Family & Josh health update August 2014

This week, we arrived home after two months of driving across the country and back.  We had a GREAT time seeing everyone - Reno friends and family, Nebraska friends and family - and it was sad to say goodbye to our two homes away from home.  But it's nice to be back in our own house, it's nice not be living out of a suitcase, and it's nice to get into a daily routine that will last more than a week or two :).

I wanted to write an update on Joshua's  health, since we have some really good things to report and also a couple prayer requests.  First, the good things:

• Oral feeding is going well!  We had our ups and downs during the summer, as our routine was constantly changing and for some reason J seemed to get sick every 3 weeks or so.  But he ate well enough to maintain his weight through the summer, which is really exciting and a huge step towards us being able to take the g-button out.  He has also learned to take his daily medications by mouth (or to put it more accurately, i have learned how to grind them up and hide them in his yogurt).  So now we will see if he continues to eat well this fall, and hope to take the G-button out around Christmas.
• J's speech continues to improve.  Last summer, J struggled to put together 2 word sentences, which was considered to be a significant delay.  This summer, he regularly strings together 5+ word sentences and he's doing much more interactive and spontaneous talking.  He hasn't had his speech evaluated recently, but it seems like he's making great progress.  One great thing about the road trip was that he got lots of cousin time in both Reno and Lincoln, as well as lots of new experiences, and I think both of those things were helpful for his speech. 

Prayer requests:

• Upcoming surgery - J has surgery scheduled for this Friday to get ear tubes placed and to get some dental work done.  This should be a simple set of procedures and they are not admitting him, but surgery is always a little scary.  Also, this is the first time that he will be aware of what's going on as we take him in for surgery, so I would especially appreciate prayers for peace and calm for J as he goes back to the OR and as he recovers from anesthesia.  
• Genetics appointment - In mid-September, we're taking J in for a genetics consult.  This appointment is always nerve-wracking because they can deliver information that has life-long implications.  It will be interesting to see how that appointment goes because apparently East Coast geneticists and West Coast geneticists do things differently.  West Coast geneticists, which is the only type J has seen so far, diagnose based primarily on physical examination, family history, etc.  East Coast geneticists are (supposedly) much more likely to do blood and DNA testing.  [By the way, as a total sidebar, it is SHOCKING how differently *really important* medical procedures are handled based on where your child was born.  Since J was treated at University of Utah as an infant, he got a jaw distraction to help with his breathing.  If he would have been treated in Virginia, he would have been trached.  Most of his specialists doctors out here have never seen a PRS child that wasn't trached.  We are extremely glad that J was born in a place where jaw distraction was offered as a treatment option rather than going straight for the trach.  End sidebar.]  So it will be interesting to see if the East Coast geneticists want to do a bunch of testing since minimal blood testing was done out in Utah.  

Other than that, life is back to normal around here.  J starts school after Labor Day and we are going to attempt potty training before then, so wish me luck!

Reno Myths Debunked and Trip Update

Reno is a unique town, and i mean that in the literal sense of the word ("being the only one of its kind").  Thanks to shows like Reno 911 and pop culture references like Johnny Cash's line "I shot a man in Reno, just to watch him die", everyone has an idea of what Reno is like -- but many people haven't actually visited Reno.  So without further ado, here are some popular Reno myths, debunked:

#1:  Reno is just like Vegas, except smaller and seedier.  This summarizes most of the other myths, so I will break down why this is wrong in more detail below -- but Reno is WAY different than Vegas, and I think most everyone who lives in or is associated with Reno (including me) vastly prefers Reno over Vegas.

#2:  Reno and Vegas are geographically close to each other.  When I was in law school, the career counselor (who knew that we were considering Reno as a possible destination) kept sending me job listings in Las Vegas.  Reno is 452 miles - an 8 hour drive - from Las Vegas.  Commutes from Reno that would be much more doable than Vegas:  Lake Tahoe (48 minutes); Sacramento (2 hours); or San Francisco (3.5 hours).

#3:  Like Vegas, Reno's topography is all desert.  The first time I visited Reno, I was stunned by its beauty.  Reno is surrounded by the Sierra Nevada mountains and the Truckee River flows through the center of town. To the east of Reno is desert, but to the west is Lake Tahoe, and Reno draws geographic characteristics from both.  There are dusty mountain trails lined with sage brush, but there is also lots of green space and an alpine feel.

#4:  Like Vegas, Reno is unseasonably hot all the time.  Reno gets all 4 seasons, but the brutality of winter and the intensity of summer are subdued by the desert climate.  The temperatures get into the 100s in the heart of summer, but thanks to the desert climate, it cools down to 70 or below every single night.

#5:  Like Vegas, Reno culture is dominated by casinos.  While the casinos do play a part, local culture is also heavily influenced by:

• Reno's frontier history:  there is a heavy independent / libertarian sentiment here.  
• California influence:  California is less than an hour away, and you can see that influence in all sorts of things - the main example that comes to mind is, at the grocery store, the organic section is bigger than the meat section.
• Outdoorsy types:  If you are into outdoor sports, Reno is a wonderland.  In the summer, mountain biking, hiking, trail running, backpacking, kayaking, etc. are all easily available.  In the winter, the slopes of Lake Tahoe are less than an hour away.  This plays a significant part in what people do with their free time and expendable income.  

It would be dishonest to say that casinos have no effect on local culture.  They dominate downtown, they draw in tourists, and they boast some of the nicest restaurants and bars in town.  Because they advertise using scantily clad women, you see a lot more skin driving around Reno than other towns.  Although locals mostly avoid casinos, you can't avoid being around gambling - there are slot machines in every grocery store and gas station.  But when you live here, you get used to the casinos and slot machines really quickly, and soon you hardly notice them.

#6:  Prostitution is legal in Reno.  It's legal in other parts of Nevada, but not in Reno city limits.

#7:  All-you-can-eat sushi is a big thing in Reno.  This is true.  And it's glorious.  If I was a competitive eater, my food of choice would be sushi.

Thus concludes my Reno myth debunking, but Reno friends, please feel free to add to the list.
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For part two of the blog, here is a recap with the highlights of our Reno trip this summer.

-Family and friends time!  I am really blessed to have awesome in-laws.  (My mother-in-law Betty is pictured above reading a story to J.)  They are so kind, generous, and fun to be around.  And they allow (and even encourage!) us to crash with them for a month at a time.  This is no small thing when you've got two toddlers running around making noise and messes at all hours of the day.  I'm so grateful for them.  We also got to see lots of friends on this trip and attended some really fun get-togethers (including a children's tea party, pictured below, and a food truck rally).

- Wherever we are in our travels, we spend a lot of time at these places:  the park, the mall, the library, and the Children's Museum (or zoo / aquarium / local museum of choice).  Reno has a really nice children's museum complete with a model Truckee River, a star gazing room, a mining tunnel, an art room, and multiple block building rooms.  The kids loved it.

- Lake Tahoe - we made it up twice this month  First, we took the kids up for a beach day with their cousins and a good time was had by all.  (Joshua spent over an hour playing with a piece of drift wood, pretending it was a train.)  Second, Kenny and I had a really fun double date with Kenny's brother Jason and his wife Naomi to see As  You Like It at the Tahoe Shakespeare Festival.

- Dates with the hubs - this is the time of year when Kenny and I really get to spend one-on-one time together outside of the house, and it's so nice.

- Running on the Steamboat Ditch Trail - a couple times each week, I ran on this mountain trail near my mother-in-law's house.  It is so beautiful and peaceful and reminded me of Alamosa.

So now we are starting the journey back East.  In a couple days, we'll arrive in Nebraska, stay with my parents for 10 days, and then head home.  Hope to see some of you along the way!
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Overprotected Children Culture Gone too Far?

Earlier this week, Ross Douthat of the NYT wrote an article about how children are overprotected and more specifically, how this trend of overprotection has led to parents being unfairly punished for not hovering over their children.  This idea - that the culture of overprotecting children has gone too far, that parents who give their children independence are at risk of having their children taken away - seems to resonate with many.  I have three thoughts about all of this.

1.  I disagree that it's a bad thing to expect rigorous supervision of young children.  I still see plenty of older kids riding their bikes around the neighborhood alone, I see middle schoolers alone at the playground, and I see elementary age kids playing alone in their yard while the parent is in the house.  It is only the REALLY young kids - the preschool and youngest elementary kids - who are expected to be supervised by someone all the time.  And since I spend a lot of time with toddlers these days and have seen their total lack of judgment and impulse control, and how quickly they can put themselves in serious danger, I think it's totally appropriate to expect rigorous supervision of younger kids.  (Note:  I'm not saying that it's easy or that I do it perfectly or that it's not a major challenge for people without support.  I'm just saying that it seems like a reasonable expectation that young kids need to be actively supervised.)

2.  I disagree that kids are wrongly being thrown into the foster care system because of our overprotective culture.   I spent two years representing abused and neglected children in their foster care cases, and when it comes to removing kids from their home, it's very rarely the case that the kid gets removed without reasons that go far a one time incident of a child being left in a park.  (It is much more frequently true that once a kid has been in foster care for awhile and the parents have made their home safe, the system can be too slow in allowing the kid to return back home.)   The cases described in the article where the kids were left at a park, or wandered through a parking lot near home unsupervised, or were at home alone for a few hours and then ended up in the foster care system -- not once in my hundreds of cases did I see a situation like this, unless this lack of supervision was the pattern rather than a one time exception.  These events might cause someone to call CPS, and cause CPS to open an investigation -- but a court is unlikely to remove a kid from their home based on a one time incident of lack of supervision.  Kids get removed because they are left alone for days at a time, or because they are abandoned indefinitely with a friend or relative, or because the pattern of being left alone has caused some kind of harm to the child (like missing a bunch of school, or the child injured himself because of lack of supervision, or the child developed attachment disorder) - not because they are left at the park once for an hour.  I'm not saying that the child welfare system never makes a mistake, or that there aren't some outlier cases where something like this might happen.  But if you're providing a generally safe home and someone reports you to CPS because your 10 year old child was playing unsupervised in the park, in the vast majority of cases, nothing will happen - the case will just close.

3.  There should never be a case where a child gets removed from a loving home just because the parent is poor.  The real story here, which is mentioned briefly in the article, is how this "culture of overprotection" is especially hard on single parents who do not have child care and somehow still have to find a way to provide for their family.  These are the cases where kids do get removed from the home -- where parents do have to turn lack of supervision into a pattern, and where this lack of supervision (at least allegedly) causes harm to the child.  This seemed to be the case for at least half of the parents profiled, and these are the ones that really tug at the heart strings.  I absolutely 100% could-not-agree-more that struggling parents need more child care support as they take steps towards economic self sufficiency.  The lack of affordable child care is hugely problematic for single parents who must meet work requirements in order to receive welfare, food stamps, and housing benefits, or who are trying to attend school or a job interview so that they can provide for their family.  We should design public assistance programs so that parents aren't forced to make these tough decisions - for example, by ensuring that parents can always get the child care support they need or else be exempted from work requirements in public assistance programs.  And for all parents struggling to find child care as they attend job interviews, community college, etc., we need to have more affordable, flexible hours, conveniently located, high quality child care available.    To me, this seems like one of the absolute best things government subsidies or charitable funds could be supporting.

 What do you think about the article, or about the idea that kids are overprotected, or about anything else on this topic?

Road Trippin 2014

After three days of driving, a 10 day stop in Nebraska, and three more days of driving, we made it to Reno!  Here are some notes from the road and pictures* of the type of scenes we saw on our drive:

Smoky Mountains in Western Virginia*

-- It was fun to drive across the United States in the weeks leading up to the 4th of July, as it was a good reminder of what a geographically diverse, spectacularly beautiful country we live in.  My favorite parts of the drive this time were the Smoky Mountains and the Park City / Salt  Lake City area of Utah.

Stan Musial Veterans Memorial Bridge in St. Louis*

- - We've done the 1400 mile Nebraska-to-Virginia trip in 1 day and 2 days.  This time, we took 3 days, and we all preferred the slower pace.  This allowed us to make longer stops, explore the towns along the way, and make 3 park stops per day.  Which leads me to comment on a type of story that's been trending lately, first as a cover story in  The Atlantic  and more recently as an article in the New York Times:  the idea that playgrounds can be too safe and this is bad for older kids (they need danger, they need sensory experiences, they need exercise and won't use equipment designed for toddlers, etc.).  These reporters should visit the middle of the country to find their park utopia.  We consistently saw parks that would be great for older kids -- huge slides  and challenging climbing structures; old school equipment like merry-go-rounds; zip lines; etc.

Nebraska (aka The Good Life)*

-- We spent most of our time in Nebraska hanging out with family, which i loved.  There is just something about being in Nebraska that refreshes my soul and makes me feel like everything is right in the world.  That's laying it on a little thick, but seriously, I just love spending time in Nebraska.

Wendover, Nevada*

- - One of our hotel nights was spent in Wendover, Nevada (pictured above).  This town, wedged between the Salt Flats of Utah and the barren dessert of eastern Nevada, is so very in the middle of nowhere that it sort of feels like you're on the moon.  And then, unexpectedly, these bright lights appear on the horizon, and you see what appear to be three huge Vegas style casinos in this tiny little town out in the boonies  We've driven through Wendover a dozen times and I have always been SO curious about these giant casinos in this tiny little town, so this time we stayed in the Wendover Peppermill.  It turns out that the casinos are not quite up to Vegas or Reno standards in terms of amenities.  The gaming floor is huge and the hotel rooms are spacious, but aside from the actual casino, there are no amenities - no pool, no dozens of restaurants, no nightclub, no spa.  So if any of you are tempted by a too-good-to-pass-up weekend getaway trip to Wendover:  I'm going to strongly urge you to reconsider.  But if you're driving through on I-80 and looking for a big hotel room for a good price in that general area, then Wendover might be the perfect stop for you.

Wyoming*

-- The kids have been doing great with the driving.  Joshua likes to watch for trains, and we have seen dozens in the western half of the trip.  We've had some difficulty with Joshua's eating while we travel.  It really helps him to have routine - eating the same meal at the same time and place each day - and of course this is really hard to manage with traveling.  Now that we're in Reno for a month, we've been able to set up more of a daily routine, and his eating is picking up.  I don't think he's lost weight yet, and if things do get worse, we've still got the G-button in place and can use it if needed.  But I would appreciate prayers for Joshua's eating during our summer travels.

We will be in Reno for most of the rest of July, and then back in Lincoln for 10 days at end of July and beginning of August - if you are a Reno or Nebraska friend, I would love to see you!

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* None of the photos pictured in this post were taken by me.  All were found by doing a Google Image search of my favorite areas through which we drove.  If, for some unimaginable reason, this blog post gets a big readership, I will go back and post photo credits.

Summer time

We are approaching our second annual cross country road trip, which will be very much like last year's trip  except that we will be on the road for two months rather than three.  (In case anyone's wondering about travel details:  We will be in Lincoln for a week in the middle of June and then the first two weeks of August, and we will be in Reno for most of July.)  Strangely enough, this unusual way to spend the summer will be only the second time where we have a "repeat" summer in the eight years we've been married.  Here's a little walk down memory lane of the  past eight summers:

2006:  We kicked off the summer by getting married in Lincoln and honeymooning in Maui.  Then we moved to Oakland, CA, where we subletted a studio apartment.  I clerked for a housing law non-profit; Kenny clerked at his Uncle Brian's law firm.  We dined on Easy Mac and sushi, took day trips into San Francisco, and attended church in Berkeley.

2007:  We stayed with Kenny's dad in Reno and studied for the bar exam.  When we needed study breaks, we would have free throw contests or drive over to McDonalds for a yogurt parfait.  We took the bar exam in a casino, then celebrated when it was over.  In August, we used my Honda Civic to haul a trailer of stuff as we moved from Durham to Lincoln.

2008:  We lived in Lincoln.  I made my very first court appearance, arguing a class action Medicaid case.  Kenny finished up a judicial clerkship and spent the months before starting his new job at a law firm writing and playing golf.

2009:  We lived in Reno, for the first time in a house that we owned.  Kenny was working at a law firm, I was working at Legal Aid doing child advocacy.  Kenny managed to convert our backyard from a dirt pile into a pleasant place to spend time.  We enjoyed our two new puppies, had barbeques, and took day trips to Truckee.

2010:  This was our first "repeat" summer - still lived in Reno, still both working - but this time I was pregnant.  So lots of doctor's visits and laying around moaning about the heat :).  Work was busy that summer - I had to prepare for 4 trials right before my due date.

2011:  This was our craziest summer.  In June, we were trying to sell the house in Reno, Joshua had his most major surgery (the jaw distraction in Salt Lake City), and Kenny was working on a huge case at work.  In July, we drove our family cross country to Virginia Beach and lived in a hotel for 10 days before moving into our new house.  In August, we experienced our first hurricane and then flew Joshua back to Salt Lake City for part two of his jaw distraction surgery.  J was on oxygen this whole time, which involved some interesting logistical challenges, such as establishing with Apria offices in every time zone.

2012:  We spent the full summer in Virginia Beach.  I was very pregnant.   Zoey was born in August!

2013:  We did our first summer road trip, detailed in several blog posts from last summer.

And now we are doing a repeat summer road trip.  Looking forward to seeing friends and family in Nevada and Nebraska!

What We Talk About When We Talk About Food

I don't know about you, but lately I've been feeling bombarded with information about food and discouraged because it seems like everything I eat or feed my family is somehow bad.  I care about the health of my family (I have probably spent more time researching health concerns on the Internet than I spent studying for the bar exam), and I totally agree with the idea that health and food are intimately related.  Yet somehow, all this food hype makes me want to bury my head in the sand.  Food information is easily (overly?) available via numerous documentaries, books, articles, Buzzfeed lists, etc.  So, armed with all this information, why do I not conform better to best food practices?  Here are the two main reasons:

1.  Informational Confusion:  It's hard to sort between health concerns, environmental concerns, ethical concerns, and taste concerns, since these things often get lumped together in the "bad food" category.  It's hard to tell what's really crazy scary bad v. what's maybe not the best.  It's hard to tell what's based on fear of unknown future consequences (such as GMOs) v. science.  It's hard to know what's being called a good food today, until a new study labels it a bad food.  (Ie butter, coffee, wine, eggs.)  It's hard to weigh competing concerns - like, is it better to eat 5 daily servings of non-organic produce, or to eat half as much produce but have it be organic?  But information is not the main thing.  The basics of how to eat better aren't that hard:  less sugar, less salt, less processing; more produce (especially greens, preferably organic) and whole grains; less and better meat; less and more wholesome snack foods and dessert.  The main thing is...

2.  Practical Concerns:  there are limits to what i can afford, what kind of products are available in my local grocery store, how much time i can spend on food prep, and what my family members are willing to eat.  There's also the issue, let's just be honest, that while I want to prolong the length and quality of my life, I also want to enjoy it, and this involves eating the occasional milk shake.  (Okay, more than occasional.)

So, in light of these concerns, here are my "eat better food" resolutions.  I'm hoping these things will be more helpful than watching another documentary about how Monsanto is evil or reading a viral article about what really goes into a Chicken McNugget:

• Find real food recipes that are affordable and manageable - I used to think the affordable and manageable part was impossible, but i recently bought Mark Bittman's cookbook, "How to Cook Everything", and he has all sorts of real food recipes that are not more expensive and barely take more time than heating up processed food.  So I'm reading up and trying to incorporate some of these in my repertoire.  
• Find more information about "intermediate foods" - I know about super foods like broccoli and almonds, but my kids won't eat these things. I want to learn about the alternatives that are better than Cheetos, Skittles, and soda, but that kids will actually eat.
• Drop the all or nothing attitude.  I am trying to slowly move away from processed food where it's practical, but it's not something that happens overnight.  Sometimes cooking real food seem like an all or nothing lifestyle, when in fact cooking a few real food meals a week, or cooking meals that combine homemade elements and pre-packaged elements, or eating a few more servings of veggies would all be a lot better than doing nothing.   
• Stay away from food articles that are guilt inducing but not otherwise helpful.  Self explanatory.  
• End goal:  be more intentional about food.  I'm definitely not going to be giving up all frozen pizzas or pre-baked cookies, but I'm going to try not to have them be my default so often.  I would like to learn more "real food" recipes and keep ample food on hand so that when we're eating frozen pizza, it's because we're really craving it, not because it's the only dinner option in the house.  

Exciting News!

Today we met with J's nutritionist and she gave approval for us to stop using his feeding tube!  (If you're wondering why he uses a feeding tube, here's the story.)  We will stop using it for food starting today, and use the next 8 weeks to transition his water and medicine intake from tube to mouth.  Then he will keep the tube in for another 6 months to make sure he can maintain his weight.

I knew there was a good chance this would happen today (we just saw his GI so I knew his weight and growth have been good, and we've been tracking his diet so I knew his calories and nutrients were in the right range).  But it's still sort of unbelievable that we finally made it to this point.  Every time we thought we were getting close, some new bump in the road came up.  When we left the NICU, we thought there was a good chance that he would be eating orally within a month, once he passed a swallow study.  If I knew then that we were going to have the tube for 4 more YEARS rather than 4 more weeks, it would have felt utterly overwhelming.  The feeding tube turned out to be not nearly as bad as I expected, especially considering how challenging it can be to feed him by mouth.  Nevertheless, we have been looking forwad to this day for the past 3 and a half years, and I am so excited that it's here!!  I'm not a big crier (that's an understatement), but I cried happy tears on the way home from his appointment, cried again on the way to the gym, and will probably cry again before the night is over.  This is such a milestone for us.  I'm so proud of Joshua for working so hard even on the days when eating is a physical and mental challenge; I'm grateful to the therapists who have helped us teach him how to eat; and most of all, I'm praising God for getting us to this point.

To mark this milestone, here are some of the unique memories of tube feeding:

• Leaving the extremely sterile NICU and tube feeding J outside the hospital for the first time near a gas station in rural Nevada. Becoming 1000% more aware of germs everywhere.   
• Putting in the NG tube for the first time by myself at midnight when J was 5 weeks old - feeling terror as it was happening and then feeling like a superhero when I got it in correctly. 
• Countless hours spent watching Friday Night Lights and Grey's Anatomy at all hours of the day and night while the food slowly made it's way through the NG tube and we monitored to make sure he didn't choke.  
• Finally getting some sleep when he got the G-tube, fundoplication, and feeding pump at age 4 months.  
• "Feeding the bed" - the nights when the feeding tube got disconnected from his stomach and the formula got all over the mattress rather than in his belly.  (You will not meet a tube feeding family who has not experienced this rite of passage.)
• Thinking he swallowed his G-tube and taking him into the ER for an X-ray (we wondered if this was even possible - it turns out to be one of the very few things you can't get a Google answer for).  
• Watching him pretend to tube feed his teddy bear.   
• Administering food and medicine via G-tube on a crowded Southwest flight with the help of the kind stranger next to me.  
• Explaining to J that filling the car with gas is like the car getting tube fed.   

I could go on for pages, but will stop there :).  We would love continued prayers for Joshua's eating - it's a little scary thinking about taking out the tube down the road - but today is a day of celebration and praise!