this, without him ever asking about Mateo, in the center of the photo.

Maya was the one cramming herself into the cardboard box last weekend, so Max could close her in. Maya was the one he joined in the box, and after it was converted to a tunnel, she was the one he kept crawling through the box with.

And Maya is Max's focus today, even in the hubbub of our impromptu houseful of great-aunts and aunts (one with a new puppy in tow), great-uncle, Nana, and (oh yeah) Mateo.

Max has always seemed eager to connect with Maya. Now that he's really talking, he can. They jump jubilantly off and on the couch, with Mateo doing his best to keep up. Maya had been insisting that she wants her sibling on-the-way to be a girl. But in the middle of the afternoon jump-fest, she announces, "I want to have two brothers."

And Max has been insisting over the last couple days that we go back to the fair, long-gone. I was starting to worry that we wouldn't be able to satisfy his entertainment needs. But all he needs is a box. Or a couch. And a buddy like Maya. And maybe someday, like Mateo.

Tue Jun 16, 2009

When I went downstairs to join him and Nana in the basement Sunday morning, he instructed me: Go back upstairs, Mommy. He couldn't get enough of playing chimes and ball and Hi-ho-cheery-o with Nana during her weekend visit. He's in a perfect developmental stage for having all kinds of fun with grandparents. Good timing, given that baba and jiji will be moving in with us for a month (while jiji teaches a summer session AI course at our university, during his sabbatical) and then Grandma and Grandpa will help us make the road trip out to Berkeley.

When Nurse Gail arrives tonight to help with the TPN, Max greets her with: Daddy's coming home. Randy has been in DC giving another robotics presentation -- a trip of only a couple days away again, but one that throws off all our rhythms. Last night, I slept for two hours before waking to Max crying hysterically, spent half an hour calming him, slept one more hour, spent 1.5 hours up around his nighttime cares, and then slept two more hours before Kai cried out for his start-of-the-day nursing.

However impolite Max's greetings, I'm happy to have been sent back upstairs, and to welcome Randy home tonight.

Wed Jun 17, 2009

Thu Jun 18, 2009

He caught me off guard with his first attempts to broach the topic. A week ago, while I was disconnecting him from his pumps, he suggested that he would disconnect Mommy next. I said okay, and lifted my shirt to reveal my belly. Max looked to see stretch marks -- but no broviac, g-tube, or ostomy. I thought he might pretend, but he playfully said "Nooo," and we moved on. A week before that, he suggested that I disconnect Kai. That time, he had already moved on before I even registered what he said.

So I'm ready this morning, as I disconnect Max from his pumps, when he says, "Put Kleenex in Mommy." I explain that the Kleenex I put in for Max are to catch the leaking from his g-tube. Mommy doesn't have a g-tube, so Mommy doesn't need Kleenex. Max ponders this information. His next suggestion: "Change Mommy's bag." I explain that the bag is for his ostomy. Mommy doesn't have an ostomy, so no bag. He is silent for several seconds. "I have one!" He declares it gleefully. He does not seem to need any reassurance. I add anyway: "Your friends Christian and Ellie used to have ostomies." (They have functioning large intestines, and so have since had their small and large intestines reconnected, losing their ostomies. We're thrilled when short gut kids reach this milestone, but also feel a bit left behind each time, since Hirschsprung's is unique in this regard. There is no functioning large intestine to reconnect to, at least for now.) "Austin has an ostomy."

Max seems totally satisfied. He moves on before I get to my comments about how each person is unique and has different needs -- glasses, braces, inhaler, etc. But I'll be ready for my spiel when he is.

Sun Jun 21, 2009

Yep, to a friend's house. But if I could cook, I would make a meal like this one to express my appreciation of what a great dad Randy is.

Other kids see the bond between him and our boys right away. Max protests as we prepare to head home. He announces that he will stay behind -- to play with Ben (just 10 days younger than him) and Harrison (2 years, 3 months older, while Kai is 2 years, 3 months younger), or at least to play with their toys. Ben explains that Max can't stay -- because he would miss his Daddy.

Tue Jun 23, 2009

He starts off with a big blood draw in the outpatient clinic, to check his vitamins and micronutrients in addition to his routine labs, in preparation for the transfer of his care to California.

Max has been excited all morning to go see "Doctor Jason." But as the time for his nap comes and goes, and perhaps as he starts to feel some effects of his blood loss, he loses interest in sitting through our conversation with his team. So he and I take off. We run around the halls, then end up reading books in the exam room next door to his. That's when we hear everyone cheer.

Max's liver enzymes look almost normal! They are finally in the double digits where they should be, as opposed to the triple digits where they have been for years. Omegaven has granted us these years, and Max's liver seems to be healing. (The correlation continues, with his hematocrit predictably down too, but fine at the low end of normal.)

All of his other lab numbers that have come back so far look good. And his growth in height puts him up around the 50th percentile.

But his weight has dropped way down, almost off the charts. We knew he had not been gaining, because tracking his weight and mine is one of Max's favorite daily rituals ("Weigh Mommy again!"). But somehow Randy and I had not registered just how far this stagnating set him back for his age. We knew he was growing taller. We also thought we were addressing temporary setbacks, like the rotavirus (which required us to cut his caloric input), by increasing the dextrose concentration in his TPN. He did gain back the weight that he lost when he was sick.

But his food input has been reduced to accommodate his meds, ever since we learned a few months ago that we should ideally give a longer window (1 hour) without food before and after his omeprazole antacid doses -- one dose in the morning, one in the evening = 4 hours without food. We have also been experimenting with stopping his g-tube feeds in the wee hours of the morning (3-6 am), which seems to help his output during that window, as well as his digestion and interest in food the rest of the day. He tells everyone today about the hot dog he was eating for dinner last night.

We thought the cuts in input might help Max absorb more of what he does take in. But he needs more calories. We will increase his TPN dextrose from 14% to 16.5%. We will shrink the fasting window around his omeprazole to 30 minutes per dose, for 1 hour total per day. We will consider returning to running his g-tube feeds through the entire night. As he gets caught up on weight, we hope to start cutting back his TPN dependence again.

One shock will be aggressively addressed, the other one savored.

Thu Jun 25, 2009

We don't know why this mic-key lasted so much longer -- maybe because it came from a new lot number. The suspicion about the Nutriport (the alternate brand, which fit best by far) is that the products we received were close to their 3-year expiration date, so the balloons were prone to popping. The representative who flagged this problem suggested that we test out a brand new balloon. Randy tried to order one, but kept receiving old ones. He was told that products could not be checked for expiration dates before being sent -- we would have to take what we got, and if it was close to expiring, try ordering again. We have now amassed a stockpile of 3-year-old Nutriports and have yet to see a new one.

We'll hope for continued memory failures with the mic-key.

Sat Jun 27, 2009

He has also been singing to himself as he carries out his projects around the house, like opening up medical gauze packets and polishing our cabinet handles. He repeats, melodically: "I got some work to do now."

After our ride to play in the park and throw rocks in the creek, my wrists feel only slightly tender from braking and shifting gears. I appreciate the reminder of how much more manageable everything feels (work, preparation for Berkeley, etc.) with a little break away from it.

We'll see how manageable it feels trying to convince Max to take a break from his Scooby Doo DVD during bag changes.

Mon Jun 29, 2009

Randy points out that Max may be the one person not at liberty to talk endlessly about Kai's cuteness.

Tue Jun 30, 2009

Fri Jul 3, 2009

Max can't get enough of baba, pulling her hand to bring her around with him, ever since she and jiji arrived yesterday afternoon. He sends me back upstairs again this morning. He calls for baba when he wakes from his nap. When Kate walks toward his room, he slams the door and goes back to sleep.

Meanwhile, to everyone except me, Randy, Max, and Kate -- Kai says, "Don't look at me or I'll cry."

Sun Jul 5, 2009

Mon Jul 6, 2009

Randy and I have debated whether to let Max stay up on prior 4th-of-July's. This year, we both figured that Max would enjoy the city's fireworks enough for the sleep disruption to be worth it, and the view from our house would provide a comfortable introduction.

But on the big day, Max skipped his nap, then played hard with Randy and me after a bike ride to the park, and with baba and Jan and Dick back at our house. He ended up falling deeply asleep at his regular bedtime, and didn't see a single firework. I suppose this makes his description all the more impressive.

Tue Jul 7, 2009

Yesterday, I turned around after finishing his cares, and discovered that Kai was not where I had left him. He was only a couple feet away, but the idea that any form of locomotion had transpired still made me gasp.

Last week, at some point during Max's cares, I realized that I was not listening to what he was saying. Such moments seem inevitable, given that he is talking all day long. Still, weren't we just hanging on his every word, wondering if he would ever get to this point?

Thu Jul 9, 2009

After nursing, he wriggles his arm out from behind my back, and squeezes it between my belly and his body. He brings his arms together, and he claps. He also claps when Randy swings him crazy high at the park. Ever since baba taught him clapping earlier this week, Kai seems eager to show his appreciation, beaming. Today, he claps when I tell him that Auntie Naoko and Uncle Mike will arrive late tonight. We'll see what he thinks in the morning.

Mon Jul 13, 2009

He makes a comically pouty face this morning when I tell him that they are leaving. And at dinner tonight, he points to the empty chairs and insists that "Naoto and Mite come back." We remind him that we'll probably see them next after we move to -- where? "Talifohnia," he remembers. We'll see then if having them pretend to sleep so he can wake them up is still all the fun he could ask for. Over and over again.

And we'll see if Kai's terror-alert system continues its downward assessment of Naoko and Mike's threat level -- from level red crying at his first sighting Friday morning, down to level orange on Saturday as he watched them spin in circles and make faces from the safety of his high chair, and finally down to mid-level yellow moments of happiness in Naoko's arms yesterday.

Tue Jul 14, 2009

We cram into a testing room to watch Kai's debut in my lab -- baba, jiji, Randy, me, and Julia, the experimenter. Kai doesn't disappoint us. I fully expect level-red crying at the sight of Julia. But Kai is brave. He reaches for Mr. Lion, with Julia's coaxing. And he goes on to get just as crazily stuck in his ways (see video) as Max did.

Wed Jul 15, 2009

Linda Smith and colleagues have discovered that babies can easily break out of their crazy habits, like the one Kai demonstrated yesterday, if you move them from sitting to standing before you start hiding toys in new places. Pop them out of their specific perspective on the task, and you pop them out of their habits.

That's if they'll agree to stand.

After Kai demonstrated his strong search pattern yesterday, Julia instructed Randy to stand him up. But we didn't get to see whether that change allowed him to find the toy. Our couch potato was too busy struggling against putting any weight on his feet.

Thu Jul 16, 2009

I'm running late for a research talk I'm scheduled to lead. Randy is supposed to participate in the discussion. Nanny Kate has called in possibly sick, so we decide that she should stay away just to be safe.

Our plan is to leave Max and Kai in baba's hands. A fine plan, given that Max hasn't let up on his demands for baba's attention, and Kai has become almost as demanding for her. A fine plan, except that Max needs to be hooked up to his formula pump during his nap. Our first idea is to forgo the pump. But Max really needs his calories. Our second plan is to postpone Max's nap until after 2:00, with us rushing back after my talk to hook him up for his nap. But as we make our way out the door around noon, Max decides that he is ready for his nap now.

So we go with Plan C. Randy gives baba a quick tutorial on how to connect, run, and disconnect the food pump. This process seems simple to us, accompanied by none of the life-threatening risks associated with the IV pumps. But I remember how terrifying everything seemed to us at the start.

Baba indicates that she is all set, and we rush off to school. My students and I present our work to our colleagues. As soon as we finish, Randy and I check in with baba. Both boys are sleeping peacefully. Randy and I get to squeeze in a couple meetings before heading home.

We have been gone 3.5 hours. During that time, Max and Kai slept a combined total of 4.5 hours. It all feels too smooth to be true. Baba says the same thing when we arrive home to find her playing on the floor with two very happy boys.

Mon Jul 20, 2009

Tue Jul 21, 2009

Randy and I have long been perplexed by Max's reluctance to go on afternoon adventures. He screams in protest about getting dressed after his nap, and he screams about being dragged out of the house. NO, SDAY INSIDE! NO SDAY HOME! Then we go out -- bike-riding, grocery shopping, to happy hour -- and he inevitably has a great time. Why is he so stubborn in his protests? It's like he just doesn't want to go along with the coordinated family departure.

When we mention this at dinner with my parents, they are reminded of the summer of 1983. Our planned family trip to Japan got derailed by my complete refusal to go. Baba took Junko and Naoko, and jiji ended up staying stateside with me. My parents think they can see where Max gets it.

Randy agrees. He admits to being stubborn, but he claims that his stubbornness has never taken such an irrational form. I'll wait to hear what his parents say when we next marvel about Max's.

Wed Jul 22, 2009

Months of uncertainty around renting out our house get resolved instantly this morning, at the moment we receive the final, signed copy of our lease from an Australian family of six. They will move in in just under a month. With this contract, we clear the final hurdle for our sabbaticals. I ask Max who is moving to California. I hold up my fingers as he names everyone:

1. Max.
2. Mommy.
3. Daddy.
4. Kate.
5. Neko.
6. Milo. (Kate's kitty.)

I hold up a seventh finger. Is anyone else coming?

7. Kiki.

No, I explain, Kiki is not coming with us to California. She will come with us to Amsterdam this weekend. The unexpected obstacle for that trip is obtaining ostomy supplies for Max -- not something we can do without or find on the road. But our month's supply is back-ordered with our home health company. The company might receive these supplies tomorrow, and might get them to us just before we leave. We can't take the risk. I call the product manufacturer directly. They have the product, but can only send us a handful of samples according to company policy. They do call the home health company on our behalf, but end up talking with a representative who claims that we are trying to get our next month's supply early, in violation of our health insurance policy, when we are just trying to get the products I ordered weeks ago. I get sent on a wild goose chase calling medical supply companies across Colorado, who either have the same back-order problem, or won't supply out-of-pocket to someone who has insurance that should cover this product through another supply company.

I can't remember the last time I've felt so helpless. Tears get me nowhere. Thankfully, our health insurance coordinator saves the day, arranging with our home health care company to ensure the supplies will arrive before we depart.

So, Kiki is coming with us to Amsterdam. I ask Max incredulously, "Can you really not remember anyone else moving to California, besides you, mommy, daddy, Kate, Neko, and Milo?" He looks blankly at my seventh outstretched finger. I resort to a hint. "Who do you like to play and giggle with?"

7. Baba.

"No, baba is not moving with us to California, but she'll probably visit. Who do you like to show how to crawl?"

7. Baby.

"Yes! Baby is moving with us to California!"

Max seems unfazed -- by the fact that Kai will join us, or that Max seemed to have forgotten about him, or that we're about to go on these crazy adventures.

He probably would have shrugged off my ostomy-supply despair too.

Fri Jul 24, 2009

Robin is thriving. We are thrilled to imagine possibilities for Max. But we still hope to ignore their recommendation on this trip.

Sun Jul 26, 2009

Mon Jul 27, 2009

As soon as we see the beautiful canals of the city, it all feels worth it.

It doesn't matter that tall brick buildings like the one housing our apartment have huge metal hooks hanging from their roofs. These hooks are essential for moving large heavy items into places like our 3rd and 4th floor-level apartment. But we have no rope or pulley for getting 9 days of IV nutrition (3 are extra backups) up that way. So the heavy fluids (and all of our suitcases) get lugged up the terrifyingly steep and narrow flights of steps.

The apartment is spacious, light, and gorgeous. It is long and narrow, so that Randy and I and the kids can take two bedrooms at one end on the 4th floor, and hopefully not disturb the sleepers in the bedrooms at the other end (Kristin in one, Ken and Anna in the other, Michael Frank to join on the couch downstairs for one night).

We spend the groggy afternoon getting oriented, after picking up some deliciously aged gouda and bread and making a meal of it outside Westerkerk, the church where Rembrandt was buried. We walk past the Anne Frank House, and its long line of visitors. We make our way to Central Station, where we pick up tram passes for the week. The kids are tucked in and sleeping by 8pm, and we marvel over Indonesian take-out at their smooth transitions.

It doesn't matter that both boys wake a couple hours later and scream until midnight, or that once they're finally both settled again, Randy talks in his sleep and wakes Kai.

We're here. We can't wait for tomorrow.

Tue Jul 28, 2009

After a leisurely morning (with Max sleeping until 8:00 and Kai until 10:00), we board the tram right outside our apartment. We ride it north to Central Station, where we pick up a canal boat. Max could do this all day, riding new forms of transportation and taking in the scene -- tall, narrow houses rising up from the water, bridge after bridge for our boat to pass under, people of all ages on bicycles everywhere.

But we pull him off at the Van Gogh Museum. He runs around the big open spaces, and rides the glass elevator and escalators. The modern art exhibit is his favorite, with a large Jean Tinguely scrap metal sculpture that moves and creaks and groans when you push a big red button on the floor nearby.

Kai nurses during the canal ride, and sleeps through Van Gogh. Ken is amused when I take him back to the exhibit after he wakes up. I show him Van Gogh's least popular paintings, the ones with no crowds so that I can push Kai's stroller right up to them.

Both boys seem to appreciate the profound implications of subtle angle variations in Mondriaan's work at least as much as our resident skeptics, Kristin and Ken.

We walk to a nearby playground, which features a swing big enough for our entire family. Ken pushes us higher and higher, to the delight of everyone else in the family, while I find myself asking about the weight limit. We wander through Vondelpark, a beautiful public park and one of the few places that Randy and I recognize from earlier trips. After a quick dinner at Wagamama, we get home the old-fashioned way, on foot.

Wed Jul 29, 2009

I ask him this morning what he wants to do today: boat ride, park, museum, climb the steps of Westerkerk, or flower market. He gives me a confused look, like maybe I've lost my mind. He reminds me that we just did the boat ride yesterday.

But in Amsterdam, we take boats like taxis. When we hop on one today, Max narrates excitedly throughout the canal ride about other boats we pass. He may have thought we were done with boats, but I don't think he can get enough.

The stops on either side of the taxi ride are also chosen with Max in mind. The first stop is the Magere Brug ("skinny bridge"), the most famous of the 1200+ bridges in Amsterdam. Our guidebook promises that we won't have to wait long to see it in action, and sure enough, after a few minutes, the bridge master comes bicycling up. He shoos us off the drawbridge, then raises it so that a boat can pass underneath.

I only recognize how much our activities are geared toward the kids when I invite Anna (who arrives this morning) and Ken to join us on our second stop. Their daughter Sasha is back at home with her grandparents. It takes me a minute to register Ken's response -- that he would rather go see a museum. I suppose that taking a boat taxi, followed by a tram, and then trekking to see one of Amsterdam's few remaining windmills isn't necessarily the most fun for all ages. It turns out to not even be the most fun for the ages we have in mind, when we arrive at the windmill just after it has closed down for the day.

But we enjoy the adventure of getting there, and the walk through the quaint town of Sloten. Max doesn't even seem particularly disappointed by "windmill not working." The longer-than-expected outing causes Randy and me to miss the evening's conference boat cruise by 15 minutes. Kristin encourages us to make a night of it anyway, so Randy and I relax over a delicious Peruvian date-night dinner on the canal.

All courtesy of Max's Amsterdam.

Thu Jul 30, 2009

As Randy finishes answering questions, an alarm from his electronic calendar boings and pops up on his computer screen, and appears on the huge video screen projecting his talk to hundreds of conference goers. "Do Max." It is almost 10 am in Amsterdam -- almost 2 am in Boulder, where it would be time to replace Max's Omegaven and do his other early morning cares. (I did them this morning, since Randy and I are on the same overall sleep schedule here, so we are alternating who gets up in the middle of the night.)

Randy closes his alarm. The audience applauds his talk, which serves as the kickoff to the conference. I'm so proud of all my guys -- however many you count.

Fri Jul 31, 2009

Soon after we arrived, Randy jokingly asked why every city isn't designed around a ring of canals. This beautiful setting, and the walk-ability and easy public transportation of the city, have certainly helped us to explore with few set time-lines or goals. But canals or no canals, it seems like we should be able to bring some of this relaxed mindset home with us, to occasionally manage similar breaks from work back in Boulder.

Getting an apartment with a refrigerator to house Max's meds has allowed us to have conference friends over every night (our friend Lael from grad school days last night, Randy's collaborator Christian tonight, and Liz Spelke and her son Joe tomorrow), before getting the boys tucked in and heading out for dinner. (Max rests quietly with Kristin until it gets dark out, then informs her: "I'm weddy for you to weave my woom now, Kiki.")

We check email only daily, rather than constantly -- thanks to high roaming charges when we're out and about, sporadic wifi availability at the conference, and wifi not reaching up the steep steps of the apartment to our bedrooms.

All of this represents a major shift in mindset for us.

Kai's new mindset is being a social animal. When Kristin brings the kids to the conference today, we sit outside enjoying a picnic lunch. Kai babbles loudly to catch the attention of any passers-by, then gives them scrunchy-nose smiles to keep their attention as long as he can.

I have a hunch that Kai will have better luck bringing his vacation mindset home with him.

Sat Aug 1, 2009

So we proceed to rent bikes from a vendor in Leidseplein, Amsterdam's liveliest square. Suddenly, the cyclists that have seemed so crazy to us all week (always on the verge of striking a pedestrian) seem quite reasonable. The pedestrians now seem clueless (always on the verge of stepping into the red bike paths that run alongside each road and canal).

We ride west to Vondelpark. On its spacious paths, the ride turns peaceful, beautiful, and fun -- the perfect way to tour. Until Randy kicks Max in the face.

We are accustomed to biking with the kids in a double-wide trailer positioned behind the back tire. Here, they get strapped in to hard plastic single seats fastened to the bike itself. Kai rides in a seat on Randy's handlebars, waving his arms excitedly with the breeze on his face. Max rides on a seat behind Randy's, occasionally grabbing hold of the top of Randy's shorts. His grabbing apparently does not provide enough of a reminder. Randy dismounts the bike in his usual way, putting his right leg on the ground, and swinging his left leg over the back of the bike. And kicking Max in the face.

The first time, Max is stunned but recovers quickly. The second time, when Randy almost catches himself in time, Max seems quick to forgive him. Luckily, there is no third time.

The ponds and trees and playground of Vondelpark hide the frenzy building across the rest of the city. We stumble into it as we head north to the bohemian Jordaan neighborhood, then east to the Scheepvaart (Maritime) Museum. All of Amsterdam seems to have spilled out into the streets, for the annual Gay Pride Parade. Of course, being Amsterdam, the parade proceeds through the canals. We transition from the tranquility of Vondelpark (where there are strict prohibitions on noise) to riding alongside boatloads of revelers dancing to blaring techno music. We try to navigate our bikes around not just the usual flow of pedestrians, other cyclists, and trams, but through hundreds of thousands of parade-watchers.

Kai manages to fall asleep in the commotion, slumping over in his plastic seat. Several people stop to take his photo. When one person asks for permission, I think, "Like father, like son." A conference fan asked Randy to pose for a photo with her the day after his plenary address.

It's hard to believe that the party is just beginning. But when we walk to dinner with Liz and Joe a few hours later, we find ourselves unable to move at several points, crammed in among the celebrants. We eventually reach our destination to enjoy the best rijsttafel (18 small spicy dishes served with rice) of the trip. The party has finally started winding down when we walk back to our apartment around midnight.

We have done as the Dutch do, and feel ready to return home.

Sun Aug 2, 2009

The domestic moments of travel somehow hold a special appeal for me -- searching for our local grocery store the day we arrived (and finding it near the bloemenmarkt, Amsterdam's famous floating flower market), and trying to decipher our apartment washing machine. (I think we did manage to actually get our clothes clean, unlike in Paris, though the confusing settings suggested it may have taken 9 hours.) And I loved Kristin's fun routines with Max, like putting colorful pills in a glass of water each morning, and coming home at day's end to discover the sponge stingrays and dolphins that emerged.

Kristin also discovered the most fun place in all of (Max's) Amsterdam. When she and I arrived at TunFun, an underground playground, after Randy's talk, we were surprised to see that we had to pay to get in. But we understood immediately upon entering. Max ran down the two stories of switchback ramps to the ground level, romped in cages filled with balls, climbed through obstacle courses, bounced on an inflated version of an Amsterdam street, and set up and knocked down bowling pins. Then he gravitated to the tough back corner of the playground. Three older boys were making giant LEGO forts amidst graffiti-strewn walls. They were bullying away a boy around Max's age when we arrived. Max jumped right in, stacking LEGOs as high as he could reach, then handing LEGOs to the bigger kids to stack. One of them turned to Kristin, and declared, "He is okay." They started lifting Max up to stack LEGOs on top of the fort. As soon as each fort was completed, the older boys kicked it down with a huge clattering, with Max squealing and joining in.

But my favorite moment here is the same as in Paris -- no single favorite, just the daily wanderings with the boys in any direction, walking or hopping on boats or trams.

Kristin's moment came riding the train home from the conference. Max watched out the window contentedly as the sights of Amsterdam passed by, while Kai concentrated on a woman cooing at him in Dutch.

Randy's favorite moments came during our bicycling adventure.

Raising a kid with special needs has been likened to traveling to Holland, when you were expecting Italy. Holland is fabulous.

Wed Aug 5, 2009

When: Saturday, August 8, 3-6 pm

How: With space, time, and number. ABSOLUTELY NO GIFTS. But please wear something -- a shirt, a hat, a piece of jewelry, a cut-out from a magazine -- that shows anything related to maps, calendars, clocks, counting, etc. Or just wear a watch, or whatever you wore last year -- vehicles are still a big favorite.

Where: Our home.

We'll provide drinks, snacks, and birthday cake. Any updates to the plan will be posted here.

Fri Aug 7, 2009

Sat Aug 8, 2009

Today's wait is short -- less than an hour for Max and Kai to finish napping after our party starts. Waiting for them to wake means that they are overwhelmed and fussy when they groggily discover the party, but well-rested and happy for the rest of it.

The months' long wait for our back yard to be kid-ready means a fun party. The kids (including 3 Kai's and 2 Max's) squish sand between their fingers and toes. Max also gets a mouthful when he comes in too close to some vigorous shoveling, but he recovers well after a round of spitting. The grass feels especially plush under the bare feet of Randy and me -- we have never had a yard with grass before. No one falls into our deep (now blocked off) window wells. Max does manage to discover how to escape through the gate to the front yard, but 5-year-old Henry takes responsibility for shepherding him back each time. Kai has brought his Amsterdam mindset home, and happily gets passed from Great Aunt to friend to student.

I'm not sure people think it's worth the wait when we keep them guessing about the meaning behind our time-space-number costumes. Max wears a map of Amsterdam on his front briefly (until he rips it off) and a -1 on his back. Kai and Randy have 0s on their backs. Kai's map is of our house; Randy's is of Boulder. I wear a map of Berkeley, and a 1.

As the last guests leave, Max is trying to prolong a game of chase. He starts talking about having another party. This time, the wait should be a little shorter.

Party photos by Seth Harris.

Sun Aug 9, 2009

I have been lunging with a desperate "YES" at anyone who offers to help us move, while Randy has been scoffing at the idea that we would need any help.

We leave in 10 days.

We will be working across 7 of them. We won't have child care on the other 3.

Today is one of those 3 days. We are granted a best case scenario, with both boys cooperating with big naps, then joining on a two-station-wagon drop-off to Goodwill. Randy and I are able to devote 12 combined hours to moving. We also recruit help from Nana, who is visiting for a long weekend. With all of that effort, we get through 75 percent of... the kids' toys and books and gear.

Randy takes this as a good sign. The time does also include my sentimental picture-taking before saying good-bye -- to the carseat we brought Max and then Kai home from the hospital in, to the stroller the carseat fits in if you remember the right plastic piece, and to their baby swing and activity center.

But we haven't touched anything other than this subset of the kids' stuff.

I will keep lunging, Randy will keep scoffing.

Mon Aug 10, 2009

Whatever the reason for my emotions, it helps to have such a good cause. Carter's family is starting a consignment website for children's clothing, with proceeds to benefit short gut kids. The link should be up soon, for donating or purchasing clothing -- check Carter's site or the short gut wiki or back here for updates.

Tue Aug 11, 2009

We're buried under bins and bags and boxes. I updated my facebook status last night to say that I need to hear from the people who say that packing up your family for a year is totally worth it. The reassurances are coming in from academic and special-needs friends who have moved for extended stays up to 8000 miles from home. They say that the hassle is definitely worth it -- even if it may not feel like it during the month before we move, during the move itself, or even during the month after we move.

I want reassurances that work this well for the news on Max. He has gained little to no weight in the last 3.5 weeks, despite the recent increase to his TPN. He is falling back off the charts. His TPN is maxed out in terms of the dextrose concentration that his GI team is comfortable with, so we can't increase his calories unless we increase his time on the pump, from the current 12 hours overnight. His enzymes are creeping up, possibly as a result of the high dextrose concentration taxing his liver. We are battling leaky mic-keys again, which have led to 3 bag changes per day for the last several days. These changes have felt grueling yet manageable, but they feel tragic in the context of Max's weight. Leaking of stomach contents means that he cannot get in the feeds he desperately needs. His stoma output has been higher than usual the last few days. Dr. Soden notes that Max also has some gas in his ostomy bag, another symptom that we have noticed in recent days. These symptoms may signal bacterial overgrowth -- too many bad bugs relative to good bugs in the gut's delicate balance. Dr. Soden wants to try a round of antibiotics, and if that treats Max's symptoms, to try cycling antibiotics every month. This is a common routine for short gut kids, but one that we have hoped to avoid. Max has taken antibiotics to treat bacterial overgrowth only twice, back in May and August of 2007. But Dr. Soden has long suggested that Max might be able to handle more feeds under a more aggressive antibiotics treatment.

Randy wakes after Max and I return home. Upon hearing my update, he starts providing the reassurances. Max's height is up, which is encouraging. He may look like he's not gaining weight only because he is dehydrated from his high stoma output. The difference in fluid can have a big impact on weight. If so, just getting Max's fluids back in sync could make his weight look more encouraging, with no pressure to increase his TPN hours (and even hopes of decreasing his TPN and helping his liver), and no need to worry so much about his reduced feeds on top of dealing with the hassle of his leaky mic-key. His fluctuations in stoma output could just reflect a passing cold, with no need for antibiotics.

I hope all these reassurances turn out to be right.

Wed Aug 12, 2009

Thu Aug 13, 2009

I get my answer a few minutes later.

Yesterday morning, Kai moved his knees forward four times (left, right, left, right), to position himself to grab a DVD case. I squealed in excitement, but Kai concentrated on his video prize, then on Max trying to grab it from him. He seemed to have no realization that he had moved himself.

He has been leading everyone on for weeks. Baba and jiji were certain they'd witness his first crawling during their visit. Kristin thought she would see it in Amsterdam. Then we figured that Nana would be the one.

After Kai and I finish watching the video of Max tonight, we go to Max's room, where Randy is getting him tucked in for the night. I set one of Max's trucks outside of Kai's reach. He shimmies over for it, wobbling around while mostly maintaining a sitting position -- a move that has served him well for over a month. Then I roll the truck several feet away. He gets a little more of a forward knee motion in, and stretches to grab the toy. Then he starts crawling across the room.

Max can't stop giggling.

It is a funny crawl. Kai's right knee looks like it's part of a normal crawl, but his left knee never touches the ground. He holds that leg in more of a squatting position. Right knee crawls forward, left foot squat-steps forward, right knee crawls, left foot steps.

Kai makes his way over to Max's IV lines. Max exclaims, "Baby's grabbing my tubeys!" And he continues giggling at him.

I am a blubbering wreck. The couch potato who has been content to be carried everywhere in my arms, squeezing his legs around my hips when he doesn't want to be put down, can suddenly get himself where he wants to go.

Just in time to get strapped into his carseat for the long drive to California.

Fri Aug 14, 2009

Sat Aug 15, 2009

Sun Aug 16, 2009

I have been sleeping in a t-shirt from my high school days. Max points out the holes in it in the mornings. Preparing to move has inspired me to finally throw it out. Today, I donate jackets from my college days (renewing my sense of nostalgia for the Bay Area) and the first grown-up outfits that I bought when I started teaching.

One of my graduate students from that era stopped by yesterday with her family. Max saw that 3-year-old Caroline was wearing a cute jumper. He then insisted, after Randy finished his cares, on getting out of his pajamas. Unprecedented. He put on a shirt. Randy tried to put on his pants, but Max refused. Caroline wasn't wearing any, after all.

If anyone in our family is going to bring Berkeley fashions back to Boulder, I think it will be Max.

Mon Aug 17, 2009

The Australian family will move into our house the morning after we move out. They stop by this afternoon to see the place. Their kids jump on the beds, start making plans for their rooms, rummage through our open storage bins, and try on our velvet graduation caps. The 5-year-old boy sees Kai, and asks if the baby can stay with the house. The 7-year-old boy asks the same question of Neko. Max feeds off of their energy, jumping on his trampoline, and happily agreeing to let the boys stay in his room for the year. The mom asks what the protocol should be if their family breaks something. One of the girls (one is 11, the other is 12) explains that the boys are the ones who break things.

We'll move out Wednesday. We won't leave the baby, the cat, or anything fragile behind.

Tue Aug 18, 2009

Randy and I lose most of what is supposed to be our final day of packing. I knew I'd be sitting in a dissertation defense this morning. But we didn't know that Randy would spend this time trying to resolve a snag in our final delivery of medical supplies. He ultimately decides that he should spend the afternoon driving down to Denver to pick it up himself.

Kate loses her wallet. She is supposed to start her drive to California tomorrow, like us. I watch the boys this afternoon while she searches in vain, then puts holds on her credit cards.

Grandma and Grandpa's luggage gets lost by their airline.

Max loses his entire stomach contents when his mic-key balloon pops during his nap. I can't find where the replacements have been packed away.

But by evening, the medical supplies from Denver are safely stowed in our rental truck, Kate has found her wallet amidst her boxes, Grandma and Grandpa's luggage has been located and is on its way to our house, and Max's new mic-key (located immediately by Randy upon returning from Denver 10 minutes after Max's nap) is in his stomach.

We can only hope for a similarly-smooth resolution to our lost day of packing. Grandma and Grandpa put in a heroic 16 combined hours toward heavy lifting of moving bins; emptying of pantries, kitty litter, and fireplace ashes; driving the rental truck to Kate's apartment so she can load her things; playing with the boys; and replenishing all of us with ice cream, perfect with fresh Colorado peaches dropped off by Aunt Carse.

The three of us last until 1:30 am. The house does not look like we can leave tomorrow. Our hopes are with Randy, who has a couple hours left in his regular wake cycle.

Wed Aug 19, 2009

When she came over with Maya and Mateo to say good-bye yesterday, she shared the strategy that has worked for their road-trips: Wait until nap-time to put the kids in the car, take breaks from driving after they wake, then drive late into the night while they sleep.

I explained that this strategy wouldn't work for us, due to Max's evening hook-up to his pumps, and Grandma and Grandpa's likely preferences.

But we end up leaving at 2 pm. Even with Randy's amazing packing efforts until 4:30 am, it takes another 10 combined hours of help from Grandma and Grandpa (with Max eagerly contributing by pushing an empty bin up the truck ramp) before we're ready to hit the road. It takes another minute for Randy to realize that we're leaving without Neko. We leave with him at 2:05.

We end up taking breaks from driving after the kids wake from their naps -- for an ostomy bag change in an Arby's parking lot, a Safeway stop for cat food. (Remembering Neko didn't remind us to bring his food.)

And we drive until midnight, to reach our reserved rooms in Riverton, Wyoming. We hook Max up, 5 hours late. Kai screams for an hour during the night. Nothing will soothe him with his rhythm off.

We're exhausted -- and hoping to do a better job not following Corrie's advice the rest of the trip.

Thu Aug 20, 2009

This afternoon, we discover that the road through the Shoshone National Forest in Wyoming is deeply under construction -- bumpy, dusty, and congested. We pass giant backhoes, graders, and dump trucks. "This is the best road ever!" Max declares.

He has no idea where we're going. But neither does anyone in our car. Grandma and Grandpa planned our route and made the hotel reservations, and now are leading the way. We follow their truck, enjoying the winding roads and views of rock cliffs, blissfully free of any thoughts about destinations.

Randy makes our state-of-mind obvious to the park ranger who asks if we have any questions as we enter. Randy says he'll go with the obvious one: When is Old Faithful erupting? The ranger gently suggests that Randy might ask that question when we get to Yellowstone. She hands him brochures for this place, Grant Teton National Park.

We eventually get to Yellowstone. We stop to wander around the bubbling deep blue thermal pools of West Thumb Geyser Basin. At our next stop, we end up missing Old Faithful's eruption by 10 minutes. We decide not to wait the hour or two for the next eruption. As a result, we get treated to a spectacular sunset drive along the Madison River. Neko enjoys the views from Kai's lap. By 10 pm, Max is hooked up in our West Yellowstone hotel, and Kai is crawling around after Neko. We're ready to enjoy the destination, too.

Fri Aug 21, 2009

The main exception is that Max vomits across the wee hours of the morning. I wonder if our ice packs didn't get cold enough in the hotel freezer in Riverton, so that his formula spoiled during yesterday's drive. Randy wonders if Max has caught a virus. Both of us imagine trying to drive with this turmoil happening in the back seat.

But whatever the cause, the vomiting stops when day breaks, as suddenly as it started.

We're on track to hit the road before noon for the first time this trip. But our unexpectedly long wait for coffees and breakfast burritos to-go gives us time to run around a park, do a curbside bag change, and then shrug our shoulders about the schedule and enjoy a relaxing picnic breakfast.

Even with the delay, we arrive at our destination of Twin Falls, Idaho while it is still light. Max notes this unusual event, exclaiming as we pull into town, "It's day!"

We walk along the rim of the breathtaking Snake River Canyon after dinner. Randy shouts at the alarming sight of someone jumping off the record-high Perrine Memorial Bridge in the distance. Then he sees the parachute open. We rush over in time to watch a second BASE jumper, then a third, in quick succession.

I guess there's only so much looking you can do before you leap.

Sat Aug 22, 2009

Sun Aug 23, 2009

The boys have been cooperative travelers, all things considered. They have settled into the rhythm of taking a single, synchronized afternoon nap while we drive. Kai and Neko prowl together each night, investigating the new hotel room. Max got down on his hands and knees to join them last night in Reno. Kai has started to use sign language on this trip. "More" was his first sign, 3 days ago. The next day, he put it together with "eat," repeatedly asking: more eat, more eat, more eat. During yesterday's drive, Max started alerting us when it was time to break out the snacks: "Baby's signing more!"

Our final, 3-hour leg today turns into 7 hours, with stop-and-go traffic across the California drive. We feel exhausted but ecstatic upon reaching our rental home in the Berkeley hills, a tree-house in the sky. Max captures our feelings, running in circles around the living room, waving his hands around his hand, and proclaiming, "I love my new home!"

Mon Aug 24, 2009

So I savor the luxury of the time that Max and Kai get with their grandparents -- with baba and jiji out from Ohio for 5 weeks this summer, Nana's regular visits to Boulder from southwest Colorado, and now, this heroic move. We knew that Grandma and Grandpa were orchestrating our transition, but now we see just how impossible this whole adventure would have been without them.

They aren't romanticizing their labors. Grandpa's job as a public information officer with FEMA is unpredictable -- he can be called away for a disaster at any moment, for any length of time. But he could assure us, just a few hours into this visit, that he would definitely be working for FEMA and unavailable when we move back to Boulder in a year.

We want to at least treat them to lunch before they leave today -- at a restaurant that doesn't have a sign in the bathroom stating that employees must wash their hands before returning to work. Instead, Grandma and Grandpa venture out on the twisty roads to bring back breakfast, unload our stuff from the truck, drive the truck with Kate's stuff to her apartment, then continue home to LA.

We'll look forward to more relaxing visits with all the grandparents throughout the year.

Tue Aug 25, 2009

I find myself suppressing that same smile and wave this afternoon, as we run errands in town. I can't get over how many Asian Americans we see at the grocery store. I resist the urge to join the two older women standing behind the checkout line, chatting away in Japanese. I hold back from comparing life histories with the Caucasian and Asian parents of the girl Max plays with at IKEA.

But I'm smiling and waving on the inside.

Wed Aug 26, 2009

Living in the hills brings fabulous views. We watch the fog burning off in the mornings to reveal the city of Berkeley and the San Francisco Bay beyond. We watch the fog roll in with the sunsets. We catch glimpses of the Golden Gate Bridge during clear afternoons.

But the terrain is so steep and uneven here that I can't figure out the route to get next door. I am picking my way down the embankment between our houses when Randy spots me. He directs me back up the embankment, past our house, through a concealed gate, and down a similarly-steep embankment.

There, Max is playing with Charlie and Leo, who are 2 years old. They are highly responsive to Max's commands to run and chase. They have a sandbox dug into their hillside. I suspect we'll get to know this route well.

Thu Aug 27, 2009

I wake Randy this morning so we can skype in for a weekly research meeting back in Boulder. I don't see how we can manage this meeting on top of everything we need to do to get settled here. Randy reminds me that we foresaw that we couldn't possibly manage it, so we are not expected to attend this one.

My lab manager phones to coordinate urgent funding matters back in Boulder. While we work through the details, Randy gets a call. He shouts in disbelief. Our renters in Boulder are calling to ask what they should do with the large box that just arrived for Max. The box is marked "refrigerate upon opening."

Luckily, we planned for snags like this during our transition. Our extra supplies here should last until Max's TPN delivery can be picked up from our house and rerouted to Berkeley.

Fri Aug 28, 2009

I explained that it's funny to talk about baby-sized sips of beer, since babies aren't allowed to drink alcohol. You can't drink alcohol until you're 21.

"No," Max protested. "Can't play that tard game til you're 21." When I talked with him the day before about how he is half Japanese, he corrected me, saying that he is three -- and can't play that tard game until he's 41.

If only he were so patient about all his vices.

Sat Aug 29, 2009

We start with a stop at Berkeley Hardware to buy nails, for childproofing the deck off of our family room. Then we drive around town searching for a bookstore. We don't bother to look up a specific store, since we figure that bookstores will be like Thai restaurants here -- one on practically every block. But the bookstores here seem more like the day cares and preschools -- they must be around somewhere, but you don't just happen across them. We finally spot the university bookstore. I pick up some maps, and we head for the Bay Bridge to San Francisco. This is the first of three bridges we plan to show Max today. He excitedly points out the island in the middle of the bridge, and the sailboats on the water.

We go for the full tourist experience with a stop at Fisherman's Wharf. We have forgotten our stroller, and Max is too hot and cranky to walk, so Randy and I each carry a kid, inching along with the sweaty crowds taking in the street performers and scene. Max insists on stopping at an overpriced sit-down restaurant for lunch. But we emerge much less sweaty and cranky afterward, to enjoy seeing the sea lions at Pier 39 and the views of the city. Max pleads to go on a boat. "Another time," Randy promises. Kai has been alternating between giving severe frowns and crinkle-nose smiles to capture the attention of strangers. During our walk back to the car, he holds his hand up and slowly rotates it back and forth, as if the crowds have gathered to watch his parade.

We head to the Golden Gate Bridge -- the bridge on today's loop tour that Max talks the most about. But he sleeps through our drive over it, through our stop at the viewpoint just after it, and through the industrial Richmond-San Rafael bridge back toward Berkeley. Randy suggests that Max and Kai should compare notes, since they were awake and asleep for complementary bridges.

When we return home, Randy finishes nailing in the wiring to prevent the kids from falling between the slats of the deck railing to the steep hillside far below. I continue unpacking bins. We're still far from settled. But now we feel more like we'll get there.

Sun Aug 30, 2009

People have told us that it's not really possible to bike around our neighborhood. But we figure it's worth a try. We're mountain bikers, coming from Boulder, after all.

The kids normally calm down once we start moving. The only problem is that we can barely get moving. Our altitude advantage might have helped us -- a week ago, or if we hadn't eaten our way through drive-thrus across 5 states.

Kai calms first and burbles away to himself. The rest of us all cry in our own way as Randy and I struggle around each impossibly steep bend to see an even steeper one ahead. I imagine beetles passing us by.

We make it to the boundary of Tilden Park. We have traveled less than a mile. Randy and I are drenched in sweat. Max is still complaining. We had envisioned the park as an oasis of flat paths to cruise around on, but it appears as steep as everything else. We can only travel downhill from this peak, and we can't imagine making it back up any more hills.

So we turn around. We race back down the hills to our neighborhood playground, where Kate has been taking the boys. The playground is terraced into the precipitous hillside. The top level fits a slide and swings, where Max and Kai giggle away, at last.

Now we know something too.

Wed Sep 2, 2009

Not that I need help remembering to appreciate what I have. We're happily settling into our beautiful, quirky house. (The upstairs sink runs only cold water for the first minute, then only hot water after that. The oven is non-functional.) I am loving getting to know this side of the Bay. (Take-out dinner tonight from Cha Am, the Thai restaurant that comes closest to being on our block, is deliciously fresh and spicy. Kai eats his usual fistfuls. Max's appetite makes a comeback for the meal, after a prolonged lull around reflux that has lingered since our trip -- probably viral.) And the lab group that I'm here to learn pediatric brain imaging techniques from has given me a warm welcome over the last couple days, over meetings, tours, and a Persian lunch.

I feel no need to yelp.

Thu Sep 3, 2009

We disagree on whether one of us claimed as we were leaving the house that the route had been totally scoped out, then indicated that directions were not needed during the phone call. We spend a long time disagreeing about this.

But now we've definitely scoped out the route.

Sat Sep 5, 2009

Jeff went to Cal (UC Berkeley), and likes to play up the rivalry between Cal and my alma mater. So he was shocked to see Max in a Cal sweatshirt one day. He was even more surprised that I couldn't remember which of my family members had given it. I confessed the dark secret: All of my siblings-in-law went to Cal as undergrads -- my sisters' partners, and my partner's sister.

Uncle Mike kicks off the Cal-Alum-siblings-in-law-tours-of-Berkeley this weekend, after driving up from LA with Auntie Naoko. He introduces us to both popular hangouts (like The Cheeseboard Pizza Collective for lunch, where we have seen the crowds lining up and eating on the median strip) and a Pakistani hole in the wall (Kabana, which we never would have found on our own). He explains the mystery of the concrete slides we have seen at our local park and heard about at other parks. (You slide down on cardboard.) He gets worn out wrestling with Max, who is clearly feeling much better after kicking his virus.

We introduce Naoko and Mike to our nook of Berkeley. We drive up to Tilden Park this afternoon, where we ride the scaled-down steam train -- over a bridge, past other trains, and through cool, dark tunnels, where all the kids squeal and Kai nestles into me. This outing is perfect for Max, until he sees trains that we can't ride -- in a hobbyist area, where people work on their own wagon-size engines and ride them around a track. We explain to a wildly protesting Max that you have to bring your own train here. Next time, he says, he'll bring Emily and Gordon and Percy. We end the day with a sighting of 6 wild turkeys in our back yard. I had told Naoko and Mike that we see them regularly, and I thought I had seen them fly but couldn't believe it. They share in the apparent hallucination, watching fat turkey after fat turkey lift its body skyward, flying to roost among the towering redwoods outside our family room.

We'll hear Aunt Katie's alumnus perspective in November, maybe even joining her to root for Cal at a football game. And we'll get Uncle Dave's take on our newly beloved hometown in December, during a visit with Cousin Toshio and Auntie Junko.

And I'll probably never hear the end of it from Jeff.

Sun Sep 6, 2009

And there is no mistaking what Max is demanding at a party this evening at the Mill Valley home of Randy's high school classmate. "I want beer, Daddy!" (We have heard that a taste for alcohol is common in short gut kids.) To everyone's amusement, Max enthusiastically answers Randy's questions: How old do you need to be to drink beer? 21! How old are you? Free! Then, he goes right back to his crystal-clear demands.

Eventually, Max gets convinced to run around with the mobs of kids at the party. Maybe this outing will help to ease Naoko and Mike's departure this morning. Only the back-of-the-mouth consonants still seem unusually difficult for Max. He states repeatedly, "I want Nato and Mite not leave."

Mon Sep 7, 2009

Randy and I now have more accurate expectations about the terrain. We have also improved our diets. (I'm not sure exactly how healthy our feasting-tour of Mike's favorite restaurants from his college days was, but it must have been better than the fast food days preceding our first biking attempt.) And we're hoping that first ride strengthened our sprint muscles just a bit, for powering up steep inclines. And our endurance muscles, for continuing to power up steep inclines. Our tires are firm, after Randy realizes at the start of today's ride that the Colorado air we pumped into them needs to be supplemented closer to sea level.

Our ride to the park is a breeze.

But the biggest factor is that it's a different park, downhill from our house. This park is also terraced, with the play area for the youngest kids at the top, but each terrace is bigger and nicer at this park. Most importantly, there are other kids -- something we've never seen at the other park, and something we really want for Max, since we may not have preschool options for him here. Max takes advantage, racing with a girl his age from the top terrace down to the next. Her father, and Randy and I, have no luck trying to convince them to race back up the hill (or to leave their play area by any means) when it's time to go home.

Our ride home is not a breeze. But Randy has identified the most gradual way to make the climb. It is close enough to manageable that things look even better for future bike rides.

Tue Sep 8, 2009

One of our first impressions upon moving to Boulder was that people don't use umbrellas. Randy and I were running an errand when it started to rain, so we broke out our jackets and umbrellas. Everyone around us acted like it wasn't raining. Maybe we've adopted the same attitude, so that Max doesn't know about umbrellas. That should change during the relentlessly rainy winter that we've been warned about here.

The nurse points to the next picture. Max stares blankly at that one too. It's a house. Then he looks back at the umbrella, and says "J." The handle does look like a J. "Oh!" the nurse exclaims, "He knows his letters?" She pulls out the letter chart that they use for older kids. She points to the T, the O, and the H. He names them all correctly. He calls a V a U, so she skips that one for the test. He labels all the letters she points to correctly, row after row. Other nurses stop to watch. Max suddenly refuses to label any more. That puts his vision at 20/25 -- taking after Dad rather than Mom, fortunately. One of the nurses follows after us, to ask whether I've done special drills to teach him letters. (No.) I feel a little better about the fact that we are unlikely to find a preschool spot for him during our year here.

The route to this medical facility actually does take only 20 minutes when you know where you're going. Good thing. The referral to our new GI doctor is now in, and we'll be back to the same building next week to see her.

Wed Sep 9, 2009

Thu Sep 10, 2009

That just doesn't seem to capture it.

Kate has been with us since the day Max turned 1 year old. She explains to him that he was the same age as Kai is now -- just a baby. She has been in Max's life for as long as he can remember. He calls for her at the park this evening, each time he finds something interesting he wants to share. "Hey, Kate!" Randy and I have biked here with the kids again. We ask Max, "Do you see Kate anywhere? How about, hey Mommy, or hey Daddy?"

And Kate has been in Kai's life from the beginning, staying at home with Max all day and night and all the next day when Kai was born. (She and Max went to a pet store and looked at mice.) At the height of Kai's stranger anxiety, he would scream at the sight of anyone other than members of our immediate family or Toshio's, or Kate.

Randy and I have often remarked that Kate has made this year in Berkeley possible, by making the move with us. But really, she has made our family and our work and our lives as we know them possible.

Max seemed perfectly satisfied with Kate's answer, though.

Fri Sep 11, 2009

Sat Sep 12, 2009

Randy and I were stunned the first time we saw a bus careening around these steep hills. They don't do it all that often. The bus closest to us doesn't run on the weekends. The further bus is not that far, but it is uphill. We stop to catch our breath and shed layers on the way. We arrive at the stop, and we wait. And wait. This bus comes once an hour. We had to catch this one, to fit in our plans for a public transportation tour -- from the #65 bus to the BART train to the Bay ferry. But ultimately, we must explain to Max, the thing about buses is that you sometimes miss them.

Sun Sep 13, 2009

Otherwise, the party is a hit. Randy's high school classmate notes that after living in Berkeley for only 3 weeks, it's pretty good to already have a houseful of kids. Max makes a grand entrance, waking from his nap an hour into the party. He jumps into the fray in his bright red pajamas, still his outfit of choice. (And we can finally access Kai's clean clothes and change him out of his food-stained pajamas.) The kids play with trains and (miraculously) with Neko, and run around together just as excited about spider-sightings as they are about turkey-sightings. Randy and I catch up with old friends (from high school through grad school eras), and continue to get to know new ones.

Max has been eager for more time with other kids. He spin in circles in the living room, declaring, "I'm so excited!" And Kai recovers quickly from the fright of the birthday-cake ritual. His repeated attempts to grab the flame on his single candle are thwarted by Randy. We think Kai wants to eat the flame. (At night, he often signs "light." When we hold him up to look out at the sparkling lights of the city, he then signals "eat.") But he quickly transitions to double-fisted enjoyment of chocolate birthday cake.

After the party is over, Max plays with two plastic spoons. He asks for more, but I explain that we need to save the rest. We have been trying to teach him not to waste resources, that paper stuff comes from trees, and saving is good for the planet. He agrees to stop at 2 spoons so we can save the rest -- "for de nedst party!"

Party photos.

Mon Sep 14, 2009

Tue Sep 15, 2009

Thu Sep 17, 2009

Fri Sep 18, 2009

Sat Sep 19, 2009

We arrive in Menlo Park this afternoon, at the beautiful home of a friend of mine from college. The place is incredibly tidy. I remember how shocked we were during Naoko and Mike's recent visit, at how neat the home of a friend of theirs was. Randy asked if she had just cleaned it. She said no, it wasn't particularly clean. Naoko explained our shock by saying, "You should see their place." Her friend replied, "Well, they have kids." Naoko countered that our place was never particularly neat before the kids came along either.

Well, they have a 15-month-old here, Kylie. And another baby due later this year. And my friend's wife makes us feel warmly welcome, all while popping in and out of the gathering since she is on-call for her medical practice.

A college boyfriend is here too, with his family. His wife has brought a birthday gift for Kai. And a delicious potato salad, to add to the artfully arranged platters of fresh cut fruits and vegetables.

No one else looks like they are wearing the same clothes they wore yesterday.

We arrive late. Kai is soaking wet -- we have forgotten to change his diaper. I set him on the changing station, and rummage through his diaper bag, hoping. Miraculously, we have actually managed to pack clean outfits for him. But they are all wet, from a sippy cup that got thrown into the bag. Randy almost joins the gathering after Max wakes up in the car. They head straight for the bathroom so that Randy can do Max's cares.

It all works out. Kai ends up in one of Kylie's outfits. He spends much of the gathering trying to figure out how to respond to 17-month-old Audrey's hugging. Max runs around in play tunnels in the back yard. He tolerates Audrey's hugging. The rest of us get to catch up on our lives, old and new.

On our way home, when we are almost back to Berkeley, we accidentally end up on the Bay Bridge. Paying the $4 toll, and heading toward San Francisco when we should be tucking the kids in, seems to capture the disarray of our lives. But we discover that we can exit the bridge at Buena Vista Island, where we catch gorgeous dusk views of the city. We can't do it all, but we're doing fine.

Sun Sep 20, 2009

Friday evening, I discovered that the Berkeley Rose Gardens and Codornices Playground are only a 20-minute walk down from our house. A long, dim pedestrian tunnel connects the two spaces -- one space filled with roses along a terraced amphitheater overlooking the San Francisco Bay, the other space filled with play structures and a steep, winding, slick concrete slide (only Randy has braved it so far). Max raced between the two spaces again and again, screeching and waving his hands -- a tunnel monster. I rode home with Randy and the boys (who had driven to meet me at the park after running errands), instead of climbing the countless steps back home, along the paths that criss-cross the Berkeley hills.

Yesterday morning, we were short on time, so we drove the kids to and from Codornices.

This morning, Andrea and John (the British colleagues who house-sat for us when we moved to Boston for Omegaven) swim the chilly 1.5 miles of currents from Alcatraz to San Francisco. Randy and I feel inspired enough to try getting our family to and from Codornices on our own power. There is an easy 10 minutes, spent mostly pumping our bike brakes as we careen around sharp curves. Back is a grueling half hour. No part of the route is all that much steeper than the hill to our home in Boulder, just like no part of the Boston winter was all that much colder than the winters we know and love in Boulder. But the cold was relentless in Boston, and the steepness is relentless here.

We manage to get back in time to meet Andrea and John at our house, and to hear about their extended tour of California. We hope to hit some of the same spots during our year: Yosemite, Big Sur, Redwood National Park. We head out for a scrumptious dinner at a local vegetarian sushi restaurant, where we refuel from swims and swim-inspired activity. And we chase after Max, who seems inspired enough to spend most of dinner running around the block.

Mon Sep 21, 2009

Some things have gone more smoothly than others. We have met Max's new pediatrician and GI doctor. Randy drew Max's first labs here on Friday, and we drove them down to the medical facility -- to the surgical building that we wandered around lost in on our first trip. Randy also picked up Max's first California-dose of omeprazole on that outing.

These are all good steps in our medical transition. But the lab receptionist told me that it has been a long time since a parent dropped off labs -- she thought she knew what to do with them. No word back yet on the results. And Randy was handed a hefty bill for the omeprazole. He explained that Max's insurance covers this medication, but all he could negotiate for now was a delayed billing. The transfer of Max's coverage is still in flux.

This morning, we return to the surgical building, for a consultation about Max's mic-key. It continues to leak the contents of his stomach, soaking his dressings and clothing, and representing the greatest challenge to our day-to-day quality of life. Randy is skeptical about what we can learn from this consultation, given all of the nurses, doctors, parents, and product representatives we have already consulted with. The appointment is even worse than he expects. We have been referred to the surgery department, but the expertise in g-tubes is in a different department here, interventional radiology. We must get a separate referral for the consultation we need. And we should probably expect a sizable bill for today's mistake.

Kate is off today, so after the appointment, we drive through the fog of Muir Woods to Stinson Beach with the kids. Max builds sand castles with a 10-year-old Max (who is also half-Japanese), while Kai stares at the ocean and plays happily in the sand.

Maxim (his other half is French) expresses his surprise that we've traveled all the way from Colorado. Eventually, I realize that he thinks we've come all this way just to come to Stinson Beach. No, I clarify, we'll be working in Berkeley for the year -- we didn't come all this way just for a trip to the beach. We hope.

Wed Sep 23, 2009

One month of living in Berkeley is long enough for Max to start telling us where to go. And how to get there. On our way home from the marina last week, we drove past our regular turn into the hills, so that we could pick up dinner in town. Max protested, "No! Turn back there!" When we biked to Codornices last weekend, Max immediately tried to correct us when we passed the street that takes us to his favorite park. And when we drove to dinner with John and Andrea, Max instructed us to turn right instead of left, to get to his favorite tunnel. (If only he had been paying attention on our drive home from Menlo Park.)

One month is also long enough for Randy and me to look at Grandpa's photo log of our move without wincing. Every day, I have mentally thanked our colleague Jen, who warned and reassured us that it might take this long to feel like the move was worth it.

And one month is long enough for Max to ask -- after telling everyone that we'll be here for one year -- just how long a year is.

It feels like the perfect amount of time to Randy and me. Long enough for Berkeley to feel a bit like home (with Max directing us to his favorite places), but short enough for us to jump to take advantage of opportunities here, both scientific and personal. We enjoy a frenetic dinner tonight with the kids and my former office-mate (from our postdoc year in Boston) -- Fei has just taken a faculty position here. And even if Randy and I failed at our first attempt at the bus-train-ferry tour of the area, we at least made the attempt. I'm hoping we can bring some of this mindset home to Boulder, to get around to enjoying the things we can do any time but end up putting off.

I tell Max that a year is 12 months. Four seasons. One revolution of the earth around sun. In terms he cares about: long enough that when we return home, maybe we'll finally do that bus tour of Boulder that we've been talking about for years.

Thu Sep 24, 2009

I get a call this morning from Alison, the mom in the Australian family renting our current (and we hope, forever) home in Boulder. She says there has been an incident, and now there is smoke damage. Then our connection goes out. I work through scenarios in my mind while numbly repeating, "Hello?" "Hello?"

Our connection comes back long enough for Alison to explain that there was a flue fire in our house last night. After burning one log in the fireplace, she threw a second one in. It immediately burst into enormous flames, which couldn't seem to escape through the flue, sending smoke and soot billowing into the house.

I ask if anyone was hurt. When she hesitates, I reword my question more positively: Is everyone okay? I sputter to fill the silence for several seconds. Then the line goes dead.

Just a bad connection -- everyone is fine. Alison managed to maneuver the explosive log into a bucket of water to douse it. We suspect it was pitch pine filled with sap, meant to be used in small pieces as starter wood.

Flu fires are apparently not uncommon, and the cleanup is straightforward for companies who specialize in this sort of thing. In contrast, the flood was a major hassle, requiring the removal of an entire basement of drenched carpet, weeks of preventative steps against mold, and disclosure and reliving of the details when we put our house on the market.

In this case, I think we're actually lucky it was a fire.

Fri Sep 25, 2009

We bike into town to run errands toward day's end. Kate is watching Max and Kai, so Randy rides without the bike trailer for the first time in years. He thrills at the freedom, but quickly discovers that even without 100 pounds of kids, cart, and gear to lug, the hills are still surprisingly grueling.

Our bike ride follows the usual 1:3 rule -- 20 minutes down to town, 60 minutes to get back home. It's probably not a coincidence that I can at last fit into my pre-pregnancy jeans. At least until we replenish ourselves with a Nepalise dinner.

Sun Sep 27, 2009

Randy thinks that Max is tuning in more to the fact that other kids don't have all on the stuff on their bodies that he has. So we have been talking more with him about his condition. We explain that some of Max's friends have broviacs, and g-tubes, and stomas. Most kids don't, but everyone is different in their own way.

Max doesn't seem particularly interested in these conversations.

We meet Scott and Bella, friends from our Pittsburgh days, at the California Academy of Sciences in San Francisco this afternoon. Max is fascinated by an albino alligator (though we're not sure he appreciates that white is an unusual color), by waxy monkey tree frogs (who move like monkeys swinging through trees, at least when they move -- the 8 frogs we stare down could pass for plastic replicas), and by thousands of exotic fish. Max declares that the stationary fish on the bottom of the 25 foot deep aquarium are sad (they actually do look sad). Then he runs off for more explorations with 4-year-old Lia and 8-year-old Derek. Lia and Derek fight over who gets to push Kai in the stroller.

Our full afternoon includes a drive down Lombard Street ("the crookedest street in the world"), and a brief stop at Coit Tower to gaze out at the bay. Max narrates excitedly through all of these new experiences.

But his curiosity is probably most satisfied at dinner. After hours of playing with Lia, he lifts up her shirt to stare at her belly.

They both seem satisfied after a few seconds, and go right back to playing.

I save my spiel about the extraordinary variety of the world for another time.

Mon Sep 28, 2009

Thu Oct 1, 2009

We have found a replacement for Max's mic-key. With all of the other products we have tried, we insert the button into the stomach, then use a syringe to fill an internal balloon with water to hold the button in place. The new product, the AMT mini-one non-balloon button, has no balloon -- just a small tab that gets stretched thin with a special device when the button is inserted, then expands back to its original size to keep the button in place when the insertion device is removed.

This button does not leak.

We had been trying not to get our hopes up ever since Randy inserted the button on Tuesday. We have discovered great fits before, with the Nutriport, only to have them not last. But in this case, there is no balloon, so no risk of popping.

Max's dressings stay dry all day long. No soaking tissues and clothes and bed sheets to change out over and over again. No need for constant bag changes. Outings suddenly feel easy, and our plans to eventually send Max to preschool feel realistic. We just feel like dancing -- Randy, me, Kate, probably Max, and maybe even Kai, who can get impatient waiting through Max's cares.

Our joy makes it feel like nothing else matters. It probably helps that Max's labs look fine. One liver enzyme is up, the other is down, and his hematocrit is stable. We have adjusted to delays in receiving lab results before -- from the phone call that would come within minutes from Dr. Puder in Boston, to the email that would come within days from Denver. We can adjust to a snailmail wait of over a week here.

It also helps that the fire looks like it never happened. Our homeowners' insurance agent could find no signs of it. He brought along a contractor who was hoping to find a cleanup project, but the contractor instead ended up wanting to offer Alison a job. She cleaned the soot from every surface -- floors and walls and ceilings -- herself, guided by instructions she coaxed out of restoration companies.

We are no longer desperate for the medical supplies that just arrived in Boulder, since no leaking g-tube means a leisurely schedule of bag changes.

Our joy around the AMT button also helps to override any second guessing about why we didn't try this product sooner. We realized yesterday that we first heard about it back in March, from a nurse that Ellie's mom recommended. It took a couple months to research this product (and others) and figure out how to sample it. When the button arrived in May, we were told that a hospital visit was required to insert it. Max's mic-key was in a phase of fitting well, and we decided not to mess with a good thing. By the time his mic-key started leaking horribly again months later, we had forgotten about the AMT button. And when Randy found it in our supplies on Tuesday, we had forgotten that it was supposed to require a hospital visit to be inserted. (The insertion process is more complicated than with the balloon buttons, but do-able.) In it went.

We would be happy to interrupt our dance of joy for any signs of progress on the health insurance front. But for now, we'll keep dancing.

Fri Oct 2, 2009

Last night, I suggested to Max that he could be Scooby Doo. He jumped right in, and decided that I was Velma, and Kai was Fred. Scooby Doo and Velma ran around trying to solve mysteries. Every few minutes, Scooby Doo declared that he had fallen through a trap door, and Velma would fall in after him. We called to Fred to help us, but he just crawled around, oblivious.

Role-playing like this might help kids develop cognitive control. Staying in character is challenging but fun. Taking on these challenges as part of regular play might advance children's thinking.

This morning, as soon as I walk into Max's room, he announces that he is Scooby Doo. We talk about how Naoko and Mike, who are visiting for the day, can be Daphne and Shaggy. Scooby Doo demands scooby snacks while I do his cares. I pretend to pull some from my pocket, and toss them into his mouth. Without thinking, I say, "Here you go, Max." "NO," he insists, "I'm Scooby Doo!"

Maybe these role-playing games will help me get my pre-pregnancy brain back too.

Sun Oct 4, 2009

We debated names for months. A friend emailed me the day after Kai was born, before we had chosen a name. She reassured us that he would end up with the perfect name, and we would look back and think, "How could we have ever wondered?" I planned to write back to her once we had happily settled into whatever name we chose.

Her message is still in my in-box.

I tend to call Kai "baby" -- the way we referred to him with Max from early on. Randy typically calls Kai "koala." When Max saw a cloud shaped like an animal in a book yesterday, he likened it to his little brother's object of attachment: "It looks like koala bear's elephant." Ed, a friend of mine from college, asks Max tonight what his little brother's name is. Max informs him that it is "baby Kai bear."

And now we have Fred. This role-playing stuff has unleashed a monster in Max -- or at least a dog. He has insisted for days that he is Scooby, and he is just as determined that we call Kai "Fred" -- across our day trip to Half Moon Bay yesterday, and during our explorations of Lake Anza and the carousel in Tilden Park today.

Tonight, we finally discover a way to escape these roles. Max agrees to be Big Bird. He then declares that Daddy is Snuffy (Big Bird's best friend), and I am the Count (an easy assignment, given my tendencies to count maniacally with botched attempts at a Transylvanian accent). Big Bird declares that Kai is Oscar (the Grouch).

We did actually consider that name. All these roles might just help us to appreciate the name that Kai has got.

Mon Oct 5, 2009

Yesterday, Max took Kai down from behind in a surprise wrestling move. Before I could exclaim, I caught the huge flash of a smile on Kai's face. Max's attempts at play once brought Kai to tears, but now he loves tumbling around with his big brother. And we have loved watching the boys becoming their own little people, with their own particular interests.

This afternoon, we head to the Berkeley public library to pursue Max's latest. He recently started asking Randy during tuck-in about body parts, and has become fixated on bones. Randy picks out three books about them, while Kai and I browse the display of baby books (two of them are written in Japanese). Max runs up and down aisles, and fails to convince an older girl to pull her nose out of her book to talk with him instead.

Max needs a nap, so we hope he'll take one on the drive home. But he insists on flipping through one of his books. He falls asleep with it on his chest. When Randy gets him ready for tuck-in back at home, Max says he wants to keep reading. Randy explains that we have already read all the bone books. We have learned about how many bones we have and more, and there's nothing left to read. I get Kai into his pajamas upstairs, while singing "the foot bone connected to the ankle bone..." Max calls accusatorily, "I hear another bone book up there!"

Thu Oct 8, 2009

Being in California is amazing. We still can't believe this sabbatical was even remotely possible. In two weeks, Max will transition to a California-based company for his TPN supplies, the most specialized aspect of his care. Pam, our contact person at this new company, has been fabulously proactive about ensuring a smooth transition. Smiley face.

But the transition means leaving Susan, our TPN pharmacist in Colorado. She has been the rock in Max's medical care since we first brought him home from the hospital 3 years ago.

Our relationship seems simple enough. Every week, I email Susan the list of TPN supplies that Max needs. Every week, she gets everything to us. Occasionally, an issue comes up that requires follow-up emails or phone calls, and we resolve it.

What this summary doesn't capture is how completely covered Max feels to us under Susan's care. She makes sure he has what he needs, period. We recognize how hard this can be -- through blizzards, delays in prescription updates, and supplies on back-order. And we recognize how rare it can be, since these sorts of interruptions can lead to hours of phone calls for us with Max's other medical supply companies. But Susan makes everything easy. In so doing, she has made us feel like we can live our lives -- in Boulder, in Paris, in Amsterdam, or on a road trip to our year away.

Max will be back under her care next August. We've never even met in person. But Susan is our rock. Her drawings are exactly how we feel.

Fri Oct 9, 2009

When the doctor and nurse leave the room, and Max settles, I start frenetically going over what has happened over the last 12 hours, what might have caused it, what might happen next, and what we can do about it. Randy looks at me, calmly, and notes, "You seem to be freaking out."

Uh, yeah.

Randy may be calm because he has become desensitized, given what he endured from 3:00 to 5:00 this morning. Max called out in pain, and then thrashed violently as Randy tried to determine the cause. After a long struggle, Randy eventually discovered that Max's g-tube site was swollen and oozing pus. He guessed that the mushroom tab at the end of the button going into Max's stomach had gotten lodged up into the tract into Max's stomach. Through Max's screaming and thrashing, Randy managed to attach the special insertion device, stretch the mushroom tab, and reposition the balloon. He then covered everything with an antibiotic ointment.

Early this morning, the site looked considerably better, and Max seemed comfortable. But by afternoon, he was screaming in pain again. This time, Randy's attempt to reposition the balloon did not seem to hold. So at the doctor's office, we were advised to return to our old, leaky mic-key, to allow Max's stomach to recover from the trauma of the new button.

Our dance with that gloriously leak-free button lasted 9 days.

So, yes, my mind is racing. What caused this button to get lodged into the tract -- was it a sudden pull on Max's tubing? We attach tape to the tube and put a safety pin through the tape and Max's clothing, so that any pulls should yank his clothes rather than his body. But the tape can slip on the tube. Was it gradual pressure built up over time? We were using the same dressing system with this button that we used with the old mic-key: one piece of mepilex transfer, 2 pieces of IV gauze. Maybe this caused too tight of a fit with the new button. Can we go back to this button again, after the site heals? It is terrifying to imagine trying it again, but demoralizing to think that we have lost our best chance at leak-free living. Can we keep this infection under control and avoid admitting Max for a hospital stay? We'll start antibiotics tonight and run them for one week.

We head home 3.5 hours after arriving. One hour of this time went to an x-ray to check that Max's mic-key is positioned properly (yes), while I picked up his antibiotics (half an hour to wait in line for the original formulation, which came in a strawberry suspension, and half an hour to coordinate an alternate form given Max's strawberry allergies -- we'll crush pills, mix them with water, and insert them into the g-tube). A chunk of this 3.5 hours, thankfully, goes to trying to catch Max. Once we're ready to drive home, he runs around the hospital corridors and ramps, giggling, like nothing happened.

Sat Oct 10, 2009

One of Randy's college friends asks if I have any practical advice for raising kids, based on the media coverage he saw about my student's discovery, that kids hear and remember what you tell them even if they don't seem to be paying any attention whatsoever.

I watch Max stubbornly refusing to get out of his stroller. We're at the Oakland zoo with Sam and his family. We can't coax Max out, even to check out the squirrel monkeys or to run around with 5-year-old Logan and 2-year-old Maddy. Once Max decides on his own terms that he's ready to walk around, he immediately tries to cut to the front of the lines for the zoo rides. We have to physically pull him back. He's happy on the fast and spinny rides with Logan, but rejects our suggestion that he might enjoy sitting on a moving animal on the carousel. He insists on sitting on a bench instead.

Well, even as Max rebels, it's great to see him so exuberant. His g-tube site looks good, and he has remained fever-free, so we're avoiding a hospital stay. His mic-key is not leaking, likely because the tract into his stomach is still a bit swollen.

But Max's actions make it hard for me to speculate wildly in response to Sam's question. If our research provides any insights into getting kids to cooperate, I'm clearly withholding them from Max.

Sun Oct 11, 2009

We meet a Boulder colleague this morning. We don't see each other often enough when we're home, but now Mike is on sabbatical in San Diego and we're on sabbatical in his hometown. He introduces us to brunch and toy store hot spots in the 4th Street district by the bay. Max shares trains with several other kids under my minimal coaching, while Kai proudly walks up and down steps with Randy's moderate hand-holding.

Then we head to Oakland, to Lake Merritt and Children's Fairyland (which served as inspiration for Disneyland). These are beautiful and fun destinations. More importantly, we get to spend Grandpa's lunch break with him here! He arrived at the FEMA headquarters in Oakland Friday, where he is working on the American Samoa tsunami response efforts. Max and Kai make the most of this grab of Grandpa's limited free time, exploring the theme park storybook sets and rides with him.

On our way home, we stop at IKEA. We're caving. We have been trying since moving here to get the boys to sleep in the same room, given our tighter quarters and hopes of having them share a room when we return to Boulder. At the start, most nights began with uncontrollable giggling, followed by crying, then cycles of sleep punctuated by one kid crying and setting the other kid off. After a week of that, the boys settled into sleeping through the night -- through Max's pumps and their beeps, and through his middle-of-the-night cares. If one of them wakes up screaming now, the other one will sleep through it.

But naps are another story. They just won't settle into them in the same room. We staggered them for a while -- Kai's nap first, then Max's, then sometimes a second nap for Kai. Most of the afternoon would go to napping, and Max's nap was often pushed toward evening. So we've gone to parallel naps, with Max in his bed, and Kai's portable crib moved to the adjacent guest room. But the portable crib is just barely portable in this tight space. Today's IKEA trip means that we're giving up on getting the boys to nap in the same room.

We get a big boy bed for Max. Randy sets it up in their shared bedroom, and converts Max's old bed back to a crib for Kai. The portable crib will stay in the guest room for Kai's naps. Max happily points out the cat and dog in his new headboard, and Kai crawls around the expanse of his full crib. Both boys seem thrilled with the new arrangement.

Kate gets them tucked in as we head out for tapas with colleagues here.

Just staying out of the hospital would have been enough. Today, we get far more.

Mon Oct 12, 2009

Today, we learn that Max can welcome a new cousin, Sophia, to the world -- the baby sister of Maya and Mateo.

Their mom, Corrie, discovered a lump in her breast in March -- an aggressive cancer that led to a double mastectomy a week later, followed by chemotherapy. Days before discovering the lump, Corrie learned that she was pregnant.

Sophia has emerged into the world healthy. Her family wants to do all they can to help her to recover from chemotherapy exposure in utero and support her developing immune system with the best resource available -- human milk -- ideally through flu season. What I've pumped for Sophia since March will be gone in a matter of days. Buying milk through the Mother's Milk Bank costs up to $140/day, to cover pasteurizing and testing.

If you know of any women who would be interested in donating breast milk for Sophia, they can check out this milkshare web site for more information or contact Corrie (cbeauvineau@yahoo.com) directly.

Donations can also be made directly to the Mother's Milk Bank (make sure to mention the donation is to benefit Corrie and Sophia Beauvineau), by phone (303-869-1888 or Toll free: 877-458-5503) or by sending a check by mail to:

Mother's Milk Bank
Rocky Mountain Hospital for Children
Presbyterian/St. Luke's Medical Center
1719 E. 19th Avenue
Denver, CO 80218

We can't wait for our miracles to get to hold Corrie's.

Tuesday Oct 13, 2009

If these permits were treated like Max's ostomy supplies, people would receive the number of permits that was just barely workable -- like 5 per day. If you needed more permits -- due to sickness, change in diet, whatever -- that would just mean that you would have fewer permits to go to the bathroom on other days. And if the company providing the permits ran out of stock, that would be your problem. You just wouldn't get any permits during that period. When the supply came back in, the company would just start providing the minimum number again -- not any of the permits that were missed.

When all is going smoothly, Max can barely get by on the 20 ostomy supplies we are sent per month (when they are in stock). This number is a limit set for elderly patients. It does not work for many children. With Max's g-tube leaks, or retracting stoma, or high output, we can easily go through 3 bag changes per day.

But after I spend an hour this afternoon explaining the need for Max's supplies with our health insurance company, the representative says that she does not see how she can make a case for Max beyond the basic 20 supplies per month.

Maybe I should try the permit analogy on her.

Wednesday Oct 14, 2009

Thursday Oct 15, 2009

She could see how happy Max is running around during the day. And she could see how comfortable he is getting hooked up to his pumps every night. His latest favorite role-playing theme is the movie Cars. Max is Lightning McQueen, the speedy racer. He has assigned Randy to be Mater (the rusty old tow truck who becomes Lightning's best friend). I'm Mack (the huge truck that hauls Lightning to his races), and Kai is "mean guy" (Lightning's unscrupulous competitor). Max is always adamant that we stick to our characters, but he seems to take particular pleasure in insisting on this role for Kai. ("Baby, do you want more food?" "No, he's mean guy."). As we prepare to hook Max up tonight, he confirms, "Lightning McQueen needs to charge his batteries."

Friday Oct 16, 2009

The owner of our Berkeley rental recently asked whether we might be able to move out early, perhaps a few months before our planned departure of August 2010. Our move from Boulder to Berkeley is now so far behind us that my first reaction was to think how fun it would be to uproot to a new part of Berkeley to explore for those months.

Our move here is also so far behind us that we're piling into the car for another adventure. Max runs around this morning, exclaiming, "I'm so excited!" Our noon start is a bit anticlimactic, kicked off with driving in circles searching for a gas station. But the views up the coast are beautiful.

The memories come flooding back when we try to settle in for the night in Fort Bragg. Kai screams for a good half hour.

Luckily, the owner of our Berkeley rental seemed to be asking about us moving out early in a hypothetical way. But whenever we have to move next, I suppose we will have forgotten again by then anyway.

Website copyright 2007 Yuko Munakata (munakata AT colorado.edu).