Lucas Camilo

Lucas has had quite an active social life lately, making frequent trips from our home despite the brisk fall temperatures.  And he’s unfazed by the many steps we have to go through to get him packed up… nor do the controversial new TSA regulations seem to bother him!  Ok, so we haven’t been through an airport yet with Lucas, but in the last few weeks we traveled upstairs for a great thanksgiving dinner with our neighbors, took multiple trips to our friend Sha’s house up the street, and made our way to a potluck dinner next door.   We’ve also had more visitors lately – close friends and family as well as people meeting Lucas for the first time.

It’s fun and exciting for us, but at times Lucas seems less enthusiastic about it.  In fact, he can become really shy when meeting new people.  It’s not an easily recognizable shyness; anxiety about strangers causes most kids to cry or run for their parents, but Lucas’s reaction is to appear totally spaced out.  People often end up saying, “Poor guy! He looks like he’s ready for a nap.”  One look at his pulse-ox monitor proves that to be false, and it’s especially frustrating because we’ve probably recently talked up Lucas’s new-found expressiveness, or his ability to vocalize over the vent, or his expanded arm movements.   (We should add that Lucas much prefers laying down to sitting up, so the fact that we often try to sit him up to meet people probably adds to his awkwardness about social situations.)  “He’s just not in the mood,” we say.  “But you should see him when he is.”

Two weeks ago we were excited to meet in person a family who we had previously connected with over the Internet.  Their daughter is about Lucas’s age and also has a tracheostomy.  There are dozens of quite unrelated reasons babies get trachs — Lucas has it because of muscle weakness, others because of lung problems, others because of brain or nervous system problems.  So it was a little bit startling for us to meet a little girl who has a plastic tube in her neck similar to Lucas’s and yet see that her family’s challenges are very different from our own.  Matt and Amy arrived with Brianna in their arms, not in a heavy stroller and unattached to a vent or monitor.  She crawled around our apartment, noticing interesting toys, grabbing them easily and shaking, studying, and tasting.  She could even pull herself up to a standing position.

The meeting and other recent interactions highlighted for us the extra uniqueness of our already unique situation.  Besides the trach and vent (Lucas’s most obvious and visible differences) he also remains very floppy.  He still can’t roll from his back to his side, or lift his legs off the ground, or hold his head up in the middle when he’s lying on his back.  He has very little head or torso control at all.    It’s scary to wonder if he’ll ever be sit up comfortably, without braces, for an extended period of time.  And sometimes this combination of his shyness around others and his extreme low muscle tone make for an awkward situation out in public.  All the more reason that we are appreciative of the amazing compassion, patience, and understanding many of those around us show for Lucas in his special situation.

Lucas has been waking up in a good mood lately, singing and laughing from the moment his eyes open.  The things that are so difficult vanish momentarily when Lucas grins with delight and waves his suction tube in the air.  We are grateful for it all — the bliss, the challenges, and the people who are loving us and walking with us on this journey.

<><><><>

The writing class Krista has been taking ends this week.  We appreciate everyone who reads our writings on this blog, the thoughts sometimes still in formation when we post them.  Here’s a poem Krista wrote, another work in progress.

Cradling My Precious Son

I sit, holding you in my
lumpy lap.  You tell me,
scrunched face, head pushing back,
you are tired.

Everything
is uncomfortable

I plead, silently, for you to
find a place on my lap
that is acceptable.
I lift your heavy head, droopy arms,
sagging midriff,
and tilt your weight from
my left arm to my whole chest.

You lean in,
tell me – without sound –
you want your thumb.
I slip my hand
around your body,
under your soft elbow.
And in one fluid movement,
as if our bodies were one again,
I help you bring
your hand to your face.

As if that movement were one
we both had always planned on –
me helping you lift your hands.

Thumb in mouth,
eyelids immediately heavy,
you say thank you
as you submit to sleep.

And I feel the surge of the
deepest pleasure of motherhood,
oxcytocin and love and spirit and God
all filling my body at once.
All cradling my precious son.

It is hard to believe, but today is the one year anniversary of the day we brought Lucas home from the hospital.  There’s so much to say about everything that’s happened in a year, that, well, it’s a good thing we keep a blog because we couldn’t begin to sum it all up in one post.  Most importantly, for a whole year we’ve felt happy multiple times a day to have such a beautiful kid in our lives… and especially happy to have him at home with us!

All three of us have come so far in a year, but Lucas most of all – he’s about three times bigger today than a year ago. Here’s Nov. 18, 2009…

And a year later…

Despite some residual effects of his cold/eye infection, Lucas has been doing well this past week.  He’s been sitting up more in his chair – sometimes using his brace which keeps him very upright – and spending a little more time off the ventilator, including a span of nearly 5 hours on the Passy-Muir valve – a new record!

Unfortunately, the nursing company that oversees Lucas’s home care has not been doing so well lately, and they’ve decided to take it out on their clients (or so it seems).  This last week we were the victim of their latest ridiculous tirade and the story is worth relating, if only to help illustrate the challenges many parents of special needs face.

On Friday the nursing supervisors showed up at our home for her monthly “re-certification.”  From the beginning she had a chip on her shoulder and seemed determined to find something that would allow her to criticize us and assert her own power.  She found it quickly in the new ventilator that appeared by Lucas’s bedside.  You see, about three weeks ago the respiratory therapist from the medical supply company called us up and said that Lucas’s vent needed to be serviced, and that he’d come by with a replacement vent.  The LTV 1150 looks and works nearly the same as the LTV 950, and so it only took about 30 seconds for him to show us the one slight variation.  All the settings and displays were the same, and he hung out for an hour in our home to make sure it was working for Lucas before moving on.  We subsequently showed Victor and Florence, our home nurses, the one slight variation and everything went back to normal.  Until Friday.

The nursing supervisor was outraged that we hadn’t reported the vent change or gotten orders from the pulmonologist.  We explained that it was basically the same vent but she was determined to make everyone involved feel horrible.  And she wasn’t finished.  She observed Florence feeding Lucas one of our homemade blended formulas and really flipped her lid.  She demanded orders for the food, to which we responded that we hadn’t received them from the GI doctor, though we had agreed on a feeding plan weeks before after much haggling.  She called the GI specialist and exclaimed “they’re giving him some green concoction!”  Krista’s mom was on hand for the festivities and later observed, “she’s not very nice, is she?”  Krista, meanwhile, remained admirably calm throughout, and ultimately agreed to get the orders.  Ultimately, the supervisor effectively sent Florence home in the middle of her shift.  (Also, since it was Friday afternoon, we weren’t able to get the orders until Monday and therefore had to cancel Florence’s Sunday evening shift as well.)

The story continues with a series of phone calls on Monday and Tuesday, getting proper orders submitted and re-submitted, talking to different doctors, the respiratory therapist, Lucas’s case manager at Health Services for Children with Special Needs, etc.  Around midday Tuesday the nursing supervisor demanded that Victor, who had the next shift on Tuesday night, come into to the office immediately to get “trained” on the new vent (that’s the exact same as the old vent and which he’s been using for the last 2 weeks) as well as for “education” – ie disciplining – from the company.  This was the last straw.  Victor does a 12-hour overnight shift so being forced to drive an hour each way into the office in the middle of the day would mean that he’d show up to our home exhausted, without heaving slept.  Plus, even worse than the way we’ve been treated in all this is the treatment of the nurses.  So Krista called back ready to threaten us leaving the company (a somewhat complicated proposition or else we would have done it long ago).  Despite a lot of bluster, the supervisor ultimately conceded and said that Victor could come last night.  A small victory in a long, ongoing battle.

There are reasons that these companies have such strict practices, but everyone we’ve talked to agrees that our home nursing company crosses the line repeatedly.  But we’ve also heard that others out there aren’t much better.  And we like Victor and Florence a lot and don’t want to lose them.  There is a way they could switch to another company with us, and we’ll continue to pursue that possibility.    For now we just need to take a deep breath.

Each time something like this happens we’re struck by how poorly this system is set up to serve the needs of people with disabilities.  We’re also reminded how lucky we are to have each other, to have a supportive network of family and friends, and to have a level of financial stability that leaves us with options even if we’re cut off by the nursing company, or nearly lose our secondary health insurance (which happened a month ago).  This episode has been a pain and headache, but ultimately we’re relishing our small victory, having gotten what we want within just a few days.  We’re also aware that – as we wrote last year during our initial battle with the medical industrial complex around Lucas’s discharge – we are exercising privileges (of race and class, having the time, the know-how, the stamina, and the relationships with doctors) that not everyone brings to these fights.   And even still, Lucas gets screwed sometimes by this messed up health care system!  But we’re trying to figure out ways to make sure our battles are not just for Lucas’s sake but ultimately benefit as many kids and people with disabilities as possible.

Speaking of which… we’re excited about the momentum building toward the “My Baby Rides the Short Bus” event on December 4.

On Monday Burke returned from his retreat in California.  It was a great homecoming with Lucas – the little guy was all smiles when Burke came in and they spent a lot of time reconnecting, with Lucas touching Burke’s beard to make sure it was really him.  Krista’s mom arrived later that day and has been here all week, reading, playing, and taking beautiful fall walks with Lucas.

Lucas is feeling lots better this week, and the pinkness and puffiness around his eyes is almost totally gone.  Maybe because he feels so much better, or maybe because of his expanded audience, he’s been making lots of new facial expressions and sounds.  He’s getting louder and faster with the tongue clicks, and on Tuesday afternoon he developed a “kissy face”, with the bottom lip coming to his front teeth and his cheeks sucking in slightly.  He’s also brought back what we call “badger face” (sucking in his bottom lip), which he was doing slowly earlier this summer.  So badger face is back, but it’s not always slow and deliberate any more.  The video below shows better than we can describe the amazingness of the rapid-fire badger conversation he had with his Gramma.

And finally, just to really wow his audiences, Lucas has been experimenting with combining badger face and vocal sound, which comes shocking close to saying “ma-ma.”  Or sometimes “ma-ma-ma-nananananananaaa.”  Have we mentioned he’s brilliant lately?  We’ve been so wowed that our upstairs neighbors report they can hear us laughing and cheering for Lucas through the ceiling.

It’s not all about work and performance around here, though.  At the end of the day one of Lucas’s greatest skills is still the good ol’ fashioned snuggle.

Lucas’s eyes are still pink, but they’re looking better than yesterday.

It’s been cold here, so being bundled up in bed hasn’t been so bad.  Here are a few more shots of Lucas cuteness from the past few days.  Thanks so much to Nan for knitting him the sweater!  And to Florence for the hat.  And to Aunt Penny and Uncle Steve for the pajamas.   And to Aunt Ashley for most of the rest of his clothes!  :)

Burke’s gone to California for a conference this weekend, so it’s me (Krista, not Lucas) blogging alone today.

The news is that Lucas is a little bit sick.  Which caught us a off guard because he’s been incredibly healthy.  We’ve come so far in trusting Lucas’s immune system that we now grab the oral suction tubing off the floor and stick it right in his mouth.  But earlier this week he started sleeping more and his left eye got a little pink.  In consultation with Burke and Victor, I initially decided everything was fine.  Then Thursday night Lucas slept a record eleven and a half hours straight and woke up with his left eye even redder and swollen.

When I saw his puffy eye it was a good thing I wasn’t attached to any monitors.  For at least 30 seconds I was sure that in my negligence I had caused Lucas to turn permanently blind.  Fortunately I calmed myself slightly before calling the pediatrician’s office.  Actually, that’s a lie.  I dialed in a panic and it rang, but I hung up to pull myself together and then called again.  The receptionist was unmoved and just told me to bring him in.  So when Florence got here Lucas celebrated another big first: his first trip to the pediatrician’s (not the emergency room!) because he’s a little bit sick.

The doctor was pretty unconcerned when she saw Lucas and said it looks like a cold and maybe pink eye.  We came home with some antibacterial ointment and were told he’d be fine.  (Unless he gets a fever, in which case we are to go in to the ER.  Friends have offered to be on call if I need a hand driving Lucas anywhere before Burke gets back — thanks Denise and Heyward!)

And in true Lucas fashion, he’s in as good spirits as ever, despite the nasty runny nose and red eyes.  He slept almost 12 hours straight again last night, so it’s not over yet.  I kept rustling around him this morning, checking his diaper and adjusting his blankets and taking his temperature, but none of it woke him up.  Then, at 9 am I was sitting on the futon reading when Lucas started to wiggle.  He was looking toward me, although I’m not sure he even saw me through his puffy eyes.  But as he opened his eyes and looked out through the goop, he grinned.  Maybe at me, or maybe at the day.  In either case, I wish I could say that I am equally as fun to wake up next to when I’m sick.

Here’s a picture of Lucas a few minutes after waking up – still in a good mood.  He’s wearing his daddy’s old sweat shirt!  Lucas says “We miss you Daddy!  But we’re glad you’re doing the work you’re doing and we’ll be fine here, so don’t come rushing home early!”  Really.  He’s sitting here next to me saying “dadadadadadadaaaaaaaaaaaa.”

Although Lucas was forced to hang out with un-costumed adults for most of the weekend, he still managed to celebrate Halloween in style.  On Saturday he went to our friends’ Jess and Max’s pumpkin carving party in his dragon costume.  Although he got a little bit quiet around a crowd (maybe disappointed because he wasn’t allowed to carve his own pumpkin) he had a good time and got lots of attention.  He was a very cute dragon.  By Sunday, when we went to Alexandria to hang out with the Randolphs, Lucas was out of costume (he declared that he actually hated the dragon mask) but full of tricks.  Especially tongue clucking tricks.

So to mark the end of the month — the end of three months, actually — we have uploaded August through October photos.  Enjoy!

(PS – Lucas ate beets over the weekend!  And hence, the title of this post…)