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!

Joshua's story

Since I frequently use this blog as a place to give health updates about Joshua, I wanted to write a post explaining his medical background.  (ETA:  this blog post is just a quick summary.  To really understand what it felt like to go through all this, check out Kenny's book.)  I know many of you who are so gracious to read my blog are very familiar with all this, but in case there are some of you who know parts of the story but not all of it, or who have more recently become a friend, here's the story in brief:

Joshua was unexpectedly born with Pierre Robin Sequence (PRS), which is a craniofacial condition where the baby has an underdeveloped jaw, set-back tongue, and cleft palate.  PRS can cause significant problems with eating and breathing.  Josh was born in Reno, then life-flighted to Salt Lake City at 3 days old, where he spent a month in the NICU so that doctors could address the eating and breathing issues, give him his first surgery, and run tests to check for other problems.  When Josh was sent home, there continued to be significant issues with his eating, breathing, and hearing (he failed his first hearing tests).

During his first year and a half, Joshua received 9 surgeries to address these issues (the most major surgeries were his jaw distraction and his cleft palate repair).  He was on home oxygen for the first 12 months, and he was fully or partially tube fed for his first 4 years.  

He's seen a bunch of kinds of doctors: pediatricians, developmental pediatricians, pulmonologists, orthopedists, audiologists, otolaryngologists, neurologists, geneticists, anesthesiologists, hematologists, cardiologists, urologists, gastroenterologists, dermatologists, craniofacial / plastic surgeons, ophthalmologists, physiologists, pediatric dentists, orthodontists, emergency physicians, neonatologists, intensivists, hospitalists, speech therapists, physical therapists, occupational therapists, feeding specialists, nutritionists, and social workers.  (These are all in plural because for many of these, we have one of each type in Utah, Virginia, and Nevada.)  He had numerous tests run (for example: 9 sleep studies, 4 swallow studies, etc.).  Now he's graduated from regular checks with most of these doctors, and we can just call them as needed.

In October 2014, he got a new diagnosis of 4q deletion syndrome.  Here is the post describing what that is and what it means for his future.  For most kids with this type of chromosome disorder, the most serious medical issues occur in the first couple years due to various birth defects, and after that there is sometimes ongoing (but usually more minor) health issues and developmental delays / learning disorders.

[I will edit this last paragraph periodically to keep it up to date]:

Now, at age 10, Josh is doing great and he's past his most serious medical issues.  His breathing is (usually) no longer an issue and his hearing tests as normal.  He continues to have minor developmental delays and learning challenges so he receives special services at school and private occupational therapy.  He has an oral aversion, due to all the medical interventions and sensory processing disorder, so eating is still a challenge, but he successfully weaned from his feeding tube around his 5th birthday.  He also has some ongoing medical issues (seasonal allergies, asthma, GI issues, sinus infections), and from time to time other things pop up (including 6 additional minor surgeries since the series he had as a baby).  But overall, we are very grateful and happy about where he is now.

Raising Boys v. Girls: The Toddler Edition

Back in August, I wrote about my thoughts on the difference between raising boys and girls, focusing on my hopes and fears (since there is very little difference between infant boys and infant girls).  Now I have two toddlers, so I can start writing about observed differences rather than just projections.  My sample size of two is very limited, but it's still interesting to see the ways that the kids are similar or different, how that lines up with gender stereotypes, and how much can be attributed to nature v. nurture.  So without further ado...

What I expected to see:  Toys and play are the major way I can see the kids' personalities at this age.  I expected that boys and girls would gravitate towards totally different toys, probably because a visit to the toy department of any big box store markets toys strictly along gender lines.  (And here's something that's super annoying: most of the toys marketed to girls are about their appearance - make-up, fashion accessories and dress up - or about their role as a homemaker - cooking sets, vacuums, and dolls galore.  I don't mind some of that, especially the dolls, but why are there not more toys that encourage girls to explore interests outside of these two narrow subsets?)

What I actually see:  The kids are mostly interested in the same toys - anything new, anything that's a miniature of what they see adults using a lot (ie play food, play mower), and anything that the other one is playing with.  Despite what the aforementioned toy marketers would lead you to believe, there are actually tons of toys that are gender neutral - books, puzzles, pretend play items, stuffed animals, sports equipment, and musical instruments.  Girls are interested in cars and trains if given the opportunity, and boys are interested in play kitchens and tea parties if given the opportunity.

So how are they different?  The main difference is not what they are interested in, but how they play.  Joshua likes to be moving or doing something - running laps around the living room, jumping on the trampoline, chugging trains around the track, crashing cars into each other, and building towers with his Legos.  He doesn't mind if other people join him in playing, but that's kind of secondary.  Zoey, on the other hand, likes being relational.  She will play chase and jump on the trampoline, but it's because she likes hanging out with her big brother.  She will also play with the cars and the blocks, but her favorite way to play is to bring them over to the nearest person and share what she found.

The other big difference is problem solving:  Zoey loves to say "Mommy do it".  She says this phrase (or some close variation - "Mommy read it", "Mommy get it", etc.) at least 100 times per day.  I don't think Joshua has said this phrase a single time in his whole life.  He will try to solve problems on his own with great determination, and if he can't figure it out on his own, he's more likely to start screaming in frustration than to seek help (we are working on this and he's getting better).  Zoey is much more inclined to seek help first and problem solve only if the person who already knows how to do the thing is unavailable.  (She probably learned this from me, so Zoey and I together need to learn how to take more initiative in problem solving.)

I won't make any generalizations based on these observations because this could really just be my two kids and not a broad representation of all boys and girls everywhere.  But it's funny to see differences emerging from the very beginning.  I'm interested, other parents and caretakers of young kids - what kinds of similarities and differences do you see between toddler boys and girls, and how does this match (or not) with what you expected?

The Healthcare Reform I Would Love to See

Awhile back, I posted this status update on Facebook:

*Insurance rant*: So our insurance company denied coverage of J's feeding therapy, saying it's not medically necessary. First of all, when did the definition of "medically necessary" get so stringent that it doesn't automatically include teaching a tube fed kid to eat by mouth? And second, how short sighted is it to deny coverage for the one service that is really helping us move closer to getting off the feeding tube, while continuing to pay for all the much more expensive services that maintain the feeding tube (GI doc, nutritionist, weight checks with ped, home health care supplies, etc.)? Banging my head against the wall. But also looking forward to appealing this decision, as fighting insurance companies is what i do for fun these days .

Six months later, we are still fighting to get occupational therapy covered.  We've done an informal appeal, a formal appeal, a review at the state Bureau of Insurance, and now we're exploring our additional options.  The problem is this:  except in rare cases, private insurance companies do not cover therapy services for kids over age three.  (I think our case fits as one of the limited circumstances -- the insurance company, so far, disagrees.)  So the health care reform I would like to see is this:  private insurance companies should cover physical therapy, speech therapy, and occupational therapy for developmental disabilities and other medically necessary situations.  

Of course I'm mostly focused on getting Joshua the feeding therapy he needs, but this is an issue that goes far beyond our family.  The CDC announced earlier this month that 1 in 68 children in the United States is diagnosed with an autism spectrum disorder.  That's a HUGE number of kids who could greatly benefit from PT, ST, OT, and other types of therapy -- but if their family has private insurance, then the family will probably have to pay for the therapy out of pocket, which can add up to thousands of dollars per month.

The benefits of these therapies is huge.  They improve quality of life and functionality in big ways. They provide kids with the tools to move around independently, communicate, eat and drink, and generally better use all the parts of their body.  This helps the kid, the kid's family, and it ultimately helps society because you have more people who are able to do more things, so health care costs go down.  (I'm probably totally butchering this section, so if you are a therapist and want to jump in on the comments section and better explain why you are awesome, PLEASE DO.)

There are several systems in place to provide kids with therapy:  Early Intervention provides therapies  until kids turn age 3; the school system provides therapies after age 3 (but only if they are related to education, only during the duration of the school year, and often the therapy is provided in a group setting rather than one-on-one); and Medicaid covers some therapy services outside of school (but many kids do not qualify for Medicaid, and some therapies are not covered by Medicaid).  These programs are great and they provide much of the coverage that is needed.  But this leaves some huge, gaping, holes:  like a child with a feeding tube who has 4 doctors saying that he needs feeding therapy to learn to eat -- but the child is over age 3, learning to eat is not related to education, and the child is not eligible for Medicaid - so no coverage.

Thanks for letting me step on my soapbox and wave my fists in the air.  A blog is probably not the best way to effect policy change, but it made me feel better to write about it this afternoon, so thanks for reading.

Ban Bossy?

I've seen several blogs lately about Sheryl Sandberg's campaign to ban bossy.  Some of them respectfully dissent (I loved this one); some of them rage against the campaign (did not care for this one).  So now I'm adding my two cents.

The reason for the "Ban Bossy" campaign is to try to encourage young females to be leaders.  I'm all for more female leaders.  My problem is with the idea that bossiness is the character trait that makes a great leader. The definition of bossy is "given to ordering people about; overly authoritative; domineering; highhanded, officious, dictational; overbearing, abrasive".  Are these the qualities we want to cultivate in our future leaders, male or female?  Even if you use the definition of bossy that the backers of the campaign probably intend - something like "assertive, opinionated, and expressive" - I question whether these are the most important traits in either being a good leader or putting yourself in the position to become a leader.

Here are the three traits I've consistently seen in the best leaders in my life (whether they were male or female):

1.  Exceptionally competent - Great leaders are really good at what they do.  Whatever it is you do, if you do it with excellence and care, you will stand out.  This may sound super obvious, but it's surprisingly rare.  If you're excellent at what you do, then you won't need to be the loudest person in the room - you will earn people's respect, promotions, etc., by doing a good job.  Teddy Roosevelt said it the best:  "Speak softly but carry a big stick."

2.  Hardworking -  Great leaders work hard, and that's often how they cultivate their exceptional competence.  This doesn't necessarily mean that the leader has to be the first one to work in the morning and the last one to leave (although it certainly can look like that) - it means that they attend to their tasks with focus and diligence; that they keep practicing a skill or working on a problem until they get it right; and they don't just show up when the spotlight is on, they put in the hours doing tedious preparation so that they can perform well in the spotlight.

3.  Relate to those they lead with kindness - Great leaders treat the people they are leading with dignity, respect, and kindness.  If there is a problem, they start with an attitude of "how can i help fix this".  They take responsibility before they lay blame.  They listen well, they give praise and encouragement frequently, and they care about the welfare of the people they are leading.  This doesn't mean that there is never conflict or never a need for correction, but it will be received better if the followers know that the leader cares about them and wants them to succeed.  A kind leader makes people want to follow him or her.

These are the qualities I think we should be seeking to cultivate in our future leaders, both boys and girls.  So how about a campaign for #competent #hardworking #kind?