Lucas Camilo

We’ve been busy lately – getting unpacked and moved into our new place, hanging out with Lucas and family over the holidays and then getting back into the school routine, and now getting prepared for a baby to show up in just a few weeks (!).  But in the midst of all that, we’ve been excited to realize that Lucas is slowly making friends.

Lucas’s social life is hard to describe.  With us, and the adults closest to him, he is charming, funny, stubborn, and very fun to talk with if you’re willing to talk with him exclusively about the things he is interested in (read: dinosaurs.)  Lately his verbal communication has gained new territory, including using first person pronouns to refer to himself much of the time (a huge shift from six months ago) and using phrases like “I like…” to tell us about preferences.  People often assume Lucas is a cognitively typical kid, but the truth is that when it comes to conversation Lucas is not like your average 5 year old, and that is not just because of his physical limitations on speech.  We’re used to it and often just grateful that he speaks at all.  But there are times when of course we wish so much he had more of a range of conversation so we could ask him about feelings, hopes, desires, etc.

And even more challenging (at least for us) is to see Lucas clam up around most other people, so they can’t even see the smart or hilarious Lucas that we get to see.  Often he’ll be cracking jokes with us – making up silly words, coming up with random ideas like “what if we name the baby ‘Dreadnoughtus’!?!” (that would be the most recently discovered, massive dinosaur.)  Then, when a friend comes over to visit, he’ll get quiet.  And at school we hear he rarely spoke for the first two months.

My biggest fear about kindergarten was that all the other kids would make friends with each other but not Lucas.  Part of that was about knowing how little he talks with other kids, and part was knowing that kids’ fear of difference could be a huge barrier for Lucas.  But all that worry seems to have been for naught.  First, Lucas has never shown or told us that he’s worried about making friends.  And secondly, kids have gravitated toward Lucas.  If you ask Lucas who his friends are, he’ll consistently name three kids in his class.  But then recently he’s started naming other kids – kids who’s names I can’t even connect with faces yet.  I don’t know how five-year-old friendships form, but it seems that lots of verbal communication isn’t a necessary component.

Since he’s making friends, we decided in late November to venture into the world of play dates.  Lucas has never had unmediated time with other kids, mostly because the only kids who come over are his cousins or our friends’ kids, so all of them come with parents.  And if he interacts with them it’s all through us doing a lot of interpreting and helping facilitate play.  So when I called the first mom to see if her son (I’ll say “J” since I haven’t asked these kids’ families for permission to write about them) could come over to play, I was as nervous as asking someone out on a first date.  What would happen?  What if J was indeed into Lucas, but Lucas didn’t reciprocate?

Burke was out of town, so when J showed up it was just the three of us.  I had Lucas up in a chair that sits on the couch with a stack of dinosaur books.  J came in, said goodbye to his mother, and sat down next to Lucas.  He was shy with me in the room, so I wandered into the kitchen.  And then he started talking to Lucas, asking him which book he wanted to read.  Lucas answered, J didn’t necessarily understand, but neither of them seemed to care.  So J picked out a book and started “reading” it to Lucas.  Of course he’s a kindergartener, so he was mostly pretending to read.  I could hear Lucas correcting him on some of his dinosaur identification, which again J didn’t understand all the time.  But sometimes he did, and Lucas seemed to either not care that J didn’t understand all the time, or maybe he just appreciated that they were trying.  The amazing part for me was to hear Lucas actually talking to another kid unprompted, and to hear this other kid, who adores Lucas, asking him what he wanted to do.  I was elated!

Since then, Lucas has had one more very successful play date – this one over the winter break with one of the girls in his class who loves him most.  She also came in asking Lucas what he wanted to do.  When he paused, she told him that with her other friends they like to make cards for each other.  So we got out construction paper and she cut out a heart and wrote something sweet to Lucas.  I helped him as he drew her a dinosaur and wrote “I like you.”  Burke helped them play a board game, and then we left them on their own to argue over which apps they’d play on the iPad.  Even that — Lucas arguing and negotiating with a friend — was so new and exciting!

And there’s even more evidence that his classmates like Lucas.  He’s gotten invited to birthday parties, and the parents tell us it was their kids idea to invite Lucas.  This week in PE class the kids have been roller skating, and Lucas has been whizzing around the room with them on his built-in wheels.  Apparently today half the kids in the class wanted to hold onto Lucas and his chair while they wheeled around the gym (with his nurse in roller skates pushing!)  It was was such chaos of kindergartners and wheels and everyone tumbling over everyone else to be near Lucas (and the stability of his wheelchair) that they had to make a rule that only two kids at a time could skate with Lucas.

I never could have imagined way back in September that they would have to make rules limiting the number of kids hanging onto Lucas at one time.  And although I knew I was nervous about him making friends, or even being accepted, the relief I feel seeing friendships form is so huge I can almost feel the worry melting out of me.

Some of this is hard to write about because we know that lots of kids aren’t as lucky, that for many reasons – including ongoing, deep prejudice against people with disabilities – they don’t make friends.  And the superstitious part of me wants to knock hard on wood.  Just because his kindergarten peers are sweet, nothing is guaranteed for next year.  Or middle school.  So even given these small but major victories, we’re of course still going to work with Lucas to help him develop social skills for down the road.  But for today we are celebrating these awesome Orca kindergartners who have taken Lucas in as one of their own.

(We joined Lucas and his kindergarten crew for the annual Orca MLK march this morning and here are some pictures.  We got some cute shots with his friends but figured we shouldn’t share without parents’ permission.  But you get the idea… His sign says “Be Nice to All People.”)

Lucas carried the momentum from all his spring break animal adventures into school over the last few weeks.  He continues to make gradual progress with his power chair driving and is also learning to use a special iPad set up to be used as a assistive communication device.   In classic Lucas style, he’s much more interested and amused by the idea of turning the communication program into a game, and especially loves stringing together long, repetitive, sometimes-garbled sentences and then playing them over and over again… all the while smiling proudly at his work and repeating the nonsense the device is spitting out, even hours later when we’re doing something different.

I’ve been thinking lately about some puzzling challenges and paradoxes in relation to Lucas’s behavior and development (this is Burke writing, by the way.)  Now, I’m not a social scientist or anything so this is not based on any scholarly research about childhood development, or disability.  Which is to say that I don’t really know what I’m talking about.  But as Krista and I often find ourselves observing and talking about the weird, fascinating, and sometimes frustrating contradictions of Lucas’s personality, I figure its worth sharing a little…

One example is how Lucas relates to other people, especially in groups.  To begin with, communication is difficult for Lucas because of the weakness related to his disability which makes it hard to be in a position to see what’s going on and then communicate about it, and also leads to him having a quiet voice, slurred speech, and a limited ability to carry on longer conversations.  (Ok, that last one is an understatement, but we’ll get to that more later…)  A few weeks ago Lucas went through a very tough stretch in terms of hanging out with other people.  The low point for me was our attempt to take him out to a Jewish seder that a bunch of our friends had organized.  It was such a great community event with lots of people who know Lucas and were excited to see him.  But after about five minutes he was done, constantly on the verge of tears, demanding to go home, eventually agreeing to read books with the awesome childcare volunteer Mollie but still just barely holding on.  A few minutes later, though we had to leave shortly after the program got started and it felt disheartening, for me at least.  As soon as he got back in the van, Lucas was happy as could be.

Events like this had us talking and wondering – what is that frustrates Lucas about these interactions with other people?  Is he starting to recognize the limitations of life with a disability?  Maybe sometimes he just doesn’t have the energy and patience to try to communicate.  Or is it just a typical phase for a kid his age, throwing tantrums when he doesn’t get his way (in this case he had made it clear from the beginning that he would have rather been at home reading books).  It’s tough to know because Lucas doesn’t verbalize to us any of his emotions, or explain the reasons behind his desires.  But he does get pissed when he doesn’t get his way.

Just when I start to wonder if we’ll ever be able to participate in a group activity with Lucas (other than going to the library, zoo or aquarium) he had a couple of great interactions.  We had some friends from CISPES over for a “Education Night” involving some political readings, and though he preferred to watch Winnie the Pooh for the first part of the evening, we got him in his chair before bed and he proceeded to wow the crowd with his ability to spell the names of  all the characters who roam the Hundred Acre Woods.  He was so proud of himself, beaming as he belted out the letters, as if on the verge of winning the spelling bee.  He had a few other great interactions in the ensuing weeks, including a poltluck at our house last Sunday and a  service at the Valley and Mountain church in south Seattle.  So we know that he can do it.

You can see the baffling contradictions of Lucas’s development at these moments.  On one hand, he’s keenly aware of people around him, repeating something that someone says a moment later – with the perfect intonation and in a way that makes it obvious that he knows he’s making a hilarious joke, and one that comes across as advanced for a four year old.  Or, he’ll go through and name a type of insect that starts with every letter in the alphabet from A to Z (Harlequin cabbage bug anyone?)  He can almost do it with dinosaurs too, incidentally.  The point is, he’s a smart kid.  But then someone asks him what he did at school that day and he can’t answer.  Maybe it’s just that he’s refusing to answer, but the way he responds it seems like he genuinely doesn’t know.  It’s kind of a mystery.

What I can say with certainly is that his cognitive development is not typical.  We used to say that he has a physical disability but that mytubular myopathy does effect his mental development.  But even though I still say it sometimes, I don’t actually think its true.  Nor do I think he falls on the autism spectrum (though we have at times considered it).  His development delays are pretty unique… something that deserves more description as I’m curious what other MTM parents (as well as parents of kids with other disabilities) have to say about it.  People sometimes hear us describe this and try to minimize what we’re seeing, saying it’s no different than a typical four year old.  The truth is, some of these things are regular-old-kid behavior… But we also see things that seem socially, emotionally, or cognitively unusual for a kid his age, and we want to acknowledge and even be curious about that part of Lucas, too.

The most obvious example is his continued insistence on using the second person to refer to himself – and conversely, the first person to refer to someone he’s talking to.  So Lucas will say “you want to read a book!” or “you’re going to go to school today” when referring to upcoming activities that he plans to engage in.  When we correct him he’ll say “I want to read a book” drawing out the “i” sound so as to emphasize the change.  But then moments later he’ll be back to saying “you.”  And whenever I do something funny that makes him laugh but that he doesn’t totally understand he’ll say “What did I do??”, meaning, of course “what did daddy do?”  It’s our own fault, in a way, because a few years ago when he started doing it we cracked up every time, thereby reinforcing the behavior, especially since Lucas loves to make a good joke.  But now he’s months away from his 5th birthday and still doing it!  Krista and I, as well as his nurses, are used to it, and we often correct him but sometimes just continue with the conversation.  For others, its jarring and contributes to the challenge of communicating with Lucas, which already requires a lot of patience.  His favorite way to answer a question is “you want me to tell you!” which is basically his way of saying “I don’t know” but literally means “I would like you to tell me the answer” with the pronouns reversed.  Trying to explain this to the person who has just asked “what’s your favorite color Lucas?” is kind of like doing a rendition of “who’s on first.”

The “you want me to tell you!” refrain deserves special mention because it is the single phrase that Lucas most often says – by a longshot.  I’ve started to think of it as an expression of his confusion – and perhaps, incipient frustration – with his disability.  Lucas is prevented from doing so many things because of his extremely limited mobility, and I think that he’s starting to realize that and internalize the frustration that it leads to.  The exasperation I sometimes hear in his voice when he says “you want me to tell you!” conveys that sense of immobility.  It’s like he’s saying, “I have to ask you for everything else – books, game pieces, moving my arm when its stuck on the couch – so I might as well just get you to answer that stupid question for me too!!”  Who knows, I’m probably reading too much into it, but there’s no doubt that oftentimes when he says “you want me to tell you!” he in fact has an answer to the question and chooses not to say it.

As I’ve been writing this post over the last few days Lucas has been doing especially great.  He’s just sooo happy sometimes, and his smile and joyful high-pitched voice at those moments is infectious.  My parents and I took him to the Burke Museum on Sunday and after checking out the small dinosaur exhibit we spent nearly an hour playing with little plastic dinosaurs, and he was ecstatic.  Then we picked up some dinosaur quiz cards from the bargain rack at the bookstore, and one of them asked “what’s the longest name of any land dinosaur?”  The answer, of course, is Micropachycephalosaurus.  I told Lucas that, he repeated it, and we went on to the next question.  Later that night I asked him what the longest dinosaur name is – and without skipping a beat he said “Micropachycephalosaurus!”  And this from a kid who still doesn’t use “I” when referring to himself.  Go figure.

Lucas was back to sleeping well for a few nights last week, but then fell off the wagon again this weekend.  Last night he woke up around 2 am and never went back to sleep.

Somehow he was in great spirits this morning, including telling an epic tale of just about everything on his mind.  Lucas recently has gotten into hearing us make up stories and trying to make up stories himself (in contrast to many years of insisting on just stories out of books).  He’ll tell a “bald eagle story” or a “gazelle story” that lasts a couple minutes.  But this morning the saga went on and on and on.  At one point in the story the Gallimimus (a dinosaur featured in a book he and Burke read around 5 am) went to visit Papa, then turned on the Christmas tree lights, only to have Papa put it in a container.  A large container with four T-Rexes.  We got out paper and transcribed this much of his story…

The gallimimus ran across the neighborhood.  And then Brooksy went really fast, and the velociraptor ran across the gallimimus.  Just then the gallimimus ran to the caravan, and the gallimimus saw a triceratops at the Burke museum.  And he also saw a glyptodon climbing up on trees.  And just then the velociraptor grabbed the gallimimus.  He was really sad.  He never went to the taxi van with the velociraptor.  And the velociraptor made a mistake… the velociraptor decided to make a mistake.  The gallimimus turned his head around, and he saw a bunch of foxes.  And the gallimimus said Bow Wow Wow.  He looked around at a bunch of pictures for the T-Rex.  And the gallimimus almost got into a crocodile, when the crocodile snapped the gallimimus.  The crocodile went along the beaches, and he looked in his pocked and saw a bunch of needles and he threw them out.  Because the velociraptor and the crocodile and the gallimimus all played together, watching the bald eagle video.  The gallimimus was very busy, that the velociraptor looked up in the tangerine sky.  When he got in the tangerine sky, he looked.  And the gallimimus went to Whidbey Island.

A key to some concepts:

Gallimimus, triceratops, velociraptor, and T-rex: dinosaurs

Glyptodon: prehistoric armadillo-like mammal

Brooksy: a dog Lucas met and loved last year

Burke museum: Seattle natural history museum, with dinosaurs

Taxi van: a highlight for Lucas of our trip to LA was going in a wheelchair adapted taxi

Bow Wow Wow: what the puppy says in the book “Little Yip Yip”

Bald Eagle video: Lucas’s favorite part of our trip to the audubon center on Saturday

Tangerine Sky: Yes, Lucas loves Lucy in the Sky with Diamonds, Caspar Babypants-style

It’s been nearly two weeks since our last post and there’s too much to recount.  One exciting thing is that Lucas got to meet two other kids with similar disabilities: a 4-year old with MTM whose family we’ve been hoping to connect with since moving to Seattle, and a 2-year with spinal muscular atrophy (SMA) whose family we met through an occupational therapist.  It must be fascinating for these kids to meet each other and see someone else with similar special needs.  In the first case, both Lucas and Trent have a trach and vent (which is not something you see every day), and in the other case he and Mari were facing each other in identical special needs chairs.  Lucas kept his cool, however, showing interest but also a bit of trepidation when we started getting them to play and interact.  We look forward to continuing to meet up with both families as well as others in the Seattle disability/special needs community.

We’ve also both been traveling: I was in New York 2 weeks ago and then to Chicago this last week, and Krista is in Portland now.  The three of us made the trip to Whidbey Island to spend time with my parents and check in on the Greenbank Farm Loganberry Festival (see photo), while also making various trips to the farmer’s market, Seward Park, Montlake play field for a picnic (on the wrong day, but we had fun anyway) as well as some local outdoor festivals.  We’re getting used to traveling in the new wheelchair van and its working out great.

Lucas loves the new van but he’s pretty ambivalent about going places.  In fact, he’ s been pretty moody overall lately, demonstrating regularly that his favorite word is “no”.  When he’s in one of those moods and we suggest doing something other than reading his current favorite book or listening to his current favorite song he almost  inevitably declines the invitation with a scornful “no!”  What’s humorous, and also frustrating, is that he often goes along with the proposal, eventually — either because we give him no choice or do enough coaxing to convince him — and then 9 out of 10 times he ends up having a blast.   Or perhaps that’s an exaggeration… at least 7 out of 10 times he ends up either having a blast or finding whatever we do tolerable enough to forget all about the initial, scornful chanting of “no!”

But we’re left perplexed at why he’s so insistent, initially, on not taking a bath (for example) when in fact one of his favorite things to do is splash around in his personal mini-tub with the family of sea creatures.  We have to go through the whole list of creatures before he finally agrees:

“But Octy the octopus will get in the tub with you…”

“NOoo!”…

“and Killy the Killer Whale”… ”

No!”

“and Wally the walrus…”

“No”

“and Nemo the Clownfish…”

Silence.

“And Humby the Humbolt penguin…”

“Yeah!”

I can’t help but wonder what goes on in the mind of a two-year old like Lucas that makes him rarely want to go outside or try anything new .  Is he just going through a personality stage of being a little stubborn, the usual “terrible twos?”  Or does it actually have to do with his muscle disease and discomfort that he feels, at least initially, when moving to a new situation?  Or perhaps — since resistance is almost assured every time we get ready to leave the house — it has to do with social anxiety, a creeping feeling that he’s different than other kids and a reluctance, therefore, to avoid facing tough situations.  The latter seems unlikely given the fact that he’s usually pretty agreeable when he meets new people, and as we’ve shown in videos and described over and over, he can be just about the happiest, goofiest, cleverest kid you could imagine… when he wants to be.

At this point, Lucas is most happy when laying on the couch reading books.  Which is all well and good, except that anyone would get tired reading the same book (or same 4 or 5 books) over and over with a kid.  Just ask Lucas’s grandparents, or his nurses (3 of them who spend only about 6-7 hours of waking time a week with him but nevertheless lose patience)… or his parents.

Every parent knows that there are tough things about taking care of a kid and we certainly don’t want to complain.  One need only peruse the majority of posts on this blog about the joys of being Lucas’s parents to know its good much more often than not.  Still, because Lucas can’t walk or move around by himself, and because his communication is still limited (even as it continues to improve), it’s tough some days to be his sole caregiver.  I  have days taking care of Lucas when I can’t help but wish that we had a TV and that he liked watching TV (neither of which is the case) so that we could just let him be on his own for an hour without us.  Alas, he’ll watch a youtube video for 5 minutes when we need a break but inevitably he gets bored and calls us back over, demanding more attention, more books.  The fact that he prefers books to TV is great, and yet…

I write all this during Lucas’s midday nap on Sunday.  Then, when he wakes up — as if to prove me wrong — he’s in a good mood and doesn’t bat an eye when I say we’re going to the lake.  We spend two hours walking the paths of Seward Park, lying down my the water looking at waves, ducks, doggies, trees… I get a few exclamation of “no!” but all-in-all it’s a great afternoon.  Once again I feel lucky to be Lucas’s dad… as he drifts off to sleep reading “Baby Dolphin’s First Day” for the 50th time this weekend.

Postscript – Here’s something else I was working on late last week and during Lucas’s naps this weekend: a website for Eagle Scouts returning their badges in protest of the Boy Scouts of America’s decision to continue it’s policy of excluding gay people.  Lucas gets a mention in my own letter so it seems relevant to this blog:
http://eaglebadges.tumblr.com/post/28355556567/july-25-2012-to-bob-mazzuca-chief-scout

First off, happy Martin Luther King Jr. Day!  Here’s a video of some of his lesser known quotes, which seem just as poignant today.

As for Lucas, things have been good lately around our house.  However, he had a couple of not-so-good nights of sleep last weekend which led to him act really grumpy.  We often marvel at Lucas’s very positive demeanor, especially given all that he went through as a baby (he had more shots, surgeries, doctors visits, time in the hospital, etc before the age of 1 then most kids have in their entire childhood).  He hasn’t had to deal with major health issues more recently but he is still extremely limited by his muscle disease.  So the fact that he’s so good natured – rarely crying or getting fussy – has been relieving to say the least.

Last weekend it looked like that was all about to change.  Lucas is usually picky about which books he wants to read but for a few days straight he refused – with a defiant “no!” – just about every title we offered.  The animal cards memory game was also repeatedly shaken off, and a skype chat with the grandparents offered little respite.  He cried throughout much of his physical therapy appointment and refused to go up in his stander at all.  The only thing he wanted to do was watch penguin videos on the iPad, which he let us know by chanting over and over “ha-hee-der, ha-hee-der!” (Lucas-speak for computer) while moving his hands in the accompanying sign.  There are some educational apps that Lucas now uses on the iPad but he refused to play those, and we refused to let him watch the same silly penguin video on repeat.  It was a stand-off.

Then he got a good sleep on Sunday night and suddenly things were back to normal on Monday.  We breathed a sigh of relief that perhaps the terrible twos had been averted once again… but the tiring weekend also got us thinking.

Nona engages in another round of "animal cards"

In a way, Lucas has a right to be an impatient toddler.  Like most 2-year olds he has an inquisitive mind, wanting to explore all the fascinating things the world has to offer.  And yet, the world that Lucas physically has access to consists of a 12-inch radius semi-circle around his head when he’s lying down, and is even more limited when he’s sitting up.  He can’t move his body or even roll over, and is therefore almost completely dependent on us to fulfill his whims and desires.  Given that muscle disease also limits his ability to communicate – even as his progress in using sign language and verbalization has been remarkable – those around him don’t always know what he’s after.  Whereas you can set a typically developing kid loose in a playground or in room full of toys and they’ll entertain themselves for hours, with Lucas just about every game or activity imaginable requires a helping hand.  If he’s coloring he needs us to hand him the markers.  If he’s reading he needs us to get and then hold the book.  If he’s done with the book and ready for animal cards, he needs us to reposition his body and set up the cards.  The fact that Lucas is smart and seems to crave challenges and stimulation is wonderful but it also means his needs can be constant.  For his parents and other caregivers it’s tough work.

In some ways this new dynamic is exciting – it’s much better, and certainly more rewarding, than the hyper-vigilance we had around medical issues when Lucas was a baby.   Indeed, for a kid with less possibilities for entertainment and fun, Lucas manages to go along with and even suggest new ways to play and engage with the same set of books and toys each day.  He basically invented the aforementioned animal cards memory game, for example, after getting bored with just holding up cards and doing the sign for each animal.  There are certainly times when we wish he were a little more open-minded when it comes to trying new games, and a little less demanding when it comes to playing the same one for the 15th time in a row.  But such is parenting a 2-year old – his disability doesn’t really effect that dynamic, just the terrain on which it plays out.

Ultimately the terrible twos may still come, and we’ll figure out a way to deal with it (including asking friends and family for wisdom.)  Last weekend made us feel lucky about Lucas’s usually easy-going personality even as he faces the challenges of living with severe muscle disease.  We also know that more difficult times are ahead, whether as part of so-called terrible twos or some other stage of development. And as his needs continue to change we’ll keep doing our best to be thoughtful and patient parents in order to help him take on those challenges.

Have we mentioned that Lucas is still growing?  He’s soooo tall – off the charts, shocking people when we tell them he’s only two.  We have a bed in the back room that Lucas uses the four nights a week when he has an overnight nurse with him.  He’s been pushing the limits on this mini-crib for months now, with his toes sticking out the slats even when he’s lying diagonally.  But we haven’t wanted to buy a whole new bed for him, especially as we’re getting ready to move.  So on Thursday he spent the last night in the old crib (photo at right); the next morning we got a piece of plywood, screwed it down on top of the crib,  threw a two-inch piece of foam on top of it and… voila!  New bed.  It probably looks terrifying to anyone who knows how wiggly most two-years old are, but given his limited movement we can assure you that Lucas won’t roll out of bed any time soon.

We’re proud of our ingenuity, and Lucas seems comfortable on his new/updated bed.  It’s good to be able to build Lucas-friendly accessories ourselves, though we look forward to settling into a place where we can really accommodate things to be accessible and comfortable for him.  And at the rate he’s growing, it feels like the clock is ticking.  He’s about to grow out of his car seat (and ultimately, out of our small car), so next up may be a new vehicle.   However, we’re not sure how far plywood, a drill, foam padding and duct tape will get us when it comes to renovating the old Honda Accord…

It’s been over a week since we posted last, but not for lack of material. Lucas is perfecting his rapid-fire pucker kisses.  Burke has shifted into a new position at work.  Krista is taking another writing class. And all three of us are excitedly anticipating our first batch sauerkraut, which is now 2 1/2 weeks into fermentation and making the whole house smell like a juicy compost pile in August. The smell has been so pungent at times that we’re thinking we might spare Lucas on this first experimental batch. But assuming the two of us come through the first kraut unscathed, Lucas will definitely be getting sauerkraut in his smoothies very soon. (If you haven’t caught wind of the amazing health benefits of natural fermentation, check out Sandor Katz, www.wildfermentation.com.)

Speaking of Lucas’s amazing foods — he’s still eating well and growing (length-wise more than girth). We saw a new G.I. doctor last week, and she was great. Not only was she was very supportive of Lucas’s homemade smoothie diet, but she made it a point to ask us a few times if we were getting everything out of the appointment we needed. Such a relief, and such a contrast to past experiences!  Since Lucas hasn’t gained much weight in a couple months we’re adding a little bit more avocado and some coconut oil to his food. The other day we had fresh pineapple, so Lucas got his first ever pina colada (plus beans and broccoli and carrots).

Burke’s in New York City this weekend for a Resource Generation meeting, so it’s just Lucas and Krista at home for the weekend. This morning we had friends over for brunch and a raucous game of Speed Scabble/Bananagrams. Lucas was quiet at first (maybe suspicious of people who could have so much fun with a stack of tiles of small letters) but he warmed up to having all the company.  He happily showed off his xylophone and kissing skills, and was thrilled to have more people read him books. He even twisted Janelle’s arm until she agreed to do a dramatic reading of Make Way for Ducklings. It was a great day, but we’re looking forward to having Burke home tomorrow night.

Yesterday Lucas turned 18 months, which would be hard to believe if he weren’t acting so mature lately (check out this post from his first 1/2 birthday to see how much he’s grown in a year).  He’s continuing to develop more preferences and an ability to communicate them: sometimes he wants to cuddle, sometimes he doesn’t; sometimes the only toy he wants is his suction tube; almost any time he’s on his daddy’s lap he wants to be flipped upside down; and usually when the camera comes out, he wants so badly to hold it himself that he stops whatever cuteness is going on to demand we show him the pictures. But we’ve managed to get a few cute shots of Lucas recently, especially with friends visiting, so here they are. Happy half birthday to Lucas!

Playing with the suction tube

Hanging with Laura during her visit from El Salvador

Happy baby pose (while admiring myself in the mirror)

Nap time

Hello neighbor!

Lucas fits into the big-kid FMLN shirt. Hooray!