Lucas Camilo

As some of you may know, we’ve been involved in a lawsuit against one of the biggest health insurance companies (Regence Blue Shield) since we moved to Seattle a few years back.  An amazing lawyer named Ele Hamburger brought the case against Regence (after winning settlements with the other two largest insurers in the state) over their denial of coverage for “neuro-developmental” therapies.  Though the case focused on Applied Behavior Analysis therapy (ABA), Lucas had the potential to be included because he has required speech, physical, and occupational therapy since early in his life due to his disability.  Therefore, we were asked if Lucas would be a named plaintiff in the lawsuit.  Always up for a good fight, Lucas said yes, and the case has been in the courts ever since.

Well, a few weeks ago Lucas and his fellow plaintiffs (other kids with developmental disabilities) won!  Or rather, the lawyers reached a very favorable settlement requiring Regence to pay $6 million to families who were denied the coverage.  More importantly, going forward thousands of kids with disabilities (primarily but not exclusively autism) will now be able to get the neuro-developmental therapies they need – fully covered by insurance – without any low, artificial limits on number of visits.  It’s shameful that Regence and other insurers denied or limited such coverage in the past, and awesome that Ele and her team forced them into the settlement. (The settlement still needs to be approved by the judges but it seems likely that it will be.)

It turned out to be  a double victory as the Washington state supreme court subsequently ruled that Regence was violating the Mental Health Parity Act by denying coverage to these kids.  As the article says:

“A unanimous state Supreme Court ruling last week provided mental-health advocates with a powerful tool to ensure equal insurance coverage for disorders of the brain and body.  In unequivocal language, the justices tossed out a blanket exclusion of coverage for childhood autism treatments imposed by Regence BlueShield, the state’s largest insurer.”

And that wasn’t all.  After the ruling, the state Insurance Commissioner then declared that all Washington state insurance companies (not just Regence) must notify policyholder that they have the right to review claims going back to 2006. Once claims have been re-evaluated, the insurance companies will be liable to pay for any coverage that was denied in violation of the act.

So even as we’ve continued to struggle with some issues related to Lucas’s school this week and the fact they still haven’t hired a 1-to-1 aide for him (a subject for a separate blog post), we’re feeling good about this victory and excited to share it with you all.  Already some friends who have a daughter with special needs have been in touch with the lawyer here in Seattle about help moving forward on a similar suit in another jurisdiction.

In the meantime, we celebrated last weekend by going shopping for Halloween costumes at Goodwill :)

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.

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.

It’s been a busy time for us lately and we haven’t had much time to update Lucas’s blog.  But the little-guy-who’s-not-so-little-anymore has been doing great, making tiny strides that to us seem huge, and wowing all those around him.  Krista’s mom is back in town for a visit and, having not been here for a few months, was excited to see Lucas’s latest tricks.  The finger wag that we mentioned before has become a hilarious addition to his repertoire, and you can now sing “If you’re happy and you know it” with Lucas in your lap and go on for a good 10 minutes: from “wag your finger” to “touch your tummy” to “make a kiss,” Lucas is right on cue with the motion needed to show that he’s happy, and if there’s any pause in the action then he’ll immediately start flipping his hand in the sign for “more.”  In fact, these days as you get close to the end of a book or a song, Lucas puts his hand in the air with his fingers extended and clenched together, poised to make the “more” sign the moment you stop doing whatever you’re doing.  It’s really cute.

Among those most impressed with Lucas’s recent developments are his therapists, and indeed they’ve played an important role in his progress, both in terms of increased movement and ability to interact.  It’s been a while since we’ve talked specifically about the therapists, and it’s worth mentioning them by name as we’d most certainly recommend them to other parents looking for physical, occupational, or speech & language therapy.  Erin has been with us the longest, having taken over Brown Bear Home Therapies from Evan last summer.  Erin is a physical therapist who now comes to our home twice a week, and she’s been working with Lucas to develop strength in his arms, legs, and core, as well as coordination in his movements.  She’s a real believer in Lucas and often chides him when he gets lazy and doesn’t push himself to do something that she knows that he can do.  By the end of a session with Erin he’s usually totally exhausted and ready for a nap, often pulling his arm over his face to indicate that he’s done, then adding a “bye bye” wave if Erin didn’t get the hint that he was ready for her to leave him alone.

More recent additions to Lucas’s team are Debbie (a speech/language therapist) and Erika (an occupational therapist) who together make up the home therapy company Eat, Speak, Play! It took a few sessions for Lucas to warm up to them – the first time they came he freaked out at the sight of big, new toys, and refused to wipe off the angry face for an entire hour – but he’s been really hitting his stride of late.  Debbie and Erika focus on communication, and working together they get Lucas into positions where he’s able to express himself – through signing, vocalization, and via the iPad.  Maybe they’re just being nice, but lately Debbie and Erika have been totally blown away by Lucas’s progress and they keep saying over and over again how smart he is.  We’re pretty amazed too; despite all of his physical limitations Lucas seems to be catching on to everything so fast and clearly understanding the world around him.

As we deepen our relationships with the therapists, we were all sad this morning to wave a collective goodbye and happy travels to Victor (Lucas’s nurse since December 2009) who is taking a month off to visit his native country of Sierre Leone.  April 27 is the 50th anniversary of independence in the African nation, and Victor is returning for the celebration, and spending the whole month there along with his fiance.  We’re excited for him, but Lucas will miss Victor’s high-5s and his loving adoration, while we’ll miss our collective morning rants about local news and debates on international politics.  In his place a new nurse named Sarah will start coming to our home next week – the first nurse other than Victor or Florence to spend significant time with Lucas in almost a year.

Though winter has returned to Washington DC for a few days, we’re looking forward to a good, restful weekend with Gramma Susan.  Yesterday Lucas and his Gramma snuggled up and took an afternoon nap together, and if it really snows on Sunday we’re guessing Lucas will demand “more” naps on Gramma’s lap.

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.