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.)

We’ve ranted about the challenge of getting good health care coverage for Lucas before, most recently a few weeks ago when Krista talked about the pains of moving as it relates to insurance – about fighting “an industry that has billions of dollars which it mobilizes to justifying denying necessary services.”  Back in 2009 at the NICU we wrote a rant about how exasperating it was to get Lucas out of the hospital.  And about two years ago we discussed the benefits of the Affordable Care Act as it related to Lucas and our life (even as we acknowledged that the legislation was insufficient to solve our country’s vast healthcare problems.)

Now it’s time for another such missive, given some recent developments with our post-Seattle move insurance situation.  It’s not always fun to write this stuff out but we really believe that these stories need to be told, that only through talking about the shortcomings in our system and directly confronting the insurance companies will things ever get better.

So…. as you know Lucas is a complex, medically fragile kid.  Because he has a tracheostomy and uses a ventilator it’s necessary for someone well-trained in suctioning, CPR, changing trach tubes, etc be with him at all times.  That means means one of us or a vent-certified nurse.  Lucas’s nursing coverage in Washington DC came through the Medicaid-funded Health Services for Children with Special Needs (HSCSN) which he qualified automatically for after spending the first 3 months of his life in a hospital.  Moving to Washington state we knew it would be difficult to get approved for a Medicaid waiver, and frankly we’d prefer that private insurance cover all of Lucas’s healthcare needs – especially knowing that Medicaid is getting cut and there are families out there that need the coverage a lot more than we do.

So even though CareFirst, our insurance company, has an exclusion for private duty nursing in their contract we decided to submit the nursing claims and fight it out.  That was back in February as we were preparing for the move.  They denied coverage for Lucas and we immediately appealed, insisting that there was medical necessity and referring to the clause in the contract in which nursing should be provided  in lieu of hospitalization.  We provided about a hundred pages of supplemental documents – doctors notes, previous legal precedents, etc.   We spent lots of time on the phone with case managers, doctors, social workers, and a lawyer, knowing all along that it was an uphill battle but one that we had to fight: as much out of principle as necessity since some of those same professionals assured us that Lucas would eventually get a Medicaid waiver and qualify for the Medically Intensive Child Program in Washington State.

On Monday we finally heard back from CareFirst that the denial had been upheld.  We can submit a second appeal to the DC government but we have to wait four months.  Attrition, that’s their strategy.  And it looks like this time they’ve beat us; it would cost a ton to pay out of pocket for nursing while we wait to submit another appeal, and we’re not ready for the Medicaid fall-back.

We’re fortunate to be working with an awesome lawyer here in Seattle who has a background in community organizing and is providing pro-bono support.   She foresaw that the denial would be upheld and recommended that we purchase a child-only insurance plan for Lucas (which is to say, a second insurance plan beyond the one we get through Burke’s work).  Part of the problem we’re dealing with is that the CareFirst insurance was issued in DC and therefore is subject to DC law.  Washington state has much more progressive statutes related to health insurance, which, combined with the Affordable Care Act, have led to successful appeals challenging Washington-based insurers.

So Lucas now has a second health insurance plan, this one through Regence BlueCross that we purchased on the open market – it has a moderate monthly premium but relatively high deductible and co-pays.  This plan officially doesn’t cover nursing either, but our lawyer has helped other families challenge Regence around this issue and won.  So she’s confident that we’ll overcome their nursing exclusion so that Lucas will finally have at least a few days of nursing a week covered by insurance.  This strategy of buying insurance for Lucas is only possible because of health care reform.  A few years ago, Lucas’s “pre-existing condition” (in quotes because it’s a phrase created by the insurance industry) would have meant we had no option but to hope the state would fill the gap.

Through it all we’re also exploring the possibility of being representatives in a class action lawsuit challenging Regence around their denial of neurodevelopment therapies for kids like Lucas.  It’s a different issue than the nursing, but an opportunity to be on the right side in a legal battle which, if successful, will allow thousands of kids in this state to get the speech, physical, and occupational therapies they need.  In the past, other people with disabilities and their families have stood strong in the face of unjust laws and insurance practices and we’ve been the beneficiaries.  We may have lost our own mini-battle with CareFirst, and sadly because of issues around jurisdiction we’ll now have to leave that one behind and hope that our comrades in DC who will someday prevail.  But we’re excited to be part of fighting for a potentially better future for kids in Washington state.  And along with so many people who deserve better health care options, we look forward to celebrating a day when everyone has access to the health services they need.

Cha-Cha the penguin was Lucas's favorite house-warming gift

Saturday was our Seattle house-warming party and it was a great!  Thanks to everyone who stopped by and brought gifts.  It was especially “warming” to know that we actually know lots of people here – from family, to elementary/high school school friends, to people we’ve gotten to know through organizing, to recently-encountered neighbors, many of whom also stopped by.Lucas was a bit overwhelmed by the party at certain moments, especially the abundance of little kids running around, but overall he was a great sport.  And it was nice for us to introduce him to more people.

We continued to be awed by Lucas’s intelligence, creativity, and sense of humor.  Sometimes it’s a wonder to see the mind of a two-year old at work.  A couple recent examples:

* Krista was on the phone with Aunt Megan and Lucas was growing impatient with the chit-chat.  Megan let out a belly laugh, which sounded almost fake, and suddenly Lucas lit up and said “Heh-Heh-Heh!”  Krista and Megan stopped talking and asked Lucas, “did you just laugh like Aunt Megan.”  Lucas’s response?  A huge smile and then “Heh-heh-heh!”  Now he’ll do it on command, and when everyone in the room cracks up he’ll smile and repeat “heh-heh-heh!”, pleased with himself at being the life of the party.

* Lucas loves letters and words and has come up with various ways to enjoy and explore them.  People who have seen him in action know that he can spell “p-e-n-g-u-i-n” with ease, signing the letters as he also speaks them.  The penguin feat is memorization of course, but now he’s starting to actually sound out words and understand how letters go together, predicting vowels after a consonant starts a word (even if he often gets the vowel in question wrong at first.)  He also really loves saying long words and has whole sections of books memorized.  One of his current favorites is actually an adult book about inter-species friendships.  He can tell you that there exists an elephant “sanctuary” in a place called “Hohenwald, Tennessee” where an elephant and a dog, “stepping over social traditions,” became best friends.   Finally, our friends Sha and Alexis recently enticed Lucas during a skype chat to attempt repeating various tongue-twisters (thus the title of the post) and he loved it.  Because of Lucas’s low-muscle tone and respiratory issues its still often hard for most people to understand what he’s saying, but the effort, excitement, and intensity with which he goes about exploring letters and words is really awesome to witness.

* The other day we took a great walk in Discovery Park and as we were heading back to the car we put our arms around each other and asked Lucas if he was having fun with mommy and daddy.  He looked up at us and said “love!”  Lucas’s concept of love derives primarily from his favorite penguins Roy and Silo, two male penguins that fell in love in the Central Park Zoo and eventually raised a chick together (with the help of the zoo keeper.)  Upon seeing us hugging like Roy and Silo Lucas suddenly made the connection that we too were in love.  We asked him if mommy and daddy love each other.  He said “mommy-daddy… loovvve” and then commanded us to hug again.  We did and he got a big smile on his face, and when we tried to wrap up the game and continue walking (it was a bit chilly that morning) he exclaimed “hug!” again, and then sat back to watch, admiring his work and how happy he had made us.

Of course, he can still be completely stubborn and exhausting to be around at times as well.  For example, despite Lucas’s apparent literary pretensions the top book on his reading list right now is one called “Charlie Clownfish and Annie A.”  We have piles of inventive, colorful, funny children’s books around the house and he picks the totally senseless and absurd one… to read over and over again.  Yesterday his nurse must have read it at least a dozen times, with Lucas insisting “AGAIN!” each time the book was completed.  Oh well…

A walk in Seward Park, near our house in Seattle

The sun was out this past weekend, and it shined light on the many highlights of being in Seattle in our new home.  Here are a few:
(to best view the album click on the first photo to enlarge, then click anywhere on the photo to scroll through the rest)

And there’s been more.  There was a visit from Aunt Megan over a week ago now (a whole two days without Lucas photographs… what kind of parents are we?!?), visits from Nonna and Papa, and an upcoming visit from Gramma Susan, too.  Lucas is mostly loving the attention, though he does get overwhelmed at times.  Like when some neighbors walked walked up to him the other day to say hi and Lucas – usually quiet when he meets new people – immediately belted out a loud-and-clear “bye, bye!”  But overall we’re happy about all the visits and looking forward to a house-warming party this weekend.

In the last post we mentioned how great it is that Lucas is doing well because it leaves us energy for “other aspects of the transition.”  Well, here’s the blog post about some of those other things.

I’m tempted to just post here our forty plus pages of google doc notes that Burke and I created to track and communicate with each other everything related to the move.  Or share a link to the online database we created just to keep track of the professionals we need to talk to in Seattle about Lucas’s life.  There are the nurses, social workers, home care administrators, therapists, evaluators (Lucas is constantly being evaluated), respiratory therapists, new doctors, advocates, equipment repair people and more.  I’m not really complaining – when you need help, it’s good to have a long list of people who might be helpful.  But the reality is that I wish we didn’t have to deal with all these people.  There are days when it feels like we need nurses in our home to take care of Lucas just so we have the time to talk to other people about coordinating his care.

Probably the single most difficult meeting we’ve had was an appointment with a new pulmonologist when we had been here just three days.  She was young and overly ambitious, and she immediately wanted to make major changes to Lucas’s vent settings.  She went so far as to suggest we admit him to the hospital for a few days so she could “play with his settings and observe him.”  The act of holding ourselves to our seats and acting polite as we declined her totally ludicrous proposal took about all the energy we could muster.   Or really, more than I could muster.  I came home and got in bed and cried.  It felt like there’s just so much in flux right now – the idea that she’d be willing to risk Lucas’s short term health in order to better understand his vent settings felt like too much.  We both suddenly missed our doctors in DC who believed that if Lucas was doing as well as he possibly could be doing, why change anything?  And who trusted us.  And who noticed that we do most of his care-giving and deserve a little bit of credit for how well he’s doing.  Deserve at least a pat on the back for how well we’re all doing.

And for the past few weeks there really have been just so many new people to meet and equipment to learn.  We got a new pulse/oxygen monitor that burned Lucas’s toe and alarmed unnecessarily in the night.  There are all the people that come to evaluate Lucas – measuring and ranking and quantifying Lucas’s abilities and disabilities, a totally messed up process that is a necessary loophole to get things that are sometimes only marginally helpful.  For example, Lucas is going through many evaluation to get us Early Intervention services, which will provide therapies for him that our insurance would pay for anyway.  So mostly what we get out of the many hours of evaluations and phone calls and paperwork is another well-meaning social worker in our life.

The biggest time suck for us over the past few weeks has been the struggle to get insurance to pay for Lucas’s nursing.  It’s hard to know how much to get into here, because the saga is extremely long and complicated.  We’re fighting with our insurance, which is part of an industry that has billions of dollars which it mobilizes to justifying denying necessary services.  I used to naively think that “medically necessary” meant insurance had to pay for it.  Nope.  I’m sure many people reading this will laugh – anyone who’s had serious health issues knows that need has little (nothing?) to do with insurance actually covering something.

We’ve been fortunate to meet some incredible people in this fight – doctors and social workers and now a killer lawyer who are all going above and beyond for us in this fight.  The political moment – with the Supreme Court hearing arguments that it is un-American to try to fix this broken system – combined with the fact that we have to waste our time fighting this rather than hanging out with Lucas, feels like insult on top of injury.  Possibly the most painful part of this is knowing that we have so many resources, and that most families living with severe disabilities have to do this with far less money, time, and space than we have.

So of course we try to find ways to make our fight useful to more people than just Lucas.  We found out that in Seattle, the main home health supply company that provides ventilators to kids does not provide the small, travel lithium-ion battery that we have.  Here they give families what we call the “boat battery” – a gigantic battery that probably weighs 10-20 times more than the small one.   When they tried to hand us the boat battery, I yelled at the (quite shocked) nice home equipment ladies.  They told us they can’t get the lithium batteries, but that simply can’t be true, since most of the MTM kids we know have them.  Burke was out (we’re good at taking turns being the “reasonable” one when the other is too upset to talk), so I just snapped.  “Do you have any idea how much more mobile we became when we got the lithium battery?!  This is a mobility issue for all families!”  They said they’d see if they could find a way to get us a battery – maybe they’d look for a donated one for us.  I said no.  Not just for us.  Everyone with a vent needs this battery.  They need to figure out how to make it happen for everyone.

On top of the stress of all the meetings and appointments and evaluations is the fact that we’ve uprooted ourselves from our friends and community in DC.  I miss having an amazing number of friends who I knew I could call when we were tired who would come play with Lucas, starting with Sha just up the street.  Its not that we even called for the help all that often, but just knowing it was available turns out to have been a major source of comfort.  Last weekend, with Burke gone and the rain pouring down and all this mess of services to navigate, I longed to be back in DC close to our friends there.  And we weren’t even alone for 24 hours – Ashley brought Lucas’s cousins over in the evening and we got some company and a change of pace for a bit.

And of course there are still all the great things about being here.  New friends are already welcoming us in wonderful ways – dinner with Chris’s family, then dinner with CISPES friends, and then two other sets of friends have called to tell us they’re on their way over with food.  It’s also nice to have Burke’s parents close and stopping by to read Lucas his favorite books and join us for excursions to the zoo or aquarium.  So we’re doing great – still endlessly grateful for all our family and friends’ love and support.  But since there are the darker days when it’s just the three of us and our long lists of calls to make, emails to return, meetings to set up, and people we don’t want to need necessarily in our lives… we wanted to find a way to try to write about those moments, too.

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.

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.

Lucas says "I'm going to miss you!"

It’s exactly 2 weeks until we get on a plane from Washington DC to Seattle.  Things are falling into place in terms of plan-Lucas: we finally convinced the medical supply company to allow us to travel with his ventilator (whew!), have signed up with a new home nursing company in Seattle with a good chance that it will be covered by private insurance, and have set up a number of appointments for Lucas soon after our arrival.

All of a sudden last night we realized that we have very little time left for our life in Washington DC.  As we get the details of our travel and Seattle preparations worked out it’s hard to know how to spend that time.  Some days it feels like we’re just going about our regular routine… on others, there’s a desire to do everything and see everyone before the big day arrives.  We are heartened that our closest friends have organized a farewell party the weekend before we go so that we’ll have a chance to spend time with many good friends.

We moved to Washington DC in the summer of 2007, so in reality we haven’t even lived here 5 years.  And yet it feels much longer.  We have both been able to do a lot of meaningful work and through it we’ve connected with many wonderful people during our time here.  The 2 ½ years since Lucas’s birth feel especially significant because they mark our entry into parenthood.  Of course we had no idea what we were getting into back in 2009, and the journey we began when Lucas was born wouldn’t have been possible were it not for the amazing advice, support, and accompaniment of so many people.  Today we want to give a little tribute to some of those people – the professionals in Lucas’s life who we’ve come to depend on, and who have come to feel like part of our large, extended DC family.

As we have mentioned before on this blog, we came into being parents with a healthy skepticism about western medicine, planning on keeping our child away from the institution of healthcare as much as possible (starting with a planned home birth).  That didn’t quite work out, and as Lucas was spending his first 3 months of life in the hospital we came to realize we were going to need to rely on many different doctors and specialists… so we might as well find some good ones.  And we did.  Lucas had a fantastic neonatologist, Dr. Stone; a generous and very caring complex care doctor, Dr. Fratantoni; two big hearted neurologists, Dr. Leshner and Dr. Tesi-Rosha; an all round fantastic pulmonologist, Dr. Koumbourlis; and a great ENT doctor, Dr. Preciado.  Along the way all of these doctors made important contributions to our having better understanding of Lucas and his disease, and at times went beyond that, showing care and love for our son.  At a recent visit with Dr. Koumbourlis, for example, he suddenly stopped in the middle of our conversation, looked over at Lucas – who was discussing penguins with himself – and said with admiration, “I just realized that he has become a little boy!”  Indeed.

Lucas’s therapists have made a huge contribution to his progress in life as they have had even more opportunity to work with him over the past few years.  From his NICU therapist Cathy to his first in-home therapists Dan and Mindy, Lucas has benefited from the thoughtful experience of various physical, occupational, and speech & language therapists.  Recently Evan, Lucas’s second in-home PT, returned for a visit and was totally blown away by how far Lucas had come.  We are especially indebted to our current batch of wonderful therapists: Debbie and Erika, the ideal OT-speech team who have helped Lucas develop his communication skills in ways that some people never thought possible; and Erin, the most positive and determined physical therapist a little guy could have.

And then there are the nurses.  During Lucas’s difficult three-month stay in the NICU it was the support and knowledge of certain nurses that helped keep us sane.  We’ve been out of touch with a lot of them but we will never forget their care for Lucas during a crucial time.  Amy and Erica, his nurses at the Washington Hospital Center on the day he was born and for the first week of his life; many more at the Children’s NICU including Kelly, Charm, and Ann; and those that cared for Lucas during his visit to the PICU in early 2009 (and who kept us company as we slept on chairs in his room night after night during the biggest snowstorm in a decade).

But perhaps the biggest thanks go to Lucas’s favorite two home nurses, Victor and Florence.  We have struggled over the years with the home care company, and early on some of the nurses they sent were astonishingly ill prepared to take care of Lucas.  But in the end they gave us Victor and Florence, and for nearly two years they have been the people that Lucas has happily spent the most time with, apart from his parents.  In a practical sense they have allowed us both to be outside of the house at the same time, if only occasionally, while on certain nights giving us the piece of mind to sleep without blaring alarms waking us up.  But they’ve been so much more than that.  Victor has got Lucas’s morning routine down pat, providing him with the medical necessities 3-4 days a week (nebulizer, suction, food & medications, etc.) but also the things that make him happy (a “hot banana” to chew on, the right book at the right time, his penguins).  Florence has been more like a teacher than a nurse, working with Lucas on identifying colors, letters, numbers, and animals, as well as practicing sign language (having learned many words and phrases herself over the past year) and reading book after book.  To see Lucas’s face light up when she comes in – as he flashes a big “F” for Florence sign with his left hand – is to understand how important she’s been to him.

We’d love to say that this really isn’t goodbye for Lucas but the fact is that given his disease and very limited ability to fly he’s probably not coming back to DC anytime soon (though Florence and Victor have both promised trips to Seattle, and all others are welcome).  That feels very hard, but we also know that Lucas will build a whole new team in Seattle, while the contributions and love of those who have been part of Lucas’s care for the first part of his life will never be forgotten.

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:

Lucas continues to develop obsessions (sometimes fleeting) with favorite books, songs, and animals, but lately with a new twist.  Whether enjoying the “penguin book” or “monkey song” or plastic “fishies,” he prefers to have his head in the middle.  Some of you may remember there was a time we’d put these pillow head supports by each of his ears to help him hold his head midline so he could lie in bed looking up, entranced by his mobiles.  But that phase ended eons ago.  For more than a year he’s mostly refused to have his head in the middle when he’s lying down, which he indicates by grunting indignantly and pulling frantically at any pillow or towel we use to prop up his head.

His physical therapists have worked at getting him to try to balance his head on his own (without props) and look straight up, and until November his record was about 25 seconds.  In those instances, they would hold something up in the air that he definitely wanted to see, but he just didn’t have the neck strength to pull it off for very long.

And then all of a sudden, he went from a few seconds to a few minutes.  By mid-December, Lucas could hold his head in the middle — and hold toys or books overhead with both hands — for 15 minutes.  And then 20.  And now we’ve stopped timing him, as he asks us to move his head from the side to the middle for him (he can’t lift it himself) dozens of times a day.

It’s an exciting step on many levels.  It’s nice that he likes to stay in a position where he can see more in the room or yard around him when he’s lying down.  It’s fun for him to use two hands to read books to himself (and hilarious for us to watch).  And perhaps most significantly, it’s great to be reminded that growth and change often happen in astounding quantum leaps.

The other night we couldn’t help but laugh as we lay in bed forever hoping Lucas would fall back asleep, the occasional chant of “middle, middle, middle!” punctuating our quiet bedroom.   Now, we should mention that we’re often sheepish when other parents ask us if Lucas sleeps well — as if the fact that he’s a good sleeper makes our lives so much easier than theirs.  But it’s true.  Lucas regularly sleeps through the night for 10-11 hours, and he usually takes a nearly 2 hour nap in the middle of the day.  Often he’ll wake up and moan or hum a little in the middle of the night, and sometimes he wakes up more than that and makes a few half-hearted attempts at convincing his Daddy to play with him at 3 am.

But on Thursday, Lucas was up nearly two hours in the middle of the night.  Wide Awake.  We didn’t have a nurse, so he was lying in the crib that’s about 6 feet from our bed.  And he was chanting loudly, “Light on!… star lamp on!… elephant song!… penguin book!… middle… MIDDLE!”  Usually when he wakes up at around 8 he points to the two lamps near his bed and tells us to turn each of them on.  Then he asks for one of his favorite songs or books.  And then he tells us he wants his head in the middle.  Needless to say, its even more charming when you’ve had a full night of sleep…

Speaking of major leaps – we have a plane ticket for our move to Seattle!  We’ll be flying on a non-stop flight March 13.  We’re thrilled, sad, scared and anxious as we go about the mundane business of figuring out how to get us and all our stuff to Seattle.  But come March 13 we will definitely needing all your thoughts, prayers and visualizations for a quick, easy cross-country flight.

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.

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.

Krista turns 35 today!  We went for a nice morning walk to celebrate the occasion and have plans to get dinner with a few friends tonight.  Lucas still associates birthdays with his big #2 and therefore is convinced that Krista must also be in the same age range (when told she’s older than two he holds up three fingers and says “thweee!”)

Burke’s parents left late last week after a successful holiday visit.  They got to see Lucas in his prime and to join him gleefully reading books and playing memory games with his animal cards.  They also were around to witness his latest shift in favorite animals… from sharks to penguins!  An excellent new book called “And Tango Makes Three” helped facilitate the shift, along with a ridiculous video called “Antarctica Anthem” (watch at your own risk… the tune gets in your head.)

Part of the reason that Lucas loves the penguin book is that he’s also very into eggs these days, especially the idea that they turn into babies.  He still hasn’t figured out how it works – he insisted the other day during Krista’s telling of a story that a shark mommy and daddy managed to have an egg that cracked open to reveal a baby penguin – but he’s fascinated by it all nonetheless.

Here’s Lucas reading the penguin book for the tenth time in a row with papa: