Lucas Camilo

After his last trip to the hospital for an x-ray we let Lucas rest for eight days, not moving him anywhere except from bed to couch to bed.  And the down time seems to have paid off!  Last Friday we finally got him back up in his chair and went in to get another x-ray. The doctor was very pleased with the progress — he even showed Lucas the images, and the healing was visible and obvious. Just as significantly for us, Lucas showed no signs of pain the whole time which was a huge contrast to the previous trip to the hospital. So the doctor gave the go-ahead for a return to kindergarten, at least for partial days.

Over the weekend we took a couple short practice trips out of the house. Getting Lucas in and out of his chair is a two-person job now, and he has to slouch down a little to accommodate the big angle of the splint on his hip. But he doesn’t seem to mind (and we were thrilled to be out with him on these beautiful end-of-summer days!), so we went to the library on Saturday and the park on Sunday. We also dragged Lucas along to look at a home for sale in our neighborhood, and he approved because there were birds on the wall. We didn’t explain that the pictures don’t come with the house.

This morning he made his big return to kindergarten. The most heart-warming part was seeing how Lucas’s presence has grown in his absence.  On the first day of school none of the kids really talked to Lucas.  Today we got to school a little early and stood in the hallway waiting for classmates to come in to the building in the morning. When the doors opened, kids flooded in, saw Lucas, and started shouting “Mr. McCullough, Lucas is back!!” Lucas was pretty quiet and maybe a little overwhelmed, but it was amazing to see kids welcome him back into their class!

So much time on the couch that Lucas has taken up reading the NYT, at least when there’s an article about dinosaurs.

First off, we want to thank everyone for the outpouring of support following Lucas’s broken leg.  From the blog and Facebook comments to the physical cards that have been coming in the last 4 days, Lucas has been really enjoying all the attention. After his latest batch of correspondence arrived today Lucas announced that he had received “a zillion of cards!”

It’s especially important since having a broken leg is no fun.  Lucas probably won’t get out of the house much over the next few weeks… in fact, it’s looking like he’ll be mostly hanging out of the couch. For a kid who loves lying on the couch reading books and who is not that mobile anyway, its not the worst thing in the world.  But after less than a week, there’s a bit cabin fever (for all of us) setting in.

So what’s happened since we last posted? Lucas rested up on Labor Day and welcomed the arrival of our friends from DC, Alexis and Mackenzie.  The pain from his broken femur seemed to be decreasing, and having more company around definitely made recovery a little easier. By Wednesday morning we decided that Lucas was feeling well enough to make it to his first day of kindergarten!

Getting up in the wheelchair was a challenge that involved some tears, but Lucas was in pretty good spirits once he was up.  We decided that he’d only go for a couple hours since constant transfers to and from the wheelchair just weren’t going to be possible.  It was important to be there on the first day — Lucas could see the other kids in his class, and they could see him and hopefully remember that he’s part of their class in his absence. But for us it was a little anti-climactic because of the shortened day and the reality that Lucas’s first year of elementary school wasn’t going to kick off the way we had imagined.

On Thursday, Burke took Lucas into Children’s for some more x-rays of the leg (click on the picture to enlarge and see the area of the break).  It was a brutal journey, with lots of grimaces and tears every time Lucas got moved around.  The docs concluded that the splint had been placed a little low and therefore wasn’t giving his broken femur the stability it needed.  So they started to add to the splint and in the process began to wrap up Lucas’s midsection, diaper and all.  There was an awkward pause when Burke asked how we were going to change that diaper and subsequent ones; then they unwrapped him and pondered the situation for a while longer before coming up with a plan B.

The newly extended splint required quick adjustments to the wheelchair to fit Lucas in, and the whole experience made us realize that the best way to expedite recovery (and avoid the painful tears of anticipation) would be to avoid getting up in the chair for a while.  That afternoon we sent a note to Lucas’s teacher saying he would likely miss the first few weeks of school.

Once the decision was made, we hunkered down in the house with support from Lucas’s nurses, constant attention from our out-of-town guests, visits from Burke’s parents (not to mention a whirlwind stop through by Lucas’s cousins) and lots of books, stickers, cards and games.

Lucas doesn’t seem to be feeling much pain but he’s still having his ups and downs — at times he’s like his usual self, goofing around and acting as if nothing is wrong.  Then suddenly he seems frustrated and ansty, and its hard to figure out how to help him feel better.  We recognize that we’re in for a long ride in the coming weeks (months?) and we really appreciate all the support and encouragement from our friends and family.

Reading a card from the full staff at the Social Justice Fund NW, including a T-Rex drawn by Sunny who says “Lucas is RAWRsome!”

With Alexis and Mackenzie, enjoying new finger-puppet dinosaurs

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Instead of part 2 of late summer stories, we come with less exciting news: Lucas has a broken leg.

On Saturday, a nurse was transferring him, and he suddenly exploded in tears.  She laid him back down on the couch, and after a bit he was consoled.  Later she tried moving him again and the same thing happened.

When Krista and her mom got home (Burke was at his friend Spencer’s wedding in California), Lucas started crying inconsolably again.   Lucas doesn’t often cry and only throws the occasional tantrum.  He often bears pain – a brace that’s too tight or a toe that’s buckled and squeezed in his shoe – without telling us.  But this time he was clearly flinching, crying and making the most terrible pained expressions every time we got near his left, so we knew it was serious.

We took him into the ER and got there around 6:30 pm.  Even though they got us a bed quickly, things moved slowly in the hospital.  It took a long conversation with the resident for him to declare that Lucas needed an x-ray of his left leg.  By 10 pm we did the x-ray.  By 11 we finally heard back from the doctor and it was what we suspected: Lucas’s femur was fractured, likely in a small torque that happened during the transfer.

This is something we have know is a risk because of Lucas’s osteopenia (low calcification of bones due to not bearing weight), and indeed other kids with myotbular myopathy have broken bones in similar situations.  As his limbs get longer and heavier but his muscles remain extremely weak, the possibility of a leg getting trapped in a compromising position becomes more likely.  Knowing this doesn’t make it any easier for Lucas, though.

This doctor didn’t know what the orthopedic team would do — possibly surgery, major casting, or splints.  Although Burke was at a wedding reception, we spent a lot of time on the phone, including discussing what it would mean for Lucas to have a cast that secured his hip and knee joint– according to the nurse, such a cast would wrap around the waist, go down the leg and over the knee.  It was a terrifying proposal, since Lucas’s leg turns out while he lies down (in a sort of frog-leg position), but rotates in to sit in his wheelchair.  Which position would they build the cast in?  Would it make it impossible for him to get up in his chair, or impossible to sleep?  To our relief, they ended up choosing the splint option, which just connects his upper and lower legs.

Lucas has been an amazing sport through this whole ordeal.  He is very clear with us when he is in pain — every time we move him.  He had never said “oww” before this, but now if we make a movement in the direction of his left leg, he starts off with a preventative “owwwie, owwwie, owwwie!”  But if we’re not moving him or changing his diaper, he’s pretty content.  At about midnight in the hospital, after he’d had a dose and a half of oxycodone and his leg had been splinted, he got very cheery and started telling everyone what a good time he’d had getting an x-ray.  (Not true — it was extremely painful as they held his leg in different positions.  But paleantologists use x-rays to study fossils, so perhaps in hindsight the experience connected him to his beloved dinosaurs.)  He chirped about how much he liked watching Toy Story on the hospital TV (because there’s a T-Rex that tries to scare Woody!)  He was thrilled that a new, special van for medical transport was coming to pick us up and take us home.

On Sunday Gramma Susan did a lot of book reading, and she was able to help move Lucas in and out of bed, something that is now a two person job.  She left for Portland right as Burke got back to Seattle having gotten an early flight home from California.

Fortunately Lucas has a lot of things that he can do while lying down– like reading books, watching Winnie the Pooh movies, and doing puzzles on his iPad.  So we’re settling into a less mobile routine for a few days.  Or weeks.  School starts Wednesday, but given how much it hurts to move, Lucas may have to skip the first few days of kindergarten.

Lucas loves getting mail, so “get-well-soon” cards could help make this ordeal a little more bearable.  Our address is 2943 36th Ave S, Seattle, WA 98144.  Thanks in advance for the love and healing thoughts.

Today marks one-year since Lucas was rushed to the hospital and had to be resuscitated.  Last November 17th was a very scary day to say the least. (you can read a series of posts we wrote about the incident here.)

We are regularly filled with gratitude for all the people who surround us and help us raise Lucas.  Family and so many friends.  The online support of other families with disability.  Three preschool teachers, two bus drivers, and one music teacher.  Three dedicated home-care nurses.  Two amazing orthopedists.  Three occupational therapists, two speech therapists, and a physical therapist who does the work of seven. (And a partridge in a pear tree…)  But today we feel so deeply indebted to the firefighters and medics who responded to that 911 call on the afternoon of November 17, 2012.

So this morning we decided to take a trip to our our neighborhood fire station.  We had the amazing luck of finding that three of the four men on duty this morning were the same guys who came and helped Lucas a year ago.  Together with medics they cleared Lucas’s airway and restored circulation of oxygen, performed CPR, stabilized him enough to get him into an ambulance, and then kept his heart going when it threatened to stop on the way to the hospital.

It’s a bit beyond words to try to thank the people who helped save your child’s life.  But they definitely understood why we were there, and they seemed genuinely excited to meet Lucas again under such different circumstances.  Although Lucas had little patience with us talking about why we were going to the fire station, once we got there he was more outgoing than he usually is with strangers.  When we got out cameras, he even showed off some of his goofy “kangaroo smiles” for the firefighters.  But never one for heaps of emotions or chit-chat, he was done with the visit after about 20 minutes.  When we said goodbye and tried to find the words to say thank you, they said that our visit was the highlight of their day.  And that Lucas is invited back any time.

On Sunday we took Lucas to see some scruffy, fantastic vaudville-esque circus performers in Volunteer Park.  They held his attention for hours, and he was especially into the jugglers.

The next day he woke up with a little cold, but it didn’t seem like anything serious, so we stuck with his regular full schedule of speech therapy, walks, etc.

So we were surprised on Tuesday morning when Lucas woke up having trouble breathing, even after we’d gone through all our usual tricks (suctioning, patting his chest, moving him around, suctioning some more).  He started looking grey and was flaring his ribs as he sucked for air, so we pulled out the oxygen tanks we keep around for emergencies.  And when even that didn’t work, we packed up a pale Lucas and hurried in to the emergency room.The short story is that he has rhinovirus (the common cold).  There’s nothing to do except rest, hydrate, and use a machine called the “cough assist.”  It manually forces air in, then creates a vacuum so his lungs make a coughing action and bring the mucous up and out — an action that Lucas’ muscles aren’t strong enough to do on their own.

It didn’t take long in the ER to figure all that out, but the docs insisted on keeping him at the hospital for a night just in case things got worse.We felt bad (and the docs helped reinforce this) that we forgot to try using our cough assist machine at home.  But Lucas has never had anything like this before, so when we’ve used the machine in the past, it didn’t do much.  So it didn’t occur to us in a time of urgency to use a machine that’s never really worked for Lucas.  Turns out he just didn’t have the right kind of cold to make it useful before.

It’s pretty near amazing that Lucas has made it almost four years without this problem of a common cold with mucus deep in his lungs.  But that knowledge felt like little consolation as we tried to sleep in the ICU Tuesday night with nurses, residents, fellows, respiratory therapists, and the cleaning staff coming in just about every hour all night long.  Our nurse had assured us that they’d let him sleep — hate to see what they do to the kids who they aren’t “letting sleep.”
Lucas thought the hospital was pretty great.  He had a big screen TV, and lots of people coming in and out who he could chat with.  He especially hit it off with the respiratory therapists (RTs).  While we were out of the room he tried to convince one RT to read him his favorite book.  When we came back and explained what he was requesting, she sat down and read him all of Hiccup Hippo.

While Lucas is doing fine — home and in great spirits, though he’s still recovering — the two of us are worn out from the whole thing.  Tuesday morning was stressful, not just because it was hard to see Lucas in distress, but also because we’re used to being a smooth parent/medical-caregiver machine that can deal with whatever he needs.  But on Tuesday morning we read his signs differently.  And then going in to the hospital is generally awful because although we know what he needs or wants at least 97 per cent of the time, hospital procedures require us to either relinquish most of our power to care for him, or else stay extremely alert and able to argue and advocate for him at every single step of the way.  Each time we go in there are new doctors, so we have to go through some of the same arguments we’ve had before.  They notice the leak in his trach and want to put in a cuffed trach.  We explain that if they do that they take away his ability to talk, and besides, he does fine with the leak.  They say they could ventilate him better.  We say he’s been healthy and well ventilated for four years with a leak, and we like to hear his voice.  They think they know better than us.  We think we know better than them.  And so, while we’re on our last half-nerve, having started our morning at 5:30 am with Lucas in distress, we’re forced to either back down and let them do what they think is best (with the trach or a dozen other procedures) or stand our ground and try to appear reasonable, articulate, and informed so that we can convince the doctors to do what we are sure is best for Lucas.

It’s not all a stand-off, but it sometimes feels that way.  Especially when we’re not just negotiating with one doctor, but up to four or five at a time.  At one point we had an attending pulmonlogist, a pulm fellow, a pulm resident, and an attending ICU doctor all pretending to have a conversation with us about what was best for Lucas (in this case, whether or not he needed to be in the ICU), when it was clear that we were negotiating with people who were not going to change their position.  The negotiations ended already because we got concessions — they agreed we could discharge directly from the ICU (meaning a faster path to home) and that we could do most of his care in the ICU (though they pointed out that they didn’t really have say over many things that were just hospital procedure.)

Lucas came home Wednesday morning and of course we’re thrilled to have him home.  However, Friday morning we went back for a chest x-ray and our pulmonologist says things are looking worse than two days prior.  This is likely just the normal trajectory of the virus — getting worse before going away.  And today he’s in such good spirits, and with much less need for the cough assist, that we might just take him to a party this afternoon.

(Burke writing) Krista is off on a 80-mile bike ride today!  Lucas and I were there this morning to cheer on her and about 20 other people as they hit the road.  The ride is the annual “Solidarity Cyclers”, a fundraiser for the Seattle chapter of the Committee in Solidarity with the People of El Salvador (CISPES).  You can still sponsor Krista (or me for that matter as I’ll be joining for day 2) by giving through Paypal at the bottom of the registration page.  Note: Krista will have to explain about the eagle in the picture once she returns.

Lucas is napping now so I thought I’d take a few minutes to reflect on some of our recent adventures.  We’re off to a Mariners game later today so I’m going to let him take a long nap…

As Lucas has embarked on summer vacation we’ve had to be a little more creative about how we spend the days – its amazing how 3 1/2 hours a day, four days a week of school suddenly seems like a lot of time when you take it away.  Lucas still has nurses most weekdays so that helps both of us get our work done, and having someone around to take Lucas out if the other one of us is busy or out of town is also really nice (Krista just spent 4 days in Portland for a wedding and time with friends, for example, and I was grateful to have support from a nurse a few of the days).

Among the things we’ve done lately are trips to the lake (when the weather allows it), the zoo, the library for some Spanish-language readings, a birthday party, and a brilliant two-day excursion to a cabin in the woods near the town of Leavenworth.  The latter was a particular highlight for Lucas as he was able to cavort with dozens of hummingbirds, 3 dogs, 2 horses, 2 donkeys… and we even saw a bear!  Our friends Eli, Lili and Pax were amazing hosts and indeed it’s trips like this that make us very happy to be back in the Pacific Northwest.

The other day Krista and I were talking about how fortunate we feel to be getting out and doing so much with Lucas… and having fun while we’re at it.  Part of it is that we just want Lucas to be able to enjoy his life as it is now – his fascination with animals, books, flowers, fruit in the grocery store, or whatever his latest passion may be.  This is by no means a given.  For one thing, he’s been extraordinarily healthy while many of his medically fragile peers often struggle with frequent illnesses and hospitalizations.  And indeed every time we venture out there’s a certain level of risk involved.  Just yesterday driving home from the zoo we had to pull over and do an emergency trach change on the side of the road since Lucas was having trouble breathing.

There’s definitely some choice and determination that goes into in doing all these outings.  We could, for example, be focusing a lot more on learning to drive his power chair – something that remains a big challenge – or practicing communication with his Dynovox speech device.  But come on, its summer!  Lucas deserves to be out mucking it up with the best of them, even if his style, and methods, and the precautions we have to take, might be a little different.

Meanwhile, Lucas has had a number of appointments with specialists lately – all of which have gone fine – and at some point we’ll do an update on such matters… not to mention his power chair progress and other things he’s working on in therapy.  Speaking of chairs, below is a picture of Lucas enjoying a serene day at the lake in his new push chair, which has been an awesome boost to his mobility and stamina.  And some other recent shots as well…

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.