Mon May 28, 2007

• 2.5 blissed out days before we knew anything was seriously wrong. I had heard the advice about napping when your baby naps, but I couldn't take my eyes off him. I slept when our hospital room in the newborn wing was too dark to see him.
• 230,000 Google hits for Hirschsprung's. Randy searched while we waited for Max to poop and wondered about his orange spit-up.
• 1 in 5,000. Why we were told not to worry about Hirschsprung's.
• 1 in 5,000,000 -- the incidence rate of Max's condition, extreme long-segment Hirschsprung's, leading to a lack of ganglion cells in most of the small intestine and all of the large intestine.
• 1 neonatologist who told us we would be "screwed" if Max had Hirschsprung's. Everyone was convinced that he didn't have it. That neonatologist was the one who later had to break the news to us.

• 130 days before we could bring Max home.
• 29, 36, and 65 days spent waiting while living respectively, at Saint Christopher House near the hospital, our temporary apartment in Boulder, and home.
• 28 days before we could bring ourselves to remove Max's carseat from our car -- and even then, only out of necessity to fit passengers.
• 4 major intestinal surgeries.
• 1 liver biopsy. By that point, we thought of it as "just" a biopsy.
• 76 days living in Boston.
• 525 statements from our insurance company.
• 5 hospitals.
• 3-4 lifetimes ago that all of that feels.
• 136 days living at home as a family.

• 5 days between when Max first smiled at me and when he smiled at Nurse Becky. Nurse Becky's came first. She had arguably done more for him at that point.
• 2 agonizing days after Max first smiled at me before he smiled at Randy.
• 1 agonizing day after Max first offered Randy a nystatin syringe before he offered one to me.

• 1 line infection (that entered Max's blood stream) during his 4+ months in the hospital.
• 2 line infections in his first 3 months at home (garnering us 14 more days in the hospital).
• 0 line infections in the 4+ months since connecting with the network of short gut parents in Boston.
• 2400 syringes employed in our routine use of Max's central line since he first came home from the hospital.

• 33 days after Max's g-tube was inserted before Randy and I felt ready to try caring for it.
• 45 minutes to get through our first bag change ordeals.
• 3 bag changes during our 1-day record high (a record low).
• 5 days that we currently enjoy between planned bag changes.
• 10 minutes for these bag changes.
• 0 poopy diapers.
• 1 bathroom for 6 people in our apartment in Jamaica Plain.

• All of them -- the number of questions on the back of a driver's license renewal form that Christian's mom was told to just check No to. One of the questions asked whether she wanted to be an organ donor.
• 1 DMV worker who got a serious talking-to.
• 5 months that we kept a packed suitcase in our car in case we got the transplant call.

• 2000+ pumpings of milk.
• $2 per day to rent a hospital grade pump
• $120 to fed-ex my frozen milk home from Boston.
• 1.5 ounces of milk that we discovered Max could get during his "empty" nursings.
• 150 ounces minimum donation for the hospital milk bank.
• 2210 ounces (17 gallons) of my milk donated.
• $3.50 per ounce -- price for recipients of donor breast milk. This covers the milk bank's costs of pasteurizing, testing, etc. None of us are profiting. But with increasing demand, breast milk is being sold on ebay and via a for-profit online company.

• 45 minutes by car to Children's Denver from our home.
• 5 minutes from boarding to take-off in a LearJet.
• 15 minutes for security to process our pumps for a commercial flight.
• 45 minutes by bus from our apartment to Children's Boston.
• 45 minutes on foot from our apartment to Children's Boston.
• 1 naysayer about Paris who stepped forward to admit it.
• 1 gasp issued in response to his suggestion that Randy and I go to Paris without Max.

• $5 of earnings to-date for Max, for 30 minutes of work as a research subject in my lab.
• 4 hours of volunteer work, posing as a US News & World Report centerfold.
• 3 Children's Denver fundraising events that we had to withdraw from while in Boston.

• 34 babies on Omegaven through Boston before Max.
• 49 babies on Omegaven through Boston to-date.
• 1 US hospital administering Omegaven when Max started.
• 21 US hospitals adminstering Omegaven now, by Boston's best guess.
• 35 percent of people in our experience who first pronounce Omegaven, omeGAHven. (It's oMEHgaven.)
• 95 percent of people in our experience who first pronounce Puder, Pooder. (It's Pyuder.)
• 1 family who thinks a slimmed-down Alfred Molina could play Dr. Puder in the movie.
• 1 parent who prefers Billy Zane.
• 1 known insider probe to Oprah about the Omegaven story.

• 4,549 emails about Max.
• 6 emails received this week saying how great Max looks in his recent photos.

• 9 people who have shared their knowledge on the short gut wiki that Randy started.
• 2,615 accesses of the wiki main page.
• 1,343 accesses of the wiki Omegaven page.
• 149 accesses of the wiki transplant page.

• 3 hours after midnight that fall within Randy's most productive work window.
• 10 students in our grad seminar who crammed into our videoskype screen Wednesday and Friday afternoons.
• 36 members of our labs who emailed, called, skyped, and biked to our house at all hours to keep the research running almost disturbingly smoothly in our absence.

• 2 haircuts.
• 8 teeth.
• 2 known allergies.
• 1 letter by Nicole Speer published in the New York Times last week, defending the vegan diet during pregnancy and infancy.

• 12 hours per night that Max generally sleeps, ever since we discovered "Healthy Sleep Habits, Happy Child" 6 months ago.
• 10 minutes to take a shower. I still can't fathom why it's such a struggle to fit one in.

• 1 time that I kicked at the air. That I admitted to.

• 0 quilt squares.

• 220 blog posts.

• 2 times that I awoke from a postpartum haze to feel like myself again -- once at 5 months, once at 11 months. I'm looking forward to the next one.

• 1 year that Randy's grad student gave us before we needed to become fun people again.

• 50,000 people to thank for Max living and our family thriving.

Wed May 30, 2007

Thu May 31, 2007

We'll get back on the slopes too. And with his pumps, Max could be the one snowboarder with something really important in his backpack.

Sat June 2, 2007

Max is lying in a pool of blood when I go to his crib this morning. There's blood splattered on his face and pajamas, and a terrifying bright red circle spreading on his sheet.

He is talking and smiling. That helps. It helps a lot.

I wake Randy. I find the point in Max's tubing where the blood is coming from, and I clamp the tubing above this point, closer to Max. Randy staggers in (having been asleep for only a few hours), and we find the problem: The tubing that carries the Omegaven to Max's broviac has a small port, which has somehow become unplugged. So instead of Omegaven being pumped to Max's heart, it was dripping onto his sheet. Just past this open port, the Omegaven tubing connects to a splitter on Max's broviac. The other side of this splitter connects to Max's TPN tubing. The TPN was also exiting the open port on the Omegaven tubing, the path of least resistance, followed by blood reversing out the broviac. I detach the Omegaven tubing from the splitter, and the TPN resumes its normal flow toward Max's heart.

The circle of blood is about a foot in diameter, and the bright red mess soaks through the sheet to stain the protector underneath. But it's probably not as bad as it looks. A circle like this could result from a bunch of Omegaven and TPN mixed with just a bit of blood -- maybe less than a weekly lab draw's worth.

The on-call doctor at Children's Denver assures me that I've done everything I can, and that the risk of infection is low, because fluid was exiting from the port and likely preventing anything from entering. The call doesn't exactly reassure me though. For that, I call Austin's mom. She knows what it's like to come upon this jarring scene, from when Austin once had a defective broviac connection.

We will try to better secure the port plug, which Max most likely bit off as part of his recent surge in mischieviousness. Or we will try to get tubing without a port. We will keep a close watch for signs of infection.

Max treats me like his hero. He had been taunting me up until today by producing every other sound -- da, ba, wa, puh, fuh, vuh, thuh, guh. But today, he can't stop talking about mama mama mama. To Randy when he staggers into the room. To his mobile while we change his clothes and sheets. To his truck as he plays on the floor after everything is cleaned up. As soon as he wakes from his nap. Mama mama. Yes Max, I'm here.

Mon June 4, 2007

Max is doing just fine after his smiley bloody Saturday morning. Much better than me, actually. I am trying to stay on the horse. We submit Max's passport application this afternoon. Step one for Paris.

Tue June 5, 2007

The results from Max's allergy blood test come back today. I have been preparing to be grateful for whatever foods he is not allergic to, no matter how limited. That would be tuna and shrimp. That's it. He is allergic to milk, nuts, eggs (whites and yolks), peas, beans, wheat, soy, and corn.

We're waiting to hear back from his doctors about exactly what this means. One unsettling possibility is that a weakened intestine can allow foods to seep through the lining. The immune system attacks these apparent invaders, leading to the development of an allergic reaction to those foods. Nursing may have exposed Max to all of the foods that he is now allergic to.

I apologize to Max for possibly doing such horrible things to him when I thought we were doing wonderful things. He just looks up at me and laughs. He has been laughing a lot lately.

I am momentarily the strong one in dealing with the news. Things are always the hardest when we first get new information, but we will figure out how to deal with this. Max can outgrow his allergies. We're doing the best we can with the information we have. Even if the allergies were triggered by nursing, they might still be worth the benefits of breastmilk given Max's condition -- in providing growth factor for the intestine, establishing a good probiotic environment to reduce bacterial overgrowth, and confering immunological benefits.

But we quickly fall into our respective roles. Randy carries on with the mantras, while I revert to a raw vulnerability and sadness that I haven't felt since Max's first weeks. It's hard to summon the energy to consolidate and freeze my milk at day's end. Parents dance the short gut cha-cha too.

Wed June 6, 2007

It turns out that he reads and does calisthenics. He flips through his soft book of sign language, a gift from our colleague Martha Alibali, filled with photos of her daughter Mariana signing essential terms -- "sleep," "more," "I love you." He rolls onto his hands and knees, returns to his back, kicks his legs, and waves his arms. He pulls and chews on his tubes. His tubes! (But they are better protected now, covered with a cloth sleeve from Ellie's family to Christian's, handed down to Max when Christian had his broviac removed in Boston. And his tube ports are taped closed.) He resumes reading and working out for a good half hour. Our audio monitor would have suggested he was pretty much out.

I am transfixed, even after Max falls asleep. I stop watching only when our power goes out due to howling 90 mph winds. (Max's pumps have backup batteries, but our monitor apparently doesn't yet.) I am reminded of Jan and Dick's stories about endless footage of their firstborn sitting in a swing. They too were transfixed, long after family members gave up wondering if anything was ever going to happen in their videos. I look forward to eliciting that reaction more and more as the years go by. That's it? Max is counting? Helping Dada cook? Snowboarding? Yep, that's it. Isn't it fascinating?

Thu June 7, 2007

As of today, Max has lived at home longer than he has lived in hospitals. He commemorates the occasion with a beautiful set of labs. His bilirubin falls below Boston's threshold for switching to monthly tests. We have been dreaming of this moment since the frigid day we arrived in Boston, when we didn't know if it was too late for Max to ever reach this milestone.

Max does have to leave the comforts of home for the discomforts of yet another medical facility this morning, but just to receive his regular 1-year vaccines. The nurse who delivers the succession of shots marvels at how much better Max is looking since his 6-month visit.

The good news is very good.

Fri June 8, 2007

• The pea allergy is odd, but otherwise the allergist sees kids like this all the time. He estimates that 95% eventually outgrow their allergies.
• Allergies are graded rather than all-or-nothing. (This idea is a focus of my cognitive work, but I hadn't appreciated its gastrointestinal relevance!) Max is extremely allergic to milk, egg whites, and peas, and highly allergic to peanuts and almonds. He and I can easily avoid these in our diets -- peas are the only food that hadn't already been cut. He is reasonably allergic to wheat and egg yolk, somewhat allergic to corn, and weakly allergic to beans. We can limit those in our diets without having to be militant about it. We'll also limit consumption of soy and fish since these are common allergens for kids, even though Max currently shows only weak allergies to soy and no allergies to fish.
• Oils are less allergenic than proteins. Soy sauce will be less restricted than tofu. Fish oil (Omegaven!) will not be restricted like fish.
• The consequences of Max's allergies seem manageable -- they mostly make him itchy. Even in the extreme case of him eating peas, his face can get a bit rashy and puffy, but this reaction occurs only sporadically and is easily controlled with benadryl. If Max ever springs anything more exciting on us, we'll be armed with epinephrine needles (a la Pulp Fiction, except injected into the thigh rather than the heart).
• The causes of allergies are yet another gray area -- gray enough not to kick ourselves too much over "could have's" and "should have's." Okay, we could have postponed solid foods due to allergy risks in short gut kids, as Austin's mom was warned repeatedly by Pittsburgh. I should have cut cow's milk from my diet, as Ellie's mom was instructed by Yale. (I was instead encouraged by a GI doc to make sure I drank enough milk -- "milk in, milk out.") We could have tracked down general guidelines for kids at risk of allergies, including cutting eggs from my diet. But the allergist suggests it may not have made much difference -- certain kids may just need to avoid certain foods for certain periods of time. It's hard to know exactly why. Food allergies are more common early in life, because the intestinal lining is more permeable, and the stomach is less effective in breaking down the proteins that trigger allergic reactions. This is true for all kids, not just short gut kids. One additional factor in Max's mix is that his medication for acid reflux interferes with the breakdown of proteins in the stomach. It also interferes with the stomach's natural checks on bacterial overgrowth, so we cut this medication after Max's recent episode. He hasn't seemed to miss it.
• No one seems to think that nursing Max was a mistake.

Sat June 9, 2007

The trip won't include the thing we fear most about Paris: jetlag. We have heard that Max may adjust to that 8 hour time difference faster than us, but I also worry about our alertness for handling his cares. Our practice trip will include home turf advantage with jiji and baba in Brecksville, a suburb of Cleveland where I spent 9 of my formative years (and which we haven't seen in 10 years -- family reunions moved to Colorado with us). But the trip should still provide a reasonable reality check for Paris.

In Pittsburgh, Max will attempt his first wedding. We would have more confidence about his prospects for not protesting, except that the groom is the person Max fears most -- despite his thoughtful visits to see Max in Pittsburgh, Boulder, and Boston. Hopefully Anna will help to soften (or at least divert) Ken's scariness.

Sun June 10, 2007

It was almost too easy getting here. Randy posted a nanny ad a couple weeks after we returned from Boston. We received dozens of applications, interviewed our top 3 candidates, and agreed immediately on Kate. She accepted just as quickly. The whole search process was over in little more than a week. Nurse Barb and NP Kristin saw us through the ensuing month, while Kate trained someone to take over for her as a lead daycare teacher. She started with us the day Max turned 1.

For 7 hours a day, 4 days a week, Max is happy hanging out with Kate -- swinging at the park, listening to her sing, throwing down the toys she presents for his consideration. He is completely at ease in her arms, bringing us peace of mind, and our own smiles of anticipation each time we reunite with him.

Mon June 11, 2007

Max wakes with an elevated temperature. We track it all morning, watching it float around the hospital check-in threshold of 100.4. We blast the swamp cooler, hoping that it's just the warmth the house has been storing up over the last couple 80+ degree days. But we mentally start packing for another stay at the inn -- the usual diaper bag, laptops, and pajamas, plus the new challenge of Max-friendly food to sustain me through an indefinite stay. Then his temperature comes down. And stays down. Our relief lets us take in just how cute he is, sporting haircut #3 from yesterday, and giggling himself silly at me putting things on my head. The mere threat of the hospital brings into sharp focus how luxurious it is to work in our family room, to cook in our kitchen, to sleep in our bed.

Tue June 12, 2007

Our dietary handicaps may also get us in the best shape yet, from nutrition and culinary standpoints. We will consult with a dietician to ensure that Max and I get the nutrition we need despite our restricted diets. And I'm eagerly trying my hand at new concoctions. The last 3 nights in a row, I've cooked something that tasted good -- a fact that would shock anyone I've cooked for. Pork over mint/cilantro/lime quinoa, blueberry maple chicken sausage over rice pasta with farmer's market tomatoes and mushrooms, and grilled lime-marinated chicken over the quinoa leftovers.

I never did end up running a marathon. And I have rarely cooked a meal that Randy hasn't needed to salvage. But Max-fans with similar allergies (or with kids who have similar allergies) have provided a wealth of helpful suggestions. Plus we're in Boulder, where Nurse Barb feels like she's in the minority as someone who eats eggs and drinks milk. And I've never had a motivation quite like Max.

Wed June 13, 2007

The first time is as I walk from school to the dentist. Half the route is the path I would walk home when I was pregnant, to the family housing apartment that we rented during our renovation. I've only ever walked this route with Max on board. These places still have a way of overwhelming me, but now with more nostalgia than sorrow.

The second time is when I realize what happened when Max last had slightly elevated temperatures off and on, in January. He had a staph infection that landed us in the hospital for 9 days, and gave us half a day to prepare for our move to Boston. His temperature is briefly elevated again today. He is scheduled for blood work anyway (for further allergy testing), so we add a test to see if he has an infection. We'll wait for word on those cultures over the next couple days. We hope Max isn't starting a habit of warming up for travel with stays at the inn.

Thu June 14, 2007

When Randy and Nanny Kate take Max to the hospital for his regular checkup this afternoon, his temperature is up to 100.4. So he gets checked in, has fresh labs drawn, and starts broad spectrum antibiotics.

Aside from his temperature, all of his measures look great. His regular checkup shows that he is growing nicely on all dimensions -- probably due to increases last week in his TPN rate and time (20 hrs/day instead of 18), and in his absorption of food (which seems to be benefiting from the addition of prebiotics, food for his good gut bacteria, which Randy researched extensively and pushed for). His general labs (bilirubin etc.) are stunning. His tests to check for an infection look fine -- his cultures are negative so far, his CRP is a low .5. Even his temperature periodically comes down on its own.

Max certainly doesn't think anything is wrong. By the time I pick up our car from servicing, pack for an indefinite stay, and get down to the hospital, Max has been off of his TPN, g-tube feeds, and nursing for several hours longer than usual. I fret about how horrible this must be for him, while he happily rolls around and basks in everyone oohing and aahing over how he is a brand new boy. (People in this in-patient wing haven't seen Max since just before we went to Boston.)

Our stay at the inn gives us an excuse to call Dr. Puder, to check on possible incompatibilities between Omegaven and antibiotics (they are unknown, so we stop one when we start the other). We learn that he recently won a surgeon-of-the-year award. It's presumably for saving so many lives, and for pioneering the research behind the treatment for kids like Max (click here to support it). His award probably doesn't include the fact that he also happens to be the kind of doctor who makes patients (and even ex-patients!) comfortable pestering him with questions at marginally respectable hours.

We'll continue to wait on Max's cultures. We may yet make our flights and wedding this weekend.

Fri June 15, 2007

Sat June 16, 2007

1) Pack the nystatin somewhere memorable, so that it is easy to find upon arrival. The sticky, syrupy, nystatin.

2) Cap it tightly.

That's it. The start of our trip, which involves the pilot intervening on our behalf, makes us expect a much longer list. The seat next to Randy is empty, so the flight attendant readily agrees to retrieve Max's carseat for it from the gate check-in. But a gate agent blocks him, insisting that the "revenue-generating" seat must be kept empty for the flight. The flight attendant notifies the pilot, who overrules the gate agent and retrieves the seat himself. Randy and I join the chorus of sighs of relief issuing forth from surrounding rows. Max rewards everyone by promptly falling asleep, snoozing through take-off and the first hour of the flight, then exploring the endless entertainment afforded by an adjustable tray table (up, down! up, down!), overhead light and fan (on, off! on, off!).

In Brecksville, Max rolls around and around on my childhood bedspread, pulls little fish from a stuffed pelican (a home ec project of Auntie Junko's), and says bababa. He's asleep by in his portacrib by 10:30.

Sun June 17, 2007

Now we'll also know June 17th as Ken and Anna's anniversary. Ken turns out to be much less scary when he's singing a love song. Or maybe it's the whopping 4 naps (3 in Brecksville, 1 en route to Pittsburgh) that Max takes in preparation for his first wedding. Whatever the reason, he issues only minor protests during the ceremony. Then the real fun begins.

Max meets the girl of his dreams. Or at least the girl he thinks about just before drifting off (having looked at her book of signs up until the last possible moment), and as soon as he wakes (picking the book up off of his torso to flip through yet again). And 3-year-old Mariana has spent countless hours of her own looking at Max's blog photos. They seem at least as obsessed with one another in person.

Max gets to sit with us at the cool table -- aka the sailing table, aka the kids' table. (Mariana keeps sneaking over to try to join us.) Mike and Ray's 2-year-old shows only a passing interest in Max, but her feelings may be complicated by the fact that Max was melting in Mike's arms for most of the preceding cocktail hour. Anne and Guy's girls are turning old enough (9 and 6 years) for their parents to think about organizing sailing trips again. The thought of 4 families swaying together in a closet-sized space for a week makes Paris feel all the more manageable.

Max gets to dance. He has always loved swinging around with Randy and me as we sing random songs. But he has never had accompaniment like this rocking band, or a lead to follow like beautiful bride Anna's. She declares Max her best dance partner of the night.

We worry as we load Max into the car that we have overstimulated him for too many hours, too close to bedtime. (The reception also involved meeting many other Max-fans from our grad school era, as well as a penguin brought out for the occasion.) But Max is asleep within seconds. He has seen that the stuff of dreams can become reality.

Mon June 18, 2007

Austin's family lives outside of Pittsburgh. This time, instead of a rushed 10 minutes together at the hospital like we had in Boston, we are treated to a downright leisurely evening in their home. Time for a bag change for each boy, so the parents can swap techniques (Austin gets more drying before skin protectant is applied, Max gets more form-fitting paste). Time for Max to discover that there are actually toys not included in his collection. Time to feast, on a delicious assortment of grilled, Max-friendly dishes. And time to talk -- about the darkness leading up to Diagnosis Day, and about how much better every day has been since.

A neighbor drops by -- the mom of Andrew, a 20-month-old with short gut. She is originally from the Czech Republic, where she held the babies of all her friends. She hopes to make a return visit so that her friends can finally hold Andrew. But she wants to see how our Paris trip turns out first. It's a welcome pressure.

None of us ever intended to become part of this extended short gut family. Now we're sure glad it's here.

Wed June 20, 2007

Fancy new neighborhoods are popping up all over Brecksville. One of them replaced the wooded streams behind our house where I caught salamanders as a kid. Another is where Tim lives, having recently made his way back to Brecksville. Max is more impressed with Tim's daughter, who also just turned 1 and worships ceiling fans with the same reverence. Ella chases after her brother Zach and whispers "cake," while we catch up on the old and the new.

Thu June 21, 2007

Our rosy view of vacationing stems in part from forgetting the more tedious parts. We probably won't reminisce about how baba and jiji waited in the car with sleeping Max, while Randy and I lost track of time at the home of friends John and Barb on our way back from Austin's. And I'll try not to reminisce about jiji's unfavorable assessment of how I seem to be coping relative to other short gut moms.

Even before fully ripening though, this vacation has provided just what we wanted.

Fri June 22, 2007

With everything we've been through, Randy and I have often thought about our friend Barb's "bad marathon." She has run many good races, but for this one she experienced severe cramping that forced her to stop several times. She managed to complete the marathon somehow, and came to value the experience for allowing her to worry less, knowing that she could make it through bad stuff when it arose. Seeing Max through each major surgery was a bad marathon. Finding him in his bloody crib was another. This flight is our bad marathon of travel. At 2.5 hours though, I suppose it's a sprint relative to getting to Paris. But we see that we can make it through.

Sun June 24, 2007

Everyone knew Randy would make a great father. He never fails to be the feature attraction in a roomful of kids. At one party, Toshio repeatedly proclaimed to him, "You're my uncle" -- as if to clarify to the hordes of squealing children climbing on Randy and thwacking him with balloons that he was not actually the hired party clown.

Mike Bridges, Max's best friend at the wedding, noted on a sailing trip how the things you love most about someone can also be the things that drive you crazy. Watching Randy with Max has helped me to love not just his party clown skills, but also some things that used to drive me crazy (or really, that just plain baffled me).

Randy isn't a planner. When I talk about the future, he gets a faraway look in his eyes like I am trying to engage him in a dialog about unicorns. We used to think of this difference in terms of me being strategic, Randy not. But a friend pointed out that the people who plan are generally the ones who need to. The people who don't plan aren't simply missing a skill -- they usually have the complementary ability to get by on the fly, responding to whatever situations arise. I am strategic, Randy is tactical. I can plan all I want, so that we have every supply handy when we change Max's broviac dressing, a painstaking procedure that must be kept sterile. But when Max fidgets and his lifeline flops around in unpredictable ways, Randy is the one to swoop in and secure it.

Randy is systematic. He may not think about the future, but he knows where everything is in the present. I once feared that he was not far from becoming jiji, whose labeling of scissors with their places ("family room," "den") is legendary. Randy is far from becoming Nana, who finds the idea of a silverware organizer tray (what's the point?) hilarious. But now Randy is the one to impose order on our reams of medical information and crates of supplies. These things make a little more sense in their places.

Randy doesn't worry. He has saved Max from several unnecessary trips to the hospital.

Randy is good at nursing Max. I have received fervent support for my continued nursing and pumping, from short gut moms and regular moms, from moms who nursed their kids through their third birthdays and moms who were unable to nurse. Randy has always done whatever needed to be done to make it possible -- from shuttling Max to and from my hospital bed at all hours in the early days, to protecting my pumping by shouldering our responsibilities during these recurring 15-minute windows ever since. Our shared duties have shifted from medical lit reviews and doctor conferences to just playing with Max. Randy was right when he said WE are lucky to be nursing.

Due to a mis-entry in my calendar (a strategic error), we celebrate our special Father's Day a week late today (a tactical response). Max has little idea about the tactical, systematic, relaxed, nourishing ways in which Randy is an amazing Dad. And these are just some of the traits that have at times perplexed me. There's much more -- much more that makes Randy an amazing Dad that is, not that perplexes me. The clowning is one aspect that Max is better positioned to appreciate, as Randy swings him around, tickles him silly, and faces off with him in babble-fests. Max will have plenty of time to get to know and love the rest.

Mon June 25, 2007

Tue June 26, 2007

The daughter of one of my colleagues once played with Fuzzy in our bedroom. She came running out exclaiming, "The cat jumped on the bed! The cat jumped on the bed!" Seeing our puzzled faces, her father explained that their cat was 20 years old, so Emma didn't have a concept of cats as mobile creatures.

We've always attributed Max's motor delays to his multiple abdominal surgeries and extended hospital stays. Those factors probably contributed, but liver damage and resulting reductions in caloric input might have played a larger role. Kids like Austin and Ellie, who avoided these complications, have been running around for some time.

I feel Emma's exuberant wonder as I watch Max crawling around, each of his excursions more confident than the one before. I am bursting with pride. I almost understand the bumper stickers parents use to broadcast their kids' accomplishments. My boy can crawl!

Max can't get enough. As soon as he is set down, he shifts into crawling position and goes. It doesn't matter where. It's like what we would do upon discovering we could suddenly fly.

Fri June 29, 2007

But vomiting may indicate the pectin is slowing things too much for Max and creating a backlog. So we decreased it to a 15 percent dose Wednesday evening, and cut it entirely Thursday morning. Max seemed better Thursday, with just a few minor spit-ups as opposed to a steady stream. But the steady stream resumed last night and this morning. It may be unrelated to the pectin.

GI Jason instructs us to check into the ER. Max gets blood drawn, and has abdominal x-rays taken to check for any obstructions. His labs are gorgeous. His bilirubin is almost normal, and his hematocrit has risen on its own (without a transfusion), perhaps thanks to iron drops he has been taking orally. His CRP is a nice low .6. CRP has been a reliable indicator of infection for Max, so this number is particularly reassuring in light of the 100.9 temperature he registers at check-in.

His x-rays show no obstructions, though this measure may not be the most sensitive. We're scheduled next week for a routine upper GI study, which will trace a contrast agent through Max's intestine and should be more diagnostic. The doctor suggests today's x-rays weren't worth doing, because Max has so little intestine to evaluate. "He's got like what, this much?" The doctor holds up his hand with his thumb and forefinger outstretched to demonstrate just how little. Randy comes to Max's defense, explaining that his surgeon noted significant intestinal adaptation during the removal of his nonfunctioning bowel last September. Not a day goes by without us wondering how his intestine continues to adapt.

Most of this 6-hour ordeal is spent waiting. Waiting to get checked in, waiting for permission to feed Max, waiting for a second blood draw because the sample needed for cultures was forgotten during the first draw, waiting for the doctor to make his hand gesture and tell us we can go home.

We will keep an eye on Max's temperature (which has been dropping since check-in), wait for word on the cultures, and adjust Max's feeds (particularly his overnight ones, which seem like the biggest culprit) to try to reduce his vomiting until his upper GI study next week.

We remind ourselves that tomorrow will be better. We will celebrate Nana's birthday belatedly, since she visited us in the ER tonight instead of being taken out for dinner. Then we realize that we might get the call to check in to the hospital tomorrow. Well, if tomorrow isn't better, then the next day. Or maybe the one after that.

Sat June 30, 2007

We check into the ER, again. And with his temp now up to 102, Max gets checked in for another stay at the inn. Labs are drawn, broad spectrum antibiotics are started -- the usual. Except this time, Max looks like he might actually feel sick. I rub his back. I remember how good it felt when baba did this for me as a kid. Max seems comforted by it.

The big fear is that Max has some kind of obstruction that could lead to a loss of precious intestine. The doctors think this is unlikely, because Max shows no abdominal pain or discomfort, and he is producing output from his stoma. His upper GI gets rescheduled to happen during our stay, and will hopefully confirm their assessment. Max's CRP is up from .6 to 1.2 -- elevated, but not as high as it tends to run for full-blown infections. The doctors offer their best guess, that Max has a basic stomach virus that is just slowing down his intestine more than it would most.

Max seems more like himself when he wakes from his afternoon nap. He enthusiastically waves good-bye to his doctors (before they are ready to go), and repeatedly signs "more" to me. This is his favorite sign these days, formed by shaping each hand into an O and tapping the hands together. Max first used it to sign for more milk. He used it for Nana recently when she set him down after cuddling him. He signs it to me after I abruptly stop singing a silly song, when the doctors walk into our room. I oblige him.

We will continue to wait for word on Max's cultures (yesterday's is still negative), to watch his temperature (it returns to normal tonight), and to limit his feeds in hopes of reducing his vomiting. And we'll celebrate Nana's birthday on her next visit to Boulder.

Sun July 1, 2007

Our best attempt at "immediately" is this morning. The doctors here expect the upper GI study to be uninformative -- stuff will pass through smoothly, Max will eventually stop vomiting, and we may never know what caused this episode. The barium milkshake is inserted into his g-tube. We watch on the monitor as it fills his stomach and makes its way through the upper part of his small intestine. Then it seems to stop. Then Max vomits milkshake. A catheter is inserted into his stoma, and bile and milkshake gush out. The radiologist notes a restriction in the intestine just above the stoma. She inserts milkshake in through the stoma to get a better image.

Strictures like this are apparently fairly common in short gut kids. The final section of Max's intestine may be less ganglionated than his upper intestine (ganglion cells migrate from the top down), making it more vulnerable. Perhaps Randy and I can now stop second-guessing whether we should have pushed for more of his questionable intestine to be kept, to try to maximize food absorption.

Dr. Puder was right about the upper GI study being informative. Maybe we should know better, but now we can't help but hope that he's wrong about how to treat the stricture. He recommends re-doing the stoma, bringing the intestine out just above the restriction -- another surgery, a loss of intestine. The surgeon here dilates the stricture manually this afternoon (a 5 minute procedure), and believes this treatment is likely to address the problem. If so, Max's stoma output should increase and his vomiting should decrease over coming days.

Mon July 2, 2007

Other families have been here. It doesn't matter whether they're in Boston, Pittsburgh, or Tallahassee (all places we've received supportive emails from during this hospital stay). They know the uncertainty that we're trying to not let consume us, the chairs we're sleeping on, the din streaming into our room at all hours. And they know the waiting.

We wait all day to talk with the surgeons about the plan. One comes by around 1:00, to drain Max's stoma with a red rubber catheter. The contents fill a 60 cc syringe, relieving pressure that has built up despite our regular draining of Max's stomach via his g-tube. The surgeon says the team will be by in an hour to discuss the plan.

An hour turns into six hours. We consult with Boston throughout this window. Somehow the rules of endless waiting don't seem to apply to Dr.s Puder and Gura, whether we're emailing them just before falling asleep, immediately upon waking, or during regular hours like now. Remarkably accessible rock stars.

The Denver surgeon, Dr. Karrer, provides some reassurance about what may be happening: the abdominal muscle around Max's stoma may be pushing up against it, causing the stricture. He proposes two main courses of action. The first is to progressively dilate the stoma (futher than yesterday's dilation procedure), under general anesthesia. This procedure may suffice to get things flowing again. He gives it a 50/50 chance. If the stricture seems too tight for this to work, the second option is to revise -- and reduce pressure on -- the stoma by cutting into the surrounding muscle.

We call Dr. Puder. He and Dr. Karrer talk. We talk further with each of them. We agree to proceed with the plan.

Max is summoned for surgery an hour later. He is calm and cuddly in his Curious George pajamas, as he is carried off in the arms of the anesthesiologist. We get the call to meet the surgeon a mere 20 minutes later. He explains that he was able to go with the simpler procedure of progressive dilation. The stricture seemed muscle-induced in terms of its feel and location. He irrigated the intestine afterward, and the contents emptied out of the stoma -- a good sign.

Max is fussy when we reunite with him in the recovery room, but he is asleep in Randy's arms within minutes, and easily transitions straight to bed.

Now we hope again for more stoma output, less vomiting. If we don't get it, we will turn to the more invasive but more definitive stoma revision.

Tue July 3, 2007

Max has no idea what all the fuss is about. He wakes us at 5 am with his singing. He busies himself with pointing and talking and crawling for most of the morning.

The day progresses much like yesterday. Red rubber catheter guy comes to drain the stoma around 10:00, and indicates that the surgeons will be by within a couple hours. We don't fall for it this time. I head home to replenish our supplies, while Randy consults with Boston.

We may be done hoping that Dr. Puder is wrong.

Everyone seems to agree that the stricture alone is not enough to cause the current lack of flow. Dr. Puder believes that the other key factor is the reduced innervation of the intestine near the stoma. Last summer's biopsies revealed good ganglion cells at 20 cm down, no ganglion cells at 30 cm, and some ganglion cells in the transition zone at 25 cm. Max's stoma was brought out at 25 cm. With the development of the stricture, the less ganglionated intestine may not be capable of pushing things through. Cutting the surrounding muscle might provide a short term fix, but this section of intestine may always be vulnerable to this problem. So Dr. Puder argues, again, that the stoma should be re-done just above the stricture. Yes, this means losing intestine, but just a small amount that is not doing Max any good. It's like giving up deep fried comfort foods -- not something you feel like doing, but probably for the best.

In contrast, some of the Denver GI folks believe Max has a temporary dysmotility caused by a viral infection, which will resolve with time and with less radical treatment of the stricture. Max's viral tests were negative, but these do not screen for all viruses. A virus would explain why his temperature was occasionally elevated.

We prepare to present Dr. Puder's case to the surgical team here, under the assumption that Max will be having one surgery or another today. But a couple hours turn into ten. And it's only the red rubber catheter team who arrives at our room tonight, instead of surgeons to discuss decisions with. Those discussions must wait until tomorrow.

Wed July 4, 2007

Denver's theory about why nothing is coming out of Max's stoma is the reason we're home. Dr. Puder's theory is the reason we'll keep a packed suitcase in our car again.

The Denver docs believe that Max had a viral infection, which could cause dysmotility in his intestine. We had recently increased his feeds and added pectin to slow things down. All of these factors may have converged to produce ineffective pressure to push things through the stoma opening (which is constrained by the surrounding skin to be relatively narrow). The resulting backlog would lead to dilation of the intestine (which we see today on the films from the upper GI study), rendering its peristaltic motion less effective. If this theory is correct, the problem should resolve with time for recovery from the virus and red rubber catheter draining of the stoma to help the intestine return to its normal size. If this theory is incorrect, Max's stoma will not start to drain on its own. We would go back to the hospital and likely re-do the stoma, hopefully with little lost from the wait. And we would make a point of provisioning for a prolonged stay.

Fri July 6, 2007

But there are times when I deeply relate to a comment passed on by Christian's mom -- that sometimes you need to put blinders on to focus on getting through the current situation. Don't think about the longterm future, don't think about other short gut kids. Just do what it takes to get through these moments. This was the advice of Ed Barksdale, a Pittsburgh surgeon who is the object of much adoration when transplant families talk. The advice initially struck me as bizarre.

The need for blinders will sometimes kick in for no apparent reason. I'll just find that I can't handle thinking about what issues Max will be facing in a year, a decade, a lifetime. (I was actually slow to recognize that his issues may be lifelong. I ignored posts from young adults on a short gut mailing list at first, thinking them irrelevant to my short gut baby.)

Sometimes the impetus for blinders will be obvious, like now, as we wait for stuff to come out Max's stoma, and I wonder if it ever will. Our red rubber catheter draining is keeping him comfortable and happy -- no more vomiting, lots more crawling and pointing and laughing. The Denver doctors think it could take as long as a month before things start moving through his intestine on their own again. And perhaps before the blinders can come off again.

Sat July 7, 2007

This afternoon, we forego the skateboards for the stroller and walk to the wedding of Rich and Erica, former grad students at CU. Randy and I meet several parents, while Max plays it shy with their kids. We discuss the foods our babies eat and the sleep schedules they keep -- a welcome change of pace from our recent focus on colors, quantities, and interpretations of vomit. It's good to venture out. I just wish I felt less like an imposter.

Sun July 8, 2007

Tue July 10, 2007

Wed July 11, 2007

Dr. Soden (aka GI Jason, Max's primary doctor at Children's) and Dr. Partrick (Max's surgeon) were out of town when Max was in the hospital last week. They're back, and they are leaning toward the less-ganglionated-bowel explanation of Max's lack of output and away from the viral one, because:

1) Max still isn't putting much out of his stoma, even though we are 15 days out from his first bilious vomit and his intestine is not physically blocked. Dr. Soden would have expected a virus to resolve within 10-14 days (in contrast with the up-to-a-month estimate we heard from other doctors here last week).

2) Problems with less-ganglionated bowel could develop at any time (again, in contrast with what we heard last week, that the late onset of this problem challenges the less-ganglionated-bowel idea, because blockages typically occur within a month after surgery or injury).

The plan is to allow a bit more time to see whether this will resolve -- based again on the argument that waiting won't hurt anything, and we can manage things with our red rubber catheter draining. Max will be seen by Dr.s Soden and Partrick next Friday. If his output has not improved, then we will discuss surgical options.

Our friends at the department party ask how Max is doing. We say great, but that he may need another surgery soon. It doesn't seem like a sensible answer, but I think it is in the grand scheme of things.

Max rounds out his day by nursing for the first time since this episode began. I worry that he will have forgotten. This has been our longest break since his first couple months in the hospital. (Bilious vomit turns out to be a more convincing reason to stop nursing than allergies). But it's just like riding a bike. It feels so good to remember how.

Thu July 12, 2007

It is hurting Max's growth. He has been losing weight over the last couple weeks. We had stopped his feeds entirely to reduce his vomiting. Now the red rubber catheter draining of his stoma is allowing him to gradually start eating again. We don't know when he will get back to his prior level of feeds though. In the meantime, we will extend his TPN time to increase his nutrition. Max will be hooked up to his pump 24 hours a day.

This turn of events feels brutal. We had been looking forward to progressively increasing Max's untethered window from 6 hours, but instead it has been cut, to 4 hours last month and to 0 today.

Two things help to reassure us. First, this loss of freedom is temporary, a way to help Max through rough patches with his intestine. Second, the sadness we feel is really for ourselves, not for Max. Our friend Michael Frank left today after visiting for a week. He pointed out often how Max seems so happy he can barely contain himself, squealing, laughing, and playing. This is true whether he's tethered or not -- it makes no difference to Max. Trying to be more like him in this regard wouldn't hurt anything.

Fri July 13, 2007

Sat July 14, 2007

Mon July 16, 2007

The magic of language development seems at least as ineffable. We know some brilliant researchers in this field, colleagues whose talks make you tingle with excitement. But still, we had no idea. No idea how fun it is to ask Max where his nose is, and to watch him point to it. And how fresh this game feels, even as we proceed to ask him about everyone else's noses. And then their hair.

Max's face fills with a knowing grin, watching us make the sign for tiger at the zoo (where we celebrated our final 20-hr TPN bag and untethered window yesterday). And I feel like jumping up and down when Max imitates the sign, pulling his splayed hands out from his mouth, and when he later produces the sign himself upon seeing a tiger in a book from Aunt Katie.

Some of Max's signs are variants of the standards. We sign "bear" by crossing our arms and making clawing motions and a fierce face. When Max signs for bears, as he likes to do throughout the day, he crosses his arms and rolls them around each other. His face is not fierce.

Other signs are entirely his own creation. He pats his head with both hands. He curls his hands into loose fists, then lightly shimmies his fingers, like he is dribbling sand. He looks at us intently, seeing if we understand. I am reminded of the time Randy and I babysat Toshio, when we were still Linux purists, and we couldn't figure out how to insert a DVD that he wanted to watch into a mac. Baby Toshio watched his failed attempts to communicate with us in disbelief.

When I ask Max if he wants mama to hold him, he reaches his arms out to me. I want to run and wake Randy to share the news.

Scrabble, Sudoku, poker -- I find most games addictively entertaining. Conversations with Max are fun beyond words.

Tue July 17, 2007

But we are reminded immediately during a consultation with him this afternoon -- a few days earlier than our joint appointment with Dr. Soden, since Max's output has not improved much and the surgical route looks more likely. Dr. Partrick hasn't seen (or operated on) Max since last September.

He has heard all the talk about how well Max is doing. When we were in the hospital a couple weeks ago, even distant doctors knew about the miracle of Omegaven and what it has done for Max. Dr. Partrick has also seen how good Max's labs look. Our recent hospital visit overshadowed the fact that his bilirubin levels actually normalized that week. Normalized! After months and months of reports marked CRIT and HI. But Dr. Partrick is still amazed to see Max. He notes how thrilled Dr. Puder must be with how his patient is doing. I say yes, but that Max is just one of dozens thriving like this.

Dr. Partrick has done all of Max's intestinal surgeries, including the one with progressive biopsies to determine that his stoma should be brought out at 25 cm of small intestine, in the transition zone between ganglionated and aganglionated intestine. He believes that this less-ganglionated end is the cause of Max's functional blockage. The problems may have worsened as this section of less-functional intestine grew, and might have been complicated by other factors, such as tightening of the surrounding abdominal tissue or a virus. But the aganglionosis is likely the root cause. The red rubber catheter slides in easily enough, suggesting the problem isn't solely about a stricture. So, we are facing Max's fifth major surgery.

The plan Dr. Partrick outlines is to go back through Max's existing abdominal incision. The intestine will be assessed for any restriction from the abdominal fascia -- if one is present, it will be cut away to free the intestine. The intestine will be assessed for a transition point from dilated (likely functioning) intestine to non-dilated (likely non-functioning) intestine. Biopsies will also be taken to confirm the presence of ganglion cells. These results should converge to indicate how much intestine should be removed and where the stoma should be redone.

As much as we've been expecting the surgical route, it is still jarring to face it. But as Dr. Puder emphasized at the start of all of this, it's bad intestine we'll be losing. And we are reassured by Dr. Partrick's clarity and thoroughness in stepping us through each aspect of what he will do and why. He knows what Max needs. He knows what we need.

Now we wait for the call to schedule the surgery.

Wed July 18, 2007

Max and I are sniffly. This is his first cold -- not a bad track record for a 14-month-old. This is the first time I've been sick in over 2 years.

His stoma revision is scheduled for July 30. It will be his first major surgery in 10 months. Randy and I are bracing ourselves, for the anticipatory anxiety, the hours in the surgical waiting area, and the bumpy post-operative pain management process. But we can't foresee all that we might want to brace for.

I won't think about my throat once I'm over this cold. And we'll move on from this surgery, on to something approximating life as usual. I hope my next cold comes before Max's next surgery.

Fri July 20, 2007

He does have his demands. I prepare his feeds with my back to him this morning. Out of the corner of my eye, I see that he is signing for more. But when I continue uninterrupted on my task, he brings his cupped hands together loudly enough for his sign language to be heard. If only my impatience were so endearing.

Sat July 21, 2007

Wed July 25, 2007

Several things have come together in recent days, probably not coincidentally. There's the holy terror business. Max has also transitioned to a big-boy sleep schedule -- one big nap in the middle of the day, instead of two shorter naps early and late. His temperature has been notably stable. He is producing more stuff out the stoma -- closer to 20 percent of his usual production, up from less than 10. He has always seemed like a pretty happy guy, but now he seems even happier.

In retrospect, we can see that he was probably fighting something the last few weeks, a bug that could have exacerbated his stoma blockage (though the root cause is still presumably the less-ganglionated intestine). He should fully recover from this bug in time for his surgery, which has been rescheduled for Tuesday morning. We're relieved to have it moved from Monday afternoon -- further from the chaotic shift change and the departure of the pain management team at day's end.

I wonder what will shock us when we think back to this time.

Thu July 26, 2007

Max will occasionally give Randy the last bit of fun during his night cares. Last night, he woke suddenly during his diaper change. He pointed insistently at the window, grunting. He seemed to be saying, "I've been meaning to ask you something, and I really want to know the answer." He kept pointing. He was only satisfied (and in fact seemed rather pleased) when Randy pointed outside, imitated the chirping sounds coming through the window, and explained, "Crickets!"

Fri July 27, 2007

David is the 6-month-old whose parents found Max's page after their doctors told them there was no hope. He now has near-normal bilirubins and is preparing to return to Hackensack from Boston. Connor is a 7-month-old who has been staying at "our" apartment in Jamaica Plain (and is one of many who learned about Omegaven from Ellie's blog, the Short Gut News). He is heading home to Arizona after a 6-week stint above the bakery. Nora, a 3-month-old in Tallahassee, gets to stay there -- Omegaven will come to her.

The babies continue to prove the skeptics wrong.

Sat July 28, 2007

We start a video-skype session with family this afternoon. Cousin Toshio wants to see Max standing, and we want to hear the British accent that Toshio has allegedly developed during his third summer in Germany. But as we sit down to talk, Randy feels moisture on Max's pajama leg, and discovers a concentrated silver-dollar sized spot of blood. He finds a leak at the tip of the broviac and clamps the catheter above it. I call the GI doc to let her know we're coming. We pack our supplies and are quickly out the door. We make good time on the drive to Denver, and arrive at the hospital 45 minutes after finding the leak. So far, so good.

Timing is important. Repairing a broviac is a delicate but straightforward procedure, which takes all of 5 minutes: sterilize everything, cut off the damaged catheter, insert the stent that sits inside the replacement end into the remaining catheter (attached to Max), and glue everything together. But this procedure has to happen before Max's blood clots inside the catheter we've clamped off. Otherwise, instead of a 5-minute repair, he needs surgery to thread an entirely new broviac up to his heart.

This is why we rush to the hospital, and why we call in advance so that the repair supplies can be waiting when we arrive. We're ushered into a room. And that's where we wait. It's where we wait for the next 130 minutes.

It's an eternity for us, but it's not too late for the repair. The surgeons demonstrate its success by drawing blood from the broviac and flushing it with saline. The nurse then flushes it with heparin, which prevents the blood from clotting when the broviac is not in use. (The surgeon suggests that if the broviac breaks again, we should flush it with heparin right away to prevent clotting. But everyone else has advised us to just clamp the broviac until repair, since flushing a damaged line could cause infection or send particles from the damaged section into the bloodstream.)

There was no obvious cause for the broviac break, either this time or the other time, in April. We've been told that broviacs can just break from wear and tear. We made it 14 weeks and 1 day until our last broviac repair. Today's repair came just 4 days sooner. Scheduling out for the next one puts us at Halloween.

We're thinking it's time to get trained on this procedure.

Mon July 30, 2007

The last time we had Dick and Jan over for dinner was two months ago. We had a really nice evening, celebrating the fact that we finally felt settled enough to cook for friends. The next morning, Max was lying in his pool of blood.

This time around (last night), Dick and Jan bring over and cook a spectacular 4-course dinner. Jan says she's glad we didn't do this on Friday, or our dinner would have fallen the night before a bloody episode again.

This morning, I email to say thanks for dinner and to let them know the episode has not repeated. I can see on the video monitor -- the monitor purchased after the bloody-sheets episode -- that Max is waking happily and there is no dark pool of blood. Max calls out, so I leave the email unfinished.

Max's face is splattered with blood. It's all around his nose and mouth with a bit around his eyes. His tubes look fine. A big clump of blood on the bridge of his nose looks like the source. I dab at it, thinking he has fallen and wondering if he will need stitches. The clump comes off easily. The skin underneath is pristine. I notice now that there is blood on his hands and pajama arms. It is dried. The blood on his face isn't particularly fresh either. I realize that Max is trying to have his normal morning conversations with me. He is fine. It seems like it was just a bloody nose.

Still, for our next evening with Dick and Jan, maybe we'll try take-out.

Tue July 31, 2007

In the OR, the intestinal biopsies show no ganglion cells at 2 cm from the stoma, minimal ganglion cells at 3 cm in, and great ganglion cells at 4 cm in. So the intestine is cut at 4 cm, and the stoma is re-done there. Dr. Partrick notes that it looks like the bad intestine hasn't grown much, but the good intestine has adapted nicely (and not just as a result of dilation from this blockage). The new stoma is noticeably larger in diameter.

All of this revision is done through a small incision directly around the stoma. Max has grown enough that his existing incision -- the long one used for his 4 other major surgeries -- is now too far from his stoma to be of much use. So Dr. Partrick doesn't open Max up fully through this incision as he had originally planned. This means no liver biopsy, and no visual assessment of his entire intestine. (Ellie's mom recently told me about another breastfed short gut baby, whose intestine tripled in length after a year.) We knew to not get too attached to the plan, but we can't help but feel a little disappointed at not getting this information. More importantly though, the revised course means no large cut to heal from, and little manipulation of intestine.

Max's main complaint is just the IV in his hand (there in case he needs additional pain medication). This seems to speak well of how his epidural is working.

We couldn't have asked for a much better outcome -- a problem clearly identified and addressed, with minimal impact. From here, we will manage Max's pain, gradually re-introduce feeds, and wait for his stoma to start fully functioning again. It will hopefully empty everything so that he doesn't get backed up or need draining, but not produce too much so that we can continue to increase his feeds. We hope to be home within a few days. At least, that's the plan.

Wed Aug 1, 2007

Just after Max settles for the night, we are told that a patient who has to be isolated will be moving into our room. We must move in with a roommate down the hall. The room is just two doors down, but Max wakes during the move. He cries for the next hour -- a crazed cry, thrashing about. The nurses want to inject more pain medication, but it doesn't sound like a pained cry to us. He sounds mad -- just like when he woke from his late nap to see Dick and Jan.

We've been spoiled with the luxury of single rooms during most of our hospital stays. Our move is at least as tough on Max's 14-year-old roommate as it is on us. But once Max calms in Randy's arms, he sleeps soundly through the night. No additional meds needed. When epidurals work (as Max's has), they work wonderfully.

Today Max is back to crawling, sitting, kneeling, standing, pointing, and talking. All in his crib, where he is constrained by not just the usual TPN and Omegaven pumps, but also the epidural pump and multiple monitors. His stoma starts emptying around 2:00, which allows us to start providing the milk he has been signing for all day.

Now that Max is older, he is more obviously comforted by our presence. But there's only room for one parent to sleep in the room, so I head back to Boulder again after Max is down for the night. Randy is better at coordinating our Omegaven pump with the hospital's TPN pump. He can more easily maneuver the wires and tubes stretching from each corner of the crib in to Max. He can sleep more robustly through interruptions. Randy is also the one Max made a beeline for during his thrashing cry. Max didn't need morphine, just Dad.

Thu Aug 2, 2007

I'm a little nervous. Max vomited green at midnight, then again at 3:00 and 5:30 today. The surgeons are not concerned, because his stoma is clearly draining. The vomit might reflect the usual swelling and recovery associated with surgery, and possibly nausea from the oral pain medication that Max starts today after his epidural is removed. Randy thinks I get more worked up over green vomit than I should. I hope so.

Fri Aug 3, 2007

He's up by 7 and down by 7, with his big-boy nap from 11-1. He points to determine our route for the morning's stroll, and shares his trucks with Randy in the evening. In between, he fills Nanny Kate in on his latest adventures. He crawls and cruises, seeming not to notice that we've discontinued his pain medication.

But he also vomits green -- last night, this morning, and this afternoon. His stoma produces moderate output overnight, but very little today. We call the hospital. The nurse first tells us to bring Max to the ER, but then consults with Dr. Partrick, who instructs us to just go back to draining the stoma with the red rubber catheter. We infer that this is a temporary measure, to allow Max's intestine to recover from the surgery, the pain medication, and any associated backlog and dilation. We also infer that this is exactly what we would be doing at the hospital, so we may as well do it at home.

Randy, Max, and Dr. Partrick remain unconcerned. I can't wait to join them.

Sat Aug 4, 2007

Max treats vomiting like a cough or sneeze -- he does it and moves on. He mainly struggles just to keep playing while we try to clean him up. But now our red-rubber-catheter draining is preventing his vomiting, so he can romp uninterrupted. Today his mission is climbing the steps, turning around, and throwing himself down them. He repeats this sequence throughout the day, ascending with a look of determination and descending with a giggle, fulfilling Randy's visions for our padded mosh pit.

Mon Aug 6, 2007

The other comparison comes from a father who says that reading Max's page is like reading the story of his daughter's life. (He is a fellow short gut parent who found Max's page after googling Omegaven -- the short gut wiki is the first hit.) His daughter's story initially strikes me as nothing like Max's -- different etiology, different surgeries, different complications. But then I recognize the familiar rhythms of their lives, all the ups and downs and uncertainty. And the hope. They are waiting for Omegaven. He says Max's story is a ray of hope. We continue to hope that Max's surgery worked.

Tue Aug 7, 2007

Max started off talking exclusively about Dada. Now he barely mentions him. In fact, Randy's latest theory is that "Mom" refers to me, and "Mamom" refers to Randy. Signs are also falling in and out of favor. Max will gladly produce fresh signs like "dog" and "light", but practically rolls his eyes when I try to elicit "bear" and "cat." They're so last week.

He does have his standbys, like "more" and "milk" -- with different signs for drinking from a cup vs. nursing. (The latter is the fist-dribbling-sand sign that we couldn't decipher last month, inexplicably given that this is basically the sign for milk, which we taught him for nursing -- squeezing a fist as if milking a cow.) His stoma problems have limited how often we can satisfy these requests. But this morning, we get the go-ahead to reintroduce feeds, in an attempt to stimulate his intestine. Max is downright giddy. Our red rubber catheter draining continues to prevent him from vomiting. No improvements in his stoma output yet, but the docs want to give things another week. We didn't expect to wait that long. And the docs seem surprised by the fact that his stoma worked well soon after surgery but then stopped working. Max isn't one to fit the textbook descriptions either.

Fri Aug 10, 2007

Sat Aug 11, 2007

Mon Aug 13, 2007

In practice: We have Max's (adorable) passport and 4 plane tickets. Many members of his medical team -- most recently, his surgeon -- suggested their services might come in handy on this trip. Nurse Practitioner Kristin will be the one joining us. She cared for Max during his early days at St. Joe's, helped us out after we returned from Boston, and travels the world through Operation Smile. We have broviac repair kits on order, which the three of us will get trained on.

We have an apartment awaiting us, and a local guide to whisk us to the hospital if necessary. We have Max's medical records, and will get key terms translated before we go. We have our talk abstracts submitted (I arranged for Randy to also give a presentation). We have TPN travel experts to consult with on plugging in pumps in Paris. Friends around the city are eager to meet Max. Other Max-fans are flying in from London and New York for the conference.

And, we have no idea what might happen between now and then. Just theories.

Tue Aug 14, 2007

Wed Aug 15, 2007

We're always relieved to be settled in our hospital room (a luxury single this time around), after the usual several hours of waiting in the ER, getting blood and urine drawn for cultures, and starting antibiotics and Tylenol. Max's temperature starts coming down, and he manages to show a renewed energy rolling around and smiling before going down for the night. His stoma seems to be working fine.

Randy and I sit in our usual evening configuration, working on our laptops -- just slightly closer together than usual. So far, the worst part of being back is discovering that Max's 14-year-old roommate is still here, weeks later. His case is acute rather than chronic though, so he might just get the Hollywood ending we hope for him.

Thu Aug 16, 2007

Fri Aug 17, 2007

The viral theory seems increasingly likely. Max's CRP, which has reliably skyrocketed with his bacterial infections, is a mere 1.6. We haven't received the results of a viral test taken yesterday, but these tests check for a limited number of viruses and so are not definitive. Most kids might experience this presumed virus through vomit (as Max did Wednesday and Thursday morning), fever (which Max had Wednesday), and diarrhea (or high stoma output in Max's case, yesterday and today). Most parents would get to wait this out at home. We can't take the chance, because Max's fevers might signal an infection in his bloodstream that needs to be treated immediately. Thankfully, the bacterial cultures continue to test negative at day's end.

We are welcomed home by Randy's mom, who arrived in town moments after we left for the hospital on Wednesday. Max points to her and says "Nana." A perfect expression of how good it is to be home.

Sat Aug 18, 2007

His stoma continues to function just fine, supporting the idea that his recent vomiting was unrelated to the surgery. We should be able to move on from this episode and resume our longer-term plan, gradually upping feeds as his system will tolerate.

Maybe we just need to get better at recognizing Hollywood endings.

Mon Aug 20, 2007

We've been lulled into a false sense that the word is out there about Omegaven saving babies' lives. After all, if you google Omegaven, the short gut wiki on it is the first hit. If you google short gut, Ellie's blog and the wiki main page show up in the top 10 hits. The problem, we learn from Connor's dad tonight, is that these pages don't come up if you search on what your baby is dying from -- TPN and liver disease -- or if you search on short bowel. Connor's life has been saved, but it took them 6 months of searching to find Ellie's page and Omegaven. Other kids don't have that long.

If you know any google tips that could help direct families to Omegaven, please let us know. If increasing links to our pages would help their google rankings, please feel free to link from your web sites to:

• TPN-associated Liver Disease: http://grey.colorado.edu/shortgut/index.php/TPN-associated_Liver_Disease
• Short Bowel Syndrome: http://grey.colorado.edu/shortgut/index.php/Short_Bowel_Syndrome_(SBS)_or_Short_Gut
• Short Gut: http://grey.colorado.edu/shortgut/index.php/Main_Page
• Omegaven: http://grey.colorado.edu/shortgut/index.php/Omegaven
• our kids' blogs

No word back from Oprah.

Tue Aug 21, 2007

On Eliana's great suggestion, I edit the wikipedia pages on all things short bowel. I create a page on Omegaven, revise the dire prognosis for short gut with a link to this Omegaven page, and add additional links to it from wikipedia pages on TPN, liver disease, and liver failure. I feel giddy again, and repeatedly jump up from my work to hug Randy.

It's short-lived. Five hours later, my "allegation" that Omegaven can prevent liver failure has been deleted. My links to the short gut wiki and to the Omegaven blogs -- Max's, Ellie's, Connor's, and Nora's -- have all been deleted. So have most of my links to the Omegaven wikipedia page. The wikipedia administrator explains that parent activism and a case study of 2 patients (the only paper with infants published to-date) don't cut it. My allegation that Omegaven saves lives is transformed to this statement: "It has gained popularity in children in preference to the more commonly used Intralipid after case reports that it reduced the risk of liver damage." Understatements apparently do cut it.

I get the need for published, authoritative work. After googling me, the wikipedia administrator, a Dutch doctor, gently suggests that my professional expertise would be highly welcome on wikipedia pages related to cognitive neuroscience.

It isn't nearly as easy for me to do something in that domain that might save lives right now. So I'll keep my google efforts focused on Omegaven. We've received good tips from several people in the know, including Nora's dad (who does search engine optimization for a living and just created a Short Bowel Syndrome page). External links apparently do help, so please feel free to link to these Omegaven sites. Our goal is for google searches on short bowel, TPN, and liver disease to produce Omegaven sites in the top 10 hits. Wikipedia can catch up with us later.

Thu Aug 23, 2007

The lives: Short gut babies treated on Omegaven have a 0% mortality rate, compared with 37-90% mortality rates prior to Omegaven.

The science: It's as simple as fish oil -- omega-3's instead of the omega-6's in the standard soy-based lipid.

The politics: Doctors and parents are fighting political battles to get Omegaven to the babies who need it.

The community: Moms and dads are getting the word out through blogs and wikis, saving the babies of strangers who have been told there is no hope.

The cuteness factor: Baby after baby has transformed from sickly green to vibrant pink.

The doctors: Mark Puder and Kathy Gura at Children's Hospital Boston: innovators, mavericks, saints.

Not to mention the ace in our pocket, should SHE ever come calling:

The haven: Many of us called a donated apartment in Jamaica Plain home, thanks to Oprah's inspiration.

Please spread the word if you can.

Sun Aug 26, 2007

The google campaign to reach parents is still on.

Max wants to help. This morning, he grabs onto my laptop stand to pull himself to his feet, and stretches his full armspan to move back and forth between my laptop stand and Randy's. He rolls our track ball mouses. He curls his hand around from behind the screen to tap the keyboard. He makes heavy use of the otherwise-neglected mystery key beside the 1.

Max giggles at Fuzzy in our padded mosh pit, then rolls himself down the steps at her. He staggers around the house behind a mini-grocery cart. He seems to have transitioned from simply being a holy terror to recognizing that he is one. We feel a loss of empowerment from calling off the media campaign. It hasn't rubbed off on Max.

Tue Aug 28, 2007

After checking several ASL dictionaries last week, I finally tracked down the sign for "truck" -- stacked fists moving apart. Max has been signing for trucks ever since. But he can't quite accept that the same sign gets used for dump trucks, fire engines, and forklifts. One of his books, "Duck in the Truck," clearly crosses the line. The title vehicle is actually a jeep. When I point to it and sign "truck," Max looks uneasy. He points insistently at his backhoe.

Randy and I get caught up in the details too. Details like Max's output, which has been high ever since his stoma started functioning again. We haven't been able to increase feeds since his surgery. That last bit of poorly functioning intestine may have been slowing things down so that he could absorb more, until it blocked flow completely and needed to be removed. Or maybe it's bacterial overgrowth -- too many bad bugs relative to good bugs in the gut's delicate balance. Some short gut kids cycle on and off different antibiotics each month to treat or prevent recurring overgrowth. We're hesitant, hoping that Max can get by with limited antibiotics as some other kids have, perhaps by ingesting probiotics (the good bugs, which we haven't tried yet), prebiotics (food for the good bugs, which some people view as safer than the bugs themselves and which Max has been on for a couple months), and breast milk (which can help establish a good probiotic environment). Or maybe with just plain luck. Each person ends up with a unique balance of hundreds of species of bacteria living in the gut. Max has needed antibiotics for bacterial overgrowth only once before, back in May. But his output has increased over the last week, so on Sunday we started oral antibiotics. They seem to be reducing his output, allowing us to finally increment his g-tube feeds tonight.

We're also contemplating details about Max's allergies -- conflicting details from skin tests versus blood tests. And we're working through the details of trying to interest him in eating again after the long hiatus around his blockage, hoping to avoid the oral aversions common in children with short gut.

OT Judy pulls us back to the big picture today. She points out that Max is acting just like a 2-year-old (on his 15-month birthday, no less) -- willful, charming, and demanding. Playing with him is the highlight of each day. But I'd better learn my backhoe from my front-loader.

Wed Aug 29, 2007

Now all of us -- the short gut community and friends -- might just be helping to save more babies. When you google "short bowel syndrome," the wikipedia page on it is #6. This site would have been useless from the Omegaven perspective, since my edits to include information about it were cut as parent activism. But Nora's dad persevered, discussion among the administrators ensued, and the following line was allowed: "Much hope is vested in Omegaven, a type of lipid TPN feed, in which recent case reports suggest the risk of liver disease is much lower." The mere mention of Omegaven on this page is crucial, since googling that term then brings up a page of more up-to-date sites. Searches on "short bowel syndrome liver disease", with or without "TPN", now yield the short gut wiki on page 2.

That seems like good progress over the 10 days since Connor's dad pointed out that these search terms yielded nothing about Omegaven. But the good links are embedded among pages and pages of despairing sites, so our google campaign to save lives continues.

We'll still ask tough questions when Chris defends his master's thesis next month. Some things are harder to change than others.

Thu Aug 30, 2007

His first skin test, just before his birthday, revealed allergies to eggs and cow's milk. That's when we went on our vegan-plus-meat diet. His first blood test, just after his birthday, confirmed those allergies and expanded the forbidden list to include nuts, peas, beans, wheat, soy, and corn. This information came in a letter with the 1-line instruction to cut all those foods from his diet and mine. That's when we shifted to meat, rice, quinoa, fruits, and select vegetables. A more extensive blood test later showed yet more allergies -- to rice, oats, strawberries, bananas, sweet potatoes, chicken, and beef. The letter included the same 1-line instruction to cut those foods. That's when we got a referral for a new allergist.

Not that we couldn't get by even with all those restrictions. Several friends suggested pork lettuce-wraps. Allergy cookbooks sent by colleagues Keri and Scott included dozens of safe recipes, along with colorful cards from their kids with drawings of Baby Max and well-wishes for happy eating.

But we wanted to understand the results better, particularly why the blood tests suggested allergies that the skin test did not. So when Max was recovering from surgery, we consulted with an allergist at Children's recommended by GI Jason. Dr. Atkins explained that when skin tests come back negative, they are 95% likely to be correct. So we've been hoping that the blood tests might be showing false positives, possibly because of the increased permeability of the gut (both early in life, and in short gut kids). Foods proteins can seep through the lining, leading to the development of antibodies but not true allergies. Dr. Atkins also mentioned that blood tests can show false positives to specific foods if there is a high level of total allergen-specific antibodies -- if Max is strongly allergic to a few things, this might lead the tests to suggest he is allergic to many things. But we learned a couple weeks later that Max's total antibody level is high (in the hundreds when it is typically in the tens), but it is not over the threshold (in the thousands) for causing false alarms.

So Max gets 26 substances poked into his back for further skin testing this morning. An assistant distracts him with a fantastical suitcase full of toys. The goal is to find things he can eat, so he doesn't get poked with things we're pretty sure he is allergic to: eggs and cow's milk (based on earlier skin and blood tests), and peas and bananas (based on puffy-face reactions to them). We wait 15 minutes to see which pokes cause swelling. Then we get good allergy news for first time. Max shows only 3 swollen spots -- to the histamine control (which must swell to verify the test is working), soy mayonnaise (though his soy cheese and miso spots look fine, just like the saline control), and peanuts. Everything else gets the green light, including Max's formula (whew!), wheat (which opens up all kinds of possibilities), and pectin to thicken his feeds (should we ever brave that again, given that it was followed by green vomit and surgery last time). Now we can proceed, cautiously, with a wider range of foods.

I hadn't planned to include my breast milk, but Dr. Atkins surprises us by asking for some. The test shows that it is safe too. Not everyone needed to have it scraped into Max's back to know.

Fri Aug 31, 2007

Before Max, I would have thought this would be the end to the story. If you're nursing your baby, at some point, you stop. Even with Max, it's not clear to Randy why this isn't the end to the story -- why I'm still "in the process of weaning" when I supposedly decided weeks ago to have fully weaned by now. Why I'm so buffeted in this decision with each bit of new information -- about Max's allergies, his TPN schedule, or a colleague's weaning experience.

I can't explain it. But I think about how elated Max was when he discovered he could crawl. How he would take off in any direction, like we might if we discovered we could fly. We would struggle to find words to describe the pleasure and awe in our discovery. We would struggle to bring ourselves to stop.

The crazy thing is, it's not even Max I'm weaning. He weaned back in July, when he lost his untethered window from his TPN nutrition along with his appetite. I'm weaning an electric pump.

It's an exacting contraption of funnels and tubes, decidedly bovine. Late in my pregnancy, I emailed a photo of my expanding self to a friend, who replied, "Holy #*$%& moly!" Randy chimed in, "More like holy #*$%& cow!" Little did he know.

I know how lucky I've been to nurse and nourish Max all this time. And how lucky we are to even consider commemorating the end of this era over croissants in Paris.

That makes saying good-bye to flying with Max a little easier. Just a little.

Wed Sep 5, 2007

As usual, we're not alone. Randy and I are following the pages of advice on oral aversions provided by another parent on the short gut wiki, along with suggestions from OT Judy. We're making meals fun (focusing for now on having Max play with food rather than eat it), providing oral stimulation via toys and toothbrushes, and exaggerating our eating motions and our resulting pleasure (an easy enough task the last few days, over tasty meals with family members visiting from Cleveland and LA).

Thu Sep 6, 2007

We'll be back in the hospital before this trip too, for a blood transfusion next week (Max's hematocrit is low again) and possibly a surgical consult (regarding some shifting in and out of his stoma).

For his part, Max seems ready to go go go. He toddles around most of our block behind his walker this evening. He stops to point out his favorite sights -- a barking dog halfway down the street, a plastic play set around the corner, a water meter cover as we near home. And of course, the trucks. He watches, mesmerized, as neighbor Keith drives his skid steer around his remodel. The spell is broken only when Keith stops, loads Max in, and gives him a ride. The spell is very broken. Skid steers are apparently best admired from afar, or at least from familiar arms.

We just might get to see if Max thinks the same of Parisians.

Sun Sep 9, 2007

Mon Sep 10, 2007

At the farmer's market Saturday, Max and I ran into colleagues who are also heading to Paris shortly. When they asked where we'll be staying, I realized I had no idea. Randy and I later discovered that our apartment is some distance from the conference and the sights. It had been booked for us, months ago, to allow us to be close to our local host (who will accompany us on any hospital visits). But now that the trip is upon us, we realize that being close to the conference and sights makes more sense, for coordinating Max's daily procedures with NP Kristin. A search on vrbo.com (recommended by another colleague who visited Paris this summer) yields a promising apartment off the Seine, within walking distance of the Louvre, Notre Dame, and the conference. And not far from the hospital, where Olivier Goulet has received a heads-up about Max, in case anything happens. (Dr. Goulet chairs a team that is pioneering explorations of large intestine transplants, something that Max could look into down the road. We're awed by his work, but hope that we won't be meeting him any time soon.) The last-minute nature of our apartment reservation gets us a 15 percent discount.

Good thing one of us is tactical.

Tue Sep 11, 2007

Today, Randy is finally able to give him blood. Nana spent a couple years living in a remote part of Mexico back in the 60's, which disqualified her and her subsequent children from donating blood, due to risk of Chagas' disease. None of them ever showed any signs of having it. (We only learned of the disease when Randy tried to donate blood.) But if you check the box for living in southern Mexico or the box for having a mom who did, you are automatically ineligible -- until now. The US has just begun testing blood donations for the disease, rather than disqualifying potential donors. (Such testing has been mandatory in countries where the disease is endemic.) Randy is negative, so his blood gets pumped into Max for a couple hours this afternoon.

I still don't weigh enough to donate blood. Croissants should help.

Wed Sep 12, 2007

I'm still trying to not get too attached to the idea of being in Paris tomorrow. Max is helping, by pulling stunts like spiking a fever during his hospital check-in yesterday, then vomiting up his tylenol. But again, there was no neon, and his temperature normalized quickly and has been rock solid since. Blood cultures were taken just in case. They are testing negative for infection, and his CRP is normal. If the trip happens, we'll appreciate it all the more.

It's not all bad, the in-box never being empty.

Fri Sep 14, 2007

The rest doesn't matter. Like my sprint through endless rows of long-term airport parking back in Denver to retrieve Max's forgotten carseat. Or how long and hard Max fights sleep on each flight. Or now, as our flamboyant nasalizing of the French language leads our cab driver to head not to our apartment on Rue Seguier, but to the distant Avenue Segur.

We eventually find ourselves winding past the boutique shops and cafes lining the narrow streets to our place on the Seine, just south of Ile de la Cite. A private courtyard separates the residence from the surrounding bustle. Max cruises the spacious apartment, inspecting the monkeys and birds on the elaborately decorated linen-covered walls. It also doesn't matter that our last-minute lodging switch means that we must move out to a hotel for our last night.

We're here. It's perfect.

Sat Sep 15, 2007

It's true that a highlight of the trip for Max so far is the matchbox cars brought to dinner tonight by the 2.5 year-old son of friends. But he also claps as we stroll around Notre Dame, the Pompidou, and St. Sulpice. We've never appreciated the Seine quite like we do when Max points to it and signs "water." And the four flights of stairs spiraling up to our apartment would just be exhausting at day's end, but Max makes them fun, pointing upward to encourage us throughout the ascent.

Yes, this trip is for Randy and me. That's why we brought Max.

Mon Sep 17, 2007

Some of our confusions are harmless enough -- like washing our laundry load four times, without detergent, and finally hanging it to dry because we can't decipher the combination washer-dryer in the apartment. Other confusions are decidedly more awkward -- like not knowing how to approach the locked entry to our courtyard when a man is urinating on it. The proper etiquette is apparently not to proceed as if he weren't there. Our colleague Linda Smith tries this strategy when visiting us this evening. I can't figure out how to buzz her in, so I spiral my way down while Linda endures indignant bursts of "Madame! Madame! Attention!" -- as if she had stepped on the man's dinner of snails rather than discovering him peeing on our door.

We take a cab back from a party near Montmartre tonight, at the apartment of one of the conference organizers. I think we do a commendable job in our broken French, asking the driver to first drop Randy and me off at our apartment, and to then take Linda and colleague Karen Adolph to their hotel. But the driver suddenly stops and orders us out of the cab. We try to explain that this is not what we are requesting, that we aren't at either destination. But he just points to his meter and gestures adamantly for us to go. We stand in the rain, abandoned, trying to orient ourselves.

Part of what made the French film and our conversation with Nana so entertaining was not quite knowing what was going on. There's plenty of that kind of fun to be had in Paris.

Tue Sep 18, 2007

I've heard the developmentalists at this meeting speak many times, but not with the new perspective from Max. Karen Adolph presents meticulous data documenting that toddlers fall an average of 90 times per day. It's part of their natural course of motor learning. Max doesn't come anywhere close. Annette Karmiloff-Smith describes how the environment can exert subtle but pervasive influences on otherwise genetic disorders -- for example, with parents unknowingly changing how they treat a child upon learning that the child has special needs. I think about how we need to hover around Max when he is tethered to his pumps. It means we're there to catch his falls.

Randy and I jump for joy seeing Max at the end of each day, when Kristin brings him to the conference center. Our days apart seem long, especially after discussing his condition with friends here. They have been following his story, so they know about the ups as well as the downs. But what feels grueling in the abstract always feels more manageable when we're with Max, even (or especially?) when he is pushing me away so that he can wander untethered through the crowds of French students. I know he's happy to see me too though. Having learned this end-of-day routine, he talks about "mama" with Kristin all the way to the conference site. Now that's a good way to design a system.

Wed Sep 19, 2007

I'm not the only one suddenly consuming. Maybe it's all the genuine "mmmmm" sounds we've been making during our meals here, but Max has become increasingly interested in his Cheerios the last few days. This afternoon, he moves on to try everything we are snacking on in the apartment -- potato chips, apples, proscuitto. He seems delighted to be eating again.

Like mother, like son.

Thu Sep 20, 2007

We move to a hotel just north of the Louvre for our last day in Paris. Randy and Kristin cram into a taxi with all our luggage. (Thankfully, this driver is not inclined to abandon his passengers, no matter how bad their French, halfway to their destination.) Max and I make the move by strolling across the pedestrian bridge over the Seine.

It's the eye of a businessman that Kristin catches here. He talks her up for several hours in cafes this evening.

Little do these guys know how Kristin has made this trip come true for us. There are the obvious ways, like taking care of Max for three days straight during our conference, and facing the daunting tasks of single-handed bathroom stops and Max's cares on the streets of Paris. (The long spiral staircase means not returning home until day's end.) Another obvious gift is date night, which Randy and I enjoyed yesterday over a classic French dinner at Allard, an intimate restaurant near our apartment.

But the smaller gifts are what make the trip seamless. Like rising early today to bring in delicious pastries and the rare find of Parisian coffee to-go, so that we can fortify ourselves while packing Max's things for the move. Like filling us in on the moments we're missing with Max, such as when he stares at a man while riding a boat bus on the Seine. Max alternates between pointing to his nose and pointing at the man's face. Kristin tries to discreetly confirm that yes, the man has a large nose, while moving Max on to other topics. Like carting whatever needs to be carted, to get Max and his equipment up and down however many stairs we face.

Without Kristin, this trip wouldn't have been possible, let alone so sweet.

Fri Sep 21, 2007

We're fantasizing about sleep, but also about our next trips. We can't get over how perfect this one was. Kristin asks about our favorite moments. Hers came upon seeing her reflection with Max in a shop window, with the city spilling out behind them. Randy had a similar Max-is-in-Paris! epiphany, sitting with him on the steps of the Pantheon the day after the conference. I don't have one highlight like this to single out -- just lots of images of wandering without any particular destination, wherever the sights and sounds and smells led us. To eclairs after the Jardin du Luxembourg, where the toy sailboat Randy rents "for Max" reminds me of Toshio's puzzled reactions to Randy's repeated gifts of model airplanes. To ramen in Japantown, where the waitress holds Max while Randy and I slurp, before we wander over to the Opera House. To the frenzy of kick scooters and ball-chasers in the kid-fest that we stumble upon outside the Palais Royal, just before Max goes to sleep for his last night in the city.

Fuzzy and Neko linger and meow for our attention when we return to Boulder. But we focus on setting up Max's next round of pumps before collapsing into bed, trying to hold onto what we can from a trip that already feels like a dream.

Tue Sep 25, 2007

He seemed oblivious to jet lag on this trip, sleeping 14 hours on the nights soon after the transitions in both directions, followed by mostly 12-hour nights. But after his second day in Paris, he spent a couple hours in the middle of the night systematically rehearsing all of his familiar sounds: MA MA MA MA DOU DOU DA D