Lucas Camilo

It’s been a while since our last post, in part because we’ve been keeping busy.  Burke was gone for 5 days at a retreat outside of Baltimore and came back to a bunch of work to catch up on, while Krista has been teaching lots of yoga and attending her anatomy and physiology class at UDC.

We’re still planning our move to the NW but have acknowledged that it’s not going to happen until the new year.  However, if the pace of our move reflected all the help we’re getting, we’d have jumped from coast to coast in a flash.  So many people have helped orient us to the social justice non-profit world of possible jobs, introduced us to friends and colleagues, and helped us map the possible medical and school services for Lucas.  We sent out an email to friends in Seattle describing the kind of housing we’re looking for, and we now have about 100 eyes looking for a wheel chair accessible house for us, with offers from Burke’s parents and Ashley to go check out homes for us.  As always, we’re extremely grateful for all the support.  With all that help we’re still optimistic about getting everything in place that will allow us to move.  Since we’re still in DC, we’re keeping ourselves immersed in our work and community as long as we can, while still moving forward with our westward preparations.

Lucas has continued to enjoy fall walks – naming the different leave colors along the way – and his usual favorite indoor games, along with some new ones.  His latest obsession is the “bird song” (there are actually a few different folks songs about birds that he enjoys), and whenever music or the radio comes on he’ll insist on a “new song” and that it be the “bird song”.  When we grudgingly make the switch he smiles with glee and wags his hand in the “more/I’m loving this!” sign.  Here’s a taste:

[audio:https://lucascamilo.com/wp-content/uploads/2011/11/05-Three-Little-Birds.mp3|titles=05 Three Little Birds]

We also recently got a “stander” for Lucas, something that was custom-fitted for him some months ago and finally arrived after being approved by our insurance.  It allows Lucas to hang out in the standing position and put some weight on his legs, something he otherwise isn’t able to do.  With the help of his therapists he’s getting better and better at it, and seems to enjoy being upright and checking out the world from a position other than sitting.  He’s able to draw, read books, or play with his iPad while in the stander, and it also gives him the opportunity to work on moving his head around more.

You’re probably looking at that picture and saying “wow, Lucas is a big kid!”  And you’re right… for a guy who’s not even 2 1/2 years old his height is truly remarkable.  He still weighs less than 30 pounds but at over 3 feet (36 1/2 inches to be exact) he’s off-the-chart tall.  And as Burke wrote a year ago in the essay that ended up being published in Rad Dad, Lucas’s fast growth is a bit scary when we think about what it means for the future.

And since we hope the near future includes a move across the country, we can’t help but be a little nervous about what it will mean to move this super tall string bean of a son out of our house and over to the other coast.  It’s already hard just getting him in and out of our car for a short drive, so the idea of a plane (or train!) feels extremely daunting.  Fortunately Lucas was born into a family that is not afraid of a challenge, so we’ll figure out a way to make it work.  We’ve thought of lying Lucas out in an overhead bin, for example.  And of course we’re open to other ideas.

It was beautiful in the Washington DC area this weekend, so we decided to take Lucas out to the fall festival at the dairy farm that delivers our milk and yogurt each week.  It was a bit of a last-minute decision, so we had no idea how wheelchair accessible the event would be, but we crossed our fingers and drove with our friends Max and Jess out into the beautiful rolling hills of Maryland to say hi to the cows.

The event was big and there were plenty of activities that we didn’t join in on, but it was fun to show Lucas some real farm animals.  Despite his major enthusiasm for cows in books and cows in songs, for some reason the live cows didn’t excite him much. (He was unimpressed even before the calf tried to eat his stroller.)  But he loved the stall full of baby pigs, and he was interested in the ponies.  He requested a “dog” at the face painting station, and he surprised us by actually allowing a stranger to paint his face.  But Lucas’s favorite part of the festival was definitely the live bluegrass music.  The minute we got to the festival he started asking to dance, and he managed to boogey through much of the few hours we were there.

Despite logistical challenges of maneuvering Lucas around a farm, there were many sweet moments.  Max and Jess took care of us — getting food and chairs and anything else we needed — so we could take care of Lucas. (thanks!)  Maybe because families were caught up in the myriad of farm activities, it felt like people stared at us less than usual. And yet, we remain conspicuous.  People made room for Lucas to get as close to the animals as his chair would allow – which surprisingly is not always our experience.  One of the guys in charge of the pony rides brought one named “Friendly” over to Lucas so he could see her up close.  There was a moment later when we were trying to negotiate getting Lucas’s chair up into the barn and our four hands weren’t quite enough to do it smoothly, and suddenly another set of arms appeared and helped us lift Lucas’s chair exactly where we needed it.

And at the end of the day, one of the older folks who had been watching the band and watching us walked over to us.  Whenever someone comes over, we get ready for questions and prepare to tell them about Lucas and our equipment.  Which is fine — if we can help demystify childhood disability and medical equipment for people, that seems important enough to answer people’s questions as best we can.  But this man just warmly shook our hands and told us he could see how good we are good to Lucas.  And that was all.

(Burke writing) Earlier this year we wrote about our plans for moving across the country – from Washington DC to the Pacific Northwest. It’s time for an update or our progress and latest thinking.

Back in the spring we made trips to both Seattle and Portland to look at schools for Lucas, inquire about medical services, and begin investigating the opportunities for special needs children.  Our conclusion at that time was that both places were likely well-situated in terms of Lucas’s needs, and that ultimately we could make a good home for him in either city.

Despite the fact that the first three-syllable word that Lucas learned to say was “Oregon” we’ve been leaning towards moving to the great state of Washington.  In August I made a trip to Seattle to start looking into job possibilities, and met with many friends and colleagues in the organizing field.  As Krista continues to learn and explore new possibilities in the health and healing – from yoga and yoga therapy to Chinese medicine and acupuncture – she’s looking forward to the possibility of studying once we get settled in.  Our priority for now, therefore, if for me to find a job with good health care benefits so that Lucas will have everything he needs in Seattle.  Since our current health care insurance will end once we leave Washington DC this is a necessity – we can’t move until we have a job with such benefits.

This sets up a challenging situation where we’re more and more psychologically prepared to move but have to play a waiting game before specific plans can be made.  If I get a job in the next month we could pack up and move by November; if it takes months to get a job then we could be in DC into next year.

A month into the job search the prospects aren’t great.  Though my research and meetings have given me a better understanding of the terrain in terms of non-profit organizations, as well as new connections, thus far it hasn’t led to any specific job offers.  I’ve only applied for one job  (at a labor union local) and didn’t even get an interview.  Granted, my standards are high – I want to work for a group with similar politics and values as my own (which are far to the left), and one that engages people through organizing.  I’m interested in doing work in communications (or development) because it gives me flexibility to be with Lucas and share more care-giving responsibilities with Krista than if I were to work as an organizer or executive director again.  So, if anyone reading this has ideas or connections then pass them on…

At this point we’re both excited and anxious about the move.  The fact that this week is the 20^th anniversary of the release of Nirvana’s Nevermind album has me waxing nostalgic about growing up in Seattle (not to mention feeling very old), and the hot, humid summer in DC makes us crave the mild climes of the Northwest.   More importantly, we have lots of loving family and friends awaiting us there, and we’re looking forward to starting to build a new community in Seattle.

On the other hand, DC still feels comfortable in many ways, and when it comes to Lucas’s support community, there is much that we’ll be giving up.  Of course, there are the friends – many associated with CISPES and other recent activist pursuits – who have been amazing tias and tios for Lucas in his first two years of life.  But there are also the nurses, therapists, and doctors that we’ve come to appreciate and who have come to love Lucas.  Just the other day we had a great visit with Lucas’s pulmonologist, a hilarious Greek man we call Dr. K who is always thoughtful and illuminating as it relates to Lucas’s respiratory health.  If only we could bring Dr. K, nurse Florence, his therapists Erin, Erica, and Debbie, and a handful of others along with us….

For now we have plenty to keep us busy.  I’m still working part-time for the Center for Community Change making online videos, as well as doing volunteer work for a bunch of great organizations.  Krista has settled in to teaching yoga classes, doing yoga therapy with kids who have disabilities, and taking anatomy classes at UDC.  We could happily stick around for another six months, but we’ve been talking about moving for so long now that it really feels like the time has come.  Alas, we’ll keep you posted on our progress moving forward.

(Krista writing)  I spent last weekend in a hotel outside Minneapolis for the second ever MTM-CNM Family Conference (that’s myotubular myopathy, the disease that Lucas has, and centronuclear myopathy, a slightly larger umbrella of genetic neuromuscular diseases).  It was amazing to meet so many people who have lived through what we’ve been through.  I was nervous about going – what will I talk about with all these strangers?!? – but it turns out having MTM in common is enough to keep conversation going for hours.   There were about 50 people in attendance including researchers, kids, adults, parents, aunts, uncles, grandparents, and friends.

One real highlight was the talent show on Saturday night.  There were kids in wheelchairs and walking in a parade of homemade hats; a whole family performing a rock ballad with pasted-on-mustaches; a 10 year old who lost his brother to CNM performing magic tricks; and a full standup comedy routine with vent and wheelchair jokes.  Jacob, a 22-year old who uses a trach and vent, showed off his pick-up lines for the ladies.  He called one of the moms up to stage and asked her to disconnect his ventilator tubing.  She hesitated, he insisted, and so she did.  He smiled and leaned into the mic. “You take my breath my away.”

And it was good to laugh, especially with families of older kids who have walked this path longer than us, and even with families who have lost their kids.  It’s good to know that even as some things get harder – like picking boys up and dancing around the room – families are still finding all the joy that we have while living with Lucas’s MTM.

A lot of the official portion of the conference was dedicated to discussing research.  There were researchers from the three main labs in the U.S. talking about where things are at and how close we are to having drugs to trial.  Dr. Alan Beggs and Elizabeth were there from Boston and presented a lot of what they had told us when we visited them last month.  Dr. Jim Dowling was there from the University of Michigan, where they’re working to pull together a mass census (or “natural history study”) of MTM and CNM, looking at how the diseases presents in as many kids as they can find, and then following them over five years to see how it progresses.   There are still many, many things doctors don’t know about symptoms Lucas has that may or may not be associated with MTM, so having this survey compiled and published will be very helpful.

The other exciting news from the UM lab is that they’re testing a drug called mestinon on zebra fish with MTM.  Mestinon is already on the market, prescribed to people with another form of muscle disease.  The drug is clearly having an impact on the MTM fish, so they’re hoping to get approval soon for an FDA trial of mestinon in MTM kids.  There are at least a couple kids with MTM who have already been taking it, and while it hasn’t gotten them up out of their chairs, their families think it may be helping them.

The biggest news was from Dr. Childers who is working with dogs who have MTM at Wake Forest.  They’ve recently tested gene therapy on the dogs by injecting a virus carrying myotubularin (a good version of the defective or missing protein) into the dogs’ hind legs, and so far the results have been amazing.  They’ve compared one hind leg with the injection to the other without, and then compared them to the dogs that don’t have MTM.  The graphs showing the change in muscle strength took my breath away – the legs that got the injection were nearly at the same level as healthy dogs.  The research is just getting started, so they’ll probably have to repeat the results many more times over the course of the next 2 years and show the dogs don’t have an immune response, but these initial results are really exciting.

(As a side note, I have to say that I have really complicated feelings about animal testing.  But I am thrilled that the research is moving forward and grateful to all the animals who are contributing to what may be a treatment or cure for MTM and CNM one day.)

Besides the formal presentations, there was tons of just talking about our kids.  I learned that being picky and at the same time extremely good-natured is a common trait of kids with MTM.  Javad, a wonderful nine year-old from Oregon, used his speech device to demand that his mom make everyone stop clapping at the welcome dinner.  (She didn’t.)  We hung out afterward, and Javad held my hand for a long time while we played and talked.  His soft, gentle grip felt just like Lucas’s – except bigger – and I felt extremely happy and lucky.  Javad studied every picture I showed him of Lucas, flipping through the album of Lucas pictures twice.

I asked for advice on various things and people were generous with their stories.  I learned that a lot of kids started using power wheelchairs at Lucas’s age, and people explained their chairs, vans and lifts.  Jacob, who’s used a power chair since he was little, warned me to watch my legs and get ready to start patching walls once we put Lucas in a power chair.  Over meals I talked with parents I’d just met about topics as varied as constipation (Lucas’s), family planning, vent settings, how to talk with kids about disability, suction machines, nursing, insurance, allergies, anesthesia, health reform, and even death.

The conference was organized by four moms, and it was an amazingly well-planned event.  Other highlights of the weekend included a whole “kids track,” with older siblings leading games and activities for younger kids all weekend long.  Organizers created a slide show, collected videos, and printed up a directory with family pictures and stories.  They had all the most important MTM/CNM researchers in the country at the event, and somehow they were all incredibly wonderful people who stuck around for the fun and bonding and grieving as much as the science. They picked a hotel that was really wheelchair and public transit accessible.  And they made sure the hotel had a lounge/bar space where we could all hang out at night.  By Saturday night – long after the talent show was over and the kids had gone to bed – we managed to get rowdy enough that people on the eighth floor of the hotel called down to the bar to complain.

Although it would have been great to be there with Burke and Lucas, I think Lucas would agree that we made a good decision not to take him – he would have been right there with Javad, giving a big “all done” sign to the clapping and non-stop chatting.  The next conference will probably be in two years, though there was talk of a west-coast gathering next year.  It’s hard to imagine, but if the stars align, we’ll probably be on that coast by then.  With Lucas in a power chair.

Despite the sweltering heat (which Lucas is NOT a big fan of), we’ve managed to get out for a few short trips recently.  On Sunday morning – with the heat index foretasted to be over 110 degrees in the afternoon – we packed our gear up early and attempted to beat the crowds to Washington DC’s tiny “National Aquarium.”  It’s not much more than a big basement with some fish tanks, but Lucas was totally captivated.  He did the “fish” and “turtle” signs about a thousand times, and then we tried to guess what the sign was for “alligator.”

This morning we took him to his first ever “story time” at the Mt. Pleasant library up the street.  Victor and Krista took Lucas, and they rolled his stroller right up to the circle of about 30 toddlers.  The kids (and especially their parents and caregivers) were taken aback by Lucas’s equipment at first, but we got to make a special announcement showing off our suction machine, and that seemed to be enough to calm most people’s curiosity.  Lucas doesn’t exactly love to have a crowd around him singing and clapping, so he cried through the first half of story time and pleaded to go.  But when we backed up a little and positioned ourselves where he could see the ceiling fans better, he calmed down and even made small “cat” and “duck” signs along with the story the librarian was reading.  By the time it was over a number of the kids came over to say goodbye.  Lucas’s tears had dried by then, and he even raised his hand to wave small goodbyes.

The arrival of late summer means transitions around our house.  Florence left with her family for a month in Uganda, so today Lucas is getting to know a new nurse.  His therapists are also taking vacations, so he’s had less visitors to the house recently – meaning he has more time in his calendar for people to come play or read books.  Meanwhile, tomorrow is Burke’s last day at Center for Community Change, the (day) job he’s been at for the past year and a half.  Finally, Krista is off this weekend to Minneapolis to attend the MTM-CNM Family Conference.  We’ll be sure to report on that adventure next week.

One of the highlights of our road trip north a few weeks ago was the visit to the Beggs Lab in Boston.  In a way, going to the lab was the ultimate destination of our journey up the eastern seaboard.  Though we knew that we weren’t going to come away with any major revelations, we also figured this would be the one time to take Lucas to the lab and meet some of the researches there before moving west.

So despite limited expectations, we were excited to walk into the lab on June 27 and meet the famous Alan Beggs.  In fact, Dr. Beggs is a very gentle, thoughtful man (who’s really only famous in the world of children with severe muscle disease), and he invited us into his office for a long chat, ready to answer any and all questions we had for him.  Dr. Beggs and the genetics counselor Elizabeth (who we had communicated with prior to the visit) were excited to meet Lucas, and it occurred to us that these researches probably didn’t have many opportunities to meet the wonderful children like Lucas who are affected by MTM.

The meeting started off with a bang: we laid Lucas down on Dr. Beggs nice couch and within minutes he had filled his shorts (after a 3-day hiatus from so doing!) and was gurgling with pleasure at the feat.   Meanwhile, Dr. Beggs had launched into an overview of the different techniques being researched as possible treatments of myotubular myopathy.

First, he explained that they had already come along way in figuring out that the particular gene mutation seen in people with x-linked MTM affects the production of an enzyme called myotubularin.  Lucas’s low muscle tone (and that of other people with MTM) results from the lack of myotubularin, which in turn prevents the proper development of muscle fibers.  One thing we learned from Dr. Beggs and Elizabeth is that, based on the reading of Lucas’s DNA test for MTM, his body is probably not producing any myotubularin, whereas some kids with less severe forms of x-linked MTM do produce some of the enzyme.  They were able to determine this because the test shows that the defective MTM gene is missing a pair of amino-acids.  Since genetic information comes in triplets, missing a pair throws the entire sequence out of wack and likely means no myotubularin is produced.

Dr. Beggs explained the different directions of research for possible treatments.  Their lab is looking into gene therapy, the technique we had heard most about, in which the mutated gene is replaced by a “good” gene mechanism.  Researchers are trying to figure out how to deliver the new genetic information to all areas of the body, perhaps attaching the new genetic material to a virus to help it spread.   The concept of gene therapy has been out there for a while but researchers are still far away from making it work – whether as a treatment for MTM or any other disease.

Researchers have also been working on a technique for infusing the blood with the missing myotubularin protein.  It has been tested on mice with positive results and in recent years there has been excitement about finding a Labrador dog that also carries the MTM mutation to begin testing on.   Still, the method is in the early stages of development and needs a lot more research before it could have potential with humans.

Another area of research involves helping the muscles grow in strength, despite the missing myotubularin.  One possibility they’re pursuing is a muscle transplant-like procedure.  A person would be given new muscle fibers, which would then reproduce using the stem cells of the non-MTM muscles.  And finally, there are researchers looking into the possibility of giving muscles the capacity to grow bigger by inhibiting the action of an enzyme called myostatin that regulates our muscle growth.  Apparently, animals who have this naturally occurring genetic disorder are able to grow enormous muscles. (Beggs showed us pictures of really enormous-chested dogs and cows.)  If it worked, this kind of treatment might be useful not just to kids with MTM, but to people with other muscle diseases as well.

We knew we wouldn’t get any promises of treatments being available soon, and when we asked Dr. Beggs he walked the line of not giving us too much hope, but not dashing it, either.  He said he didn’t think anything would be ready for trial on humans in less than 5-10 years.  And he added that researchers gave a similar timeline for duchenne muscular dystrophy in the late 1980s, and yet they still haven’t found a treatment today.

The experience of being at the lab and in Boston was an important one for us and we left with a much better understanding of what Lucas’s disease is all about.  But the conversations at the lab were scientific and “interesting,” not personal.  It was only later, as we drove away, that we started to feel the heaviness of what we were learning.

Our belief has been that Lucas’s steady progress in terms of movement and strength will continue to be an upward curve.  After the experience in Boston we’re now aware that might not be the case.  Some boys who are on the more severe end of the MTM spectrum (as Lucas appears to be) have reached a peak at a young age in terms of strength and movement.  As their bodies got bigger and heavier to lift they’ve encountered more challenges, like having a hard time interacting and communicating without augmentative devices.  It’s scary to hold the possibility that all the amazing steps Lucas taken – especially in terms of his ability to use his arms and express himself through sign language – may not continue to expand.  In fact, scary is an understatement.  It’s downright awful, at times, to think about the future and the fact that Lucas could face even more physical barriers than he does now.

Of course, by the time we got home we were back to our regular routine of enjoying hanging out with Lucas and all his brilliance, goofiness, fussiness, challenges and strengths.   We continue to get excited about all the progress he makes with sign language, physical development, and everything else. Celebrating Lucas for who he is in the present remains our guiding philosophy, even if new knowledge sometimes makes us nervous about the future.

On the home front, Lucas and Burke had a good weekend in Washington DC – Krista was missed, but support from nurse Florence on Thursday and Friday allowed Burke to make it to work and meetings, and left the entire weekend for some quality time.  Nice weather in the mornings allowed them to lay out on the front lawn — swinging in the tree while battling mosquitoes — and some visits from friends gave Burke the occasional respite from non-stop book reading.  Lucas was in good spirits throughout the weekend and he (mostly) enjoyed the cranked up selections from Burke’s vinyl record collection (the harder-core punk rock sometimes got the “all done” sign.)  Whenever Krista called he would do the sign for “mommy” (thumb touching chin with fingers extended) and smile broadly.  He also learned to kiss his favorite new mini-stuffed ducky on the beak, which is pretty funny to watch.

Lucas made a lot of noise over the weekend too.  He isn’t always in the mood to verbalize but his voice is getting louder when he decides to pull it out.  He often tries to verbalize words for animals when he makes a particular sign.  He can now speak emphatically the words “hi,” “in,” “on,” and “aaat” (for cat).  He also tries to say dog, which comes out as “nooooan” while he pats his thigh to make the sign for dog.  It is ridiculously cute.

Thanks to everyone for the outpouring of love and support (this is Krista writing again) in response to the post about my dad.  I had an amazing trip to Jackpot, and it felt wonderful to travel with all your support — texts and emails and calls and letters and comments on the blog.  The place was stunning, with wide-open, huge-sky beauty.  I traveled there with my uncle Bill and aunt Becky, my cousins Garrett and Nolan, and family friends Rogelio and Gloria.  Rogelio worked closely with my dad for nearly 15 years, and he built a cross to put at the sight of the crash shortly after my dad died.  So part of the trip was about finally placing the cross (which is featured in my pictures from the trip).  Visiting the place of his crash brought me a sense of peace that I hadn’t expected.  The northern Nevada plateaus were so lovely that who knows, maybe we’ll take Lucas one day.

We’re writing with a major sense of accomplishment today having just returned from our first big family road trip — to Brooklyn, then Boston, then back to Washington DC.  We had a great time, and Lucas was especially a champ.   Most of the trip went better than we could have hoped for, though it was not without its rough spots.  For example, Krista has sworn off EVER driving into New York City again.  Ever.

 

There were so many remarkable things about the trip.  First of all, Lucas has never sat up for more than a couple hours at a time before… and our drive from DC to Brooklyn took more than seven!  Though we took a couple short breaks along the way, this was still asking a lot of Lucas’s body.  He was exhausted by the time we arrived, and we were worried that he might be pooped for the next few days.  But as soon as we got him out of the car and into a bed, he perked up and was in good spirits.   And the same thing happened with our drive from NYC to Boston (which took five hours) and the return trip to DC (which we split up into two parts).  He read books, played with his singing turtle, read more books and requested that we sing songs.  As the trips wore on he got impatient and then physically drained, but that’s to be expected of anyone who spends so much time in a car.  So though it was tiring, it was exciting to discover that Lucas can travel far from home.

A major highlight of the Brooklyn trip was reconnecting with so many friends, some who had never met Lucas or hadn’t seen him in a long time.  Saturday was a beautiful summer day, and we spent 10 hours sitting out on Kevin and Liz’s porch as friends stopped through to hang out.  A special moment was Lucas’s meeting with our friends Manuel and Lisa and their two kids, Emelie and Antonio.  They brought Lucas a few of their favorite books and the two of them were patient and gentle as they read through the books with him.  It was incredibly sweet to see Lucas hanging out with kids we love so much, especially since he’s been nervous in the past.  We saw so many other friends throughout the day – Jacoby and Lezlie, Marsha and Ruby, Jesse and Alessandra (who were 9 months + 2 days pregnant!), Elspeth and Katrina, Phil, Tom and Chris – and we want to say thanks to all of you for making your way out to visit us!

(Lucas wouldn’t let us write about Brooklyn without mentioning the fact that we stayed at the “cat house.”  Kevin and Liz have four cats, and the minute we got into the house, Lucas spotted a cat and started frantically making the sign for “cat”.  He was very proud of himself, pointing and making the sign every time he saw one.  He also loved their ceiling fan, pointing it out and signing “fan” almost as much as “cat.”)

In Boston we spent more time connecting with new/old friends, and Lucas continued to do well.  We stayed with Jocelyn and Jason and their two kids, Arabella (2) and Jackson (4), who had been getting ready for Lucas’s arrival by practicing calm voices and gathering up duck books.  Their strategy worked – Lucas seemed very happy hanging out with them, and again it was great for us to seem him interacting with kids.  They even took us to a playground near their house where Lucas got to swing (with some help) on a playground swing.  He was tired from all the travel that morning but also totally fascinated watching Arabella swing right next to him.

Jason, Jocelyn, Jackson and Arabella were amazing hosts and we really appreciated having the kids spend time together and being able to have other friends drop by their house (like Christy and Oz, who stuck around for some quality book time with Lucas). It was also great to talk parenting and politics with Jocelyn and Jason after the kids went to bed.  Burke and Jocelyn met while living in El Salvador back in 2002 (though they haven’t seen each other since), and because Krista also lived their for more than a year we had many mutual friends to catch up on, stories to tell, and Salvadoran politics to dissect late into the night.

Our trek to Boston was partly vacation, but we also chose to go there in particular because we wanted to meet the researches who are studying myotubular myopathy.  So on Monday afternoon we went to the lab at Boston Children’s Hospital and met with its director, Dr. Alan Beggs.   Dr. Beggs and Elizabeth, a genetic counselor who works with him, made us feel very welcome, and they were clearly happy to meet Lucas.  We’ll write later about what we learned there – nothing astounding, but more details than we had known before.

Before heading back to DC we got to meet two families of kids with disabilities.   On Tuesday morning we met Will, a 10 year old with MTM, his mom Erin and their nurse Sue at the Boston Science Museum.  Will knew Lucas likes duck books so he brought Lucas “Make Way for Ducklings” (a Boston classic).  Will’s a huge Red Sox fan, and he used his computer to tell us about his recent adventures meeting some of the Sox’s players.  It was great to meet Will and Erin and begin to learn from their many more years of experience.  The night before we got to meet Jim and Cora, parents to a 3½ year old named Leo (who we didn’t get to meet this time around).  Leo has some similar and some different special needs as Lucas, and it feels like we have a lot in common with his parents just by nature of being young families navigating disability.  Dinner with Jim and Cora felt like meeting old friends – relieving to meet other people who know what we’re going through even before we start telling them about it.

Thanks to everyone who helped make the trip possible!  Here are a few more pictures:

Kevin reads a book while hangin’ in the cat house

 

Lezlie, Jacoby and Lucas get crazy with finger pupets