Lucas Camilo

Lucas had a couple big adventures over the past week that deserve recounting on the blog.  However, we’ve been busy and so rather than trying to write something descriptive we’ll just let pictures and video do the talking.

First, it was Lowell School Mariners game night on Sunday and we braved the crowds, parking lots and elevators to get Lucas and his wheelchair up to the 300 level of Safeco Field.  Did we mention it was bat night?

Lucas developed a love of baseball following a big M’s victory (despite only making it 5 1/2 innings) and now we’ve got a new living room activity that takes advantage of the recently acquired Louisville Slugger:

Next up on the big adventure list was Lucas’s first May Day march – not his first march, mind you… that harrowing adventure was recounted on this blog 2 years ago.  But May Day is a whole different story, especially when the cops are out in full force brandishing tear gas and pepper spray.  Luckily they waited for the black bloc march a few hours later to pull that racket out.   On a beautiful afternoon in Seattle we had fun  joining the immigrant rights march with friends from CISPES and the Social Justice Fund NW and chanting “Si Se Puede!”

Lucas got tired after waiting around for a while at the start and then rolling 10 blocks… but as soon as we returned home Lucas kept the chants alive on the back porch:

First off, we’re thinking about all of our friends on the East Coast who weathered Hurricane Sandy earlier this week.  The Washington DC area (from where we recently moved) went largely unscathed but New York City (where we lived before that) was of course devastated.  As the storm approached on Sunday we couldn’t help but think of families of kids with MTM, as well as other medically fragile people who rely on electricity for survival, in it’s path.  Fortunately, it appears that folks we know only lost power temporarily.  Still, with Seattle on a major fault line and extreme weather on the increase, the storm helped us conclude that it’s time to get a gas generator.

Lucas has had his ups and downs since we last wrote.  He got sick last week and had a few harrowing incidents at school that forced him skip out for two sick days (his first since school started in September.)  He actually bounced back pretty quick and was in such a good mood during the days that he played hooky that we almost questioned keeping him home.  But having multiple incidents where nurses had to do emergency trach changes because Lucas appeared to be having trouble breathing is something to take seriously.  Last Tuesday the bus driver actually had to pull over on the return trip so that Lucas’s nurse could suction repeatedly, change his trach, and eventually take him out of his chair and lay him on the floor of the bus.  She considered calling 911 but instead got Krista to drive over and pick them up.  By the time he got home Lucas was in a grand mood.  The same can not be said for his nurse.

Such incidents have become rare with Lucas, but what happened last week was a good reminder to all of us that he’s still very fragile.  We push him a lot harder these days, and pre-school can really take a toll on the little guy sometimes.  There are days when he falls asleep on the bus ride home, or looks totally out of it by the time he gets off the bus lift.  Meanwhile, he continues to struggle with his power chair, having small breakthroughs some days but more often either refusing to drive it or not getting very far when he does.

But those are the challenges, which help to set the stage for some recent triumphs.  First, we took Lucas to the Cat in the Hat play at the Children’s Theater on Saturday, and were joined by a bunch of friends and their kids.  Being one of Dr. Seuss’s biggest fans, Lucas of course loved the play.  For much of it he sat up chanting “the Cat in the Hat!!” and “What’s that Cat in the Hat doin’ now?” and afterwards as we rolled around the Seattle Center on a drizzly day, he grasped the glossy program like his life depended on it.  Then he had a melt down and we had to rush back to the van… but what was really special was doing an outing with friends and their typically developing kids (which is to say kids that don’t have disabilities) and have everyone enjoy themselves like it’s no big deal.

The next day was a special experience of a whole different sort.  We went to a Halloween themed birthday party in Bellevue in which more than half the kids had physical disabilities.  There were wheelchairs, walkers, standers, and other contraption rolling all around the big community center, and Lucas was not alone with his tracheostomy or suction machine.  The parents of Julie Grace – who’s birthday it was and who uses a wheelchair herself as well as eye-recognition software to communicate – had done a great job of figuring out some games that everyone could participate in, and Lucas especially enjoyed taking tuns throwing a blinking bouncing ball with another little boy.  We met some great parents who seem to be navigating the tough waters of special needs with determination and creativity, and exchanged notes on augmentative communication devices, special education challenges… and even got some insider information about new developments at the Woodland Park Zoo’s penguin exhibit.

Finally, yesterday was Halloween and Lucas had a blast.  School was out for the day but he wore his costume to music class in the afternoon and then was joined by Nonna and Papa for some trick or treat fun at our house.  We handed out candy for a couple hours and set up the couch near the front door so Lucas could check out all the cool costumes… and show off his own.  Some neighbors – goaded on by Nonna – even came over to sing “The Monster Mash” (newly arrived on Lucas’s top 10 list).  Though he didn’t get to join in the candy fun we also handed out stickers for kids who, like Lucas, found that to be more exciting than overindulging in sweets.

On Saturday “Reptile Man” came to our neighborhood community center and showed off his animals to nearly 100 awe-struck little kids (plus their parents).  We ran into neighbors who have a 2 1/2 year old, Mari, who also uses a wheelchair, so she and Lucas sat in the front row.  The whole production was right up Lucas’s alley — Reptile Man gave all sorts of fun facts about animals (ie: boa constrictors can’t actually swallow humans) and shared the kids general awe of snakes and lizards.  Each time he brought out a new animal to show the audience, Reptile Man made sure to hold them extra close up for Lucas and Mari.  It was very exciting, and Lucas today is still beaming when he says “you touched the snake!” (“you” meaning himself.)

A few months ago we tried to get Lucas interested in a large lizard that was on display at an outdoor festival, and Lucas absolutely freaked out at the suggestion that he touch it.  So it was nice to see him being so adventurous with Reptile Man.  He gave the tortoise lots of pats, touched an alligator and a small snake.  The only one he wouldn’t touch was the extra large viper snake, which wouldn’t stop flicking its tongue at him.

At school this past week Lucas started practicing driving on a new loaner power chair, and that seems to be going OK.  But it’s still physically hard for him to steer, and he gets frustrated when he wants to go forward but can’t.  We can’t help but wish for even better technology so this would be easier for him – a lighter chair, a more sensitive steering devise, the perfect head rest.  But it seems like maybe he’s got close to the best possible chair setup that exists now, so we’re hoping we can find the right hand position to make it work.  And ultimately learning to drive a power chair might just end up being more difficult for Lucas than we thought it would be.

The other big adventure last week was the addition of even more experts to Team Lucas, which meant a long, long morning at Children’s Hospital.  We started our day meeting a nurse practitioner in the neurosurgery department.  Neurosurgeons follow Lucas because of his hydrocephalus (extra fluid in his ventricles) which has been steady since his first days of life, but the fact that he has such large ventricles tends to worry doctors — especially doctors who have only gotten to know Lucas via his CT and MRI images.  The nurse came into the room ready to run through a battery of tests, but thankfully she spent some time getting to know Lucas (who was mostly chanting “more books!”), and determined that he was not showing clinical signs of excess pressure on his brain.  So for now we’re off the hook – she, like our docs in DC, was convinced he is doing well without brain surgery.  And of course we like doctors who subscribe to the “don’t fix it if it ain’t broken” philosophy, so we were happy about that new team member.

Next up was the new Physical Medicine doctor who we’d heard good things about, but Dr. Apkon proved to be even better than expected.  In medical hierarchy, physical medicine doctors oversee therapists — physical, occupational, speech, etc.  In DC the one we saw most of the time seemed to interpret her role as rubber stamping whatever our therapists were already doing.  Our visits often felt like a wasted trip because the most she interacted with Lucas was checking his ankle flexion.  (Which, needless to say, has not been our topmost priority.)

But our new doctor was really helpful in thinking through everything that helps Lucas be independent/interactive in the world: power chairs, wheelchairs, standers, bath chairs, etc.  She showed us pictures of presentations she’s give to SMA families (a muscle disease that has some similarities to MTM), describing new contraptions that might enable Lucas to move his arms more.   She also talked us through the physiology of a growing kid’s body that does not bear weight, about things we can do now to help Lucas in the long run (turns out ankle flexion will be important…)  The development of our bodies is built on the assumption that we are upright and our bones are weight-bearing, so we talked about the fact that Lucas’s bones will likely never calcify like other kids, making him prone to fractures.  She also described the anatomy of a developing hip socket, and told us about better positioning to help Lucas’s hip socket develop, minimizing the risk of the bone popping out of the joint.  And of course, like all our favorite doctors, she actually spent time talking to Lucas — about books, stickers and all the other important things doctors should talk to their toddler patients about.

Our last MD visit of the day was with our neurologist.  Lucas was exhausted and ready, as he said over and over, to GET IN THE VAN AND GO HOME.  Lucas can be quite clear about being done, so he turned that final appointment into a quick affair.  In a few minutes we decided to go up to a full dose of the medicine Lucas is taking experimentally for muscle tone to see if it helps.

On our way out our very favorite nurse at Children’s stopped by to say hi.  She coaches the US Paralympic swim team, so gave us a brief report while checking in with Lucas about penguins.  And then in the hall on the way to get our flu shots we ran into both of Lucas’s respiratory therapists, and they were both excited to see Lucas so we couldn’t just rush off.  (These are the times I’m sure Lucas wishes he had a power chair — so he could just keep rolling towards the door.)

And then we were in the van, and Lucas was asleep before we were even half way through Mister Rabbit.  And grateful for the great team of docs we’re getting to know here.

Can’t resist posting this picture.

Lucas was a bit grumpy all weekend long, but this afternoon he was back in great spirits.  The sun was out so we went to our favorite spot at the lake.  And after Mommy and Daddy took quick dips in the chilly water, Lucas agreed to get in too.  At first it was just going to be a quick dunk of the toes, but then he loved it.  Lucas got so silly he had us both near tears.

There was red playdough, clothes-in-cubbies, nervous parents, circle time, bubbles, the ABCs, introductions, teachers chasing run away kids down the hall, and lots more first-day-of-school mayhem.  And Lucas seemed to soak it all in.  He was cool through the parts he didn’t like (bubbles) and thrilled when the ukelele came out.  And right as the school morning ended – a full hour and a half earlier than his usual nap time – Lucas crashed.  If it all goes as well as today, or even nearly as well, this school thing should work out just fine.

Here are a few pictures from the day.  Pay no attention to the start date on the reader board — we were not two weeks late to school!

Lucas leaving the house with his little red book (Chicken Soup with Rice).

The arrival.

Daddy saying goodbye

Lucas may or may not have been happy to have his parents eager to pose with him.

Playing with blocks, with help from nurse Lauren.

Monday is Lucas’s first day of pre-school.  Needless to say, we’re both excited and quite nervous.  As the day gets closer we can’t help but think about what it really means that he’s starting school.

As you can probably tell from our last few posts, things have been going really well lately for Lucas.  The number of excursions and new adventures we’ve had in the last 2 months is remarkable, especially for a kid that not long ago said “no!” emphatically every time we suggested leaving the house.  We’ve felt extremely fortunate for the beautiful weather in Seattle and some extra flexibility in our schedules over the summer… but that would have meant very little for us if Lucas’s health, endurance or attitude didn’t permit us to actually leave the house very often.

But the fact that Lucas is enjoying going out is important for another reason: it makes us feel like school might really be a good thing for him.  Between his weekly music class and a camp at the nearby Children’s Playgarden, Lucas has already been in some school like situations and he’s done pretty well.   It’s still hard sometimes to imagine him interacting well with other 3 and 4 year-olds, who have a tendency to operate in a gear that’s too fast for Lucas.  One of the things we’re very nervous about is getting Lucas in positions that allow him to be communicative and interactive.  For a kid with extremely low muscle tone this is a huge challenge, but getting outside in a variety of situations is great practice for school.

Of course, there’s one big difference: on our recent outings both of us are there accompanying Lucas, and we’re experts at knowing when he’s upset because of a breathing issue, or bad positioning, or just because he’s being an impatient 3 year-old and we failed to chose the right book.  And here’s the kicker: when he gets settled into school, we won’t be there.

Yes, it’s true – parents can’t actually spend every day of school with their children!  We’ve joked that Burke will be tucked in the corner of the classroom with his laptop blogging and live-tweeting Lucas’s first day of school.  Or that Krista will be planted in a tree a block away with binoculars, prepared to intervene should someone forget to put the little oval-shaped pillow under Lucas’s neck when he’s sitting up.  In fact, Lucas’s teacher at Lowell made a home visit last week and assured us that one or both of us could in fact be there during his first day of school.  But what about the 2nd day?!?

Lots of parents go through separation anxiety when their first child heads off to school, and yet for Lucas there are so many more levels of challenges.  A couple years ago, we didn’t even know if Lucas would ever be able to go to school.  We had no idea if his immune system could handle the germs, if he’d have the physical stamina to be out of bed for half a day, if he’d have the cognitive and social skills to enjoy school, or even if he’d make it this far.  And now, here we are.  All signs point to him being ready, but there is still the fact that Lucas has so many very specific medical and physical needs.  Of course there will be a nurse accompanying Lucas – two different ones who already know Lucas and will alternate days.  They’re good and we trust them, but whereas they’ve spent 8 to 12 hours a week with Lucas for the past 6 months, we’ve spent just about every minute with him (collectively) since he was born.  When it comes to a slight change in head positioning that will make all the difference in his enjoyment, we’re not sure they can read the slight fogging over in his eyes as quickly as we can.

And we just have to accept that Lucas’s nurses may not know as fast as we do whether Lucas is turning grey because of a a medical emergency or because he’s throwing a small tantrum.  It’s a crazy thing to accept, but if we want Lucas to experience the world beyond the two of us then we have to.  Of course we’ve already been trusting nurses with medical/childcare tasks every time we leave Lucas home alone with them.  But our house feels like such a controlled environment compared to the chaos of a preschool classroom, not to mention a school bus ride.  The first time we leave Lucas at school will be the first time Lucas has been away from home without at least one of us.

So tomorrow morning the adventure begins!   We’ll pack Lucas off to school with his cutest first-day-of-school outfit, new backpack, wheelchair, vent, suction machine, back-up suction machine, nurse, and a change of clothes to keep in his cubby.  If you’re on twitter check out #lucasfirstday (just kidding).

Last Friday – August 17 – was Lucas’s 3rd birthday.

Whereas last year we had a big party in his honor this time around we kept it low key.  Lucas woke up a little grumpy on his birthday and didn’t seem too excited about anyone singing him “happy birthday.”  But by the afternoon he was in a good mood and the three of us spent a great couple hours sitting by the lake, recalling some of the early days of being a family together and mostly feeling glad to be alive.  We found it hard to articulate something as momentous as 3 years of life – especially for a kid who barelymade it to his third day of life – and so we didn’t bother trying much.  Instead we convinced Lucas to sit down in the water with Burke and get splashed by incoming waves.  It was 90 degrees, after all, a rarity for Seattle, and despite initial reservations Lucas ended up loving the dip.

On Saturday we had an actual party for Lucas.  It was a family affair, with Krista’s mom coming up from Portland and Burke’s parents, sister, brother-in-law and 3 nieces joining us at the park for a picnic.  Lucas indulged his recently amplified Sesame Street obsession by playing with Bert, Ernie and Cookie Monster figurines (not to mention “Grande Parajo”, his name for Big Bird in Spanish.)  Burke made balloon animals for all the kids, and we took turns reading books with Lucas and testing out new flash cards.  Then we pulled out the blanket swing, one of Lucas’s favorite pastimes, and Lucas showed off how he can count to 24 in Spanish as two people throw him into the air with the blanket.  For the first time ever Lucas got to do a double-swing, with his cousins – first Tya and then Madden – joining him inside the blanket for the ride.  Then he watched as others enjoyed the swing and demanded “Daddy do it!”  Sadly, Papa and uncle Brandon were not up for the job of swinging Burke in the blanket.

The reason we went to this particular park in Columbia City was that the Lorax movie was set to play at sundown.  Of course, by the time 8:30 rolled around Lucas and his cousins were too beat to stay up for the movie.  But the cool thing about doing it at the park ahead of the outdoor screening was that lots of other kids were around, and a group of them ended up jumping into our celebration.  Even though he didn’t get to see the “Worax”, Lucas was pretty pleased about the whole thing.  We think it was just about the best birthday party we could have had.

The next morning Krista was up bright and early to do a triathlon!  Lucas, Burke and Gramma made it to the finish line just in time to see Krista cross a good 20 minutes before she predicted.  Lucas was proud – “mommy did a race!” he said – and so were the rest of us.  All-in-all a good birthday weekend.

Lots has happened in the last week and a half and we’re excited to finally get a chance to report and reflect.

First, we must acknowledge the significant victory of last week’s ruling by the Supreme Court to uphold most of the major aspects of the Affordable Care Act.  When it passed we wrote that ACA didn’t go far enough – and we still believe that to be true.  But we also understand just how much Lucas and many others like him have already benefited from the changes brought on by health care reform, and how devastating it would have been to see these things reversed.  We’re talking about the fact that the ACA makes it illegal for insurance companies to deny coverage to children with pre-existing conditions (something that will eventually be extended to others), as well as the elimination of life-time insurance caps.   The law also benefits people with disabilities by expanding coverage for mental health and home/community-based services, and by expanding access to Medicaid.  Indeed, many people are sleeping better following the Supreme Court decision, even as we must continue the fight for deeper reform.

On the same day as the health care decision was announced we signed the paperwork on the purchase of a used wheelchair van for Lucas.  Needless to say, buying a mobility vehicle is very different than getting a normal car, if only for the fact that the factory conversion basically doubles the price of an average mini-van.  In the end, the process was much easier than we would have thought, in part because we found a really solid used van — via a special needs list-serve — that has only 41,000 miles on it.  These vehicles are very specialized and this one seems to have been made for Lucas.  It has an easy fold-out ramp (rather than the more cumbersome power-lift which he’ll likely need later in life) and self-retracting straps that cinch his wheelchair in place.  It wouldn’t work for an adult but it’s perfect for Lucas and we’re grateful to the family for selling it at a reasonable price and passing it on in good condition.  We also know other families who have spent months raising money and struggling to find financing to be able to purchase a mobility vehicle.  So we’re feeling extremely lucky to have been able to put a down-payment on the van and secure a low-interest loan from our credit union.  And best of all… Lucas loves it!  He can now face forward and see out the front, and we don’t have to maneuver him awkwardly into a undersized car seat every time we go out.  Big progress!

Just when we thought the week couldn’t get any more momentous suddenly we found ourselves packing up for the first ever Burke-Krista trip without Lucas.  Since he was born Lucas had never spent more than 8 hours of daylight without at least one of his parents at his side.  But in May we secured coverage for respite care, opening the way for us to take an out-of-town trip.  Four different nurses spent time with Lucas over the course of about 48 hours.  Burke’s parents also played a huge role, hanging out with Lucas, bringing Bruno to play fetch, reading countless books, countless times.  They also sent text messages and called to give frequent updates from the home front.  Perhaps surprisingly, we weren’t all that nervous, knowing that Lucas was in good hands… and that, not as surprisingly, Lucas didn’t seem to miss us that much.  According to one nurse, “I hate to say this but he didn’t mention you all day long and seemed completely content.”  Our feelings weren’t hurt in the least; to the contrary, we were extremely grateful for competent caregivers and tireless grandparents, confident that Lucas was in good hands the entire time we were gone.

Oh, and did we mention it was an amazing trip?  Three beautiful hikes in the North Cascades, returning to our northwest roots of spectacular mountains, rivers and waterfalls (check out a few pictures here.)  Our recent good fortunes landed us in a cozy little cabin on the banks of the Skykomish river in the town of Index — courtesy of our generous neighbors Barbara and Sara.  Thanks to everyone for making it possible!

Finally, upon return we linked up with our old friends Daniella and Gabe, along with their son Rafi, who stayed in our basement until leaving to go back to Oakland yesterday.  Lucas and Rafi hadn’t seen each other for over a year, and their second meeting didn’t go quite as well as their first (check out this funny video of the boys in June 2010) as Rafi’s high energy was tough for a guarded Lucas to handle.  But this time they hit it off, as the photos below demonstrate.  From kisses to brushing their teeth together, Rafi and Lucas — despite being about as different as a couple 2-year olds could be — became friends over the four days they were together.  Daniella and Gabe were also amazing with Lucas, patiently figuring out which book he was asking for and reading them over and over again.  And to top it all off, a few friends joined us for a fun 4th of July barbecue on Wednesday.  What a week!!