Thankfulness about good care for Joshua

I've written lots of posts about what's going on with Joshua's health, but never a post about how much we have to be grateful for, specifically in regard to his special needs.  So this Thanksgiving week, here is a list of the ways we've been cared for, both by other people and providentially:

Going through 12 surgeries, half of which were in-patient with a PICU stay, Joshua has experienced no serious infections, no complications, and no bad reactions to anesthesia.

Dozens (maybe hundreds?) of people have helped us care for him - doctors and nurses and other health care professionals; PTs and OTs and STs.  And (almost) without exception, they have been great and done such a good job!

We had access to a great local children's hospital in CHKD while we lived in Virginia.

Church and friend support - people have brought us meals (once in the hospital, on Thanksgiving Day 2011), loaned us cars for the month, watched our dogs, prayed for us, sent us care packages at the Ronald McDonald House, called, texted, emailed, and Facebooked their support.  We have been so surrounded by love and support, especially from our churches.  

Joshua has attended 3 public schools and at each one, the teachers and therapists have been so good at their jobs and truly cared about Josh.  

Several things with health insurance:  we were blessed to have great health insurance when Josh was born and ran up his biggest hospital bill; Obamacare allowed us to move around and for Kenny to pursue new job opportunities without worrying about Joshua's pre-existing condition; and moving back to Nevada has allowed us to access Medicaid as a secondary insurance, which will cover private feeding therapy.  

Our extended family on both sides of the family has been very supportive and actively involved in Joshua's care, even when he was on the feeding tube and oxygen.  

Kenny and I both had good maternity and paternity leave policies at work, allowing us to stay with Joshua while he was in Salt Lake City.  

We were blessed that Josh was born at this time and place in history, when there are the right medical interventions to keep him alive and thriving.  

Considering the odds with his particular deletion, we are very blessed that he did not have a serious heart condition requiring heart surgery.  Although we don't know what the future holds, we are blessed that he wasn't more seriously impacted by his chromosome deletion in a whole host of ways.  

With developmental delays, there's extra joy and celebration when your child reaches a new (and sometimes hard fought) milestone.

Kenny and I have been on the same page regarding Joshua's medical care.

The Ronald McDonald House allowed us to have a comfortable and affordable place to stay, with home cooked meals provided each night, while Joshua was in the hospital out of town.  

I've made new friendships with other parents going through similar things.  

Our locations at different points in Joshua's life have been providentially helpful:  being born in Reno meant that he had access to a jaw distraction in Salt Lake City rather than getting a tracheostomy like he would have in certain other parts of the country; moving from the mountains down to sea level Virginia meant that he was able to go off supplemental oxygen, and later that we were able to get genetic testing done; and then moving back from tropical Virginia to dessert Reno meant that Josh's problems with asthma and allergies decreased substantially.

Tube weaning story

[Note to any blog readers who stumble upon this post:  this was written for a different website and posted here for convenience.  But you are welcome to read it!]

My son Josh was born with Pierre Robin Sequence (PRS) and a rare chromosome disorder called 4Q deletion syndrome.  Children born with PRS have a recessed jaw and a cleft palate, which causes trouble with both breathing and eating.  Children with 4Q deletions often have feeding and swallowing difficulties as well.  Josh started using an NG tube on the day he was born, and he had a Mic-Key G-button placed at 4 months.  Although he was able to start tasting food as an infant, he was almost exclusively tube fed for his first 18 months, while he underwent a series of craniofacial surgeries that made it safer and easier for him to eat.

After he finished the surgeries and passed a swallow study, his pediatrician recommended that we immediately start an aggressive tube weaning program (cutting the number and volume of daily tube feeds he received by a third), which she hoped would kick-start his oral eating by making him feel hungry.  We tried that for a month, but his oral eating did not take off as hoped, and instead he just lost weight.  At that point, we realized that he still had some weakness with chewing and swallowing, as well as a significant oral aversion to almost all foods.  We started him in feeding therapy with an occupational therapist, we increased his tube feeds back up to previous levels, and we let him work on oral eating at a pace that was comfortable for him.  Every 3 months, we made a list of everything he ate orally for a week, and then we would check in with a nutritionist to see how he was doing with calories and nutrition and decide whether we could decrease the volume of tube feeds.  (Just to be clear, we were not waiting for him to get to the point where he ate a perfectly balanced diet of all the most nutritious table foods - his diet was and still is extremely limited, mostly pureed / smooth / easy foods, and was never the table food I prepared for the rest of the family.  His nutritionist understood the limitations and was not looking for perfection, but she helped us make sure that he wasn't experiencing any serious nutritional deficiencies from his limited diet.)

He made progress very slowly, and sometimes (often?) it felt like we would never get to the point of tube weaning.  There were many days where I felt discouraged about the slowness of the process - even though I know each child goes at their own pace, it sometimes felt like we were stuck in a permanent rut.  But we were so grateful to have the feeding tube, so that he could stay healthy and continue growing and developing while we found the oral eating approach that would work for him.

Josh's stoma2 months after we took out the G-button.

The tube weaning process took a few years, but eventually Josh increased his daily calorie intake enough that we were able to stop using his G-button, and we found the combination of foods that he was able to eat, willing to tolerate, and that would provide him a good nutritional balance.  We still use supplements, high-calorie nutritional drinks, and multi-vitamins to round out his limited diet.  The doctors decided to keep Josh's G-button in for a full year after he stopped using it to make sure that he would continue to gain weight, take his medicines, and continue to orally eat as we made some big changes (our family moved across the country during this process).

Our GI doctor gave permission for us to take out the G-button around Joshua's 5th birthday.  We took the button out at home, and we celebrated with cupcakes with green frosting and sprinkles (Josh's request).  We covered his stoma with gauze and medical tape for the first week, but it stopped leaking after the first few hours.  Josh did great with the button removal!  We thought that it might be really hard for him to see it go, since he had it in place for his whole life and we all treated it like a part of his body, like a second belly button.  But I think it helped that he had some control in the process (he helped us take the button out for the final time) and that we had a celebration (so he understood that it was a positive change).  We had an appointment with our pediatric surgeon a month later, and the surgeon said that he didn't need it surgically closed since the stoma stopped leaking on its own.

To any of you who are weaning your super tubie, please don't be discouraged if it takes a long time, and especially don't be discouraged if it takes longer than your doctors think it should.  Our doctors seemed to be mystified that Josh couldn't eat 100% orally the minute he passed his swallow study.  But in connecting with other tubie families, I've learned that every child really is different in how they wean - they all have different medical and developmental needs, not to mention different personalities!  You know your kid best, and for many kids, letting them take their time with the tube weaning process is the best (and only) thing you can do.

Thankfulness Post Year 3: On the Lighter Side

This is my third year doing a thankfulness-themed post.  The last two years, I tried to make my posts more "serious" (Gratitude Year 1, Gratitude Year 2) -I wrote in part about how thankfulness doesn't just need to be about the things that make us happy.  But sometimes, thankfulness is exactly about the things that make us happy!  So this year, I'm thankful for those people, places, and things that bring entertainment, happiness, and beauty into our lives by their existence.  And it's done in list and countdown form, because I am thankful for those blog formats :).  Please add your favorites in any of these categories (or make up your own) in the comments!  I am thankful for:

6: Excellent workplace-themed TV shows available on streaming:

• West Wing - on Netflix, about the White House
• House - on Netflix, about doctors
• Mad Men - on Netflix, about advertisers
• Breaking Bad - on Netflix, about drug dealers (this counts as a workplace theme, right?)
• The Good Wife - on Amazon, about lawyers and politicians
• Newsroom - on Amazon, about journalists

5:  Songs that are easy like Sunday morning:

• Butterfly - Mason Jennings
• Can't Take My Eyes Off of You - Lauryn Hill
• Banana Pancakes - Jack Johnson
• Where is the Love - Black Eyed Peas and Justin Timberlake
• I'm in a Hurry (and don't know why) - Alabama

Mad Hatter desserts

4: Great coffeeshops:

• Brewed Awakenings - This was my go-to coffeeshop during college in Providence, RI.  My roommate Judy and I spent countless hours in this place.  Drink recommendation:  Cookie Monster.
• The Mill - This coffeeshop in Lincoln, NE has been my hometown coffee destination through so many stages -- in high school I went here when I wanted to feel grown up; now I go here when I want to feel young.
• Milagros - I spent a year living in Alamosa, CO (near the Great Sand Dunes) and this lovely coffeeshop was my home away from home.   They frequently hosts community events and their proceeds benefit the local homeless shelter.
• Mad Hatter - This is one of many great coffeeshops in Durham, NC that I frequented during law school.  Mad Hatter gets the shout out because I have some nice memories of meeting Kenny there, and also because look at those cakes!

3:  Favorite sporting events:

Olympic triple jump

• March Madness - because in any given NCAA tournament game in which Duke plays, there is a 75% chance that Duke will win. 
• College football - So much emotion is packed into this sport at this level of play.  The 2015 Nebraska Huskers have dramatically illustrated the thrill of victory and the agony of defeat.  
• Summer Olympics - One of the few opportunities to see triple jump on broadcast television.  (Or whatever your unusual warm weather sport of choice is.)  

2:  Christian woman Facebook personalities / bloggers who are funny and nice -

• Jamie the Very Worst Missionary - one of my favorite blogs by her is #blessed
• Jen Hatmaker - one of my favorite blogs by her is yeses and nos

1:  Lake Tahoe.  (Does this need an explanation?  No.  It does not.)

Life Rhythms and Anglicanism

One of my favorite parts of caring for young children is how your life takes on a certain rhythm.  There's the daily rhythm of naps and snacks and playtime, and it can start to feel like Groundhog's Day because every day is so much the same - except that the kids are going through seismic changes in the first few years and the routines and dependable rhythms can be very reassuring (to both kid and adult) as you transition through constant change.

Then there's the seasonal rhythm, where so much of what you do with kids is tied to the time of year - picnics in the spring, sandcastles in the summer, pumpkin patches in the fall, snowmen in the winter.  Every holiday, every birthday, every day of celebration is a big deal.  (When I think back to my own childhood, so many of my favorite memories are tied to these seasonal events - watching the Big Bang Boom firework show over Skyview Lake in the summer; going to Husker football games in the fall; sledding precariously down the hill at Mahoney State Park in the winter; dyeing Easter eggs at my Grandma's house in the spring.)

As adults, we necessarily lose some of this focus on the daily and yearly rhythms because there's so much to squeeze into the day however you can - work, household chores, caring for others, fitness, etc. - but I think people still find ways to recognize the seasonal rhythms and you see it all the time.  Some examples:  if people are posting daily Facebook statuses about what they are thankful for, what month is it?  If every single product in the grocery store comes in a pumpkin spice version, what season is it?

I think we love the seasons and seasonal traditions so much because we are built to live our life in a series of rhythms (daily, weekly, yearly, and the different seasons of life).  And now I'm finally going to connect all this "rhythm" talk to the title of the post - Anglicanism.  I attended an Anglican church for awhile in Virginia, and learned that it's a great denomination for people who are Protestant and looking for a liturgical church with a deep and rich history.  One of the most important distinctives of Anglicans is their use of The Book of Common Prayer*, which provides:

• Daily prayers:  There are morning, noon time, and evening prayers.  You can pray some or all of these, and you can pray them individually or with a group.  
• Seasonal prayers:  There are special prayers for church holy days (such as Easter, Christmas, etc.) and also for secular holidays (like Independence Day).  These give you beautiful, deeply thought out words to pray to commemorate the annual events of the season.  
• Prayers to honor special occasions:  There are prayers for the birth of a new child, marriage, sickness, the loss of a loved one -- all the occasions that are the most important parts of life, and where it's sometimes hard to find exactly the right words to try to match the importance of the event taking place.  
• (There's a lot of other kinds of prayer contained in the book, but I am beyond unqualified to give an exhaustive list. ) 

The Anglican church also observes the church calendar very faithfully, and so each year you have somber / contemplative times (like Advent and Lent) and celebratory times (like Easter, which it turns out is more than just the one day when the bunny shows up).  There is an elaborate celebration of Holy Week.  There is recognition of days that I had never paid much attention to before, such as All Saint's Day.  And there is the acknowledgement that, even with all the special days and special seasons, most of the church calendar (and most of our lives) are lived in "Ordinary Time".

The predictable rhythm of spending a few minutes each day in The Book of Common Prayer can provide great stability and reassurance in the middle of the ups and downs of life.  And the seasonal rhythms of the church calendar remind you to honor life's ups and downs - to celebrate during the good times, to mourn during the hard times.

One other thing I absolutely love about the Book of Common Prayer is that it gives you good direction in how to pray.  Growing up, I was taught that prayer should consist of  Adoration, Confession, Thanksgiving, and Supplication.  It's very easy to miss a LOT of things in every single one of these categories, as we tend to make our prayers all about us rather than about God.  The Book of Common Prayer can be a big help in deepening and broadening your prayer life.


*I wrote in my Resolutions blog post that I planned to use the Book of Common Prayer regularly this year (which is a resolution I've mostly stuck to, unlike some of the others) - this post explains why.