Lucas Camilo

We’re in L.A.!  Venice Beach, to be specific.  And after the first three days of vacation, we’re feeling extremely lucky.  And relaxed (mixed with a pretty splash or two of exhaustion).  But the rewards of being somewhere new, a little bit warm, and with old friends makes it so, so worth it.

We flew out of Seattle on Friday morning after weeks of organizing all the logistics involved in traveling, plus traveling with vent.  And it all paid off.  We made it with relatively few glitches and arrived and the bungalow that our friends Walker and Devon had made available – Devon rents the place on AirB&B and its just one block from the beach!  The highlight of our first few hours (for Lucas at least) was hanging out with Lotus Flower and Mies, two chihuahuas who were very gentle and funny with Lucas.

Later that evening we had a wonderful dinner with Nancy and Donald who are part of the myotubular myopathy community.  They live in Huntington Beach and are letting us borrow their wheelchair accessible van for the week which is extremely generous.

On Monday we met up with our friends Ken and Patri and their kids Mateo and Sofia.  We knew Ken and Patri before we all had kids and lived in Brooklyn back in the mid-2000s.  Its been a long time since we’ve hung out so it was great to catch up.  Our destination was the La Brea Tar Pits and the Page museum where Lucas was able to see saber tooth tigers and woolly mammoths… he’s pretty sure he saw the fossils of an Indricotherium too, so don’t tell him that it was actually an ice age camel!  The giant puppet saber tooth was a little too much for Lucas and we had some tears… but the rest of the visit was fun.

In the afternoon we took our second big walk on boardwalk of Venice Beach.  Lucas was loving all the funky characters, and our friend Ilana was along for the journey and showed him the skate park where some amazing skateboarders were tearing it up.  We would have stayed out longer but a winder storm blew in and the sand got overwhelming.  Luckily, there was enough time to hit the infamous “muscle beach” and scope out the old-school roller skate dancers before heading back home.

Today we’re getting ready for the Superbowl and Lucas promises to say “Go Hawks!” many times.  We’re also watching the presidential elections in El Salvador closely and hoping for a big victory for the leftist FMLN party!

(Pictures enlarge if you click on any one of them, then you can scroll through them in larger format.)

Big news: Lucas drove himself around our house yesterday!  It was a strange moment – at once monumental and anti-climactic.

Perhaps we should give a little background.  For families of kids who don’t walk, the first time your kid drives around in a power wheelchair is the semi-equivalent to your child’s “first steps.”  It’s something that marks the beginning of a radically different orientation to the world: the ability to go and check things out, to choose where and when and how fast you get there.  Like “first steps,” it’s something you know is coming, that other families (or in our case, therapists) talk it up for months before the occasion.

But, unlike the magical “first steps” that just happen, the first drive is an extremely planned and facilitated undertaking – usually under the supervision of multiple therapists and professionals, often in an institution that acts as wheelchair vendor.  For us it’s been a years-long process that included moving into a wheelchair accessible home, researching the market to understand what chairs might work for Lucas, finding the professionals that can help us fit Lucas to a chair, working with our insurance company to ensure that it will be covered, looking for a wheelchair accessible van, etc, etc.

Three weeks ago we had our first try when a vendor brought a power chair to the house for Lucas to try.  Like many things he encounters for the first time, Lucas absolutely hated it.  He did fine sitting in the chair when it was turned off, but the minute we tried to move it he threw a fit.  We sighed and imagined we were in for a summer of slowly, slowly acclimating Lucas to power chairs so that maybe by August or September he’d be willing to try driving.

The vendor called last week to say he’d found a loaner chair for us.  We planned a time when we both could be here to learn how to use it so that, when Lucas was ready, we’d be able to help him try.   Kevin came with a scrappy looking chair — a kid-sized seat literally strapped to a giant adult-sized base.  It looks funny and awkward, but we figured we’d put Lucas in it just long enough to measure where to put the controls so he’d be able to reach them.

We’ve found that calling something the “Special Lucas —” makes it more appealing (the hammock outside our house is the “Special Lucas Swing,” the newest stationary seating devise is the “Special Lucas Chair”, etc.) so we told him he was going to sit up in the “Special Lucas Car.”  He was not immediately sold, but he repeated slowly, “special… Lucas… car.”

And, miracle of miracles, when he got up in the chair this time, Lucas liked it.  He smiled and recited his favorite book while Kevin adjusted the joystick.  Then – surprise again! – he touched the joystick (at this point the power was still off).  When all the adjustments were made, we figured we’d push our luck.  We turned the chair on and let Lucas touch the controls again.  The chair gave a small lurch, and Lucas was unfazed.  He hit it again, and another small lurch.  And then he said “hummingbird!”

So we helped him drive into the kitchen to look out at the hummingbird feeder.  Then we suggested going outside (since it took just 20 seconds of indoor driving to put the first dent in the wall), and we all went through the door, over the ramp, and ended up playing stop-and-go on the sidewalk.  Lucas did great — he was pretty clumsy, but so were we trying to figure out how to steer with a hyper-sensitive control system.

There we were on a beautiful afternoon, standing in front of Lucas calling “come to Daddy!”  He tried, slowly motoring forward and diagonally and then around in a tight circle.  And before we could revel in the glory of it all, Lucas said he was done.  We helped him drive back inside, took him out of the chair, and turned it over to Kevin for a few minor adjustments.  And then it was time for dinner, and Lucas urgently needed to get back to his current favorite book.

 

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.

On Monday we had a major medical adventure: a six-hour long trip to Children’s Medical Center for a supposedly routine MRI.  It turns out that, despite Lucas’s severe muscle weakness, he can in fact move his head when he’s trapped inside a tube with his arms buckled to his sides and horribly loud siren sounds going off all around him!

Having never experienced an MRI ourselves we assumed it wouldn’t be that different that the multiple CT scans that Lucas has undergone over the past 20 months.  And unfortunately no one really prepared us in the weeks leading up to the MRI.  We asked to not have Lucas sedated, explaining that he doesn’t move much and that he’s never had to be sedated for other such scans.  But none of the nurses responded that a brain MRI takes 45 minutes and that Lucas would get strapped down with his head locked in the middle, staring straight up.  Had we known this we probably would have thought twice about sedation.

For starters, we had to change Lucas’s trach tube since there are bits of metal in his usual Bivona trach (the Shiley we switched him to is all plastic and thus wouldn’t be effected by the powerful MRI magnets).   Then we waited for a couple hours for who knows what, and then finally they started wrapping Lucas up in this crazy contraption.  We found out then that his head would have to be held mid-line, facing straight up to the ceiling, his least favorite position.  Even before Lucas was rolled into the MRI room the tears were already flowing.

The trip into the MRI room was shaky because they had to switch him to the MRI-safe vent and didn’t have the proper respiratory equipment to make the transfer.  Meanwhile, we had been told that he could listen to music but instead they stuck giant plugs on top of Lucas’s ears, eliminating that possibility.  Still, we got settled and gave him a final suction before sending him into the abyss, with Krista standing by the machine to hold the end of his foot, which was popping out of the machine.  Then five minutes into the lengthy procedure, with Lucas’s heart rate spiking and the two of us becoming increasingly traumatized, we realized that his head was in fact moving and made the call to take Lucas out and bring in the anesthesiologist.

Ultimately we figured out that they had been unprepared for Lucas, with his trach and vent, as apparently no one had really reviewed his file and made a call about what would be needed.  It’s a complicated situation that gets us thinking about responsibility with a medically fragile child: should we have made more calls in advance of the appointment, should the complex care doctor have done more to prepare us and the radiology department, or should the hospital bureaucracy be more on top of things as it relates to kids like Lucas?  At any rate, by the time it was all over and Lucas was awake and ready to roll, we were four hours late to see the neurosurgeon, meaning that we had to reschedule that appointment for another time weeks down the line.

So after all that we won’t get an official read on the MRI results for some time.  We did hear from one doctor that the results could show a slight increase in the size of his ventricles (you may recall that this was a big issue back when Lucas’s hydrocephalus – or excess fluid in the brain – nearly led to him getting a shunt) but that it’s probably nothing to worry about.

In more positive news, we had a new nurse come for the first time in a few weeks today.  Her name is “Tope” and she seems to be very diligent and determined to figure out Lucas’s sometimes complicated schedule.  There’s less than 2 weeks until Victor returns, but with Burke heading off to Seattle next week it’s nice to get someone else ready to help out.  We want to thank all our friends for stepping up during the two weeks in which we didn’t have a second nurse.  Various people stopped by for a few hours to play with Lucas while whichever one of us was around got some work done in the adjacent room, and it was a big help.  While “babysitting” usually implies parents leaving the house, these hours that we were able to consentrate on other things while Lucas was happily entertained felt like real babysitting to us!

DC had it’s first real snowstorm of the year yesterday, a nasty mix of rain turning to heavy snow that left tens of thousands of people without power in the greater metropolitan area.  Power outages always make us a little nervous since Lucas depends on electricity for his ventilator, pulse-ox monitor, and suction machine.  Burke came home early from work to avoid the craziness on the streets of DC and we made sure that all our equipment was charged up with back-up batteries ready to go.   In the end, we maintained power and we look to be in the clear for now.  We’re hoping the snow melts enough so that we can make a trip to West Virginia this weekend to hang out in a cabin in the woods… Lucas’s first winter getaway!

Lucas has been in good spirits lately having recovered from the minor cold that he got last week.   However, we heard back from doctors at Children’s that cultures from Lucas’s trach grew two bacteria, Moraxella and Pseudomona.  The former is being treated by the antibiotic that we started over the weekend; the latter seems to be a common bacteria amongst kids with trachs, but the usual treatment involves a 6-month, twice-a-day drug delivered via a special nebulizer.  This does not sound very fun.  We realize that we’re going to have to be a little more conscious of cleaning all of Lucas’s equipment (we’ve gotten lazy) in order to prevent these sorts of bacteria from coming on in the future.  However, after consulting with our favorite source on all things related to tracheotomies (the parent forum at tracheotomy.com), we found out that Pseudomonas can be a really nasty infection, sometimes bringing fevers and even hospitalization.  So we’re again grateful for Lucas’s work-horse of an immune system.

Thanks everyone for your thoughtful responses to our last post.  It’s reassuring to know that we can write about what’s on our minds – even when it’s not rainbows and holidays and Lucas’s awesome progress – and that you’ll stick with us.  Thanks.

But of course there is progress to report, too.  This week we had two visits to specialists who, once again, confirmed that Lucas is doing great. On Wednesday we went in for a follow up visit with our pulmonary doctor who listened to Lucas’s breathing and said he sounded good, even with his small cold.  We spent a while talking with him about questions related to pressure settings for the vent and time off the vent and on the valve.  Dr. Koumbourlis is always warm and helpful and open to talking pulmonology for as long as we want, but ultimately he kept answering our questions by telling us to keep doing what we’re doing: experimenting with time off the vent while avoiding pushing Lucas to exhaustion; and maintaining the settings on the vent which are minimal and not necessary to change if he doesn’t need it.

We also met with our favorite respiratory tech who was full of geeky vent and trach tricks.  He talked to us about the alarm level settings on the vent, the positioning of the trach in Lucas’s neck, and a new technique for giving Lucas extra breaths when his oxygen saturation level dips down into the low 90s.  He has decades of experience working with kids and adults with respiratory issues, so when he got gushy about how well Lucas is doing (and the two of us, too), it felt like a serious compliment.

Two days later we were back at Children’s for a slightly more traumatic visit to the Ear Nose and Throat doctor, who was checking Lucas’s trach and the tubes in his ears.  It turns out Lucas’s ears collect a lot of wax (so embarrassing!), and thus the doctors tried to clean his ears so they could see the tubes.  It also turns out Lucas HATES having his ears cleaned.  The ENT doc and his assistant then wanted to look down the stoma (hole) in his neck with a tiny camera.  They somehow didn’t have the tiny camera which fits down his trach tube available, so they had to pull the trach tube out and stick a larger camera directly into Lucas’s neck, which was pretty traumatic.  Lucas hated that too.

The final report was that things looked good and to keep doing what we’re doing.  We should have called it a day at that, but instead we proceeded up to the lab for a blood draw.  Lucas has notoriously difficult veins to find, which meant lots more poking with even sharper objects than the ENTs used.  Burke snagged a “Mr. Grumpy” sticker for Lucas to try to distract him, but Lucas just threw it on the ground (grumpy indeed!)  By the time we got home Lucas was exhausted.  Even after his long nap he was not the happiest camper in the afternoon.

The other fun news this week is that Lucas’s vocabulary is growing, especially his ability to identify body parts.   He almost always nails the response for “where’s your nose?”, sometimes even preemptively answering it by pointing to his nose.  And for a kid with severe muscle weakness, he has really amazing aim.  He’s also getting pretty good at identifying ears, mouth, belly, and even wiggling his toes on command.  And when he’s not pointing at parts of his body, Lucas is using his hands more actively to make the sign for yes/more, to play his new xylophone, and to feel the textures in his books.  (See the picture of the snowman’s fuzzy mittens above.)

And the final news for today is that although Lucas has had a bit of a cold all week, it hasn’t slowed him down much.  He’s had a small cough and has needed a lot more trach suctioning than usual.  But he’s a trooper and we’re hoping he’s turning the corner on the cold this weekend.

And finally, we never got around to mentioned to the visit of our friends Daniella, Gabe, and Rafi on New Years day.  It was great to see them, and especially great to see Rafi – he’s older, bigger, faster and more determined than when we met him this summer (pics of that visit here).   Rafi brought his helmet with him, which happened to be made of the same jungle-animal green material as Lucas’s trunk brace.  So we tried to get the two of them to pose together, but the closest shot we got was the one below, which represents the meeting well: Rafi on the move, and Lucas shocked at a baby who moves so darn fast!  We’re pretty sure Rafi was too young to take Lucas’s reaction personally and that they’ll be good friends down the road.

The past week was great for Lucas and for us, and we’re finally getting a chance to sit down and write about it.  The highlights were an extremely informative (and long!) visit to Children’s on Thursday, as well as the “My Baby Rides the Short Bus” book event/community gathering featuring parents of kids with special needs that we helped organize this past Saturday.  In between Lucas came down with a cold (and got over it quickly); our friends Jesse and Alessandra visited us from New York (and announced they’re expecting a baby!!); we escaped and went out on Friday night together for a fun Cabaret fundraiser for DC Jobs with Justice (complete with hand-dancing lessons); and finally, we decorated our first Christmas tree with Lucas.

Our long day at Children’s last Thursday is worth recounting because it featured one of the best visits with a team of medical professionals that we’ve ever had.  After an appointment with the complex care doctor — who helps tie all of Lucas’s specialists together and keeps on top of his overall health plan — we went downstairs to the MDA clinic.  It took a while to get Lucas settled in and record the requisite vital signs (he’s now about 33 1/2 inches long!) and by the time the team of doctors and therapists arrived Lucas was napping in his stroller/chair.  We started talking with them and soon Lucas woke up, and fortunately he was in a good mood and ready to perform.  The physical medicine doctor and researcher had never met Lucas before but presumably had read lots of reports about him.  They were genuinely impressed at how well he is doing, and in particular, extremely positive about his cognitive development and potential for interaction and communication.  The doctor said almost immediately “get him an i-pad!” and later handed us a prescription.  It’s mind-blowing to imagine that these hip computer things might help our baby tell us what he wants and feels, but since we’ve heard success stories from other parents, we’re willing to try.

The doctor and physical therapist had lots of other great ideas.  Maybe most significantly, they helped adjust Lucas’s stroller/chair.  Since we got the chair back in July we’ve struggled with it.  His big head makes him slump him down and either get spaced out or appear uncomfortable.  These doctors, though, looked at the angle of his hips and called in a technician who loosened a few screws and opened the angle of the seat slightly.  We put Lucas back in the chair and he actually smiled!  Suddenly he had more stability in his torso, meaning more room for his lungs, meaning more oxygen and more energy.  All five of us stood and ooohed and aaahed at how great he looked, and at the miracle of a more space in his torso bringing so much alertness to his face.  (Note to any slouching readers: this applies not just to Lucas, but to you, too!  It is good for all of us to sit up straight, and not take that space for our lungs for granted.)

The great ideas and positive reinforcement around Lucas’s growth and development went on for over and hour.  We then eventually we met the new neurologist who’ll be working with Lucas, a young doctor who showed interest and willingness in do research around Lucas’s disease.  By the time it was all over we had been at Children’s for six hours without lunch and we were all ready get home.  But unlike past visits when Lucas spent the day at the hospital getting poked, prodded, measured, and interrogated without getting much in return, this time we went away excited, with dozens of new ideas.

Two days later, we hosted the “Baby Rides the Short Bus” event.  About 45 people — many of whom were our wonderful friends! — turned out on a cold Saturday evening to listen to five parents tell their stories of raising kids with disabilities.  Krista welcomed everyone and introduced all the parents who would share.  Jen Silverman, co-editor of the book, came from New York and opened the stories section of the event by reading from the book.  Then Tricia, a mom of 2 and blogger from Baltimore read from her blog.  Then Jane, a mother of five from DC and activist with Empower DC, told about her son, Andre, who sat next to her.  Then Burke read from our blog (and got the whole crowd teary-eyed), and then Doreen, mother of two and director of the local affiliate of Family Voices, talked about her family and about the challenges of discrimination in schools in Washington DC.  We then opened the floor and more parents of kids with special needs shared their stories about ignorance, discrimination, fighting for their kids, and the joys of raising unique families. We ended with a potluck dinner and time for people to meet and share information.

It was definitely humbling for us to share the stage with parents who have so much more experience than us, and relieving to be in a space where we could talk about how hard it can be to people who know what we’re going through and, as much as anyone can, what may lie ahead for us.  We were also really happy to learn about new resources — including Jane and Doreen, the two other local parents on the panel.

One of the amazing moments near the conclusion of the event was when one parent asked the crowd how many people were parents of kids with special needs (a few) and how many were friends of parents who have kids with special needs (a lot).  She said, “Wow.  I don’t have any friends left who are parents of ‘typical’ kids.”  She said that most of them can’t handle her family, and they get embarrassed or impatient when her kids act “strangely” in public.  So the success of the event wasn’t just making connections with other families who are facing similar challenges as we are.   Ultimately we all want our kids and families to be loved and embraced by everyone, so it was powerful to have so many friends and strangers there to listen to our stories.

September has been the month of many outings for Lucas.  Our Labor Day weekend trip to the woods proved that we could pack well enough to make it through an entire weekend.  The momentum of that successful journey convinced Lucas (and us) to accept his first ever invitation to visit another home.

The invitation came from the Gomes family.  Burke got to know Yves, his aunt Dominica, uncle Henry, and cousin Harold through the immigrant stories project he’s working on, and we wrote about Yves and Harold a while back.  Yves has been the center of much deserved media attention since he won a stay on his deportation a couple months ago, but we were especially excited to get to hang out with Harold.  Harold has muscular dystrophy; a few years ago he got a tracheostomy and he now uses the same vent as Lucas.  But unlike Lucas, Harold is our age.

Although Krista and Lucas were meeting the Gomes for the first time, the dinner felt like a gathering of old friends.  We jumped right into talking about vent settings, suction techniques, and the adventures of home nursing.  We talked with Dominica about the family learning home trach care.  Harold told us the story of getting his trach, we told about everything we’ve learned about Lucas’s disease, needs, and abilities over the past year.  Although this may not sound like the stuff of intimate dinner conversation, it was.  And, among other things, we also got to hear more of the Gomes family’s immigration story as well as talk basketball, Yves and Burke’s shared passion.  Many, many thanks to the Gomes for a wonderful evening!

We talk about getting used to packing up for a Lucas journey, but the reality is that the list of supplies is so incredibly long that there’s often something we forget.  For our trip to the Gomes, we forgot to switch Lucas’s cloth diaper to a disposable one before we left the house, and we forgot the baby wipes, which we ended up desperately needing.. leading to an awkward situation in the middle of dinner :)  Last week we went to the doctor’s office and forgot Lucas’s food, feeding tube and the tray for his new stroller that carries his ventilator and suction machine.  We came up with creative solutions in each case, but there are so many other things that we absolutely can’t forget.  Suction machine and catheters.  Resuscitation bag. Extra trachs. Batteries charged on all the machines and/or back up power sources.  Fortunately, two of the machines we can’t forget – the vent and monitor – are always attached to Lucas, so forgetting them would be like forgetting our heads.  Which on some days seems possible.

Nonetheless, we still made it out to MORE adventures this past weekend.  It was Sha’s birthday this week so Lucas insisted that we roll up the street to his Sunday afternoon party.  Lucas had a good time, and he got to sit at the table and watch a card game, play with a balloon, and then lie back in the yard and watch the afternoon turn to evening.   On Saturday Lucas’s uncle Isham celebrated his birthday at the River House, and Victor agreed to come hang out with Lucas while the two of us went out for the evening.  It was yet another first – the first time both of us left the District of Columbia with Lucas at home.

On Tuesday Lucas’s Nonna and Papa arrived in DC to hang out while Krista goes to Oregon for an extended weekend.   On Wednesday morning all five of us went for a walk with Lucas strapped into his newly re-fitted fancy stroller, and later that day Krista hopped a plane for the west coast.

Though the increasing ease of car and stroller journeys with Lucas is exciting, it’s still hard for us to not be able to take longer trips.  Burke traveled to Seattle in August and now it’s Krista’s turn to go to Portland.  In both cases it’s bittersweet: nice to be able to go back to where we grew up and visit our families (for the first time in over a year); but sad to not be able to take Lucas, and difficult to have to take turns and not be able to all travel together.  For now, Lucas’s condition is still too fragile for air travel but that will change in the future.  And in the meantime we’ll keep rolling to the park and driving to the woods, at least as long as the beautiful fall weather allows us…