Lucas Camilo

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.)

Lucas is enjoying his new home in Seattle (and we’re pretty happy with it too!)  It’s got a great layout for a kid in a wheelchair: you can roll right in the front door, the kitchen, dining room and living room are all connected, and the bedrooms are both on the first floor.  It’s also got a nice little back porch which Lucas rolled out on during his first tour of the house.  We just learned that one of the previous owners of the house used a wheelchair which makes sense – the ramp-bridge that goes right up to the front door is just too perfect for Lucas’s needs.   Supposedly there also used to be a ramp that went all the way around to the back yard.  Alas, that was removed by the current owner so we’ll have to carry Lucas down for visits to the garden.

Unfortunately, it’s rained almost the entire time since we arrived on Tuesday night… welcome to the Pacific Northwest!  The upshot is that it’s been fun to stay inside and try out our new fireplace.  Lucas was enthralled with fire the first time it was introduced to him last December but this time around he wasn’t able to pull himself away from the penguins.  But we were happy to hear the crackling and feel the warmth – it brought nostalgia of growing up in this part of the world.  Thanks to Burke’s parents for stocking us with some logs on arrival (not to mention soy milk and other provisions!)

Another one of the good things about our new place is that there’s a sweet runway right through the middle that Lucas can cruise down in his chair.  Yesterday we pushed aside the couch to open up the path for Lucas and Daddy to do repeat laps around the house, popping a few wheelies along the way.  The adventure brought big smiles to Lucas’s face and was another step in getting him excited about his new home.

Back in DC we never actually took Lucas grocery shopping.  The closest store in our old neighborhood – the infamous Best World – was always packed full of people and stuff so there wasn’t really room to maneuver a chair.  So yesterday marked our first ever team grocery shopping trip.  Lucas enjoying racing up and down the aisles and made sure that we picked up some bananas to chew on.

Finally, here’s a video from our first neighborhood walk during the only two hour period all week that it hasn’t rained:

(For those of you who still use the old fashioned USPS for keeping in touch, our new address is 2943 36th Ave S, Seattle, WA 98144.)

Last night at around 9:30 pm Pacific time the three of us set foot in our new house in Seattle for the first time.  The journey wasn’t easy but nor was was it as hard as we thought it would be.  And Lucas was amazing!  He was a champ every step of the way, tolerating the stress of airport in DC, napping during takeoff, chilling out for most of the first few hours of the flight, and then becoming really animated for the last hour or so before we landed.  Nonna and Papa greeted us at the airport on the other end and helped gather our stuff for the trip back to our new house.

We’ll write more at some point about all that went into packing and tying up loose ends in DC over the last week… it was indeed a challenge.  But the hardest part was just saying goodbye.

For now, we just want to thank our many great friends in DC for their wonderful support, and special props go to Sha who took us to the airport, spent 3 hours with us at the gate after we breezed through security, and then accompanied us right onto the plane.

And here’s Lucas’s photo journey.  You’ll notice that his penguins, Roy and Silo, appear in most of the pictures – he clutched them close to his chest for just about the whole trip…

We are so close to being ready to move, and at times just that fact feels triumphant.  We’ve finally got almost all the gear we need for Lucas to travel — vents, suction machines, back up batteries, and more.  We have special permission to fly with Lucas and that equipment from the FAA, Alaska Airlines, our doctors and our vent company.  We have medical equipment, therapists, nursing, and doctors appointments lined up for when we arrive in Seattle.   We’ve already become close to some the great nurses and case managers at our new nursing agency and doctor’s office in Seattle as they help guide us through the trenches in a major battle with our insurance company.  Our moving pod arrived yesterday and our boxes are mostly packed.  We’ve found someone to drive our car across the country (thank you Tom!). And Lucas has learned to say “new house in Seattle,” even though he has no idea what it means.

Every time we ask Lucas if he wants to fly on a plane or live in that new house, he says a defiant “no.”  We assume that’s because he says “no” emphatically to lots of things these days, but maybe not.  Lucas is an incredibly observant kid, and even if he can’t imagine what “new house” or “Seattle” mean, maybe he actually does have a sense of the heaviness of this transition, the sadness in our friends’ and nurses’ and therapists’ voices when they talk about the move.  Or maybe not.  Every time this week that he’s seen someone for the last time, his “bye-byyyyye” has been heartbreakingly non-nonchalant.  And really, why would a two and a half year old understand the difference between goodbye-til-next-week and goodbye-indefinitely?

Lucas says: "Thanks Gramma for coming to town to hang out with me while Mommy and Daddy pack!"

Honestly, we’re not that different than Lucas.  We can picture “new house” and “Seattle,” but that doesn’t mean that it’s registered emotionally for us that we’re about to leave this place and the people that we love so much.  Our amazing friends Alexis and Sha are organizing a goodbye party for us this afternoon, and maybe then it will begin to really sink in.  Maybe proof of the fact that we’re in slight denial is that we haven’t been able to write the follow-up to the last blog post — the “tribute” to our amazing friends and community here in DC.  We may have to wait until we’re on the plane to begin to articulate that love.

Please continue to hold us in your thoughts for these next few days as we go through this major logistical/emotional/psychological/spiritual transition.  If you’re far away, we can use your thoughts and cheering.  If you’re in DC, please come by.  In the spirit of not being afraid to ask for help there are still some moving tasks few things we could use a hand with tomorrow and Monday.   And if you’re free today, please come by our neighbor’s house (1825 Irving) any time this afternoon to help us say goodbye.

Preparations are being made for our departure from Washington DC in less than a month.  Krista is actually in Seattle this week working to get things going on that end – from home nursing for Lucas, to a setting up a few pieces of furniture and an internet connection in our new home, to figuring all of what needs to happen so that Lucas will get the medical coverage he needs when we arrive.

Moving across the country with a 2 year-old is always a challenging ordeal, but when that two 2 year-old has a severe neuromuscular disease and uses a ventilator it rather ups the ante.  For example, we heard earlier this week that the equipment company that we use in DC is refusing to let us take the ventilator on the cross-country trip.  As many of you know, Lucas can spend a few hours a day breathing on his own, but there’s no way we can travel in a plane without him having the extra air pressure support that the vent provides.  We’re confident that we’ll come up with a solution to this quandary, and we’re certainly glad that we gave ourselves time to make the move given that situations like this can arise.

The actual day of flying is going to be pretty nerve-wracking.  We’ve made lots of special arrangements already with the airline company to ensure that we have special doctors’ notes, can bring equipment and extra baggage on the flight (all of which needs to be pre-approved), can take Lucas’s Kid Kart (wheelchair) right up to the door of the plane, as well as have an extra person accompany us to the gate, etc.  But it’s still hard to imagine that actual day…

Getting set up for all the doctors, specialists, therapists, and nurses Lucas will need in Seattle, along with approval from the insurance company is another big challenge.  Krista is working away on that front this week, especially targeting the biggest challenge which is getting home nursing covered.  Since our primary insurance likely won’t cover it (at least on their own accord) we have to work through various state agencies, including the Medically Intensive Children’s Program.  We’ll spare you the gruesome details but we’re definitely getting to know the all-too complex support system for people with disabilities.

The great thing is that we’re lucky to have so much support from friends and family.  Various people in Seattle – especially Burke’s family – have jumped in to help Krista this week, and it seems like any time we send an email or make a call with questions for someone they get back to us with helpful advice.  There are two other families in the Seattle area with boys that have MTM (the same disease as Lucas) and they’ve been very helpful, along with various other parents of special needs kids that we’ve connected with over the past few years.

And Lucas?  He seems blissfully unaware that something big is about to happen.  He continues to enjoy his favorite books and games, wowing us with new feats everyday.  Just last week, for example, he learned to spell PENGUIN – with a little cajoling he’ll blurt out and sign all 7 letters.  His aptitude for memorization is truly remarkable sometimes, and he seems to genuinely enjoy the challenge of spelling words.  For now, at least, it just another memory game like his favorite game of guessing the animal cards.

We’ll keep you posted as we get closer to the big date.  Here’s a little video of Lucas reading one of his favorite books:

After months of talking about it and preparing, we’ve finally set a date for our move to Seattle.  We’re relieved but also somewhat anxious about all that needs to be done… and sad at the prospect of saying goodbye to so many good friends in DC, not to mention nurses, doctors, therapists, and others who have supported Lucas during his first years of life.

It all started last week when Burke got the news that the Center for Community Change would hire him onto staff for 6 months starting February 1.  Burke has worked for CCC since April of 2010 in various capacities and on various different campaigns but always on contract as a consultant.  With the job search in Seattle proving difficult the prospect of him staying on at CCC in a “field” position – meaning he’s able to work from wherever he can connect to a computer – emerged, and we decided to go for it.  It’s a great opportunity to continue working on an important organizing campaign related to protecting Social Security, Medicare and Medicaid.  And though he’s still working out the details, we can rest assured that the health care benefits will be even better than we’ve had in recent years, thereby allowing us to move and continue with all the services that Lucas needs.

In the meantime we’ve also signed a lease on a rental house in the Mt. Baker neighborhood of Seattle.  It’s a nice place that is very wheelchair accessible and should work well for Lucas’s situation.  There are no steps to the front entrance – a rarity in a hilly city like Seattle – and the kitchen, dining room, living room and two bedrooms are all located on the first floor, another key aspect that we had sought.  Like the job with CCC it’s just a temporary arrangement – a year lease that could be extended – but it will allow us to get to know the city, start to build community, and then examine our work and living options once we’re well settled in.

There are many loose ends to tie up in Washington DC, from final appointments with Lucas’s many doctors and specialists, to events and projects that we’ve both committed ourselves to through the month of February.  And of course, there is much to prepare in Seattle before we arrive, so we won’t actually be hitting the road as a family until close to mid-March.  But the preparations have begun in earnest, and we’re excited to let everyone know.  Any advice people have about moving – especially with a child, and bonus points for having moved with a special needs child (double bonus for ventilator users) – would be much appreciated.

It was a beautiful day for Christmas so we went for a walk in nearby Rock Creek Park. Lucas made lots of requests to go “fast!”  Here are a few pictures and a video of us hanging out alongside the creek.  There’s also a shot of him playing bells for a special version of “Rudolph the Yellow-Nose Cow” – he insisted the Rudolph’s nose not be red and would only go along with the song in the first place if Santa was being pulled by cows…

Lucas also got a card from his cousins Madden, Tya and Ellody that made him very happy:

In case you haven’t heard, Lucas has a new favorite animal: the shark.  Which isn’t to say that all other animals have gone out of favor.  He still leads off every singing of Old MacDonald with a request for ducks, and our walks around the neighborhood involve constant vigilance for dog sightings… oh, and we did we mention that we currently entertain about 60 requests a day for the “birdie song”?

But when it comes down to it, Lucas’s primary obsession these days is with sharks.  It all started with a silly book called “Going to the Sea Park” which slowly made it’s way onto Lucas’s top 10 list, and then suddenly became the only book that we could reliably read to him at any hour of the day without ever getting the dismissive “all done” (he can be kinda picky out his books.)  The pages of what we now call the Shark Book have become so worn that we might need to get a new copy at some point, and the page in the middle of the book where the “little critters” arrive to see the shark tank is especially loved.  Lucas often holds the book open himself while pointing with glee at the sharks; sometimes he counts them but more often he repeatedly wacks himself on the forehead with a sideways open hand, emphatically employing the ASL sign for “shark”.  More than once in the past few months one of us has had to call the other to frantically inquire about the location of the shark book, and during the conversation Lucas can be heard in the background repeating incessantly “aark book, aark book, AAARK BOOK!”

Last week we decided it was finally time to show Lucas a real shark.  Krista had recently queued up a few youtube videos of sharks with Lucas and confirmed that it was in fact the sharks and not just the ridiculous book that he was obsessed with.  So we packed up for a trip to the renowned Baltimore aquarium, which we had heard was more than a few steps up from DC’s aquarium (that’s not saying much – the latter is a nothing more than a handful of oversized fish tanks in the dark basement of the Treasury Building.)

Indeed, Lucas perhaps reserves most of his love for sharks, but in general he’s pretty passionate about things swimming around in water.  In the vast aquarium in Baltimore he got to check out many colorful fishies, as well as turtles (another animal that easily makes the Lucas top-10) and jellyfish.  The aquarium is super-accessible, with special handicap elevators to the various exhibits and indoor sky bridges between the buildings.  We flipped Lucas’s chair around so that he could get really close to the tanks, and sometimes held up his head to help him focus in and follow a fast-moving sea animal.

Not surprisingly, the biggest thrill of all was getting up close and personal with the sharks.  Well not too close, but there is an amazing giant tank with a spiral staircase INSIDE of it that allows you to watch sharks swimming all around.  Each time one would come by Lucas would wack himself on the forehead and mouth the word “shark”.  There must have been a dozen different sharks of varying species, and we learned that one type of shark has a 2000 pound liver! (needless to say that guy wasn’t on hand).  In the end we were pretty happy with ourselves for pulling off the trip to Baltimore, and it was especially gratifying to see how enthralled Lucas was by it all.

As could be expected, the trip to the aquarium only whetted Lucas’s appetite for sharks.  The Shark Book remains as popular as ever, and it’s hard to explain to Lucas that we can’t go see the sharks in person every day.  Krista’s mom recently purchased a new shark toy and when she showed it to Lucas via skype the he tried to reach through the screen to grab it.  Ah, the wonders of a 2 year old!

Oh yeah, and did we mention that it was a nice Thanksgiving break?  Dinner at our good friends’ Sha and Matt’s place up the street, a trip to the Randolph’s house on the Shenandoah River, and lots of walks in the park as the beautiful, 60 degree fall days continue.  It’s going to be hard to leave Washington DC…