Lucas Camilo

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.

It’s been a busy time for us lately and we haven’t had much time to update Lucas’s blog.  But the little-guy-who’s-not-so-little-anymore has been doing great, making tiny strides that to us seem huge, and wowing all those around him.  Krista’s mom is back in town for a visit and, having not been here for a few months, was excited to see Lucas’s latest tricks.  The finger wag that we mentioned before has become a hilarious addition to his repertoire, and you can now sing “If you’re happy and you know it” with Lucas in your lap and go on for a good 10 minutes: from “wag your finger” to “touch your tummy” to “make a kiss,” Lucas is right on cue with the motion needed to show that he’s happy, and if there’s any pause in the action then he’ll immediately start flipping his hand in the sign for “more.”  In fact, these days as you get close to the end of a book or a song, Lucas puts his hand in the air with his fingers extended and clenched together, poised to make the “more” sign the moment you stop doing whatever you’re doing.  It’s really cute.

Among those most impressed with Lucas’s recent developments are his therapists, and indeed they’ve played an important role in his progress, both in terms of increased movement and ability to interact.  It’s been a while since we’ve talked specifically about the therapists, and it’s worth mentioning them by name as we’d most certainly recommend them to other parents looking for physical, occupational, or speech & language therapy.  Erin has been with us the longest, having taken over Brown Bear Home Therapies from Evan last summer.  Erin is a physical therapist who now comes to our home twice a week, and she’s been working with Lucas to develop strength in his arms, legs, and core, as well as coordination in his movements.  She’s a real believer in Lucas and often chides him when he gets lazy and doesn’t push himself to do something that she knows that he can do.  By the end of a session with Erin he’s usually totally exhausted and ready for a nap, often pulling his arm over his face to indicate that he’s done, then adding a “bye bye” wave if Erin didn’t get the hint that he was ready for her to leave him alone.

More recent additions to Lucas’s team are Debbie (a speech/language therapist) and Erika (an occupational therapist) who together make up the home therapy company Eat, Speak, Play! It took a few sessions for Lucas to warm up to them – the first time they came he freaked out at the sight of big, new toys, and refused to wipe off the angry face for an entire hour – but he’s been really hitting his stride of late.  Debbie and Erika focus on communication, and working together they get Lucas into positions where he’s able to express himself – through signing, vocalization, and via the iPad.  Maybe they’re just being nice, but lately Debbie and Erika have been totally blown away by Lucas’s progress and they keep saying over and over again how smart he is.  We’re pretty amazed too; despite all of his physical limitations Lucas seems to be catching on to everything so fast and clearly understanding the world around him.

As we deepen our relationships with the therapists, we were all sad this morning to wave a collective goodbye and happy travels to Victor (Lucas’s nurse since December 2009) who is taking a month off to visit his native country of Sierre Leone.  April 27 is the 50th anniversary of independence in the African nation, and Victor is returning for the celebration, and spending the whole month there along with his fiance.  We’re excited for him, but Lucas will miss Victor’s high-5s and his loving adoration, while we’ll miss our collective morning rants about local news and debates on international politics.  In his place a new nurse named Sarah will start coming to our home next week – the first nurse other than Victor or Florence to spend significant time with Lucas in almost a year.

Though winter has returned to Washington DC for a few days, we’re looking forward to a good, restful weekend with Gramma Susan.  Yesterday Lucas and his Gramma snuggled up and took an afternoon nap together, and if it really snows on Sunday we’re guessing Lucas will demand “more” naps on Gramma’s lap.

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:

Spring seems to be slowly arriving in Washington DC, with beautiful, sunny days still interspersed with cold temps and the occasional wind-storm or freezing rain.  We’re excited about getting out outside for some walks with Lucas, hopefully as soon as this weekend when Burke’s parents are in town for a visit. The transition that spring represents also has us thinking about larger transitions down the line: the likelihood of leaving DC in the not-so-distant future and moving back to the Pacific Northwest.

For a couple years now we’ve talked about the possibility of moving to either Seattle or Portland, despite our friends’ great lobbying efforts to keep us here.  Both of us grew up in the Northwest, our families live there now, and the mountains, rivers, and Pacific Ocean are in our blood.  In the long run we imagine ourselves living in the great states of Washington and Oregon, and as we think about finding a more stable living arrangement – since the mid-90s, neither of us has lived in the same house or apartment for more than 2 ½ years– it’s logical to make the move sooner rather than later.

And yet there is a lot that we love about Washington DC that’s going to be hard to leave.  We’ve managed to build a wonderful community of friends and fellow rabble-rousers, and leaving DC would mean leaving that community behind, not to mention some of our favorite organizations in the world.  We moved to DC in the fall of 2007 and yet it feels like we’ve been here a lot longer.  In a city with a reputation as a transient hub (at least amongst it’s more affluent, white residents), we’ve manage to encounter a much deeper sense of community than we ever imagined when we first arrived.  It’s because of such great friends and community that it’s hard to even talk about the possibility of moving.

The other challenge, of course, will be moving with Lucas.  We’ve developed quite a network of doctors, specialists, therapists, and nurses who are part of Lucas’s team, and re-establishing that network somewhere else will take time.  For now at least, Lucas needs to be in a good-sized city that has adequate resources and support for people with disabilities.  We’re confident that both Seattle and Portland will do the trick, but it’s nevertheless daunting to imagine the process of building a whole new medical and therapy team.

So as we start to think about moving, there’s a lot that we need to investigate and have in place.  Having sufficient health care insurance in place is essential, and part of the reason we can’t just move next month is that we need to ensure we’re on a family plan that can move with us (at least temporarily) as we transition of from DC to the west coast.  Then there’s secondary insurance and the eligibility requirements and waivers necessary to get Lucas on a Medicaid-funded program locally that will cover things like nursing and equipment that may not be covered under our primary insurance.  We’ve started to reach out to parents of special needs kids in the Northwest to investigate these things, and are planning trips to Seattle and Portland in the coming months to set up meetings and continue these discussions.

And then there’s schools.  Lucas is only 18 months old but we’re already starting to imagine what it’s going to be like for him to go to school.  What are the public schools like in each place in terms of their accessibility to and integration of children with disabilities (especially medically fragile kids like Lucas)?  Are there other schools specifically for children with special needs that are worth considering?  What kind of parent and support networks exist?  (And will there be books about disappearing ladybugs, Lucas asks?)  These are all questions we’ll be looking to answer in the coming months.

We know some of our blog readers live in the Northwest, while others live in different parts of the country but have a lot of experience thinking about these challenges.  We’d appreciate any thoughts, input, contacts, and connections you may have that will help us along our way.  We’re excited but also a little intimidated about this process, and would appreciate all the help we can get.