Lucas Camilo

Este mes Lucas cumplió cuatro años!  Y con este gran logro, decidimos que ya es tiempo de actualizar nuestro blog en español.

Lucas con sus primas

Celebramos el día de su cumpleaños en la Isla de Whidbey con casi toda la familia — tías, primas, abuel@s, hasta el perro Bruno.  Lucas estaba muy feliz, sobre todo cuando fuimos a la feria y pudo ver de cerca a patos, perros, cabras, llamas, y vacas.  A Lucas le encantan los animales mas que cualquier otra cosa.

Cuando regresamos a Seattle, decidimos que era tiempo que Lucas conociera la famosa “Salvadorean Bakery,” el restaurate, panadería, y pupusería mas famosa de la comunidad salvadoreña en Seattle.  Nos sentamos en la mesa del Monseñor Romero, y tomamos la oportunidad de educar a Lucas sobre la historia de represión, la injerencia imperialista de los EEUU y lucha revolucionaria en El Salvador.  (Nos sorpredió cuando le llamaba más la atención las piñatas que la ponencia sobre la historia.  Regresaremos a los cinco años cuando tiene mas comprensión del contexto politico internacional.)   Fue una visita sabrosa para nosotros, y también algo nostalgico, ya que muy antes de que existiera Lucas, nos conocimos (Krista y Miguel/Burke) en El Salvador. (haga click para agrandar las fotos)

Un poco de la historia reciente de Lucas…

Hace año y medio, nos mudamos de Washington DC a Seattle.  Ha sido una gran transición.  Nos tuvimos que despedir de una comunidad de amistades y compañer@s increibles — muchas personas que son como familia, como tíos y tías de Lucas, y que nos hacen mucha falta en Seattle.  Pero hay muchas ventajas tambien de vivir en la costa oeste.  Tenemos nuestras familias biológicas aquí, y es una área hermosa, con muchos parques, playas, montañas, lagos, y vida silvestre que podemos accesar y explorar con un niño con mucha curiosidad que anda en silla de ruedas.

En Septiembre del año pasado, seis meses después de llegar en Seattle, Lucas empezó la escuela.  Cuatro días de la semana llega el pequeño bus amarillo y lo lleva — junto con una de sus enfermeras — a la escuela.  Los primeros días fueron para nosotros algo difíciles, ya que era cosa tan nueva que Lucas salía y tenía experiencias en el mundo sin uno de nosotros a su lado.  Tuvimos la gran fortuna de encontrar una escuela donde las maestras y terapistas hacen grandes esfuerzos por apoyar, ayudar, e incluir a Lucas en todas las actividades de la escuela.  También tenemos a dos enfermeras muy capaces y que quieren mucho a Lucas, y esto le facilita mucho su participación en la escuela.  Y a Lucas le encanta la escuela, sobre todo la música y los libros.

A pesar de los retos de su enfermedad, Lucas sigue bastante bien de salud la mayoría del tiempo.  Hemos podido viajar en nuestro camioneta que puede acomodar su silla de ruedas.  Fuimos a ver la familia de Krista en Oregon, viajamos a las islas cerca de Seattle donde viven los papas de Miguel, y este julio viajamos por avión hasta Minneapolis para participar en la conferencia de familias afectadas por MTM (la enfermedad que tiene Lucas). Como MTM es una enfermedad muy rara, eramos pocos familias en la conferencia.  Sin embargo, para nosotros fue una experiencia muy enriquecedor al poder compartir nuestra vida con otros para quienes todo el equipo médico, las medidas precaucionarias, y el cuidado médico que hacemos es algo “normal.”   Y fue lindo conocer a otros niños como Lucas.

Ahora que Lucas es más grande, y su salud es mucho más estable, hay días en que nuestra vida como familia puede parecer un poco “normal,” hasta un poco fácil.  Y luego hay días — cuando Lucas se enferma y acabamos en el hospital, o cuando sentimos un poco de envidia de las amistades que viajan a El Salvador u otros paises — que vivir con discapacidades siente mas difícil.  En Noviembre del año pasado Lucas tuvo un accidente grave y por unos minutos no pudo respirar.  La enfermera que estaba con el llamó a los paramédicos, y nosotros corremos al hospital para esperar la ambulancia.  Cuando Lucas llegó estaba gris, y no sabiamos si sobreviviría, y luego tuvimos que esperar a ver si iba a recuperar funciones del cerebro después de no tener oxígeno por tanto tiempo.  Afortunadamente tuvimos que esperar pocos días para ver que todo de Lucas – incluso su gran sentido de humor – había sobrevivido.

Y parece que, como muchos niños, Lucas sabe disfrutar la vida casi todo el tiempo.  Goza de los libros y todo tipo de animal (y libros sobre animales.)  Se esta convertiendo en un niño que disfruta conocer a muchas personas, incluso en la acciones politicas (ver aqui para fotos de un día de cabildeo que hicimos).  Y le encanta hacer bromas.  Cuando Lucas logra que todos se ríen, su cara brilla con orgullo.  Incluso las noches cuando no puede dormir y nos despierta a las 2 de la madrugada, nos saluda con “hola mi dulce!!” y logra hacerlo casi imposible enojarnos mucho con él.

Conociendo una vaquita

Lucas celebra el primero de mayo con CISPES

We’re celebrating Lucas’s 4th birthday today on Whidbey Island with family.  After a great day hanging out with animals at the Island County Fair, we had a morning party for Lucas with his cousins, complete with a loganberry pie and fruit smoothies (Lucas could enjoy the latter through his g-tube.)  Lucas isn’t much of a birthday guy – unlike some kids his age he hasn’t been anxious with anticipation in the weeks leading up to his birthday.  Rather, he woke up today like it was any other day, requesting to read his favorite books, retelling stories of the cows he met yesterday (Bruce and Tinker), and enjoying a good snuggle in the “special Lucas bed.”  But it’s certainly another momentous occasion for us.  Happy birthday Lucas Camilo!

UPDATE: Thanks everyone for sending videos.  We’ve been watching them since we got back to Seattle tonight and Lucas is loving it!  Favorites so far:

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On Sunday we took Lucas to see some scruffy, fantastic vaudville-esque circus performers in Volunteer Park.  They held his attention for hours, and he was especially into the jugglers.

The next day he woke up with a little cold, but it didn’t seem like anything serious, so we stuck with his regular full schedule of speech therapy, walks, etc.

So we were surprised on Tuesday morning when Lucas woke up having trouble breathing, even after we’d gone through all our usual tricks (suctioning, patting his chest, moving him around, suctioning some more).  He started looking grey and was flaring his ribs as he sucked for air, so we pulled out the oxygen tanks we keep around for emergencies.  And when even that didn’t work, we packed up a pale Lucas and hurried in to the emergency room.The short story is that he has rhinovirus (the common cold).  There’s nothing to do except rest, hydrate, and use a machine called the “cough assist.”  It manually forces air in, then creates a vacuum so his lungs make a coughing action and bring the mucous up and out — an action that Lucas’ muscles aren’t strong enough to do on their own.

It didn’t take long in the ER to figure all that out, but the docs insisted on keeping him at the hospital for a night just in case things got worse.We felt bad (and the docs helped reinforce this) that we forgot to try using our cough assist machine at home.  But Lucas has never had anything like this before, so when we’ve used the machine in the past, it didn’t do much.  So it didn’t occur to us in a time of urgency to use a machine that’s never really worked for Lucas.  Turns out he just didn’t have the right kind of cold to make it useful before.

It’s pretty near amazing that Lucas has made it almost four years without this problem of a common cold with mucus deep in his lungs.  But that knowledge felt like little consolation as we tried to sleep in the ICU Tuesday night with nurses, residents, fellows, respiratory therapists, and the cleaning staff coming in just about every hour all night long.  Our nurse had assured us that they’d let him sleep — hate to see what they do to the kids who they aren’t “letting sleep.”
Lucas thought the hospital was pretty great.  He had a big screen TV, and lots of people coming in and out who he could chat with.  He especially hit it off with the respiratory therapists (RTs).  While we were out of the room he tried to convince one RT to read him his favorite book.  When we came back and explained what he was requesting, she sat down and read him all of Hiccup Hippo.

While Lucas is doing fine — home and in great spirits, though he’s still recovering — the two of us are worn out from the whole thing.  Tuesday morning was stressful, not just because it was hard to see Lucas in distress, but also because we’re used to being a smooth parent/medical-caregiver machine that can deal with whatever he needs.  But on Tuesday morning we read his signs differently.  And then going in to the hospital is generally awful because although we know what he needs or wants at least 97 per cent of the time, hospital procedures require us to either relinquish most of our power to care for him, or else stay extremely alert and able to argue and advocate for him at every single step of the way.  Each time we go in there are new doctors, so we have to go through some of the same arguments we’ve had before.  They notice the leak in his trach and want to put in a cuffed trach.  We explain that if they do that they take away his ability to talk, and besides, he does fine with the leak.  They say they could ventilate him better.  We say he’s been healthy and well ventilated for four years with a leak, and we like to hear his voice.  They think they know better than us.  We think we know better than them.  And so, while we’re on our last half-nerve, having started our morning at 5:30 am with Lucas in distress, we’re forced to either back down and let them do what they think is best (with the trach or a dozen other procedures) or stand our ground and try to appear reasonable, articulate, and informed so that we can convince the doctors to do what we are sure is best for Lucas.

It’s not all a stand-off, but it sometimes feels that way.  Especially when we’re not just negotiating with one doctor, but up to four or five at a time.  At one point we had an attending pulmonlogist, a pulm fellow, a pulm resident, and an attending ICU doctor all pretending to have a conversation with us about what was best for Lucas (in this case, whether or not he needed to be in the ICU), when it was clear that we were negotiating with people who were not going to change their position.  The negotiations ended already because we got concessions — they agreed we could discharge directly from the ICU (meaning a faster path to home) and that we could do most of his care in the ICU (though they pointed out that they didn’t really have say over many things that were just hospital procedure.)

Lucas came home Wednesday morning and of course we’re thrilled to have him home.  However, Friday morning we went back for a chest x-ray and our pulmonologist says things are looking worse than two days prior.  This is likely just the normal trajectory of the virus — getting worse before going away.  And today he’s in such good spirits, and with much less need for the cough assist, that we might just take him to a party this afternoon.

It’s taken us a while to get settled back in Seattle after the MTM family conference.  After a very busy week catching up we finally have some time to write more about the experience.

As we said in a previous post, the highlight of the journey for us was meeting other families and being in a space where we could learn from each other.  We’ve heard that some of our MTM friends felt let-down after leaving the conference and perhaps that’s true for us as well; the sense of connection and belonging that we experienced during 3 days in a Minneapolis hotel is not something we feel every day.  The funny stares when we fire up the suction machine or the quick look away of people who can’t bring themselves to witness Lucas and his ventilator – all that is real and it’s only when you spend a few days surrounded by people totally comfortable with vents and suction machines (not to mention all the other equipment) that it feels disconcerting to be back in the role of “other.”

But it was more then just the fact that people were accustomed to a kid like Lucas.  It was celebrating and laughing as we told stories about our life with Lucas, and seeing a look of total understanding on the face of someone else.  It was also important to be able to talks about the harder parts of life, the frustrations and challenges, and even grieve a little.

So yeah, the conference was great for us… but, as people have asked since we got back home, did Lucas have fun?  From what we could tell he also enjoyed himself (he often said “You’re at the conference!  We’re in Minneapolis!”) and though it was tough at times to get him interacting with the other kids, we’re very glad that we figured out a way for all of us to go as a family.  He was in such a good mood the opening night of the conference that we took him to the hotel bar with another family to watch the Mariners-Twins game on the TV.  Needless to say it was a pretty funny sight to see two MTM kids and all their gear sidled up to the bar.

It was interesting to meet the other kids and learn about similarities and differences with Lucas.  For example, Lucas still refuses to use the first person when referring to himself  and we learned this was also true of a couple other kids.  Andy is a smart kid in the 5th grade who still refers to himself in the 3rd person (Lucas prefers the 2nd person as in the title of this blog post).  A lot of the kids tend to be very focused and skilled at memorization and attention to detail.  They also have trouble expressing emotions.  Indeed, a couple parents mentioned that the idea of their kid being on the autism spectrum had come up more than once.  This is something we’ve also started to talk about lately… but the doctors and specialists are so focused on Lucas’s respiratory system and physical health that sometimes it feels like no one bothers to noticed that he also has a brain…  and that his cognitive development is a little quirky.  The parent-to-parent session at the conference gave us a great opportunity to talk about all of this.

One final thing we noticed through observing and interacting with the other boys is that Lucas tends to be on the lower end of the spectrum when it comes to muscle strength – most of the other kids, for example, can sit up on their own and/or hold their heads up (Lucas needs assistance for both).  This was hard for us, and we couldn’t help but feel envious at times and wish that Lucas was just a little bit stronger.  On the other hand, he tends to be on the upper end of the spectrum when it comes to communication skills.  We do feel very fortunate about his ability to verbalize and say what he wants.

Going back to the medical research, this was another area where we found ourselves with mixed emotions.  On one hand, its very exciting to see all the progress that has been made (we mentioned some of this in a previous post back in May).   We knew a lot of the general information about the MTM research, which is advancing in two realms: gene transfer therapy and enzyme replacement therapy.  The former has made the most progress in the last year, in particular through trials involving MTM-affected dogs.  There is no assurance that successful trials in dogs will lead to success in humans, but the research has come far enough along that private biotech companies and venture capitalists are jumping into the mix.  So in addition to the doctors we heard from some of the leaders of these companies who plan to move the research towards clinical trails in humans – which is to say that some of the kids at the conference could someday be the beneficiaries of such a treatment.

Even as we worked through our skepticism about the interplay of capitalism and disease research, we found ourselves cautiously optimistic, but perhaps not as exuberant as some others in the room.  Clinical trials are at least a few years away, and an actual treatment on the market is a few years beyond that.  What’s most important for us is to keep doing everything we can to make a good life for Lucas in the here and now, while also supporting advocacy and accessibility for people with disabilities.  We’re grateful for all those who are so invested in producing a treatment for MTM, and for everyone who challenges those aspects of our society that tend to limit the lives of people with disabilities.

One final highlight of the conference was the variety show on Saturday night.  Lucas was up first and was totally ready to sing “Take Me Out to the Ballgame” (he’d been practicing for weeks)… until Burke put the microphone in front of his face.  There was a long silence as we waited for him to start singing, broken by Lucas pointing to the mic and saying “you wanna put that away!”  The rest of the crowd ended up joining in for a rousing rendition of the song, and though Lucas pretty much refused to sing, he did motion “1-2-3 strikes you’re out!” during the final stanza.  And later in the hotel room he redeemed himself  (see video at the end).  There were other great performances, including a 19-year with MTM lip-syncing a Bill Cosby monologue, as well as some of the doctors and researchers doing a sing along of John Denver’s “Country Roads” (a favorite of Lucas as a baby).

Finally, we want to thank the organizers of the conference (Erin, Mark, Shannon and Marie) who did an amazing job making it happen, as well as others like Paul and Alison Frase (co-founders of the Joshua Frase Foundation) who have helped make this coming together possible. There was so much that was great about the conference that we find ourselves scheming about ways to continue connecting in person with the families that we met, as well as others who couldn’t make the trip to Minnesota.  Already there are discussions about a west-coast MTM gathering that would focus entirely on hanging out and sharing between families.  We’re looking forward to it…

“Take Me out to the Ballgame”

Another video of Lucas and mommy playing baseball in the kids area at the conference: