Lucas Camilo

During a recent appointment with the ENT (Ear, Nose and Throat doctor) we learned that Lucas has some major fluid buildup in his ears, and that surgery to place tubes in both ears would be the best solution to the problem.  Back in February Lucas had a hearing test that showed mild to moderate hearing loss, but the test was also somewhat inconclusive because Lucas puked all over the place half way through it (in fact, it was the day before his hospitalization for low sodium).

It was somewhat of a relief to hear that his bad hearing – supposedly equivalent to the muddled sound of being under water – is likely due to this fluid buildup, and we were also encouraged to hear that there was a rather simple solution to the problem.  Surgery is never fun (Lucas has already had two surgeries, for his tracheostomy and gastrointestinal feeding tube) but this one sounds relitively harmless.  Still, Krista has been researching osteopathy and cranio-sacral therapy and there may in fact be alternatives to the surgery.  Ultimately we’re anxious to help Lucas improve his hearing and dealing with the excess eardrum fluid will be a big step forward.

We also want to take a moment today to give a special congratulations to our friends Daniella and Gabe who gave birth to a beautiful little boy on Friday.  Rafael or “Rafi” arrived early like Lucas, and he was even smaller when he was born (less than 3 pounds!)   Rafi also got his mom’s last name with dad’s last name placed in between, a good tradition if you ask us :)  And we hear that he’s doing great, wiggling around and already starting to eat.  We know from experience that spending the early days of your baby’s life in the neonatal intensive care unit is not an easy thing, nor is it easy to have to wait to hold your baby, so we’re sending lots of love and solidarity to New Haven.  We (Lucas included) can’t wait to meet little Rafi!

We’re settling into a more routines with Lucas, something that was hard to imagine when we first brought him home from the hospital in November.  Back then we didn’t know what it would be like to have lots of machines around our home as part of Lucas’s entourage, or what the pressures of being totally responsible for a medically fragile child would entail, or how we’d handle having nurses around part of the time to help out.  New parents never really know what they’re getting into, but having a baby like Lucas takes that “we had no idea how much it would change our lives!” cliché to a new level.

And yet, despite all of Lucas’s continued challenges and the unique nature of our home (parts of which must look like a mini-ICU to newcomers) we keep settling into routines — from the weekly changing Lucas’s tracheostomy tube  to home suction machine maintenance.  And as those things become routine they feel less daunting and more like the normal stuff of being a family.  As Megan put it, after spending enough time around Lucas you start to think all babies come attached to machines.  Indeed, of the many great things Lucas has brought to us, one is the reminder that there is no single “right” way of being a family.

A rather amusing pattern that has emerged is Lucas’s penchant for being a night owl.  When there’s a night nurse – usually Victor, who’s become a favorite of Lucas’s and vice-versa – we shift the little guy from his big crib in the main living room area to a smaller crib in the back room.  This usually happens around 11 pm and allows us to sleep though those nights despite potential alarms, not to mention the growl of the suction machine.  Now, 11 pm is probably considered a rather late bed-time for a 8-month old baby, but that’s just the way Lucas likes it.  In fact, lately when we make the shift he’s often more awake and wiggly than ever, smiling, staring up at his mobile, and sucking his thumb.  We can’t help but hang out and play with him in these moments when he’s at his best; the problem, however, is that as it gets toward midnight we start to get rather tired ourselves.  So lately Lucas has been outlasting us, occasionally playing with Victor until 1 am while we sleep.

Of course, on these days he often sleeps in later and requires a couple naps during the day.  But for now Lucas seems happy with the routine, and if it works for all three of us, why change it?   What’s funny is the way it surprises people when they ask about Lucas’s bedtime – we sometimes get incredulous looks which makes us feel a bit sheepish, as if we’re irresponsible parents for letting him stay up until midnight.  But it’s just one part of his unique, non-traditional baby routine that we’re getting used to.

Lucas had a great weekend, especially since his aunt Megan came to play.  Krista, Megan and Lucas got outside on Friday morning to bask in the sun in the front yard – Lucas was happy we found some shade but fairly unamused by the trees, focusing instead on teaching Megan the thumb-sucking technique he’s been perfecting over the last week.  The temperature dropped over the weekend back to cooler spring-like weather, and all four of us went out for a stroll around the neighborhood on Sunday (including a brief attempt at off-road strollering into Rock Creek Park, which needless to say got a little treacherous).

The fantastic musical and theater crew Bread and Puppet  was in town this weekend, so we took advantage of having nurses on Friday and Saturday evenings to get out to see their show, the “Dirt Cheap Money Circus.”  They opened with a scientist on stilts talking about the empirical evidence for why we should increase taxes on high income DC residents.  The skit was part of raising support for Save our Safety Net DC, an important campaign that Burke has been helping out with to challenge budget cuts for local social service programs.

Finally, Lucas’s cold had been lingering, so he hadn’t taken a bath in a few days.  This morning it was time, so Megan got to witness whale bath wiggles, and treated Lucas to a special massage afterward (and she’s a professional).  We try not to speak for Lucas too often, but today he definitely says “don’t leave, aunt Megan!”

Today marks Lucas’s first tax day, and the other night he got to watch his parents struggle through their inaugural episode of “filing separately on the same return.”  That’s what you have to do in DC when you’re registered domestic partners, and needless to say it took us a while to figure out what the heck that phrase even means.  We probably should have pulled out our book “Unmarried to Each Other,” the guide for people like us who live together but are not married (either by choice in our case or by law in most states for same-sex couples) because none of the instructions or tax help experts could explain what to do.  The occasion also marked the first time that Lucas was listed as a dependent, a milestone that appeared to be lost on the little guy; on this particular evening he was so intent on vigorously sucking his thumb – a new skill he’s recently acquired – that he completely ignored the whole rigmarole around taxes.

Our new tax status is just one of the changes going on at the so-called Hanson home. (Incidentally, you may remember that we joked last year about how everyone at Children’s called Burke “Mr. Hanson.”  We’re happy to report that the tradition has continued now that we’re home, and our relationship status is complicated enough that we rarely bother to explain that he has a different last name from Krista and Lucas.)  One of the big shifts that’s happened is that we now have some nursing support during the day.  Two days a week Florence, a new nurse that started with Lucas a few weeks ago, comes to our home in the early afternoon and stays for about eight hours.  This allows us both be out of the house during the day and in the evening, such as when Krista has her class and Burke has a meeting.   We’ve also been able to go out to dinner with friends twice over the last few weeks which is a nice treat.

Part of the reason we got the extra nursing is that Burke has been preparing to go back to work on a more regular basis (he’s been doing part-time work with CISPES since Lucas was born).  He applied for a job with the Center for Community Change a few weeks ago and on Friday he was offered the job!  Burke will be coordinating a media campaign involving the production and dissemination of short videos related to the fight for immigration reform in the US.  It’s exciting news, and although it was negotiated into the contract that he’ll spend only 3-4 days a week in the office, it’s still a big change for us.  Today is Burke’s first day at CCC and rumor has it people wear collared shirts and often tuck them in to their pants – which is to say its a bit more formal, one of many things that will be distinct from the organizing gigs both of us are used to being involved in.

Lucas had a good week despite coming down with a bit of a cold.  The 90 degree temperatures in Washington DC meant we got outside a few more times, including a great walk through the neighborhood, admiring the tall blooming trees, running into friends, and getting decorated with flower petals.  Lucas still isn’t too happy about the bright sun, so getting out in the morning or late afternoon tends to be the best bet.  And though the brimmed hat helps, he might be due for a cool pair of baby sunglasses.

This week Lucas also took various turns mounting his yellow “peanut”.  The occupational therapist recommended this rubber, inflatable object that is similar to the classic exercise ball except that its peanut-shaped, with a groove down the middle.  Once on the peanut Lucas can extend his body in a giant stretch, practice putting weight on his feet, and roll from side to side.  He likes going upside down and seems to really enjoy posing for glamor shots while doing the famous peanut-back-roll.

Lucas had another special visitor this week, Krista’s old friend Jojo who came all the way from Southampton, England (via Montreal where she was visiting her brother).  Krista and Jojo met in Austria 16 years ago when they were high school exchange students and have kept in touch all these years.  Jojo is a doctor, so it was great to exchange hospital stories with a friend who has experienced the doctor-patient relationship from the other side.  (For example we learned that not all parents are suckers for a doctor who compliments their cute baby;  rather, some incredulously ask if the doctor says that to all parents, leading to an awkward situation.  Ultimately, Jojo suggests we find other criteria for assessing Lucas’s care providers.)

By the middle of the week Lucas had come down with a cold which meant lots of snot soaked rags and more frequent suctioning.  He wasn’t slowed much by the cold, though it did limit some of the activities that we could do.  Now Lucas seems to have turned the corner, and if the weather stays nice we may get out for another Sunday walk in the park.

On the way back from Children’s on Monday we made it a leisurely trip, stopping off at our favorite vegan lunch spot to pick up food before bringing a sleeping Lucas back to our apartment.  It was our third trip to Children’s in five business days, a rather remarkable feat in itself, but noteworthy especially for how routine its become to transport Lucas to such appointments.  He’s gotten used to it and so have we.  Which isn’t to say that we love making such frequent trips to the hospital (in fact we don’t have another appointment for a week and a half – phew!) but just that like many things with Lucas that would have seemed unimaginable a year ago, regular visits with doctors and therapists is now just a normal part of our reality.

So what did we learn in those appointments?  The visit last Tuesday with the neuromuscular doctor who diagnosed Lucas was the most highly anticipated, but didn’t end up being as informative as we had expected.  Perhaps it was because we’ve already learned so much about Myotubular Myopathy, but despite sitting with him for over an hour, Dr. Leshner didn’t really have much new to offer.  He said that Lucas’s particular genetic mutation doesn’t really tell us anything about his prognosis; as a muscle disease, x-linked MTM is severe in all cases, but every child still develops differently within a spectrum.  Though he seemed moderately  impressed with Lucas’s progress so far he refused to offer many predictions on where he would be a few years from now.  He seemed somewhat concerned about the large size of the ventricles in Lucas’s brain and said that his big, funny-shaped head was not related to MTM but rather to the bleeding in his brain at birth (this contradicted some of what we had learned from than the neurosurgeon and the other neurologist that knows Lucas).

In terms of possible treatments for Lucas, he seemed intent on offering little hope.  We asked him about mice studies that have shown possibilities for a treatment related to Calcium but he was unimpressed (thanks to Sara for finding the MTM research and sharing the articles with us).  He allowed that some years from now doctors and researchers will know more and that there may be some progress on treatments for muscle diseases like MTM, but that was about all we got out of him.

We came away from the appointment disappointed but not disheartened.  Other doctors, not to mention our own connections and research, will continue to lead us towards new discoveries and possibilities with Lucas, while his therapies will continue to help him progress.

On the other hand, we were pleasantly surprised by an appointment a few days later with the child development specialist.  We had heard reports that this particular doctor had tough standards and tended to be rather negative.  Instead, she and her assistant encouraged us to be even more optimistic about Lucas’s condition and possibilities.  They were impressed by Lucas’s deliberate grabbing at toys and also glad to hear that he has been developing a bigger range of facial expressions.  They told us that we should assume that those expressions have been “inside” Lucas for a while now — what’s new is the way that Lucas is working his facial muscles, not the cognitive or emotional experience that leads to the smile itself.  This brought us back to a comment by the neuromuscular doctor related to a major challenge that Lucas will face: even as he grows and his mind develops and processes the outside world in ways similar to his peers, people will tend to underestimate him.  Why?  Because his limited movement and especially the low muscle tone in his face will give an impression that he’s not following or cognitively understanding.

The developmental specialists had a number of good suggestions about how to interact with and talk to Lucas but also warned about over-stimulation.  She said that when Lucas makes uncomfortable faces, or rubs his eyes, or stretches out his body and looks at the blank wall behind him, it’s possible that he’s communicating that he’s done playing.  He certainly has lots of toys and bright colored objects hanging from and around his crib, and plenty of the two of us making goofy faces in front of him… maybe sometimes he just gets sick of it all!  One other noteworthy thing is that they believe Lucas is likely hearing us despite the test in February that showed some moderate hearing loss, and encouraged us to continue speaking to him with a well-projected voice.

Perhaps we came away feeling good about the 2-hour appointment in large part because they didn’t say anything overtly negative, and didn’t do anything to quell our own enthusiasm about Lucas’s progress.  On a similar note, the third trip to the hospital of the week – a session with the occupational therapist – produced positive results.  Lucas bounced around on a giant red rubber ball, practicing rolling over and reaching out to brace himself.  A few times Krista almost had a heart attack seeing the way that Cathy tossed Lucas around, but we trust her and were excited to realize that we don’t need to be ultra-delicate with Lucas at all times.

In February our friends Simon and Paola gave birth to a baby boy, and the little guy got a very special name: Camilo.  In taking the revolutionary name Camilo he thereby became Lucas’s tocayo (in Mexico that’s what it’s called when someone shares a name with you).

Today, Lucas Camilo finally met his extremely cute tocayo and it was fun times all around.  Needless to say, the two are very different babies, and it was rather jarring for us to hold a little dude who wiggles around so much and makes loud noises (not to mention a baby that’s able to hold his head up on his own).  Camilo cried and was fussy at times, while contorting his body and making all sorts of goofy faces; Lucas acted as mellow as can be, looking around the room slowly, taking it in, and only occasionally offering a change in expression.  We know that Lucas’s disease prevents him from doing a lot of things that other babies do, and at times that has made us sad.  On this day it was great to see Lucas be himself and to marvel at how far he has come, and how unique he still is.  And it was hilarious to put the two little guys who share the name Camilo next to each other and watch their very distinct reactions.  Camilo was very serious about the exchange, while Lucas kept his poker face. We think they both got a kick out of it all.