Lucas Camilo

Lucas says "I'm going to miss you!"

It’s exactly 2 weeks until we get on a plane from Washington DC to Seattle.  Things are falling into place in terms of plan-Lucas: we finally convinced the medical supply company to allow us to travel with his ventilator (whew!), have signed up with a new home nursing company in Seattle with a good chance that it will be covered by private insurance, and have set up a number of appointments for Lucas soon after our arrival.

All of a sudden last night we realized that we have very little time left for our life in Washington DC.  As we get the details of our travel and Seattle preparations worked out it’s hard to know how to spend that time.  Some days it feels like we’re just going about our regular routine… on others, there’s a desire to do everything and see everyone before the big day arrives.  We are heartened that our closest friends have organized a farewell party the weekend before we go so that we’ll have a chance to spend time with many good friends.

We moved to Washington DC in the summer of 2007, so in reality we haven’t even lived here 5 years.  And yet it feels much longer.  We have both been able to do a lot of meaningful work and through it we’ve connected with many wonderful people during our time here.  The 2 ½ years since Lucas’s birth feel especially significant because they mark our entry into parenthood.  Of course we had no idea what we were getting into back in 2009, and the journey we began when Lucas was born wouldn’t have been possible were it not for the amazing advice, support, and accompaniment of so many people.  Today we want to give a little tribute to some of those people – the professionals in Lucas’s life who we’ve come to depend on, and who have come to feel like part of our large, extended DC family.

As we have mentioned before on this blog, we came into being parents with a healthy skepticism about western medicine, planning on keeping our child away from the institution of healthcare as much as possible (starting with a planned home birth).  That didn’t quite work out, and as Lucas was spending his first 3 months of life in the hospital we came to realize we were going to need to rely on many different doctors and specialists… so we might as well find some good ones.  And we did.  Lucas had a fantastic neonatologist, Dr. Stone; a generous and very caring complex care doctor, Dr. Fratantoni; two big hearted neurologists, Dr. Leshner and Dr. Tesi-Rosha; an all round fantastic pulmonologist, Dr. Koumbourlis; and a great ENT doctor, Dr. Preciado.  Along the way all of these doctors made important contributions to our having better understanding of Lucas and his disease, and at times went beyond that, showing care and love for our son.  At a recent visit with Dr. Koumbourlis, for example, he suddenly stopped in the middle of our conversation, looked over at Lucas – who was discussing penguins with himself – and said with admiration, “I just realized that he has become a little boy!”  Indeed.

Lucas’s therapists have made a huge contribution to his progress in life as they have had even more opportunity to work with him over the past few years.  From his NICU therapist Cathy to his first in-home therapists Dan and Mindy, Lucas has benefited from the thoughtful experience of various physical, occupational, and speech & language therapists.  Recently Evan, Lucas’s second in-home PT, returned for a visit and was totally blown away by how far Lucas had come.  We are especially indebted to our current batch of wonderful therapists: Debbie and Erika, the ideal OT-speech team who have helped Lucas develop his communication skills in ways that some people never thought possible; and Erin, the most positive and determined physical therapist a little guy could have.

And then there are the nurses.  During Lucas’s difficult three-month stay in the NICU it was the support and knowledge of certain nurses that helped keep us sane.  We’ve been out of touch with a lot of them but we will never forget their care for Lucas during a crucial time.  Amy and Erica, his nurses at the Washington Hospital Center on the day he was born and for the first week of his life; many more at the Children’s NICU including Kelly, Charm, and Ann; and those that cared for Lucas during his visit to the PICU in early 2009 (and who kept us company as we slept on chairs in his room night after night during the biggest snowstorm in a decade).

But perhaps the biggest thanks go to Lucas’s favorite two home nurses, Victor and Florence.  We have struggled over the years with the home care company, and early on some of the nurses they sent were astonishingly ill prepared to take care of Lucas.  But in the end they gave us Victor and Florence, and for nearly two years they have been the people that Lucas has happily spent the most time with, apart from his parents.  In a practical sense they have allowed us both to be outside of the house at the same time, if only occasionally, while on certain nights giving us the piece of mind to sleep without blaring alarms waking us up.  But they’ve been so much more than that.  Victor has got Lucas’s morning routine down pat, providing him with the medical necessities 3-4 days a week (nebulizer, suction, food & medications, etc.) but also the things that make him happy (a “hot banana” to chew on, the right book at the right time, his penguins).  Florence has been more like a teacher than a nurse, working with Lucas on identifying colors, letters, numbers, and animals, as well as practicing sign language (having learned many words and phrases herself over the past year) and reading book after book.  To see Lucas’s face light up when she comes in – as he flashes a big “F” for Florence sign with his left hand – is to understand how important she’s been to him.

We’d love to say that this really isn’t goodbye for Lucas but the fact is that given his disease and very limited ability to fly he’s probably not coming back to DC anytime soon (though Florence and Victor have both promised trips to Seattle, and all others are welcome).  That feels very hard, but we also know that Lucas will build a whole new team in Seattle, while the contributions and love of those who have been part of Lucas’s care for the first part of his life will never be forgotten.

Preparations are being made for our departure from Washington DC in less than a month.  Krista is actually in Seattle this week working to get things going on that end – from home nursing for Lucas, to a setting up a few pieces of furniture and an internet connection in our new home, to figuring all of what needs to happen so that Lucas will get the medical coverage he needs when we arrive.

Moving across the country with a 2 year-old is always a challenging ordeal, but when that two 2 year-old has a severe neuromuscular disease and uses a ventilator it rather ups the ante.  For example, we heard earlier this week that the equipment company that we use in DC is refusing to let us take the ventilator on the cross-country trip.  As many of you know, Lucas can spend a few hours a day breathing on his own, but there’s no way we can travel in a plane without him having the extra air pressure support that the vent provides.  We’re confident that we’ll come up with a solution to this quandary, and we’re certainly glad that we gave ourselves time to make the move given that situations like this can arise.

The actual day of flying is going to be pretty nerve-wracking.  We’ve made lots of special arrangements already with the airline company to ensure that we have special doctors’ notes, can bring equipment and extra baggage on the flight (all of which needs to be pre-approved), can take Lucas’s Kid Kart (wheelchair) right up to the door of the plane, as well as have an extra person accompany us to the gate, etc.  But it’s still hard to imagine that actual day…

Getting set up for all the doctors, specialists, therapists, and nurses Lucas will need in Seattle, along with approval from the insurance company is another big challenge.  Krista is working away on that front this week, especially targeting the biggest challenge which is getting home nursing covered.  Since our primary insurance likely won’t cover it (at least on their own accord) we have to work through various state agencies, including the Medically Intensive Children’s Program.  We’ll spare you the gruesome details but we’re definitely getting to know the all-too complex support system for people with disabilities.

The great thing is that we’re lucky to have so much support from friends and family.  Various people in Seattle – especially Burke’s family – have jumped in to help Krista this week, and it seems like any time we send an email or make a call with questions for someone they get back to us with helpful advice.  There are two other families in the Seattle area with boys that have MTM (the same disease as Lucas) and they’ve been very helpful, along with various other parents of special needs kids that we’ve connected with over the past few years.

And Lucas?  He seems blissfully unaware that something big is about to happen.  He continues to enjoy his favorite books and games, wowing us with new feats everyday.  Just last week, for example, he learned to spell PENGUIN – with a little cajoling he’ll blurt out and sign all 7 letters.  His aptitude for memorization is truly remarkable sometimes, and he seems to genuinely enjoy the challenge of spelling words.  For now, at least, it just another memory game like his favorite game of guessing the animal cards.

We’ll keep you posted as we get closer to the big date.  Here’s a little video of Lucas reading one of his favorite books:

Lucas continues to develop obsessions (sometimes fleeting) with favorite books, songs, and animals, but lately with a new twist.  Whether enjoying the “penguin book” or “monkey song” or plastic “fishies,” he prefers to have his head in the middle.  Some of you may remember there was a time we’d put these pillow head supports by each of his ears to help him hold his head midline so he could lie in bed looking up, entranced by his mobiles.  But that phase ended eons ago.  For more than a year he’s mostly refused to have his head in the middle when he’s lying down, which he indicates by grunting indignantly and pulling frantically at any pillow or towel we use to prop up his head.

His physical therapists have worked at getting him to try to balance his head on his own (without props) and look straight up, and until November his record was about 25 seconds.  In those instances, they would hold something up in the air that he definitely wanted to see, but he just didn’t have the neck strength to pull it off for very long.

And then all of a sudden, he went from a few seconds to a few minutes.  By mid-December, Lucas could hold his head in the middle — and hold toys or books overhead with both hands — for 15 minutes.  And then 20.  And now we’ve stopped timing him, as he asks us to move his head from the side to the middle for him (he can’t lift it himself) dozens of times a day.

It’s an exciting step on many levels.  It’s nice that he likes to stay in a position where he can see more in the room or yard around him when he’s lying down.  It’s fun for him to use two hands to read books to himself (and hilarious for us to watch).  And perhaps most significantly, it’s great to be reminded that growth and change often happen in astounding quantum leaps.

The other night we couldn’t help but laugh as we lay in bed forever hoping Lucas would fall back asleep, the occasional chant of “middle, middle, middle!” punctuating our quiet bedroom.   Now, we should mention that we’re often sheepish when other parents ask us if Lucas sleeps well — as if the fact that he’s a good sleeper makes our lives so much easier than theirs.  But it’s true.  Lucas regularly sleeps through the night for 10-11 hours, and he usually takes a nearly 2 hour nap in the middle of the day.  Often he’ll wake up and moan or hum a little in the middle of the night, and sometimes he wakes up more than that and makes a few half-hearted attempts at convincing his Daddy to play with him at 3 am.

But on Thursday, Lucas was up nearly two hours in the middle of the night.  Wide Awake.  We didn’t have a nurse, so he was lying in the crib that’s about 6 feet from our bed.  And he was chanting loudly, “Light on!… star lamp on!… elephant song!… penguin book!… middle… MIDDLE!”  Usually when he wakes up at around 8 he points to the two lamps near his bed and tells us to turn each of them on.  Then he asks for one of his favorite songs or books.  And then he tells us he wants his head in the middle.  Needless to say, its even more charming when you’ve had a full night of sleep…

Speaking of major leaps – we have a plane ticket for our move to Seattle!  We’ll be flying on a non-stop flight March 13.  We’re thrilled, sad, scared and anxious as we go about the mundane business of figuring out how to get us and all our stuff to Seattle.  But come March 13 we will definitely needing all your thoughts, prayers and visualizations for a quick, easy cross-country flight.