Lucas Camilo

Yesterday Lucas flew on an airplane for only the second time in his life. We were understandably nervous – about forgetting some vital piece of equipment among other things – but in the end it went really well… Despite some nasty traffic going through security that had Krista ready to tear someone’s head off.

There are few things in the world that could convince us to take Lucas and all of his equipment on an airplane but the MTM family conference is definitely one of them. This is the third time families of kids with myotubular myopathy have gathered for a conference – the first was around the time Lucas was born in 2009 and Krista attended the second conference alone in 2011. The opportunity to meet other families and kids, learn from doctors and researchers, share stories and build community with people that have something very big in common with us was too much to pass up.

We’ll write a lot more when we return but for now we at least wanted to share a few pictures and day one highlights… Like a visit to the Sea Life aquarium in the Mall of America (across the street from the conference center) where we also ran into Burke’s old high school friend Erin. Lucas wasn’t that into the Mall but he did perk up when the conference got rolling in the afternoon and balloons and party packets were distributed. He had a break down right as our family was about to introduce ourselves to everyone, but after some time resting in the hotel bed (which he refers to as “Minneapolis”) he made a comeback and ended up hanging in the bar with us until close to 10 pm watching the Mariners-Twins game and chatting with the locals.

We’re looking forward to another big day tomorrow!

(Burke writing) Krista is off on a 80-mile bike ride today!  Lucas and I were there this morning to cheer on her and about 20 other people as they hit the road.  The ride is the annual “Solidarity Cyclers”, a fundraiser for the Seattle chapter of the Committee in Solidarity with the People of El Salvador (CISPES).  You can still sponsor Krista (or me for that matter as I’ll be joining for day 2) by giving through Paypal at the bottom of the registration page.  Note: Krista will have to explain about the eagle in the picture once she returns.

Lucas is napping now so I thought I’d take a few minutes to reflect on some of our recent adventures.  We’re off to a Mariners game later today so I’m going to let him take a long nap…

As Lucas has embarked on summer vacation we’ve had to be a little more creative about how we spend the days – its amazing how 3 1/2 hours a day, four days a week of school suddenly seems like a lot of time when you take it away.  Lucas still has nurses most weekdays so that helps both of us get our work done, and having someone around to take Lucas out if the other one of us is busy or out of town is also really nice (Krista just spent 4 days in Portland for a wedding and time with friends, for example, and I was grateful to have support from a nurse a few of the days).

Among the things we’ve done lately are trips to the lake (when the weather allows it), the zoo, the library for some Spanish-language readings, a birthday party, and a brilliant two-day excursion to a cabin in the woods near the town of Leavenworth.  The latter was a particular highlight for Lucas as he was able to cavort with dozens of hummingbirds, 3 dogs, 2 horses, 2 donkeys… and we even saw a bear!  Our friends Eli, Lili and Pax were amazing hosts and indeed it’s trips like this that make us very happy to be back in the Pacific Northwest.

The other day Krista and I were talking about how fortunate we feel to be getting out and doing so much with Lucas… and having fun while we’re at it.  Part of it is that we just want Lucas to be able to enjoy his life as it is now – his fascination with animals, books, flowers, fruit in the grocery store, or whatever his latest passion may be.  This is by no means a given.  For one thing, he’s been extraordinarily healthy while many of his medically fragile peers often struggle with frequent illnesses and hospitalizations.  And indeed every time we venture out there’s a certain level of risk involved.  Just yesterday driving home from the zoo we had to pull over and do an emergency trach change on the side of the road since Lucas was having trouble breathing.

There’s definitely some choice and determination that goes into in doing all these outings.  We could, for example, be focusing a lot more on learning to drive his power chair – something that remains a big challenge – or practicing communication with his Dynovox speech device.  But come on, its summer!  Lucas deserves to be out mucking it up with the best of them, even if his style, and methods, and the precautions we have to take, might be a little different.

Meanwhile, Lucas has had a number of appointments with specialists lately – all of which have gone fine – and at some point we’ll do an update on such matters… not to mention his power chair progress and other things he’s working on in therapy.  Speaking of chairs, below is a picture of Lucas enjoying a serene day at the lake in his new push chair, which has been an awesome boost to his mobility and stamina.  And some other recent shots as well…

This past weekend we made our second trek to Gramma’s house, just outside Portland.  It was a bit of a harrowing journey — three and a half hours down I-5 on a dark, stormy night.  We hadn’t really counted on how different it would be to drive with Lucas in the dark.  It’s pretty critical to be able to see him, since he loses his ability to vocalize when he’s having trouble breathing.  We actually considered pulling over in Olympia and sleeping in a motel at the side of the highway, but we powered through (in part because Lucas fell asleep, and he usually needs less suctioning then) and made it to Gramma’s around 10 pm — very late night for us.

Lucas was really happy to be at Gramma’s house.  She has his favorite version of the book “There Was an Old Lady Who Swallowed a Fly,” and he demanded that she read it probably 50 times over the three days we were there.  In fact, he was loved it so much he protested our trip to the zoo.  He was happy about seeing the penguins for about 60 seconds, and then promptly demanded we go home to read the book.  All weekend long Gramma was amazingly patient, reading it over and over, and even managing to get a few other books read in between.

Besides wanting to visit Gramma, we went to Portland to catch up with family and friends and new babies.  We got to see Krista’s old friend Jennie and her baby (now toddler) Oscar, then Krista’s cousin Erica and her little baby, Berlin.  Lucas used to be skeptical of babies, but he seemed fairly interested in meeting the little ones.  He was especially impressed with Oscar, since Oscar immediately took to Caspar Babypants (Lucas’s favorite band).  Lucas also got some time with Krista’s Aunt Penny and Uncle Steve.  Steve is a salmon fisherman, so he and Lucas had a lot to talk about: fry, smolt, and favorite salmon species, and then the question of whether or not steelhead are salmon or trout…  And then on Saturday morning we took Lucas to the farmer’s market, and he was excited about picking out some pumpkins for a little while.  But then, shortly after taking the cute pictures, he had another meltdown and demanded we get back to Gramma’s house immediately.

On Saturday night there was a CISPES event, with a report back from a women who went on the medical brigade to El Salvador this summer.  We were excited to go to hear the report and connect with a lot of friends, but nervous because we have never taken Lucas out to something that started at 8 pm (ie bed time).  Fortunately the event started with two Salvadoran musicians playing revolutionary folk music, and Lucas LOVED it.  He even got into shouting and pumping his fist for the “Dale!” part of “Sombrero Azul,” which is the unofficial anthem of the Salvadoran left.  Needless to say, we were beaming with pride.

He also held out (thanks to the iPad) through almost the whole presentation.  It turns out that in the right position, with the right acoustics, Lucas can actually get loud enough to be a bit disruptive during an otherwise quiet presentation, so for the first time ever we found ourselves asking Lucas to be quiet.  At one point Lucas passed gas, and, thanks to our family game of naming all bodily functions, Lucas shouted out “you tooted!” (He still refers to himself as “you.”)  Of course Lucas is hard to understand, so no one else caught the joke, but we loved it.  And more importantly, it was fantastic to be able to take Lucas out to an event and feel inspired by something that is so close to our hearts.

On our way out of Portland on Sunday morning we stopped to meet the Machinchi family, including Javad.  Krista had met them at the MTM family conference last summer, but it was the first time for Burke and Lucas.  Lucas immediately loved Shannon, mimicking all her great hand gestures. (Ask Lucas about Shannon and he’ll show you the sign he made up for her.)  And although Lucas and Javad are far apart in age, they share share a passion for i-pads.  We pointed out to Lucas other things they have in common (Javad definitely studied our suction technique when Lucas’s machine came on), but Lucas was most excited by Javad’s science apps.  When we got home and showed Lucas this picture of him and Javad, he exclaimed “you met Javad!”  And then, “you saw Javad’s i-pad!”  Next summer there will be another MTM family conference, so we’re excited about the opportunity not just to hang out with Javad more, but lots more MTM kids and families.

Lots has happened in the last week and a half and we’re excited to finally get a chance to report and reflect.

First, we must acknowledge the significant victory of last week’s ruling by the Supreme Court to uphold most of the major aspects of the Affordable Care Act.  When it passed we wrote that ACA didn’t go far enough – and we still believe that to be true.  But we also understand just how much Lucas and many others like him have already benefited from the changes brought on by health care reform, and how devastating it would have been to see these things reversed.  We’re talking about the fact that the ACA makes it illegal for insurance companies to deny coverage to children with pre-existing conditions (something that will eventually be extended to others), as well as the elimination of life-time insurance caps.   The law also benefits people with disabilities by expanding coverage for mental health and home/community-based services, and by expanding access to Medicaid.  Indeed, many people are sleeping better following the Supreme Court decision, even as we must continue the fight for deeper reform.

On the same day as the health care decision was announced we signed the paperwork on the purchase of a used wheelchair van for Lucas.  Needless to say, buying a mobility vehicle is very different than getting a normal car, if only for the fact that the factory conversion basically doubles the price of an average mini-van.  In the end, the process was much easier than we would have thought, in part because we found a really solid used van — via a special needs list-serve — that has only 41,000 miles on it.  These vehicles are very specialized and this one seems to have been made for Lucas.  It has an easy fold-out ramp (rather than the more cumbersome power-lift which he’ll likely need later in life) and self-retracting straps that cinch his wheelchair in place.  It wouldn’t work for an adult but it’s perfect for Lucas and we’re grateful to the family for selling it at a reasonable price and passing it on in good condition.  We also know other families who have spent months raising money and struggling to find financing to be able to purchase a mobility vehicle.  So we’re feeling extremely lucky to have been able to put a down-payment on the van and secure a low-interest loan from our credit union.  And best of all… Lucas loves it!  He can now face forward and see out the front, and we don’t have to maneuver him awkwardly into a undersized car seat every time we go out.  Big progress!

Just when we thought the week couldn’t get any more momentous suddenly we found ourselves packing up for the first ever Burke-Krista trip without Lucas.  Since he was born Lucas had never spent more than 8 hours of daylight without at least one of his parents at his side.  But in May we secured coverage for respite care, opening the way for us to take an out-of-town trip.  Four different nurses spent time with Lucas over the course of about 48 hours.  Burke’s parents also played a huge role, hanging out with Lucas, bringing Bruno to play fetch, reading countless books, countless times.  They also sent text messages and called to give frequent updates from the home front.  Perhaps surprisingly, we weren’t all that nervous, knowing that Lucas was in good hands… and that, not as surprisingly, Lucas didn’t seem to miss us that much.  According to one nurse, “I hate to say this but he didn’t mention you all day long and seemed completely content.”  Our feelings weren’t hurt in the least; to the contrary, we were extremely grateful for competent caregivers and tireless grandparents, confident that Lucas was in good hands the entire time we were gone.

Oh, and did we mention it was an amazing trip?  Three beautiful hikes in the North Cascades, returning to our northwest roots of spectacular mountains, rivers and waterfalls (check out a few pictures here.)  Our recent good fortunes landed us in a cozy little cabin on the banks of the Skykomish river in the town of Index — courtesy of our generous neighbors Barbara and Sara.  Thanks to everyone for making it possible!

Finally, upon return we linked up with our old friends Daniella and Gabe, along with their son Rafi, who stayed in our basement until leaving to go back to Oakland yesterday.  Lucas and Rafi hadn’t seen each other for over a year, and their second meeting didn’t go quite as well as their first (check out this funny video of the boys in June 2010) as Rafi’s high energy was tough for a guarded Lucas to handle.  But this time they hit it off, as the photos below demonstrate.  From kisses to brushing their teeth together, Rafi and Lucas — despite being about as different as a couple 2-year olds could be — became friends over the four days they were together.  Daniella and Gabe were also amazing with Lucas, patiently figuring out which book he was asking for and reading them over and over again.  And to top it all off, a few friends joined us for a fun 4th of July barbecue on Wednesday.  What a week!!

Last weekend Lucas made his first trip to Oregon!  On Friday morning we packed Lucas and all our travel gear into the car and made the three and a half hour drive to Beaverton, where Krista’s mom lives.  Given all the outings we’ve reported on lately, this may seem like no big deal, but it’s still a really long drive for Lucas as he gets tired sitting up for extended periods of time.  But he did great, and we arrived at without a hitch.

Besides wanting Lucas to get to see Gramma’s house and the great state of Oregon, the main reason we went was so that Lucas could meet his extended family and our friends in Oregon.  So on Saturday afternoon Susan hosted a backyard party with fifty or so invited guests – mostly the Hanson family and old friends.

(A background note: Three years ago at this time, when Krista was still pregnant, we planned a backyard party at Susan’s house to celebrate our relationship and coming baby, a sort of post-commitment-ceremony west coast reception.  Susan made all the decorations, ordered the cake, bought the beer…  But then Krista went into labor on the plane ride to Seattle and we never made it to Portland, and then Lucas was born and the rest is history.)

So we were excited to finally be making it together – now with Lucas – to Oregon.  But we were also a little nervous about the whole thing since Lucas often (understandably) clams up in high-pressure social situations, preferring to stick his nose in a book to trying to interact with a stream of new people.  We even went so far as to warn people that even though they’d been waiting nearly three years to meet Lucas, he might not act very excited to meet them.

But then he proved us wrong.  All of Krista’s aunts, uncles, cousins, and old family friends, college friends, solidarity friends, and more came out to hang out and celebrate meeting Lucas.  And Lucas greeted just about everyone with a  “nice to meet you!” – having recently learned the phrase – and he soaked up the attention.  He seemed to really enjoy getting gifts (as a kid who likes the familiar, he hasn’t cared about presents much in the past), and he especially loved gifts that involved stickers, the alphabet or Nemo.  He loved meeting his two-year-old second-cousin Mara, so much so that he seemed unfazed as she took away his new stuffed Nemo over and over again.  He was happy about all the people who knew about his love of books, and he happily read stories with with anyone who sat down next to him.  Lucas even agreed to go outside and sit in Burke’s lap for a while on the deck (usually he would insist fairly quickly on returning to the couch to read books).

Of course we want Lucas to be able to be fully himself, even if that means he is sometimes an anti-social bookworm.  But it was really wonderful for us to see him so happy and social as we introduced him to so many new people.  At the end of the night as we tucked him into bed, Krista told him what a great job he did at the party.  Lucas responded with, “The people said, ‘nice to meet you!'”  And we told him: yes, he has many people who love him… and yes, they are happy to meet him!

Lucas shares flower spells with Nonna and Papa

Lucas has been getting lots of quality time with his extended family lately – stop-ins from his cousins and Aunt Ashley, a visit from Portland by Gramma Susan and Charles, and multiple reading/fetch sessions with Nonna, Papa and Bruno (the annoying dog who travels everywhere with Burke’s parents).  Lucas really enjoys having his family around, as everyone brings something different to the table.  Aunt Ashley teaches him sayings like “hang loose!” and “cool, dude!” which he repeats with relish; Madden, Tya and Ellody are a whirlwind of energy that Lucas (mostly) enjoys observing; Gramma Susan is a tireless reader who also introduced him to a great set of flashcards; Bruno plays fetch (for a few minutes at least – he doesn’t have much endurance); Nonna knows all the names of the flowers we find in the neighborhood and can quiz Lucas on them; Papa also reads lots of books and is a darn good speller (something Lucas very much admires).

Hanging with Gramma and Charles by Lake Washington

The recent Susan and Charles trip was highlighted by the aforementioned flashcards which Lucas preceded to devour.  For a 2-year old Lucas has a remarkable appetite for words and spelling.  Whenever he meets someone these days he quickly tells them the first letter in their name; he also prides himself on knowing more than a dozen penguin, shark and hummingbird species (respectively), and he’s well on his way to identifying all the flowers in our neighborhood.  What seems to drive all that is a love of words, something especially remarkable in a kid who doesn’t have the strength in his facial muscles to fully form most words.  At any rate, it was no surprise that Lucas was so excited by the flashcards.  Within 24 hours he had memorized all 44 cards, able to spell and identify each word.  Gramma Susan would hang him a card, quiz him and then upon getting the correct spelling he’d slam it down and exclaim “anuh-der one!”

Finger painting with Madden!

Krista was gone on a 80 mile bike ride this weekend (more on that later) so Burke’s family came over for Father’s Day brunch.  As often happens when other young kids are running around, Lucas at first buried himself in a book to avoid the commotion.  But eventually he sat up in his chair and got into finger painting with his cousins.  The whole gang went to the park together and Lucas enjoyed watching the frisbee get tossed around on the beautiful, sunny date.

With Friends at the Caring Across Generations resolution City Council hearing

This last week featured a number of other exciting events.  On Tuesday, while Lucas was home napping with his nurse, we went down to the Seattle City Council to support a resolution around caregiving that was drafted by the national Caring Across Generations campaign.  The campaign – which we originally joined back in DC – has a well-conceived strategy of bringing together caregivers with those requiring long-term care.  It demands better wages and benefits for the growing industry of direct-care workers, while also seeking to strengthen support and programs for people with disabilities and the elderly.  Burke was set to testify but the time ran out; we plan to return in another week for the full Council hearing in which one of us will testify.

Then on Thursday we took Lucas to his first play, a production of the Hungry Caterpillar (and other Eric Carle works) at the Seattle Children’s Theater.  At first Lucas was totally put-off by the scene at the theater and we only avoided a total meltdown because we happened to bring a book that he could bury himself in.  Once the lights dimmed and the colorful puppets came out Lucas settled down, and from the comfort of Burke’s lap he watch the entire play through.  He even predicted certain parts of the play that he knew from the book, shouting out “2 pears!” or “4 strawberries” before the fruit appeared on stage for the hungry caterpillar to eat.

Finally, Krista hit the road early Saturday morning for a 2-day, many-mile bike ride.  The annual Solidarity Cylers ride (the traditional of which we helped start back in DC) was a fundraiser in support of the local Seattle chapter of CISPES (it’s not too late to donate!)  The riders cruised across Bainbridge Island and stayed at a historic camp for anti-nuclear activists called Ground Zero.  The ride was wonderfully successful – bringing together people with all different levels of experience with cycling (this ride included a nine year old on a one-speed Huffy) to enjoy the outdoors and the great company of other activists, all while raising money for a great cause.

And for an encore this evening we made our way out to a party at the 41 Legs Urban Farm which our friends have started here in Seattle just a couple miles from us.  On their small urban plot they have a greenhouse, many raised beds, flowers, rabbits, ducks, chickens, and pigs.  Lucas loved checking out the flowers and all the animals, but he was especially smitten with the dozen or so ducks and Babette, the pig.  And on our way home, Lucas remembered the date and (with little prompting from Mommy) told Burke that he loves him very much, and “Happy Special Daddy Day!”, and that he’s his “favorite Daddy!”, and the “Best Daddy in the World!”

First – thank you to everyone who read through our last post and offered support for our journey of fighting with health insurance to get Lucas’s needs met.  The good news is that we’ve won a critical battle — Lucas’s second private insurance plan has agreed to pay for his nursing care.  It’s approved only through August, but it’s likely to get re-approved fairly easily every few months.  We spent the week breathing many a sigh of relief.  We knew we’d get coverage eventually, but it’s nice not to have devote any more time and energy to the battle for now.

We’re remiss in posting here because we went from feeling fairly hunkered down and far from friends to having them all sleeping in our house.  Krista’s friend Kathy from the Bay Area was here for a couple days in the end of April.  Then – all in one week – we had visits from not one, not two, but six friends visit from DC and Philly.  (It was awesome to see you Dan, Dana, Carol, Annie, Max, and Jess!!!)  It was especially fun for Lucas to get to show off the new books he’s memorized, and exciting to show our guests around town.  The weather’s made a dramatic turn toward spring, so we took people on walks to the lake, and Lucas got to show Max and Jess around the Seattle aquarium.

Maybe not coincidentally, Lucas has recently discovered the word “awesome.”  So one of our favorite new games around here is “what else is awesome?”  Lucas loves words that get extra stress, emotion, or oomph behind them, so when he tells us that clownfish are awesome, he says it with feeling.  “Clownfish are aaaaaawwwwe-sooooommme.”  And then we ask him “what else is awesome?”  And he names another species of animal, like “ruby-throated hummingbird is awesome” or “macaroni penguin is awesome.”  And then he goes through his favorite books, starting with “Ridiculous is awesome.”  He’s started asking us to chime in too, by saying “mommy do it,” or “daddy do it.”  Having your two-year-old lead you through an exercise in gratitude is indeed awesome – semi-religious and totally hilarious.

Another highlight of the past couple weeks have been our first two NW hiking adventures with Lucas.  On Saturday we went back to Seward Park, this time for kids activities related to international migratory bird day.  We arrived just in time for the hike up to see the bald eagles nesting.  We were really excited to find out that the park had paved trails all the way up, so we joined the other families.  At the top of the hill we indeed got to see a bald eagle pair, with the mother sitting on eggs in her two-ton nest while the father flew around the surrounding trees.  Lucas gave a small grunt to acknowledge the eagles, but he mostly asked for hummingbirds.  So at the end of the hike, having spotted exactly zero hummingbirds, we bought him a new hummingbird feeder.  And he was thrilled.

And finally – your bonus for having read this far – we bring you Lucas’s first hike in the foothills of the North Cascades.  We’re getting pretty adept at packing for a medically complex kid.  We bring vials, tubes, catheters and syringes of sterile water.  But when a major poop incident struck, we were ill prepared – no back-up pants!  Lucas, fortunately, is still too young to notice how hilarious the whole thing was.  (For the record, we did eventually put Krista’s jacket over his legs.)

We’ve taken a while to write about our adventures in Seattle but we’re happy to report that things are going smoothly thus far.  In particular, it’s awesome to see Lucas taking the move so well.  Of course we know he’s a pretty easy-going kid, but he’s also very opinionated.  And he has a history of not liking a lot of things the first time he sees them.  So the fact that he’s taking this all in stride – a new house, new bed, new nurses, new doctors, new almost-everything – allows us to focus a lot of energy on many other aspects of the transition.

One of the “new” pieces of being in Seattle is making new friends.  Over the weekend we went to see the family of a four year old who was also born with myotubular myopathy.  Burke had met the family over the summer, but it was the first time visiting their home in Burien (south of Seattle) for Lucas and Krista.  Lucas was grumpy at first, somewhat unimpressed by Chris’s LTV 950 (the same ventilator as he uses) and other, similar equipment.  We watched in awe as Chris sped his power chair around the uneven terrain in the back yard, but for a while Lucas just asked to go home.  But then Chris got down on the ground with Lucas and showed him his toy school bus.  And Lucas lit up.  Chris was really great – willing to share his toys as well as his swing, and he signed Lucas’s name and even reached out to hold Lucas’s hand a few times.  It was incredibly sweet to see Lucas connect with another kid who’s experiencing life in a similar way, and really great to get to know Chris’s parents.

The other huge adventure in Lucas’s life was a visit to the Woodland Park Zoo to see the “real, live penguins!” for the first time (that’s what he chanted on our way to and from the zoo.)  We made the journey on Sunday morning along with his cousins, Aunt Ashley, Nonna and Papa.  Needless to say it was very, very exciting for Lucas.  He was so happy didn’t quite know what to do with himself other than say “penguin!” and “again!”, hoping that they would swim back by his perch near the water tank.  Check out some video of the magical encounter at the bottom of the post.

Penguins have helped ease the transition, but we can’t give them all the credit.  As we prepared for the move we wondered how Lucas would handle being in a totally different place after getting accustomed to his routine in Washington DC.  We had a feeling that being around family would help, but also knew that he would miss some of the people he was closest to in DC.

Mostly he’s adjusted well to his new surroundings, and seems to be enjoying some of the perks, for example calling for “fire” first thing in the morning on consecutive days last week (we had a number of early appointments so we told him he’d have to wait.)  But on Saturday morning the time was right so we indulged.  After the quick morning med routine, we brought him out into the living room and Burke built a roaring fire.  As Lucas laid back on the couch, perfectly angled so that he could see the fire and most of the rest of the room, he pointed out and proudly said “new house.” Indeed, though Lucas doesn’t yet have the vocabulary to really discuss the pros and cons of this new living arrangement, he’s given other sign of enjoying the new digs. We regularly sing the “Lucas song” in which he gets to insert a thing he loves for each verse.  Normally he just goes through every animal he knows, followed by each species of penguin. (The song can go on forever.)  But yesterday when we asked for another thing — Krista said, “what else do you love?” — Lucas said, “New House!”  And for the next verse, “Fire!”  And then back to “penguin,” “waddle,” etc.

Of course we really miss our wonderful community in DC too.  Fortunately some of you all are coming here soon!  We wish you all could be just a short walk or bike-ride away, popping in regularly to read penguin books or play with the animal cards.  But since the physical space no longer permits such visits, it continues to mean a lot to feel accompanied through this transition.  The move has been relatively smooth, but it’s nonetheless been exhausting at times.  So thank you for keeping us in your thoughts and for the many messages of support and welcome.