Lucas Camilo

It was a good visit to the pediatrician yesterday.  Originally we sort of stumbled upon Dr. Jackson having actually signed up to have her associate, Dr. Lang, as Lucas’s pediatrician.  But it turns out that Dr. Jackson has experience with kids who have trachs and g-tubes, so she’s been really helpful and thoughtful the couple times we’ve seen her.  She has an understanding of the challenges we’re facing but also a sense of humor about it.  For example, when she noticed that Lucas had undescended testicles during our first visit – the least of his worries as far as we’re concerned but something that certain docs in the NICU kept reminding us of – she exclaimed, “no big deal, he won’t be needing those anytime soon!”

On this day she examined Lucas and concluded that he seemed healthy on the whole, though with the possibility of a urinary tract infection given his history of Vesicoureteral reflux (a condition in which the urine backs up towards his kidney).  They took a urine sample and sent us on our way, saying that the other possibility for the recent vomiting could be that he’s getting too much milk so that we may have to cut back on his feeds.  We haven’t heard back about the UTI but we’re happy to report that this afternoon he’s doing a lot better, acting less lethargic and working on an extended puke-free stretch. (On another note, it turns out that DC mayor Adrian Fenty sees the same pediatrician as us – we ran into him in the hallway and he opened the door for Lucas’s stroller.  We were so caught off guard that we didn’t get it together to trash talk his recent teacher firings or any of his other bad policies.)

We also had some more thoughts about some of the ideas we laid out in the January 28 post about doctors, parents, and treatments.  It happens that we’ve both been reading an amazing anthology called “My Baby Rides the Short Bus; The Unabashedly Human Experience of Raising Kids with Disabilities” and one of the stories Burke read early this morning when he couldn’t sleep really resonated with our recent reflections.  It’s called “A User’s Guide to Self-Help Literature” and has some very practical advice about how to wade through all the advice, marketing, and messaging of doctors and corporations in relation to special needs kids.  We should mention that we read some more about the author Glenn Doman – who was part of a team that researched child brain injury and came up with unique treatments for it in the 1960s – and it turns out that many of his methods  are considered unproven or even harmful by many “experts”.  Which isn’t to say we’re ready to discard them, but rather that we’re at a stage in Lucas’s development where we need to take in everything but be wary of dogmas and sure-fire cures; it won’t be one book or program or magic oil that will solve Lucas’s problems, if they are to be “solved”.  For now we’ll settle on hard work, loving community, and perseverance.  Or as the author of the article puts it:

“What we outsiders need is a good pair of army boots to kick down doors and kick recalcitrant service providers’ asses, not patronizing platitudes or signposts to interventions affordable only by the top 10 percent… In the end the greatest hope for people with disabilities – our kids – is inclusion in truly accepting, nurturing communities that practice mutual aid on an everyday basis.  We’re not going to get that from the increasingly corporate education or medical systems, as necessary as some of what they offer may be at the moment.  The best self-help doesn’t come out of a book; it comes from real-world connections, skill-sharing, and organizing to meet our own needs whenever possible.  Don’t ever forget it: you and the kid for whom you care are the real experts.”

And with that we’ll conclude this post and leave you with some favorite pics of Lucas from the month of January…

Lucas has continued to have daily spit-up episodes so we’re heading to the pediatrician’s tomorrow morning.  We’d like to think that he’s just being a baby – baby’s puke, after all – but he’s also been lethargic the last couple of days and though he hasn’t spiked a fever, repeated vomiting is especially scary for Lucas because of the possibility of aspiration.  In fact, the other day some of the breast milk he spit up found its way into his lungs and we had a bit of a scare… we don’t want to take any more chances and thus we’re off to the docs.

With Lucas sleeping a lot the last few days we’ve had time to think more about the future.  On Tuesday night we watched “Lorenzo’s Oil”, an early 90s movie about a young boy with a terminal illness staring Susan Sarandan and Nick Nolte (the latter sporting a bad Italian accent).  Watching Hollywood dramas about special needs children may not be the best idea when your own baby is struggling with health issues, but in this case the movie gave us a lot to think about.  It’s based on the story of Lorenzo Odone, who was diagnosed with a genetic disease called Adrenoleukodystrophy (or ADL) when he was 5, and his parents who search desperately for a treatment despite doctors, foundations and other parents basically telling them to just let him die.  Their research leads them to create a special oil that helps counteract the symptoms of the disease (ADL essentially causes a deficiency of long-chain fatty acids which in turn leads to deterioration of the brain).  In real life Lorenzo survived for 25 years; no ADL patient had previously lived more than 3 years after being diagnosed.

So it’s an inspiring story, and it inevitably got us thinking about Lucas, not just because ADL was among the many genetic diseases he tested negative for in the hospital.  One of the great things about the story is the way in which the parents are empowered, not because of but despite the medical industry.  Not all the doctors are bad – one in particular becomes a major ally in their search for an unconventional treatment – but in most cases doctors base their recommendations and prescriptions on statistics instead of a child’s particular set of circumstances, proving themselves to be cogs in a system corrupted by money and often determined to maintain the status quo.  It takes some real courage and creativity to challenge that system, and the parents of Lorenzo Odone certainly had a lot of both, leading to fantastic results.

The movie also got us thinking again about diagnoses.  On the one hand we’re very thankful that Lucas hasn’t tested positive for any disorder like ADL; on the other, being undiagnosed limits what we can do as parents to help Lucas.  Whereas the couple in the movie pours through text books and journal articles about ADL, educating themselves enough about human biology to come up with a rather miraculous solution, we’re left googling symptoms   like “hypotonia” and broad concepts like “brain injury”.  In a way the film helped us understand why doctors tried so hard to diagnose the underlying condition which caused Lucas’s premature birth, breathing problems, and low muscle tone.  And who knows: next week we’re off to the brain injury clinic and we just might hear some thoughtful insight on Lucas’s progress from the neurologists.  Then again, we might get more speculation, generalization and presumption about the possible effect of bleeding on Lucas’s brain.

Speaking of brain injury, we’ve been reading a fascinating book lately titled “What To Do About Your Brain Injured Child” written by a guy named Glenn Doman who started the Institutes for the Achievement of Human Potential after decades of working with children who had brain injuries.  We found out about the Institutes (located in Philadelphia) and the book from our friend Evan and we may actually go there at some point to check out a seminar or two.  Though the book is somewhat dated having been written in the 60s, it tells an amazing story of how a group of therapists and doctors came to understand and treat children with brain injuries.  The neuroscience is actually fairly easy to understand, and we appreciate some of the broader implications, such as techniques they come up with to help brain-injured children go through the various stages of development.  We also enjoyed the hyperbole on the back of the book which coincides with some of our thoughts above about “Lorenzo’s Oil”: “It is the parents who have accomplished the miracles… Parents, those commonly ignored, sometimes despised, frequently patronized, almost never believed people, will have done at home all of the treatment which brought a child from despair to hope, from paralysis to walking… etc.”

A little over the top, but the idea that we can make a difference has us doing all we can to learn about Lucas’s challenges – from the huge selection of child development and special needs kids books on our bookshelf, to grilling every professional we meet, to Krista recently starting an anatomy and physiology class at UDC.  We’re not going to take too much credit for any progress (yet) and we won’t be getting an honorary PhD like the father of Lorenzo Odone, but for now we’re doing our best: learning about Lucas’s special set up circumstances, taking in many different opinions and ideas about how to best care for him, and coming up with a plan for the (unpredictable) future.

PS: We’re sitting down tonight to watch part of “Howard Zinn: You Can’t be Neutral on a Moving Train”, the documentary about the great historian who died yesterday at the age of 87.  He was committed to making history serve people and social movements and we, like millions of others, learned so much from him.  We plan on reading Lucas the “People’s History of the United States of America” from start to finish…

It’s been a few days since we last blogged, but not for lack of material.  Rather, we’ve been busy keeping up with Lucas, training a new nurse, and getting to spend time with friends.

On Thursday one of Lucas’s major shipments arrived: the monthly re-supply of everything from gauze to suction catheters to bottles of saline to new circuits for his ventilator.  (If anyone in DC ever needs boxes for moving let us know because for now we’re thinking we could finance Lucas’s college education selling cardboard boxes at a nickle a piece.) Buried at the bottom of his med-supply delivery, though, was a play mat sent by his aunt and cousins in Seattle.

Although Lucas loves some fresh saline solution, the play mat with hanging toys took the cake. You can check out a quick video below of Lucas playing with his favorite of the animals on the mat, an elephant with rings that hang just an inch off the ground — the perfect height for him to grab and experiment with the distance from his extended arm to his mouth.  After the whole eye doctor episode a week ago, it’s been really exciting to see Lucas clearly identify something he wants to grab and work for it. Usually we help him wrap his fingers around toys, but more than once his hand fell off the rings and he figured out how to reach, lift his arm, open his fingers, get them through the rings, and then clamp down. We’re pretty sure this is evidence that he’s brilliant.

The play mat excitement has been dampened only slightly (but literally) by a few puke episodes over the last week. We’re not sure what’s going on, but we’re vigilantly taking his temperature and watching for any other signs that he’s getting sick.  So far everything else seems to be working well in Lucas’s system, and thus we’re crossing our fingers that the problem has been our enthusiasm for throwing a little extra milk in every feeding to help fatten him up.

Meanwhile, Lucas has a new nurse named Rugy. Although she doesn’t have a lot of experience working with kids who have trachs, she’s incredibly loving toward Lucas and she’s learning about his particular needs. It feels like a pretty big omission to have had nurses in our home 10-12 hours a day for the last 2 months but to not have written about them yet. The relationships with the nurses and the home-health agency are very complicated, though, so it’s hard to know where to start.  We’ll write more about them soon, but for now, we should say that it’s an amazing act of trust to leave Lucas with a near stranger, even if just to go to sleep, and we’re grateful that they work so hard to care for Lucas.

Finally, we’ve gotten to spend time this weekend with our friends Tom and Chris who are visiting from New York. Last night we went out to dinner with them and our friends/neighbors Sha and Matt, which was especially great because we’ve been thinking a lot about Sha (and telling Lucas about his family) over the weekend. Sha’s Mamaw passed away last week, and although we didn’t know her well, our lives have been richer from hearing Sha’s stories about his feisty, loving grandma.

Our week started out with an early morning visit to the pediatrician for Lucas’s latest shot.  It was to be the fourth dose of Synagis, a drug that helps prevent RSV (a virus akin to the common cold in adults but that would be devastating for a baby like Lucas with lung issues.)  Lucas got his first Synagis shot at Children’s while he was in the NICU and we’ve struggled to get future shots because of insurance issues – each dose of the drug costs upwards of $2000 for a baby of Lucas’s weight.  This time we arrived at the pediatrician’s office only to hear that both our primary insurance and the secondary insurance had rejected coverage for the latest dose.  It wasn’t clear if even paying out of pocket was an option, since the distributors of the drug probably hadn’t shipped it without a go-ahead from insurance.  We stuck around the doctor’s office for a while anyway since Lucas was having a rough morning with spit-up episodes.  Finally, we heard from the nurse that they had an extra dose of Synagis left over from another baby that would otherwise be wasted, and that we could give it to Lucas instead of waiting for the insurance issue to get worked out.  Problem solved, at least until next month’s dose.

Getting a massage post-bath

Wednesday brought back-to-back therapist visits, first from the physical therapist and then from Lucas’s new speech and language therapist who for now is helping develop a stronger suck as well as the swallow reflex.  She also brought along a Passy-Muir valve for Lucas, an amazing little device invented by a man with muscular dystrophy who wanted to be able to express himself despite having a tracheostomy and being on a ventilator.  The one-way valve allows air through the trach tube when Lucas inhales but then closes off during exhalation so that the breath goes around the trach and out through the mouth and nose, passing by the vocal chords on the way.  Lucas did great with the valve test, sporting it for close to 30 minutes and along the way beginning to make little sounds that he couldn’t previously make (there are lots of additional benefits to the valve beyond the ability to make noise, including increased ability to smell, taste and feel sensations in the mouth.)  Lucas also got to practice sucking with a special, new bottle that will help him move towards oral feeding.

Finally, we haven’t talked about Haiti yet on the blog but we’ve been thinking a lot about the horrible aftermath of last week’s earthquake.  (If you’re on facebook, Burke’s posted lots of information and links passed along by friends involved in Haiti solidarity, including those of two organizations that we donated to, Partners in Health and Konpay.)  It’s hard to imagine the extent of destruction and suffering in Haiti right now, and beyond the pressure needed to help ensure more aid arrives and that Haiti’s debt is canceled by the IMF, etc., we’re mostly feeling deep sadness about the situation.  This morning Democracy Now included some amazing stories of survival that demonstrated the will and spirit of the Haitian people, which is what will get the country through this crisis.

The sun is out in Washington DC today and it is warm.  Warm enough, in fact, that we wrapped Lucas in one just one extra layer and took him and his travel vent outside to do some good ol’ fashioned (or in Lucas’s case, first ever) porch sitting.  And it wasn’t just a typical January bright-and-crisp sunny day; rather, the DC sun beat down on our faces and heated us so much that Burke had to lie down on the porch to nap in the sun, while Krista and Lucas sat in the porch rocking chair and closed their eyes to soak in the warmth.

Not a lot has changed since we wrote our last post, but the continued love we receive, plus the January sun, have lifted our spirits some.  Lucas celebrated his 5 month birthday yesterday with a visit from his Tio Sha and Sha’s mom Mary.  Mary gave Lucas a gorgeous quilt she made for him which has bright colored animals, lush shades of green, butterflies and waves and leaves sown into the quilting, and a sun bursting up from behind gray clouds in the middle of it all.  If fabric could speak this quilt would be shouting with joy.  It’s pretty amazing.

This morning we marked our two-month anniversary home.  Our friends Paola and Simon came over and made us brunch, and Lucas got to snuggle up with Paola and her growing belly.  Lucas has been trying to make noises lately, and we think we heard him whispering some advice about the outside world to the little guy inside her.

We woke up this morning to the sweet sound of Martin Luther King Jr.’s voice on the radio laying out some of his more radical ideas in the famous “Beyond Vietnam” speech at the Riverside Church.  One quote resonated beyond its political meaning and onto our personal lives, the one about recommitting to the long and difficult, but “beautiful struggle” for a new world.  In this day of commemoration for Dr. King we think about building on his inspiration, combining politics and personal in one complicated but beautiful struggle.

We’ve heard from a lot of people that our blog is inspiring, and many of you have commented on what an amazing job we’re doing as parents in a very challenging situation with Lucas. We can’t tell you how much this means to us, but we’ve also joked that other than the few family members and friends who’ve had the opportunity to spend significant time with us since Lucas came home, the information about our lives is mostly received through the filtered voice of our blog… and let’s just say we do a good job of portraying ourselves in a glowingly positive light! Holed up in our basement apartment – for now at least as we protect Lucas during the remainder of the flu season – we’re often isolated from the world, so we use the power of prose to narrate the story of our son’s early life.  There’s a compelling and emotional draw to the story of a child born extremely sick who starts to recover against the expectations of doctors, and at times we get sucked into that narrative, figuring that the call from Oprah is just a few more blog posts away…

But all joking aside, it’s tough to find a balance between embellishing the positive – because we need the inspiration of our own story as much as anybody – and being honest about how very difficult being Lucas’s parents sometimes is.  In our case, having a baby who underwent a brain injury means accepting significant developmental delays, having lots of medical equipment spread throughout our living room, and needing professional nurses to take care of Lucas overnight while we sleep.  Perhaps what is most difficult is that it means not knowing: not knowing whether Lucas will be able to speak, walk, go to school, make friends, and so on.  We don’t dwell on it, but that uncertainty hangs over us everyday.

Yesterday we had a hard day at the hospital.  We went as part of the continuing series of follow-up appointments with various specialists that we’ve had since leaving the NICU.  Up first was the pulmonoligist, and along with the good news that Lucas’s lungs seem to be doing well, and that we can switch him off a medication that was having bad side effects, came some discouraging statements from the doctor.  Some babies, she said, get used to having the assistance of a ventilator and therefore once they have a trach and are attached to a vent they take a long time to finally breath entirely on their own.  She mentioned this without even looking at Lucas, having only been briefed by the pulmonology fellow who spoke with us and later examined Lucas.

After seeing the always-positive occupational therapist we made our way to the 4th floor for a visit with the ophthalmologist.  Lucas had his eyes examined twice in the NICU and both times the results were inconclusive.  This time the doctor reported that there was no damage to the optical nerves and therefore Lucas’s eyes appeared to be just fine.  Then he went on to say that being able to see is also about processing the information that comes in through his eyes, and that we can’t be sure whether that part has been effected by his brain injury.  But, he said, “take his eyes and put them in someone else and they’ll would work just fine.”  Wow, thanks for throwing a dark cloud over that supposedly good news.

At the end of the day we made it home exhausted after more than six hours at the hospital, Lucas no worse for the wear but the two of us feeling sad and vulnerable.  So perhaps we felt the need to write this post as somewhat of a disclaimer: if you come visit us, or talk to one of us on the phone or run into us on the street you may find that we’re actually having a hard time of it, that the answers to your questions about Lucas are not all positive, and that his story, despite our mostly positive telling of it, is not always an inspiration.  (Which isn’t to say that we don’t want or need your support – to the contrary your blog comments/calls/emails/questions/poems/thoughts/prayers are vital to us.)  But as we continue to struggle with this challenging situation, we’re also going to continue to articulate our deep hopes and positive visions for the future, on this blog and in other interactions.   Lucas does inspire more often than not, and his parents are certainly doing their best, trudging through the ups and downs like any other new parents, and living to tell about it.

Over the past few days because we’ve been very focused on Lucas and spending time together as a family, and the little guy, of course, has been soaking it all up.  We thought the two of us were pouring on a lot of attention, but it turns out that Lucas finds snuggling, playing and absorbing the attention of six people every day even more enjoyable than getting it from just Mom and Dad.

Lucas’s attention and awareness seem to have sharpened significantly lately, and with that his purposefulness of movement.  He makes eye contact longer and looks around with more curiosity than ever.  We’ve also been finding new positions to enable him to move his head on his own.  Lying in our arms he can usually move his head back and forth a bit, but on Monday he was in Nonna’s lap looking up at her and he slowly and more purposefully moved his head and neck to follow her head moving side to side.  Then during his physical therapy session yesterday we all watched with rapt attention as Lucas lay on his side and slowly but surely brought his shoulder and arm from the back of his body to the front to reach for a toy.  When he got it all the way over the five of us – Krista, Burke, Nonna, Papa, and Evan (the physical therapist) – let out a triumphant whoop.  Of course Lucas is still limited by his low tone — most babies at Lucas’s adjusted age of three months old would be able to do all sorts of head and arm movements — but his health challenges make it that much more beautiful to watch him accomplish these slow, purposeful movements.

Lucas’s breathing has also slowly been getting stronger.  He’s been consistently going three or four hours every day off the ventilator.  And lately when the secretions build up in his lungs he can breath through the congestion without dropping his oxygen saturation level very quickly.  His breathing has been so strong that he’s using the second “nose” again, making him vent AND tube free for occasional half hour stints.  One afternoon he used the nose-facilitated mobility to practice rolling in his crib, with his Dad and Pappa helping and cheering him along.  Yesterday, the extra nose mobility meant he could go all the way to the kitchen to watch his Nonna make her famous minestrone soup.

Lucas was sad to see his aunt Ashley and cousin Madden go back to Seattle on Monday.  Madden is the first of his cousins he’s met in person, and they both seemed to love it.  Although Madden’s lingering cough kept her away from him most of the time, she made him “I Love You” Lucas decorations and waved his favorite toys in front of his face, many of which used to be hers.  On the last day she was here she got to hold Lucas’s hand and read to him from one of her old books, “That’s Not My Puppy.”  The book is filled with different textures, and Madden gently rubbed Lucas’s hand along the velvety poodle tail, the rough doggie paws, and the furry puppy ears.  Lucas hadn’t totally understood the concept of “cousin” before the visit, but he’s now in love.

A few days ago we elaborated some big ideas around parenting, and this past week proved that another idea of ours holds water: that everyone benefits from bigger families.  (And by bigger families we mean lots of different kinds of relationships, not the Duggar’s version of a big family.)  Lucas spent so much time snuggling in his grandparents and aunt’s arms over the past week, and his increased awareness and expressiveness seems to correlate with that experience.  His love of snuggling has also increased exponentially with their visit (he gets a very satisfied look on his face whenever he finds his way into someones arms these days), so we’ll try to keep up with the snuggling mandate after they leave.  We look forward to having more help from Lucas’s tios and tias in Washington DC once the flu season ends and open season on Lucas snuggling begins…

Today is Krista’s birthday and Lucas celebrated by wearing his new sweater (knit by mom) for the first time;  and by getting a bath;

and by staring at his grandpa as he slept (isn’t it supposed to be the other way around?);

while Madden and dad played in the snow and created Frosty Jojo the Snowman (within site of Lucas’s crib);

ultimately he mostly celebrated by hanging out with his mom on her birthday…

HAPPY BIRTHDAY KRISTA!!