Lucas Camilo

We’ve ranted about the challenge of getting good health care coverage for Lucas before, most recently a few weeks ago when Krista talked about the pains of moving as it relates to insurance – about fighting “an industry that has billions of dollars which it mobilizes to justifying denying necessary services.”  Back in 2009 at the NICU we wrote a rant about how exasperating it was to get Lucas out of the hospital.  And about two years ago we discussed the benefits of the Affordable Care Act as it related to Lucas and our life (even as we acknowledged that the legislation was insufficient to solve our country’s vast healthcare problems.)

Now it’s time for another such missive, given some recent developments with our post-Seattle move insurance situation.  It’s not always fun to write this stuff out but we really believe that these stories need to be told, that only through talking about the shortcomings in our system and directly confronting the insurance companies will things ever get better.

So…. as you know Lucas is a complex, medically fragile kid.  Because he has a tracheostomy and uses a ventilator it’s necessary for someone well-trained in suctioning, CPR, changing trach tubes, etc be with him at all times.  That means means one of us or a vent-certified nurse.  Lucas’s nursing coverage in Washington DC came through the Medicaid-funded Health Services for Children with Special Needs (HSCSN) which he qualified automatically for after spending the first 3 months of his life in a hospital.  Moving to Washington state we knew it would be difficult to get approved for a Medicaid waiver, and frankly we’d prefer that private insurance cover all of Lucas’s healthcare needs – especially knowing that Medicaid is getting cut and there are families out there that need the coverage a lot more than we do.

So even though CareFirst, our insurance company, has an exclusion for private duty nursing in their contract we decided to submit the nursing claims and fight it out.  That was back in February as we were preparing for the move.  They denied coverage for Lucas and we immediately appealed, insisting that there was medical necessity and referring to the clause in the contract in which nursing should be provided  in lieu of hospitalization.  We provided about a hundred pages of supplemental documents – doctors notes, previous legal precedents, etc.   We spent lots of time on the phone with case managers, doctors, social workers, and a lawyer, knowing all along that it was an uphill battle but one that we had to fight: as much out of principle as necessity since some of those same professionals assured us that Lucas would eventually get a Medicaid waiver and qualify for the Medically Intensive Child Program in Washington State.

On Monday we finally heard back from CareFirst that the denial had been upheld.  We can submit a second appeal to the DC government but we have to wait four months.  Attrition, that’s their strategy.  And it looks like this time they’ve beat us; it would cost a ton to pay out of pocket for nursing while we wait to submit another appeal, and we’re not ready for the Medicaid fall-back.

We’re fortunate to be working with an awesome lawyer here in Seattle who has a background in community organizing and is providing pro-bono support.   She foresaw that the denial would be upheld and recommended that we purchase a child-only insurance plan for Lucas (which is to say, a second insurance plan beyond the one we get through Burke’s work).  Part of the problem we’re dealing with is that the CareFirst insurance was issued in DC and therefore is subject to DC law.  Washington state has much more progressive statutes related to health insurance, which, combined with the Affordable Care Act, have led to successful appeals challenging Washington-based insurers.

So Lucas now has a second health insurance plan, this one through Regence BlueCross that we purchased on the open market – it has a moderate monthly premium but relatively high deductible and co-pays.  This plan officially doesn’t cover nursing either, but our lawyer has helped other families challenge Regence around this issue and won.  So she’s confident that we’ll overcome their nursing exclusion so that Lucas will finally have at least a few days of nursing a week covered by insurance.  This strategy of buying insurance for Lucas is only possible because of health care reform.  A few years ago, Lucas’s “pre-existing condition” (in quotes because it’s a phrase created by the insurance industry) would have meant we had no option but to hope the state would fill the gap.

In the last post we mentioned how great it is that Lucas is doing well because it leaves us energy for “other aspects of the transition.”  Well, here’s the blog post about some of those other things.

I’m tempted to just post here our forty plus pages of google doc notes that Burke and I created to track and communicate with each other everything related to the move.  Or share a link to the online database we created just to keep track of the professionals we need to talk to in Seattle about Lucas’s life.  There are the nurses, social workers, home care administrators, therapists, evaluators (Lucas is constantly being evaluated), respiratory therapists, new doctors, advocates, equipment repair people and more.  I’m not really complaining – when you need help, it’s good to have a long list of people who might be helpful.  But the reality is that I wish we didn’t have to deal with all these people.  There are days when it feels like we need nurses in our home to take care of Lucas just so we have the time to talk to other people about coordinating his care.

Probably the single most difficult meeting we’ve had was an appointment with a new pulmonologist when we had been here just three days.  She was young and overly ambitious, and she immediately wanted to make major changes to Lucas’s vent settings.  She went so far as to suggest we admit him to the hospital for a few days so she could “play with his settings and observe him.”  The act of holding ourselves to our seats and acting polite as we declined her totally ludicrous proposal took about all the energy we could muster.   Or really, more than I could muster.  I came home and got in bed and cried.  It felt like there’s just so much in flux right now – the idea that she’d be willing to risk Lucas’s short term health in order to better understand his vent settings felt like too much.  We both suddenly missed our doctors in DC who believed that if Lucas was doing as well as he possibly could be doing, why change anything?  And who trusted us.  And who noticed that we do most of his care-giving and deserve a little bit of credit for how well he’s doing.  Deserve at least a pat on the back for how well we’re all doing.

And for the past few weeks there really have been just so many new people to meet and equipment to learn.  We got a new pulse/oxygen monitor that burned Lucas’s toe and alarmed unnecessarily in the night.  There are all the people that come to evaluate Lucas – measuring and ranking and quantifying Lucas’s abilities and disabilities, a totally messed up process that is a necessary loophole to get things that are sometimes only marginally helpful.  For example, Lucas is going through many evaluation to get us Early Intervention services, which will provide therapies for him that our insurance would pay for anyway.  So mostly what we get out of the many hours of evaluations and phone calls and paperwork is another well-meaning social worker in our life.

The biggest time suck for us over the past few weeks has been the struggle to get insurance to pay for Lucas’s nursing.  It’s hard to know how much to get into here, because the saga is extremely long and complicated.  We’re fighting with our insurance, which is part of an industry that has billions of dollars which it mobilizes to justifying denying necessary services.  I used to naively think that “medically necessary” meant insurance had to pay for it.  Nope.  I’m sure many people reading this will laugh – anyone who’s had serious health issues knows that need has little (nothing?) to do with insurance actually covering something.

We’ve been fortunate to meet some incredible people in this fight – doctors and social workers and now a killer lawyer who are all going above and beyond for us in this fight.  The political moment – with the Supreme Court hearing arguments that it is un-American to try to fix this broken system – combined with the fact that we have to waste our time fighting this rather than hanging out with Lucas, feels like insult on top of injury.  Possibly the most painful part of this is knowing that we have so many resources, and that most families living with severe disabilities have to do this with far less money, time, and space than we have.

So of course we try to find ways to make our fight useful to more people than just Lucas.  We found out that in Seattle, the main home health supply company that provides ventilators to kids does not provide the small, travel lithium-ion battery that we have.  Here they give families what we call the “boat battery” – a gigantic battery that probably weighs 10-20 times more than the small one.   When they tried to hand us the boat battery, I yelled at the (quite shocked) nice home equipment ladies.  They told us they can’t get the lithium batteries, but that simply can’t be true, since most of the MTM kids we know have them.  Burke was out (we’re good at taking turns being the “reasonable” one when the other is too upset to talk), so I just snapped.  “Do you have any idea how much more mobile we became when we got the lithium battery?!  This is a mobility issue for all families!”  They said they’d see if they could find a way to get us a battery – maybe they’d look for a donated one for us.  I said no.  Not just for us.  Everyone with a vent needs this battery.  They need to figure out how to make it happen for everyone.

On top of the stress of all the meetings and appointments and evaluations is the fact that we’ve uprooted ourselves from our friends and community in DC.  I miss having an amazing number of friends who I knew I could call when we were tired who would come play with Lucas, starting with Sha just up the street.  Its not that we even called for the help all that often, but just knowing it was available turns out to have been a major source of comfort.  Last weekend, with Burke gone and the rain pouring down and all this mess of services to navigate, I longed to be back in DC close to our friends there.  And we weren’t even alone for 24 hours – Ashley brought Lucas’s cousins over in the evening and we got some company and a change of pace for a bit.

And of course there are still all the great things about being here.  New friends are already welcoming us in wonderful ways – dinner with Chris’s family, then dinner with CISPES friends, and then two other sets of friends have called to tell us they’re on their way over with food.  It’s also nice to have Burke’s parents close and stopping by to read Lucas his favorite books and join us for excursions to the zoo or aquarium.  So we’re doing great – still endlessly grateful for all our family and friends’ love and support.  But since there are the darker days when it’s just the three of us and our long lists of calls to make, emails to return, meetings to set up, and people we don’t want to need necessarily in our lives… we wanted to find a way to try to write about those moments, too.

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’s health has been great lately, so we were a little surprised on Friday when there was a pink tinge in his wet diaper. We called the doctor, but then it went away. We weren’t too worried about it (maybe Lucas was preempting our plan to cook him beets), but since we were in the pediatrician’s office Monday for Lucas’s monthly RSV vaccine shot, we asked if they could run a urinalysis. After much back and forth we convinced the nurse that we knew how to handle a urine sample, so let us take the cup and bag home and to gather the sample there rather than waiting hours at the doctors office for Lucas to pee.

Fast forward to yesterday morning. We kept the sample refrigerated overnight, then double-zip-lock-bagged the cup, threw in some ice, and took it downtown on our bikes as we had an appointment. When we were ready to part ways — Krista heading home to check on Lucas and his new nurse, Burke ready to run the sample over to the doctors — we remembered Krista had the sample in her bag. So, without thinking twice, we pulled over onto the busy sidewalk and Krista grabbed the sample out of her bag. The ice had melted, and we initially thought the sample had leaked. But when we were sure the green lid was screwed tight on the clear cup we opened the bags, pulled out the cup, and dumped the water out on the sidewalk. It was only as Burke resealed the bags and stuck the urine in his backpack that we noticed the semi-horrified bystanders. Is passing cups of urine between backpacks not standard protocol for all parents?

In other news…. we miss Victor!  (And, we continue to appreciate Florence!)  We don’t spend enough time on our blog talking about how great they are to Lucas, and at times we probably take them for granted.  But our experience with the nurse who was sent to fill in for Victor was a reminder of how lucky we are to have two nurses who are so good to Lucas.  The fill-in nurse was nice enough, but she had very little experience with trachs and didn’t seem all that interested in learning. So when we noticed her not responding multiple times when Lucas’s pulse-oxometer alarmed (meaning that he was having trouble breathing), we decided to end things. It’s feels horrible to tell the nursing agency that she should not return to our home, especially after a week of getting to know each other and trying to trust her with Lucas’s well-being. But ultimately, Lucas’s safety comes first, so it wasn’t a hard decision.

"If my nurse won't help me breathe I'll just do it myself"

As we’ve wrestled with clear criteria for Lucas’s nurses, we realize that we may be a bit picky, but considering Lucas is a medically fragile child, the fact is that leaving him with an untrained person could be life-threatening.  We’ve tried to indicate to the nursing company the type of qualities that are necessary to do a good job of taking care of Lucas – having experience with Lucas’s category of medical needs being at the top of the list – but it hasn’t done us much good.  Most of the nurses, aside from Victor and Florence, who’ve come to take care of Lucas over the last year and a half have been very much unprepared for the job.

Ultimately, don’t all kids deserve smart, loving, quick-thinking, adoring, encouraging, knowledgeable, well-trained, big-hearted caregivers?  And given that impressive list, how is it that the people in the child-caring profession – not just in-home nurses, but also teachers, aids, nannies, and daycare providers – are so underpaid?  Do we think kids should be warehoused, taken care of and educated by who ever will take the lowest salary?  The nurses who take care of Lucas don’t make very good wages, work insecure hours, and often times don’t get any benefits.  Maybe someone should remind their bosses that they’re taking care of a special needs child with a tracheostomy and a ventilator!

One of the big problems, of course, is that the nursing companies charge high rates – supposedly to pay for the overhead of liability insurance – and then pay the nurses less than half of what the insurance company gets billed.  In the end, it’s the health care system that’s broken… or better yet, our entire economic system.  We don’t mean to subject Lucas’s readers to rants like this but we can’t help but be a little frustrated by the situation itself and the social realities at it’s heart.  We want so much for Lucas’s caregivers to be treated with the respect they deserve – or get the training they need – and thus its hard to be reminded how much is out of our immediate control.

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.

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.

This morning Lucas had an appointment at the “equipment clinic” to get fitted for his new chest braces that are supposed to help him sit up straighter.  He didn’t love them, but we’re hoping that as we begin to experiment he’ll come to find the braces more helpful than restricting.

Usually we both go with Lucas to his appointments – in part because we both want to be there to learn and quiz doctors and specialists, and in part because Lucas needs someone sitting with him in the back seat at all times.  But this morning Lucas’s nurse Florence was here, so she and Burke took Lucas to the appointment while Krista stayed home to get other things done.

We haven’t written much here about Lucas’s nurses despite the fact that they are a pretty big part of his life.  Although we still wish we didn’t need nurses to help take care of Lucas, we are grateful to have found two great nurses to spend certain nights, mornings, and afternoons with Lucas.  And, since we’ve gotten to know them pretty well over the past six months, we thought we’d share a little about them on the blog.

Victor started working with Lucas in December, shortly after we came home from the NICU.  Victor grew up in Sierra Leone and came to the US in the 90s.  He originally studied agriculture, but about ten years ago he was in a major car accident.  Through his time in hospitals during the initial recovery and later going through more than a dozen surgeries, Victor says he – like anyone who’s spent a lot of time in a hospital – came to appreciate the job of a good nurse.  So he decided to change paths, go back to school, and he became one.

Victor spends four nights a week with Lucas, and for three of them he stays on until 11 am in the morning.  Often Lucas is still wide awake and happy to see Victor when he arrives at 11 pm, so they play together until Lucas falls asleep.  Luckily for Lucas, Victor is a skilled whistler, so it is not uncommon for us to fall asleep to the sound of Victor whistling and Lucas cooing back his approval.   In the mornings Victor helps us with Lucas’s routine and stays around long enough to do some exercises and play with Lucas.  Of course, Lucas’s morning routine includes our morning routine, so we often end up talking about the news on the radio or in the paper.  Victor swears that he’s not interested in politics, but he’s quick to rant with us – in his big, enthusiastic voice – about the DC mayor’s latest affront to the poor, or about BP oil executives, or about management mistreating workers.  Victor is engaged to be married and, although he doesn’t have a date set, he’s also been explaining to us the different wedding traditions in Sierra Leone and how he and his fiancé are adapting them to their lives in the U.S.  Since we have so much of our lives exposed to our nurses, it’s felt nice to have Victor share some of his stories with us.

Lucas’s other nurse is Florence.  She started working with Lucas in the spring when Burke went back to work full time.  Most of the nurses that do in-home care in Washington DC that we’ve met so far have been from west Africa, but Florence is from Uganda.  She has also been living in the DC area for over 15 years and has worked as a nurse for most of that time.  Florence has two young kids of her own, so besides her skills as a nurse she also has experience (and preferences) around raising kids.  Florence is with Lucas two afternoons a week and one night so it’s nice that most of our child-raising philosophies overlap.

For example, Florence is a big fan of our cloth diapers and our attempts at reducing waste – a concept that was a stretch for some of Lucas’s nurses back in the beginning.  During the day Florence plays with Lucas, taking him through his different sitting and reclined positions and the toys he can reach and play with in each position. Florence reads to Lucas regularly, which Lucas especially loves because Florence is good at positioning him so he can reach out and turn the pages, something that makes Lucas extremely happy.

The greatest thing about Florence and Victor is that they’ve both come to love Lucas, and we trust them not just technically but also to really care for Lucas when we’re not here.  For that we feel very fortunate.  But to be honest, it’s still sometimes incredibly challenging.  For example, sometimes we have different opinions about the frequency and technique of suctioning Lucas, or how often to change his trach.  But at least for now, those moments of tension are outnumbered by the pleasure and comfort we get from seeing Lucas enjoying his time with Victor and Florence.