Lucas Camilo

As we blog less frequently, the list of things we could report on starts to pile up. We took Lucas on a big trip into the Shenandoah woods with friends this past weekend. We’ve been going for more walks around the neighborhood as the weather cools. Lucas is learning his colors, and if you ask him what color the trees are, he’ll say “neen.”  One of Lucas’s most devoted blog followers (besides his grandparents) was in town from California last week, and she and Lucas got to meet for the first time.

And disability has felt harder recently. It’s scary as we think about the future; infuriating when people gawk at Lucas when we’re out for a walk; tiring as we go through our limited routine of books, blocks, puzzles, and computer games over and over and over; complicated as we relate to more people about parenting, feeling like most of our experience is happening on a different planet than typical families.

So we think we might write about all of that at some point. In fact we were thinking about writing about some of it today. And then this afternoon, after a year of HATING finger paints, Lucas changed his mind. And suddenly that seemed like the most important thing to write about tonight.

Because for about a year, we’ve tried to convince Lucas to use finger-paints. He’ll draw with markers and crayons, but that’s complicated for a kid who has so little muscle strength. He’s taken to using watercolors recently, which require less pressure on the paper, but that takes precision that he did not have six months ago. Finger paints seemed like the obvious solution – so much less precision needed, so much more color with less brush strokes. But every time we tried, just barely touching his finger to the wet paint, he’d lose it. More than once he got so mad that he turned red and set off his pulseox alarm just at the sight of one of us finger painting and asking him if he’d like to try.

And then today, Krista asked him if he’d like to finger paint. Lucas signed a timid “yes,” and he gave it a try. And then he proceeded to ask for more paint and more paint and more paper and more paint for the next hour and a half. It was awesome.

Lucas had a good weekend, highlighted by his first trip to the Unitarian church up the street.  Krista has been going to All Souls for years but officially became a member today.  We’ve gotten to know a bunch of people the social justice-oriented congregation, especially through a class she took there called “the Soulful Path,” so it was fun to introduce them to Lucas.  A number of them  brought us food and helped out around the time of Lucas’s birth, something we’ll always remember and appreciate.

In another cool connection, the pastor Rob Hardies lived in the same town in Guatemala — a post-war repatriation that was still experiencing trauma — as Krista back in the 1990s.  He’s a great guy, and was prepared for our vacuum-cleaner sounding suction machine to kick on in the middle of the sermon should Lucas need it.  As it happened, Lucas was kinda freaked out by the huge crowd, or the clapping, or the loud organ (or all of the above) and so we had to take him out into the hall early on, do laps and sing songs.  It turns out he’s a lot more into “Old McDonald” than the holy spirit (for what it’s worth, there’s not much mention of the latter at All Souls anyway, as people “walk diverse spiritual paths”).

Lucas calmed down later and we were able to hang out for coffee and donuts after the service.  A couple who was visiting from California came up to us and introduced themselves as parents of a young woman with disabilities, and they talked about how supportive their Unitarian congregation had been to them and their daughter.  We talked to them for a while and it was a really nice connection to make.

Back at home, we caught Lucas perusing one of his favorite anti-imperialist magazines – WIN, the quarterly publication of the War Resisters League – and he proceeded to engage in a game of “where’s Lucas”.  Halfway through we switched to video mode and recorded a pretty funny clip of Lucas.  Enjoy!

After some recent meandering posts that focused more on us (moving to the west coast, causes to donate to, daddy reflections, etc) we’re ready to get back to our bread and butter:  Lucas!

The short-lived fever and cold a couple weeks ago did nothing to slow Lucas’s increasing ability to wow us with his communication skills.  His sign vocabulary continues to grow – he can now sign at least half a dozen animals (duck, cow, and butterfly being his current favorites).  He’s learned “car,” “bicycle,” and “go” all in the last week.  He can point at his mouth or trach to tell us he wants either one suctioned, often alerting us to a growing clog in his airway before we or his monitors sense any change.  He can say “yes”, “no”, “more” and “all done,” and he’s even modified his sign for “more” to a tiny, energy-conserving but very deliberate movement of his thumb and forefinger.   He can say Mommy and Daddy, though he asks for us far less often than he requests his two FAVORITE things: swinging (we use the sign for play, which is kinda like “hang loose”) and reading books.  He sometimes confuses himself trying to figure out which one he likes more.  The other day we used a bungy chord to hook his swing to a tree in the front yard which led to lots of smiles and frantic “hang loose” signs every time we tried to stop.

We’re sure that the ability to suddenly communicate with your toddler, using words instead of guesswork or telepathy, is an amazing experience for any parent.  But the fact that Lucas has such specific, immediate needs that go beyond food, warmth, and love makes it all the sweeter to be able to ask him what he wants and needs.  In particular, we’re now able to ask Lucas “do you want a mouth suction” before we flip on the machine.  Sometimes we can see the drool pooling up, and Lucas – who used to love a good mouth suction – will sign “no.”  Sometimes we respect his desires but other times, if it looks like he’s having trouble breathing or at risk of aspirating, we override his “no.”  But it’s still a conversation, which feels amazing.

We used to call Lucas the most easy-going kid on the planet, never complaining about anything.  But with his increasing ability to communicate, Lucas is showing us that he actually has strong preferences and that he’s no pushover.   We know this because for the past two weeks he’s been signing “book” over and over and over again, good-naturedly but repeatedly until someone brings him a book.  Then, he often takes one look at the book we’ve chosen and signs “no.”  And then “book” again, meaning we should draw again from the pile.  Lucas’s two favorite books right now are “One Fish Two Fish” and “Baby Clifford’s Animal Friends,” though most Dr. Seuess books will do the trick at this point.  Still, Lucas often nixes 5 or 10 books in a row before we come to the one he wants.  And then he “reads” it, signing “fish” or “hat” or “car” when he gets to the pages with those pictures.

On top of signing, Lucas is beginning to use his voice to communicate.  His vocalized expression-of-choice is still “na-na-na-na,” but he can also say “ma-ma,” “yeah,” “nah,” and even on occasion “da-da.”  He’ll sometimes even sing different variations on these sounds for an hour at a time, experimenting with pitch and volume and tone of voice.  However, every time his speech therapist comes over (with the occupational therapist) he goes completely silent, so they’ve been skeptical when we say he really can talk.  But then yesterday Lucas finally let loose and showed off his verbal abilities throughout his hour-long session.  Mostly it was his ability to catch onto things they were saying that stunned them so much that they started speculating that Lucas may be a small genius.  We’re pretty sure of it.

Of course none of this is easy for Lucas.  If he’s lying in bed he can reach up to his face to sign Daddy (thumb on forehead) or hat (hand pats top of head), but he can barely reach his chin when he’s sitting up and his arms are lying on his tray.  Indeed, his limited range of motion will certainly make the variety of sign-movements more difficult for him as he adds vocabulary.  But already he’s showing such great adaptability and willingness to improvise with communication that we’re sure he’ll be making long speeches about war and peace, disability justice, and tax policy (among other things) soon enough.

here’s a video of Lucas practicing signs (parental advisory: explicit content)

First, here’s the latest (cute) Lucas video – you can see he’s getting pretty good at clapping and snapping!
Lucas had a great time with his Gramma Susan, who left Tuesday afternoon after a full 6-day visit. Lucas clearly reveled in the continued grandparent love and adoration, picking up new tricks, words, and games. It was relieving for us to have Susan around as she’s willing to pick up a book any time Lucas had a free minute (and Lucas almost always has a free minute – or hour when it comes to turning book pages.)

Frequent blog readers will remember that Lucas’s Stansbury-side grandparents were here just a few weeks ago, and that all of them plus his Aunt Megan were here just a couple months before that. Last week, when Victor heard that Lucas’s Gramma was coming for another visit he exclaimed, “Oh Lucas! You’re a rich man! So many people coming to visit you!” It struck us as a beautiful way of describing the good fortune we have, and a kind of “richness” we might really embrace. All three of Lucas’s living grandparents are healthy and excited to travel, have the means to do so, and are willing to make frequent trips across country to visit us. And, all of them (and the rest of our family) have come to love and accept and treasure Lucas as he is. Indeed, Lucas life is filled with riches.

Thanks everyone for the comments and responses to the Lucas swinging video.  We’re always happy to hear that this blog helps spread Lucas’s joy beyond our apartment walls.  And today we’re happy to report that Lucas just keeps getting smarter and cuter every day.  We’ve been playing lots of “where’s your nose/mouth/tummy/ear” lately.  Lucas has perfected a very deliberate “point,” slowly wrapping his thumb and last three fingers down and holding his index finger up as he hoists his hand toward different body parts.  Yesterday, mid-hoist, he stopped the game to admire his index finger.  And as he was admiring it, he figured out that he could hold his hand and wrist still and isolate his finger, moving it back and forth.  He smiled proudly, and we laughed at the cutest finger wag we’d ever seen.

Meanwhile, we’ve been invited to join the NICU Parents Advisory Council at Children’s National Medical Center (where Lucas spent the first 3 months of his life), so on Saturday Burke stayed home with Lucas while Krista went to the first of our monthly meetings.  The Parents Council has been around for years, and they’ve played a big role in making the NICU better comply with the hospital’s stated mission of being “family-centered.”  Parents from the council designed the lactation room, which Krista took full advantage of during our time there.  And the council advocated for the hospital to change its visitation rules so that parents could stay in their babies’ rooms during the doctors’ rounds each morning.  It’s something we took for granted: longtime readers of our blog will recall many a story from the daily rounds that we sat in on.  It was a critical way that we were able to feel informed about Lucas’s care and progress, and it was almost the only way we were able to give our input and influence their plan for Lucas.   As activists we of course get all excited at the possibility of helping influence systems-wide change, so we’re hoping the council will be a place where we can use our experience to make the NICU even better for families in the future.

(It’s supposed to be sunny and over 70 by Friday!  Lucas is worried it may be too warm for the cousins hand-me-down jeans jacket he’s barely sported this spring…)

Finally, though Lucas has no sense of the catastrophe half way around the planet – no sense of a planet, for that matter – it’s hard not to be completely weighed down by heartbreak at the worsening news from Japan.  We’re so sad for the people who have lost family members and homes and communities, frustrated international energy policy, afraid for the people anywhere near the melting down nuclear power plants, and moved by the stories of people taking care of each other.  In moments like these we inevitably feel particular worry and empathy for families with disabilities and medical needs, wondering what we would do if the power were out for five days.   Like the people in Japan right now, and like we’ve done for the last year and a half, we’d probably depend on the graciousness of friends and strangers to make it through.

Nonna and Papa (aka Lucas’s grandparents/Burke’s parents) were in town this past weekend for a short visit, and Lucas loved every minute of it.  He took advantage of their time here to take them for a long walk in the park on a beautiful Saturday afternoon.  He got in multiple tub baths, and lots of cuddling, singing, book reading and throw-things-out-of-the-crib-game playing.  He got Papa to help his Daddy build him an indoor swing.  And he showed off his increasing ability to communicate.

Lucas is getting speech therapy to help him figure out how to best communicate what he needs, and we’re offering him all the options — pointing at objects, pointing at pictures of objects, pictures with sounds on the I-pad, sign language, and verbal language.  Lucas seems to be considering all the options, but the one word he most definitely knows and uses is the sign for “more.”  (American Sign Language uses two hands for more, Lucas uses one.)   At the end of a song, or at the end of a tickle, or at the end of any game Lucas has invented, he pulls one hand up and makes the knocking movement for “more.”  Sometimes it’s small and looks like a request.  Sometimes it’s fast and enthusiastic and more like a demand.  We finally got video of the more sign, which will show you what Lucas thought about his first time on the homemade swing:

Thanks everyone for your thoughtful responses to our last post.  It’s reassuring to know that we can write about what’s on our minds – even when it’s not rainbows and holidays and Lucas’s awesome progress – and that you’ll stick with us.  Thanks.

But of course there is progress to report, too.  This week we had two visits to specialists who, once again, confirmed that Lucas is doing great. On Wednesday we went in for a follow up visit with our pulmonary doctor who listened to Lucas’s breathing and said he sounded good, even with his small cold.  We spent a while talking with him about questions related to pressure settings for the vent and time off the vent and on the valve.  Dr. Koumbourlis is always warm and helpful and open to talking pulmonology for as long as we want, but ultimately he kept answering our questions by telling us to keep doing what we’re doing: experimenting with time off the vent while avoiding pushing Lucas to exhaustion; and maintaining the settings on the vent which are minimal and not necessary to change if he doesn’t need it.

We also met with our favorite respiratory tech who was full of geeky vent and trach tricks.  He talked to us about the alarm level settings on the vent, the positioning of the trach in Lucas’s neck, and a new technique for giving Lucas extra breaths when his oxygen saturation level dips down into the low 90s.  He has decades of experience working with kids and adults with respiratory issues, so when he got gushy about how well Lucas is doing (and the two of us, too), it felt like a serious compliment.

Two days later we were back at Children’s for a slightly more traumatic visit to the Ear Nose and Throat doctor, who was checking Lucas’s trach and the tubes in his ears.  It turns out Lucas’s ears collect a lot of wax (so embarrassing!), and thus the doctors tried to clean his ears so they could see the tubes.  It also turns out Lucas HATES having his ears cleaned.  The ENT doc and his assistant then wanted to look down the stoma (hole) in his neck with a tiny camera.  They somehow didn’t have the tiny camera which fits down his trach tube available, so they had to pull the trach tube out and stick a larger camera directly into Lucas’s neck, which was pretty traumatic.  Lucas hated that too.

The final report was that things looked good and to keep doing what we’re doing.  We should have called it a day at that, but instead we proceeded up to the lab for a blood draw.  Lucas has notoriously difficult veins to find, which meant lots more poking with even sharper objects than the ENTs used.  Burke snagged a “Mr. Grumpy” sticker for Lucas to try to distract him, but Lucas just threw it on the ground (grumpy indeed!)  By the time we got home Lucas was exhausted.  Even after his long nap he was not the happiest camper in the afternoon.

The other fun news this week is that Lucas’s vocabulary is growing, especially his ability to identify body parts.   He almost always nails the response for “where’s your nose?”, sometimes even preemptively answering it by pointing to his nose.  And for a kid with severe muscle weakness, he has really amazing aim.  He’s also getting pretty good at identifying ears, mouth, belly, and even wiggling his toes on command.  And when he’s not pointing at parts of his body, Lucas is using his hands more actively to make the sign for yes/more, to play his new xylophone, and to feel the textures in his books.  (See the picture of the snowman’s fuzzy mittens above.)

And the final news for today is that although Lucas has had a bit of a cold all week, it hasn’t slowed him down much.  He’s had a small cough and has needed a lot more trach suctioning than usual.  But he’s a trooper and we’re hoping he’s turning the corner on the cold this weekend.

And finally, we never got around to mentioned to the visit of our friends Daniella, Gabe, and Rafi on New Years day.  It was great to see them, and especially great to see Rafi – he’s older, bigger, faster and more determined than when we met him this summer (pics of that visit here).   Rafi brought his helmet with him, which happened to be made of the same jungle-animal green material as Lucas’s trunk brace.  So we tried to get the two of them to pose together, but the closest shot we got was the one below, which represents the meeting well: Rafi on the move, and Lucas shocked at a baby who moves so darn fast!  We’re pretty sure Rafi was too young to take Lucas’s reaction personally and that they’ll be good friends down the road.

2010, the first full year Lucas lived from start to finish, is over.  It’s one of those years that went by way too fast, with a lot of ups and downs and blurry periods in between.  We thought about writing a little “best of” list as part of this blog post, but didn’t get around to it since we’ve been so busy with family in town.  And besides, we’ve got more important things to talk about: an update on Lucas.

Family visits always seems to bring out the best in Lucas and this one has proved to be no exception.  Krista’s mom and sister arrived on Christmas Eve and left on Thursday and in between got a lot of quality time with Lucas.  Burke’s parents arrived Monday, overlapped briefly with Megan and Susan for a few days of flurried activity around the Han-Stans household, and are still here through early next week.  Everyone is amazed by how much Lucas has grown lately, and happy to see him in good health.  Most exciting for all of us are some small but significant developments in the past few weeks.

As we mentioned in previous posts, Lucas is becoming more and more interactive.  He’s got his “itsy-bitsy” spider hand-movement down, along with the hello/goodbye waive, along with the high-five, and a few other tricks he’s working on.  He has become more and more deliberate with each motion and seems to be more confident about what exactly is going on when each motion is made.  Meanwhile, just in the past few weeks Lucas has began really showing his enjoyment of different sensations, in particular feeling with his hands.  We’ve built up quite a collection of “touchy-feely” books and his current favorite is “Where’s my Snowman?,” which his Great Aunt Penny and Great Uncle Steve gave him for Christmas.  The other day Lucas was sitting up in his chair and kept flipping back to the page with the fuzzy mittens, and then running both hands over the rough green, surface as he smiled with glee.  When we turned a few pages to the one with the snowman’s rough buttons, Lucas would feel the surface for a moment before slowly and deliberately flipping the pages back to the green fuzzy mittens.  Then he’d smile and rub both hands over the pages again.

Lucas is also becoming so much more playful with his actions.  And like any kid his age, he enjoys constant repetition of a new favorite game.  He loves to grab a rattle or wooden spoon and launch it over the side of the crib, only to have his daddy pick up the object in question and place it back within his reach.  He then launches it over the side again and wiggles with glee as Burke disappears to pick it up, a moment that is often drawn out as Burke hides out of sight, waiting to bounce up and hand Lucas the rattle once again.  This went on for a good hour the other night, and it was nearly 11 pm by the time Burke threw in the towel and hid the rattle away for the evening.  A few nights later it was Papa’s glasses that provided the object of the game, with the challenge being to reach up, grab them in the middle between the eyes, and slowly pull the ends over Papa’s ears… followed by triumphantly shaking the glasses in the air once they were free of Papa’s face.

The other thing that is really cool is how much Lucas recognizes us these days… and how much he shows it.  It could be that for some time he’s gotten excited when mom or dad comes home after being gone for the day, but has been unable to express his excitement because of the limitations of his disease.  Whatever the case may be, lately when one of us walks into the room and says “hey Lucas!” a huge smile appears on his face, he starts wiggling furiously (at least as much as his weak tummy muscles will allow), and usually throws in a vigorous double-handed waive.  Oh yeah, and he also does a version of this routine when Victor or Florence arrive, or Nonna and Papa, or Gramma and Aunt Megan, or other friends he hasn’t seen for a while… but needless to say, there’s an extra sparkle in his eye for mom and dad and it makes our hearts melt every time.

With lots of good stuff going on for Lucas lately we’re all excited about what 2011 may bring.  Though we don’t have time to reflect on all the challenging and wonderful things that went down over the past year – from Lucas being diagnosed with Myotubular Myopathy in February to organizing our first public event as parents of a child with disabilities in December – we are grateful to be together with Lucas and for all that our friends and family have done to support us this past year.   And we’re definitely grateful to have kept this blog going as long as we have.  Thanks for reading and continuing to comment.  We’d love to hear your highlights of 2010 and what you’re looking forward to for 2011!