Lucas Camilo

We made it back safely to Seattle.  Lucas was exhausted by the time we got off the plane, picked up our luggage, ran to get the van, and finally made it back home after 10 pm (midnight Minnesota time!)  But he did great and everyone was relieved to be home, and inspired by the trip.  We’ll write more about the conference soon but wanted to share a few more of our pictures from the trip in the meantime:

This morning we woke up in our hotel room at the Best Western in Minneapolis to the sound of Lucas moaning and calling out for help.  After a half hour of suctioning, nebulizer treatments, and more suctioning, we started to face the reality that Lucas was getting sick.  Our plans for another powerful day of family conferencing – not to mention our return flight to Seattle – flashed before our eyes.  We started making contingency plans and bracing for the worst.  And then all of a sudden Lucas smiled and said “you want to play the I Spy game!”.  Just like that he was back to normal and we were off to breakfast.

It’s hard to describe how important being at the myotubular myopathy conference has been for us and all the other families here this weekend.  Sure, there was lots of fascinating and groundbreaking medical research presented to the group as part of the rather remarkable progress that has been made towards a treatment for x-linked MTM.  But most importantly for us, being at the conference was about connecting with, sharing, and learning from other families of kids born with MTM.  Being parents of a child with a disability can be very isolating, even more so when that disability comes from an extremely rare gene defect that causes the child to be medically fragile.  There’s just a lot of stuff you deal with that no other parents can really understand or relate to.  And then you walk into the 2013 MTM family conference and look at the wheelchairs rolling all around, and hear the whirr of multiple suction machines and the annoying beep of an errant pulse odometer… And, as conference organizer Erin Ward said during the opening, it feels like home!

As we watched another couple switch out an oxygen tank – gracefully and in perfect sync with each other – or a father gently suction his son’s trach while carrying on a conversation, or a mom expertly pick up her 2 year old with low muscle tone, taking care to maneuver around the vent circuit, we thought “that’s us!”  Discussions about highly specific technical and medical information felt completely natural and often totally exciting, and we learned as many tidbits from other families as they hopefully learned from us.  In a conversation on Saturday afternoon that we facilitated, moms, dads and siblings talked about challenges and triumphs related to travel, school, nursing, family relationships, and other topics.  At every step of the way, the connections we made felt deep (especially given how little  time we had known people) and empowering.

We went through some ups and downs over the course of the weekend, and dealt with tough emotional and logistical challenges.  But in the end we are so grateful to have been able to attend the conference as a family.

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!

Last week we got tickets to fly to Minneapolis in July for the MTM family conference.  You may recall that Krista went to the 2nd conference in July of 2011 (the first ever MTM family conference took place right around the time that Lucas was born).  Back in 2011 we weren’t feeling ready to get Lucas on a plane, but after our easier-than-expected journey across the country last year, we figured flying to the Twin Cities would be a piece of cake!

Actually, given that Lucas has since grown out of his car seat the flight promises to be a little more challenging this time around, though shorter.  The hardest part, perhaps, is getting all his equipment registered with the airline, passed through TSA, and on the plane.  At any rate, we still have two months to prepare so for now we’re just excited about the opportunity to meet more families in person (many of whom we already know through Facebook groups or email), share stories and strategies, and learn more about the research related to MTM.

(Side note: Lucas has been doing great since our last post a few weeks ago – enjoying more baseball, walks in the park, spring flower identification, and spending more time in his stander – check out the picture at right where he’s rocking some colorful hand-me-downs from his cousins.)

As has been expressed in previous blog posts, we’ve been somewhat ambivalent about research into muscle disease generally and myotubular myopathy in particular.  For us, helping make life good for Lucas in the present – which includes therapy, lots of creativity, and advocacy for increased access and better policies geared towards people with disabilities – has been the top priority.  This is based in part on our overall politics related to disability but also on an understanding that the chance of new research leading to a viable treatment for MTM during Lucas’s lifetime has been relatively slim.

However, as we will learn more about at the conference in July, significant progress towards treating MTM has been made in the last year, perhaps increasing the likelihood that Lucas and other kids with MTM that we’ve gotten to know could soon benefit from the advances.  We’ll go into more detail in a subsequent post, but for now here are a few area of progress and links if you want to learn more:

• (update – here’s a good two-part article that talks about both areas of research).
• A study published earlier this year showed success in tests injecting the myotubularin protein into mice.  You may recall that Lucas’s genetic disease results in the absence of a protein – called myotubularin – which is very important to muscle tissue and muscle fibers.  The fact that researches have found a way to introduce this protein into another animal, and that it had a positive effect on muscle strength, is a big step forward.
• Perhaps even more exciting – at least in so far as it’s happening right down the street from us – are studies of gene therapy for MTM.  A doctor named Martin Childers, who we visited along with Lucas last year, is leading the research at the University of Washington here in Seattle.  Gene therapy involves injecting the myotubularin gene, instead of the protein, and the research is being done using dogs who have MTM.  The tests so far have been very successful leading to optimistic predictions of human trials starting by 2015.  You can read more about gene therapy and Dr. Childers research here.
• Finally, if you want to learn more about the family conference itself and perhaps make a donation that will allow more families to participate, you can go here.

We promise to report more as the conference nears, and to get back to some actual updates about exciting goings-on with Lucas soon too!

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.

 

There have been more wonderful excursions since Krista last wrote, including a couple of fun-packed days on Whidbey Island with my parents.  Lucas got to feed grass to some alpacas, play with crabs on the beach, and watch swarms of seagulls compete for bread crumbs tossed into the air by Nonna.  For a kid that loves animals and sea life it was a great couple of days.  However, you shouldn’t believe Lucas if he tells you he saw an orca whale on the ferry ride home…. though he really wants to believe he did!

The day after we got back we found ourselves dancing with a salmon at the Seattle Tilth Harvest Fair – another huge thrill for Lucas – and we were fortunate to be joined by our friend Alexis for that excitement and the Whidbey trip.   In the picture you can see that Lucas is actually enjoying the rowdy brass band that provided the soundtrack for us and the dancing fish.  That was a surprise, and he still hasn’t stopped talking about that salmon (it was a Coho, we think.)

Then, the day after that we saw Caspar Babypants LIVE!  Maybe that means nothing to you but it’s huge for Lucas since Caspar (aka Chris Bellow, formerly of grunge-era band Presidents of the United States of America) is his current favorite musician.  Imagine the thrill when “Mister Rabbit” was the second song he played!  Here’s the video so you can get a taste:

Speaking of music, our friend Tom wrote and recorded another amazing song for Lucas’s birthday – check it out:

[audio:https://lucascamilo.com/wp-content/uploads/2012/09/Tom_Ricker_Song1.mp3|titles=Tom_Ricker_Song1]

All of this has inspired me to pull out my old guitar and start strumming around Lucas.  Unfortunately, the first time I did it there were only 4 strings remaining and it was totally out of tune.  I got a big hand waive, followed by “all done with the guitar daddy!”  We’ll have to try again once I get it tuned up.

Now I’m on my way back from Washington DC after a 3-day trip for work.  I didn’t get to see that many old friends because of the packed schedule but it nevertheless made me nostalgic, bringing me back to the challenging and emotional – yet also very special – early months and years of Lucas’s life, not to mention the wonderful community we were so fortunate to have during that time.  Seattle has worked out great for us and for Lucas but we still miss DC.

Meanwhile, I understand Lucas has been getting ready for pre-school without me!  He’s got a new penguin backpack, has been practicing his finger painting, and even checked out a volleyball match at the nearby high school.  Wow… I can’t believe we’re putting him on a bus to school next Monday.  But more about that soon…

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!