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?

Books I read in 2013

I saw another friend with a blog list all the books she read last year with a simple rating system and thought it was a great idea and an easy way to recommend some good books, so I'm going to straight up copy her.  Here is a picture of my book list, thanks to Good Reads (scroll down for my rankings):

Here's my guide:  HR = Highly Recommend, R = Recommend, N= Neutral, TD= Thumbs Down, AMB = Ambivalent (this usually means I really liked it overall but it was 
too crass in parts).  Also, some of these books inspired past blog posts, so I linked to those where applicable.  

The Book List:
1.  The Circle  - R
2.  The Goldfinch - HR
3.  Instant Mom - R
4.  Nine Inches  - R
5.  The Arrivals - R
6.  Heads in Beds - R & AMB
7.  Mitten Strings for God - R
8.  I Feel Bad About My Neck - N
9.  The Fault in Our Stars - HR
10.  The Silver Star - R
11.  O Pioneers - R
12.  Spiritual Formation - R
13.  My Beloved World - R
14.  Gift from the Sea - HR
15.  The Interestings - R
16.  The Language of Flowers - HR
17.  Carry on, Warrior - R & AMB
18.  Destiny of the Republic - R
19.  Growing Up Brave - N
20.  Back to Blood - R & AMB
21.  Telegraph Ave - TD
22.  Far From the Tree - HR
23.  Beautiful Ruins - R
24.  The Round House - HR
25.  The Missional Mom - R
26.  Small Things with Great Love - HR
27.  Quiet - R
28.  Gone Girl - R 
29.  Mom Connection - R
30.  Dear Life - R
31.  This is How You Lose Her - R
32.  Surprised by Joy - R
33.  The Joy Luck Club - R
34.  Love and Logic - R & AMB
35.  Gold - R
36.  1Q84 - N
37.  When I Was a Child I Read Books - HR
38.  The Great Gatsby - R

Feeding Tube Awareness: what i wish i would've known from the beginning

This week is Feeding Tube Awareness Week.  The idea is to spread knowledge about feeding tubes, partly so that when a family is brand new to tube feeding, it won't be so scary and foreign.  Here are some of the things I wish I would have known when we started tube feeding.  

First, the basics.  Here are the two types of feeding tubes Joshua has used.  This one is called an NG (nasogastric) tube, because it goes in through the nose and down to the stomach.  

This one is called a G (gastric) tube.  It looks kind of like the blow hole on a beach ball.  You will have to learn some new equipment and procedures in order to use these tubes.  At first it will seem intimidating, but you will get the hang of it really quickly.  You will even learn how to replace the tubes by yourself, and this will save you lots of stress and trips to the doctor's office. 

Second, all the things that you will be able to do:  I initially had the idea that life would be really limited as long as Joshua was on a feeding tube, but that has not been the case at all.  We can and do feed him almost anywhere - at restaurants, in the car, at the zoo, etc.  Also, he is able to fully participate in normal toddler activities.  He can swim (he's not doing laps or anything, but we can take him into swimming pools), he can play on the playground, he can tackle his dad - all the same activities he would be doing if he ate exclusively by mouth.  Plus, there are some new vocabulary words that he has learned and new options for imaginary play (pictured below) as a result of having this added component in his life.  

Third, you are going to be the number one expert on and advocate for your child.  As long as he is tube feeding, expect that you will know more than many of your child's doctors about what tube feeding is like, what your child can handle (as far as volume and rate and whether something is wrong), and whether your child should be weaning faster or slower than they predict.  Doctors are a great resource and can offer great information and help within their particular field of specialty, but many doctors have not been extensively trained on feeding tubes, and it's best to be prepared for that.  


Fourth, what it's like:  I don't mean to overplay the positives of tube feeding.  It can be lonely and scary and stressful.  There will be extra doctor's appointments and ER visits.  We are eager for the day when Joshua eats all of his food by mouth, and we are hopeful that he will get there this year.  But in the meantime, we are grateful that we have a guaranteed way to give him all his food and hydration and medication, whether he's sick or well.  I'm relieved that he can work on his oral aversions at his own pace, and that I don't have to push him beyond what he can handle because he has an alternative way to get the missing calories.  I have shed many more tears and sent up many more prayers trying to get Joshua to eat orally than any issues related to the feeding tube.  The feeding tube actually relieves an enormous amount of stress, because I know that Joshua will always get the nutrition he needs, whether he's willing to eat or not.  In the beginning, it was a tool that kept him alive; now, it allows him to keep growing and developing on pace while he continues to learn to eat.  

Fifth, it helps to make friends:  If you find yourself in the situation where you or a loved one suddenly has a feeding tube, it really helps to reach out and meet other people who are familiar with tube feeding.  Facebook is a great tool for this.  I love the group Feeding Tube Awareness, and there are often groups available for your child's particular condition.  

The Things that come to mind when you have birthdays in your 30s

This week, I turned 33.  Back when I turned 30, I wrote about my thoughts on the difference between life in your twenties and life in your thirties.  The thoughts still seem applicable at age 33, so I'm going to post them as a #ThrowBackThursday blog.  Without further ado...

I am freaking out about turning 30 tomorrow, so I thought I would write about it.  According to the New York Times magazine,  "Sociologists traditionally define the “transition to adulthood” as marked by five milestones: completing school, leaving home, becoming financially independent, marrying and having a child.”  I hit all those milestones in my twenties (squeezing out the last one, literally, in the last few months of the decade), so I’m not freaking out because I feel like I’m behind on my life journey.  I also am not freaking out because I’m dissatisfied with my life.  Even though things are challenging on a day-to-day basis right now because of the demands of a special needs newborn, I wouldn’t trade my husband or my baby or (most of) my general life experiences for anything.  I think I’m freaking out because you are so carefree in your twenties and you get to have the *big decisions* in life ahead of you.  By your thirties, it’s not like you’re locked into everything forever, but many of your decisions (who will I marry?  what will my career be?  where will i live?) have been made.  Also, the thirties are notoriously a grind decade where you put in the investment work that will make things really good for the rest of your life.  So if you want to have a family with multiple kids, you will raise babies and young children during this decade.   If you want to have a fruitful career, you will be putting in long hours at the office while still towards the bottom of the pay scale and prestige ladder.  As a woman, you’ll be trying to figure out how to balance family and work, which are both at the height of demandingness in this decade.  So I think that’s what I’m nervous about.

[I edited out several long paragraphs about life in my twenties mostly because they would only be interesting to me.  They basically describe that I got an education, traveled, made some good friends, make some dumb mistakes at a time when the stakes were still pretty low, and started my career.]

My musings on the thirties above sounded a little grim, so I want to end on positive note.   It’s not a bad thing that many of my big life decisions have been made, it’s just a change.  When things are a known quantity, you can direct all your energy towards getting good at those things.  I know who I will spend my life married to, so I can enjoy the particular blessings that come with this man and work on the challenges that we have in our specific marriage.  I know that I have invested lots of time and money into going to law school and I have already been fortunate to have 2 law jobs that I really liked, so I can work to get good at those type of jobs (once I get back into the workforce).  I know myself somewhat better than I did at the beginning of my twenties, better know some of the things I need to work on, and I also know some of the things I’m good at.  I’m sure getting to know yourself and improving yourself is a lifelong process, but I am now one decade closer.  Cheers to 30!

Post-script:  Savvy readers will note that  a scant three years later, we have already shown that our "big life decisions" are still in flux.  We moved from Reno to Virginia Beach and Kenny changed jobs from a corporate law firm to teaching law (which within the legal field is a major switch).  I NEVER would have predicted either of these changes at the time I wrote these original thoughts.  So while I think the general idea of this blog is true - as you get older, your life becomes more about attempting to become excellent at the things your life consists of rather than figuring out what exactly your life will be  - we have also seen that life is unpredictable and it's important to retain some flexibility, knowing  that life will throw you some curve balls.