brothers

brothers

Thursday, May 15, 2014

Healing and Building

Today, May 15 is International MPS Awareness Day.  

Literally, as you're reading this, families we have come to know are watching their children hover close to death in the last stages of these horrible diseases.  Other parents are watching their children lose the ability to walk, play and talk and without any effective treatments to stop their decline.  Still others are newly diagnosed and are struggling to come to terms with these devastating life changing diagnosises. 

We humbly ask you to honor Ethan and all of the innocents affected, both those still struggling and those who have lost their fight, by making a donation to the MPS Society in your country.  Donations to the US MPS Society can be made by following the link and clicking on the yellow "Donate" button. 


Your donation, in any amount you can spare, provides meaningful support for families and research for treatments and eventually cures.  New and effective treatments are in-development, your support can make a real difference.


After you donate, we would truly appreciate it if you could help spread awareness of these horrible diseases and how they affect lives by emailing a link to Ethan's blog to someone new. 


Sarah, Caleb, Ethan and I thank you from the bottom of our hearts.

-----------

Playgroup

Tuesday morning, Ethan and I hoped onto our bike and headed out to check out a 'community
playgroup' that meets at a local church every Tuesday.

It's been months and months and months since Ethan has played with kids his own age--really since before he left kindergarten in January. It's taken Ethan a long time to heal enough from the kindergarten trauma that he was willing and able to go out for something like this.

When we rode up to the church, Ethan was really excited to see a group of about 15 four and five year-olds playing in a fenced off playground at the side of the building. Not surprisingly, Ethan is sometimes shy around people he doesn't know. I was happy to see that he was excited about the kids on the playground. But I suspected that these kids were part of the church run daycare, and were not kids from our community playgroup. Sure enough, when I asked, the daycare teacher told us that the playgroup was in the building next door, in the gym. We parked the bike in between the playground and
the gym building. Ethan indicated that he really wanted to go play with the kids on the playground. But he was willing to go in the other building and see what we could find in the gym.

Unfortunately, once we got into the gym, we found that all five or six kids there were toddlers. Even though the group was open to kids up to age five, the oldest kid in there was, maybe, three years old.

Ethan knew these kids were too young for him to play with and he knew that there were a whole bunch of older kids outside having fun. At that point, there was no way this was going to turn out well.


Ethan led me outside and started to go over to the playground where the older kids were still playing. I stopped him and tried to explain to him that those kids weren't part of our group and we weren't allowed to go over and play with them, that we had to play in the gym. But there was no way that Ethan was going to be able to understand why he couldn't play with them.

I really wanted Ethan to get a chance to play with some kids. I tried to salvage it. I knew that it was a complete long-shot. But I went over to the fence and talked to one of the teachers there. I explained that Ethan was developmentally disabled and that it had been a long time since he'd played with other kids and he'd seen her kids playing and just really wanted to come play, and was there any way that she could let him come play with them for just a few minutes? Predictably and understandably, she said she couldn't let him,that we'd have to go clear it with the office.

Ethan was already starting to get upset and there was no way that he was going to hold it together long enough to walk inside with me and go ask permission at the office. I knelt down next to him and was continuing to try to explain to him that we weren't allowed to go in and play on that playground. But he'd already started losing it at that point.

(I've talked before about what it looks like when Ethan loses emotional control. He doesn't usually have the words to really talk about why he's upset. And, frankly, one of the first things that happens when he gets upset is that he loses the cognitive focus to be able communicate or rationally process information. When Ethan gets upset it's a very loud and physical response. The first thing that happens is that his glasses get pulled off and thrown. If he's near someone, he'll try to hit, slap or scratch them. If he's not near someone, he'll either go find someone to act out on, or he'll block an activity that someone is engaged in to get their attention. Meanwhile, he's usually yelling "NO!" at volumes ranging from loud to ear splitting. If he's really upset, he'll start knocking things over or throwing things around. If none of that works, he'll start stripping his clothes and diaper off.)

From the moment we walked into the gym, and I saw how young the other kids were, my heart started breaking. Ethan so deserves a chance to have fun and play with kids his own age. The whole time that he's starting to get mad I just wanted to pick him up and hug him and soothe him, but the physicality of his anger means that he won't let us do that for him.

At this point, there was no way to salvage anything. Ethan wasn't able to understand why he couldn't play in the first place, and he'd stopped rationally listening to me some time ago. My talking and trying to explain things was just giving him something to push back against and upsetting him more.  The only thing I could do was get Ethan out of there.

There was no way that Ethan was going to walk over to the bike.  And when he gets upset like this, the only way I can carry him is to throw him over my shoulder so that I can hang on to his legs and feet and so his hands are too far away to scratch my face. While Ethan was screaming "NO!" at the top of his lungs, I lifted him up and carried him over to the bike. Plopped him into his seat and fought him to keep his body still enough so I could get the five point seat belt on him. After a little while fighting him, I was able to get him buckled, and unlock the bike.

The only good thing at this point, if anyone could call it a good thing, is that Ethan often calms down some once he's buckled into his seat. Still, I pedaled away from there as quickly as I could, in the hope that I could remove the focus of Ethan's frustration and not upset the other kids.

As we rode away, I desperately wanted to try to find a way to let Ethan have some playtime with some other kids. The best option I could come up with was to take him over to North Clackamas Park, about 15 minutes ride from where we were. Going to the park was a real crap shoot, you can never be sure if there will be any other kids there, and if there are, whether or not the kids will be interested in playing, and if they'll be nice. It was a real long shot at that point because the time of day made it unlikely that
there would be anyone there.

By the time we got to the park, Ethan had settled down some, though he was rubbing his arms and picking at his skin in a way that told me he was still a little upset. There was one little girl there. She was maybe three or four and was playing with her mom. Ethan saw her, but playing with this one little girl wasn't what he had in mind. I said, "do you want to go play with the girl?"

Ethan looked at me and said, "No, Else."


My heart ripped a little bit more as I said, "Ethan, I don't have anything else, honey. The only other
'else' I have is home."

"No, Dad. Else."

We went back and forth like this a few more times, before I buckled Ethan back into his seat, rode the five minutes to home and slowly walked back into the house with him.

Aftermath

When we got home, Ethan recovered from his tantrum/meltdown pretty well. At least on the surface.

What we've found and what we've been learned from Ethan's behavior specialists is that a traumatic episode like this can stay with a person for a day or two before they start to return to an even keel. For Ethan, once he has a tantrum like this, we feel like he's on a shorter fuse for some period of time. It's
like he's got a raw nerve and it's still tender. It makes him more unpredictable and it's harder to head off additional tantrums for a while.

In this case, we saw the impact at bedtime that night.

Ethan's been having a hard time with bedtime routines since the fall. He doesn't want to cooperate and get his pajamas on and brush teeth. Part of it, we think, is that he doesn't want to admit that the day is over. And part of it is that he doesn't like to be handled with diaper changes and teeth brushing.

Generally, we're able to coerce him through the routine by turning things into a game. Heading to the bedrooms becomes a game of tag. Going to the bathroom to brush teeth becomes a race to see who can get there first. Diaper changes become a squirt gun game.

Sometimes though, especially when Ethan's nerves are already raw, trying to turn something into a playful game, just pushes Ethan farther than he can take. That was the case Tuesday. Our attempt to engage his attention and cooperation pushed him just the other way and we had to back up and approach him from a different direction.

Sooner than we expected, I think, Sarah was able to get him into our bed and settle him into sleep.


The Regulatory System

All of this probably has you scratching your head wondering what is going on? Why is Ethan having such a hard time? What's causing all of this?

We think the primary issue is Ethan's regulatory system. Sarah and I are just building our understanding of this and I don't understand it well enough to present a clear explanation, so the following is taken from http://teacher.scholastic.com/professional/bruceperry/self_regulation.htm:


"The brain is continually sensing and responding to the needs of the body. Specialized "thermostats" monitor our internal (for instance, levels of oxygen and sugar in the blood) and external worlds. When they sense something is wrong (that the body is "stressed"), they activate the brain's alarm systems. These stress-response systems then act to help the body get what it needs.

Much of this regulation takes place automatically-beyond our awareness. But as we mature, our brain requires that we actively participate in our own regulation. When the internal world needs food or water or the external world is overwhelming, or threatening, our body "tells" us. If we thirst, we seek water; when afraid, we prepare to fight or flee. In short, we "self-regulate." We act in response to the sensations and feelings that arise from our brain's alarm systems.


When these systems develop normally, we are able to deal with complex and challenging situations with age-appropriate solutions. By adulthood, these should be thoughtful and creative. When a child's capacity for self-regulation does not develop normally, he will be at risk for many problems-from persistent tantrums to impulsive behaviors to difficulty regulating sleep and diet.


What helps the stress-response systems develop in an optimal way is repetitive exposure to controllable "challenges." Every time a child is introduced to something new, a low-level alarm response is activated. But with repetition comes mastery, and what the brain once interpreted as a potential threat is now familiar and tolerable. It is not bad for the child to experience low levels of "anxiety" or distress when he is in a safe and responsive setting. Indeed, when the child gets a little hungry, there is no need to cry because he now knows that that feeling will go away soon ("We have snack time after free play"). Moderate, predictable stress in this responsive, controllable environment leads to resilience. Children become capable of tolerating significant distress. In turn, unpredictable or severe stress can lead to a hyper-reactive stress-response system and a host of problems."



The idea of a hyper-reactive stress-response system is a very good way of thinking about Ethan's reactiveness.

As Ethan's developmental behavior specialist was explaining this concept to us, she also shed a lot of light on Ethan's sleep problems. Since so many MPS kids suffer from problems sleeping, I'll include a little bit about this here in the hope that it helps other families with this issue. Ethan has always had a hard time getting to sleep and sleeping through the night. His sleep improved somewhat in the months after his first transplant only to deteriorate as he went through transplant 2. In the couple of years since then, his sleep improved again, but then it took a nose dive this fall as the continuing stress of school multiplied and affected other aspects of his regulatory system in addition to his stress-stimulus response.

Ethan's behaviorist explained that we could help augment Ethan's sleep regulation by letting him sleep with us. That our normal sleep conditioning and responsiveness would help calm Ethan's response in the short-term and help provide a model for long-term development. Indeed, having Ethan sleep with us has helped quite a bit. It's the area where we've seen the most improvement over the last few months. He's sleeping through the night more consistently. And when he does wake up during the night he's typically able to get back to sleep. This is a great contrast from what we were seeing. Not too long ago, he was regularly waking up at 3 or 4 o'clock in the morning a few times a week and not getting back
to sleep.


Putting it all together

Understanding how Ethan developed regulatory system problems is helpful, but there are multiple other issues affecting Ethan: a) some level of neurodevelopmental impairment from the GAG buildup (from the disease) and/or from the transplants, b) impaired verbal skills, limiting his ability to discuss his fears, c) very limited exposure to other kids and peer behavior models and d) being pushed into a kindergarten environment where he simply wasn't developmentally ready or able to adhere to the expected structures and stimuli. 

Leave off the kindergarten bit and read through the rest of that list again: significant stress response (even before kindergarten), neurodevelopmental impairment, limited verbal skills, and limited exposure to other kids and behavioral models. Is it any wonder that he had a hellacious experience in kindergarten? Is there any way that any kid could succeed in a new, more structured environment without significant, well-considered, multi-disciplinary supports? 



The Need for Early and Ongoing Developmental Behavioral Assessment/Support

Over the last few months, the thing that's been sticking with me the most is the fact that nobody had raised the need for neurodevelopmental and behavioral support at any point before this all blew up.

It's true that Ethan suffered more physical and emotional trauma going through a second transplant and experiencing it at an older age. It's true that his speech issues were more significant than most Hurler kids. But all of our kids experience similar traumas and similar medical impairments--even if they differ
in specific degrees.

The more I think about it, the stronger I believe that the vast majority of our MPS kids could benefit from having developmental behavior specialists on their team from an early age. I know I touched on this briefly in my last post. Many parents and practitioners who know MPS kids often talk about how resilient our kids are and how well they handle everything that's thrown at them. But I hear about MPS kids who are on ADHD meds (the same types of meds that Ethan is taking) and almost every MPS parent at some point talks about their kid's sleep issues. I just don't think it's sufficient for a neuropsychologist to do an annual evaluation, issue a report and leave it for parents and teachers and other non-specialists to try to interpret that in practice.

When Ethan was diagnosed, one of the fist things that we did was to get a copy of the American Academy of Pediatrics recommendations for Hurler Syndrome (thanks, Jodi). We've followed their recommendations religiously in both diagnosis/evaluations and rehab therapies. (Some will say that we stuck to them too closely, to Ethan's detriment, and they might be right.) The guidelines recommend more than 15 different types of regular evaluations for MPS I kids, this doesn't include recommendations for therapy evaluation and rehab. But the guidelines don't include any mention of developmental behavioral assessment or support aside from regular cognitive function and IQ tests. Honestly, I don't know how any kid can be expected to deal with the physical and developmental issues that come with MPS I, put up with all of the tests and poking and prodding and not have some need for a developmental and behavioral specialist to check in with them and at least take a look to see if they need some extra support.

Some Progress

Overall, Ethan's behavior has improved somewhat over the last few months. He is much less prone to major tantrums than he was in November, December and January, though they still occur at least once a week. When he does have a tantrum, it's less severe then it would have been back then.   But he still regularly struggles with daily routines, going out of the house, and activities where he's not in control. 

In fact, I had originally planned our playgroup outing two weeks earlier. That morning, however, Ethan had a 90 minute tantrum when he woke up because he didn't want to change his diaper, get dressed and brush teeth, our normal morning routine. By the time he settled down, it was too late, and I was too stressed to try to take him out.


The week after that, we'd just started Ethan on an anti-anxiety medication, Sertraline.  Unfortunately, that medication gave Ethan insomnia. Ethan woke up at 3a that morning. By 9a, he'd crashed and I wasn't going to try to wake him up to take him to a play group. (That night, he didn't sleep at all. Not one wink. Yeah, we took him off the Sertraline.)

Recently, we've started to see some real signs that the medication and a stable and calm environment are starting to help Ethan learn how to self-regulate his response to stress.


This weekend, for example, Ethan came into the kitchen and opened the refrigerator to get a cup of vanilla yogurt, one of his favorite snacks.  I told him that he couldn't have it because he'd already had a yogurt earlier in the day.  Instead of throwing a tantrum, Ethan sat down on the floor and cried for about 30 seconds.  Then he walked off to his room, closed the door and stayed in there, crying, for a couple of minutes.  Then he came out, and he was fine and ready to move on to something else.

You could have knocked me over with a feather.  It was such a completely normal, disappointed kid, age-appropriate response.  I can probably count on one hand the number of times that he's responded like that, and it's not something he's been able to do since he really started struggling with kindergarten.

Another example occurred just this morning.   Ethan woke up and came out into the living room.  For a long time, he didn't want to change his diaper, get dressed and brush his teeth--our standard morning routine.   He started to get a little agitated, so I just backed off and ignored him and let him do his thing.  He wandered around the house and sat in various rooms for about 45 minutes.  Then I heard him crying on the couch in the living room and calling "Mom.  Mom."  I went over and he let me hug and comfort him while he cried on my shoulder for a few minutes.    When Ethan is escalating he will not let anyone hug him to comfort him.  As a result, we haven't gotten many chances to hug him when he's upset over the last eight months or so.

It was very clear this morning that Ethan was struggling but that he was working through coming to terms with having to do something he didn't want to do, and the resulting stress.  The whole process took him about an hour.  Ethan had been scheduled to go to therapy this morning. Getting him to therapy on time would have required me to move him along this morning faster than he was prepared to go, and would absolutely sent have sent him over the edge.  But I contacted Sarah and his therapist and we all agreed that the best thing for him was to let him work through this in his own time.

From Healing to Building

We've still got quite a long way to go.  But if the last four months have been mostly about healing, maybe the next few months will be about building.  To me, building means giving Ethan more skills and understanding to handle stress.  It also means understanding and building the support structures that he will need in the near future.

Ethan's got two significant surgeries hanging over him within the next couple of years.  He was originally scheduled to have anterior/posterior spinal fusion and knee plates and pins done next month.  But everyone agreed that it made sense to push that back and give him some more time.  That surgery is now scheduled for mid-September.  Then sometime next year, he's due for the bi-lateral hip reconstruction that we've been putting off.

In preparation for the September spine surgery, Meg MacDonald, Ethan's developmental behaviorist nurse practitioner is working with the child life specialists at Seattle Children's hospital to help define and assemble the emotional and behavioral supports that Ethan will need when he's there for surgery.  In fact, Meg is driving up to Seattle tomorrow and we're going to meet her there so that we can meet the child life team and they can meet Ethan.  The next day, we'll see Meg again at Camp Korey.  Camp Korey, just outside of Seattle, is one of the Paul Newman Hole in the Wall Gang camps for special needs kids.  Even though Ethan is too young to participate in the camping program there, every year Seattle Children's organizes a one day MPS event with informational lectures for the parents and fun activities for the kids and their siblings.  

(I've never heard of a doctor driving four hours each way to help organize supports for a patient. But, then again, once or twice a year Meg also drives 16 hour r/t to work with patients who live in other parts of Oregon.  We feel really fortunate to have her on Ethan's team, like we really lucked out.)

The other thing that we're preparing for is Ethan's round of annual evaluations and the yearly evaluations for the post-transplant ERT study. 

Sarah and Ethan went out to Minneapolis in March for the six month study evaluations.  It was a short trip, there were only four or five appointments.  Unfortunately, though, the trip turned into a nightmare for both of them.  The schedule had been booked months ahead of time, really before Ethan started having such big problems.  The schedulers in Minnesota do a great job of of working with patient and doctors' schedules and bending time and space so that families can get the appointments they need without having to spend weeks and months in Minneapolis waiting for a doctor's schedule to open up. 

In Ethan's case, that was a big mistake.  The schedule called for Sarah and Ethan to fly in on Sunday, have a round of appointments on Monday and fly out on Tuesday.  It was an ambitious schedule for Ethan even at the best of times.  If we'd booked that schedule a month or two later, after Ethan started to have real problems, there's no way we would have thought that would work.

Sarah and Ethan were pretty much doomed when Ethan, unsettled from the trip woke up Monday morning at 4 am.  That was 4 am Minnesota time, which means 2 am west coast time. Ethan held it together reasonably well in the morning, and got through fasting because of morning lab work.  He had a hard time with getting needle poked for labs, but was able to recover enough to participate in the physical therapy evaluation--more or less.  Then he fell asleep in the car while they were driving across the river to the other campus for the afternoon appointments.    Sarah let him sleep in the car for a half hour or so, even though it meant pushing back their afternoon schedule.  Even then, when she did finally rouse him, Ethan was  in no fit state. You've heard of waking a sleeping bear?  That doesn't even begin to cut it.  As I understand it, Ethan's meltdown lasted the rest of the afternoon. 

That evening, Sarah and I talked on the phone, and we even considered postponing their departure for a day, just to give Ethan a day to decompress and rest on Tuesday.  Unfortunately, changing the airline tickets would have cost $1500, so that didn't happen.  A very frazzled Sarah and Ethan wandered back into Portland International about 60 hours after they left.

Oh boy, have we learned our lesson from that.

This next trip is in August, and it's a much more comprehensive series of examinations. We just got Ethan's schedule earlier this week.  It contains more than 17 distinct appointments and tests including sedated procedures and covering 7 different specialties. Normally, the schedulers would put together five or six days of 9-5 appointments.  For this trip, we've asked them to limit appointments to morning or afternoon, but not both.  With that limitation in place, Ethan's schedule is much more manageable.  In addition, we're flying in a day early to give Ethan some time to settle in after the trip.  It's as gentle a schedule as we can put together for him.  But that means that we're going to be there for a full two weeks. 

It's a given that Caleb would be coming with us. Caleb's really a great help with Ethan and just Caleb's presence helps Ethan feel safer.  Since we're going to be out there so long, Sarah is going to come with us, too.  She's planning to work half days, while Caleb, Ethan and I are at appointments, but for the rest of the day, we'll be able to go out and do fun things as a family. 

We're also trying to arrange a special collaboration with child life services while we're there.  

About Child Life Services (feel free to skip this part)

Hospital child life specialists provide support to help children understand what's happening to them in the hospital, help them feel less scared and, ideally, help them get a sense of participation and ownership in their care and health care decisions.  The University of Minnesota Children's Hospital has an excellent Child Life department.  They place child life specialists in each department and the specialists do an great job of proactively seeking out patients and families to see where they can help.   By contrast, the child life team at our current local hospital only works with you if your pediatrician submits a request when they make the referral.  And we only saw the child life specialists at OHSU a couple of times during the 30+ days we were inpatient for transplant #1 and we've never seen them offer there help when we were in the hospital for an outpatient visit.

I have to say, though, that child life for outpatients is very difficult. It's challenging for a specialist to show up and offer effective support to a kid that they've just met.  That's even more true when you consider that the kid is already somewhat unnerved about the fact that they're at the hospital in the first place and they're in a room containing all this weird, intimidating equipment.  Or, as in Ethan's case, they've had enough experiences in hospitals that have a good basis to think that something scary or unpleasant is going to happen to them. 

Resume reading.....

We've put in a request to have one child life specialist assigned to us for the entire visit, and to have that person check in with Ethan once a day as he rotates through various departments.    We're hoping that, if the same person works with him each day, over time they'll develop a better understanding of what his big fears are what helps him and what doesn't help him.   Then we'd like to spend some time debriefing that person at the end of the visit to get any additional impressions.  We'll then be able to take that information and those strategies and incorporate it at other facilities, such as at Seattle Children's when we're there for the spine surgery two weeks after we get back from Minnesota. 

None of this, the slower schedule, partnering with child life, or any of the other supports we may put together for Ethan will make any of what he's going to go through pleasant or fun.  I just hope we can help him feel less afraid and more supported and loved. 



Overall Health and Cognitive Development

Aside from the trauma and behavior concerns, Ethan's day to day health is good and stable.   He came through cold and flu season with nary a cough.  We didn't see any of the eczema or scalp issues we've seen in previous winters.

Looking at the post transplant-ERT study.  As of the six month mark, we haven't seen any change in his chimerisms (the % of donor engraftment from his bone marrow transplant) and he hadn't developed any anti-bodies in response to the weekly infusion of synthetic enzyme. 

Cognitively, we've seen strong and steady improvement.  Before I go further, I have to say that we don't know if any of the cognitive development is the result of ERT.  Conventional wisdom has held that enzyme received by IV does not cross the blood-brain barrier (BBB), so shouldn't improve cognitive function or removal of GAG storage material from the brain.  However, we have seen a couple of studies that suggest that some enzyme may cross the BBB when it exists in the blood stream at higher than normal dose.  Sarah and I think that some enzyme additional enzyme is getting into his brain and supplementing what is being produced there as a result of the transplant. But that is just our layperson's opinion and isn't worth the paper this is printed on. 

What we can say that Ethan's vocabulary is increasing weekly.  It is still very limited.  If I had to guess, I'd say he's got the functional vocabulary of a 33-40 month old, give or take.   But he's learning steadily and it's the fastest pace we've seen yet.

What's really blowing me away is the improvement in his problem solving skills.  And I'm chagrined to say how that's come about.   Ethan's been watching Caleb play his video games and watching Caleb solve the puzzles in the game play.  Then Sarah and I have been watching Ethan, and play those same games and apply those game tools to solve novel sequence and order of event problems within the games.  It's been absolutely fascinating to watch him solve puzzles in the game that I didn't think he was capable of approaching. Even better, we're seeing those problem solving skills come into play outside of the games. He's doing a better job of following multi-step sequences and processes.  It's been so great to see these changes and these skills develop. How much of it is due to the ERT, I don't know.

It's equally important to add that even with everything that Ethan's got going on, the weekly ERT does not seem to be a significant stressor.  Ethan knows what infusion days are.  He knows when we pull up to the hospital on the bike that part of the process is that he's going to get poked so that his port can be accessed for the IV. And he knows that it's going to hurt some when that happens.  Even knowing all of that, he's generally just fine being at the hospital.  He runs into the building and he and I play tag most of the way across the complex on our way over to the pediatric day treatment ward. 


It's not wholly without stress.  Ethan does't like getting poked and the nurses have to restrain him while it's happening. He's learning to handled that poke better and we're seeing improvements in how quickly he recovers after getting stuck. Another stressor is, just like at home, Ethan wants to follow his agenda and he doesn't want people telling him what to do, add to that a level of distrust for people he doesn't know and the fact that he doesn't like having to cart his IV pole around.  For Ethan, that means that he doesn't like wandering the halls and playing in the commons room and he typically stays in his room while he's hooked up, though he likes to run around before and after.

Overall, Sarah and I believe the potential benefit of ERT for Ethan significantly outweighs the level of stress it's adding to his life. Which, I suppose, is the most we can say about any of his treatments. 

Lightsaber battle between Ethan and his therapist, Paige.
If it looks like she's cringing a bit, she is.
Ethan plays hard. 




Best seat in the house. 

Caleb and the gold safe at the
Rice Museum. 

Our little band of pacifist mercenaries. 

Rockin' n rollin!

Ethan working with his fantastic hospital school teacher,
Nalani, while nurse Katie takes a blood pressure. 

Grocery shopping by bike. 

Jedi grocery shopper

Caleb and his faithful cat,
Fuzz Ball.