Reno Christmas Vacation

We are nearing the end of our time in Reno, so in keeping with the tradition from this summer, I thought I'd blog about our month in the Biggest Little City in the World:

• Birthday celebrations - it's always fun to do birthdays with a big group, and we celebrated many:  Kenny's, 2 year old nephew Lewis, and mine (an early celebration since my actual birthday is at the end of January).  Best of all, we got to be around for an actual birth day -- nephew Caleb Thomas was born on December 27th.  

• Ching Christmas - We did many traditional Christmas things - gathering with family, eating a wonderful holiday meal (as well as fudge and cookies and appetizers throughout the rest of the day / week / month), and opening presents on Christmas Eve and stockings on Christmas morning.  Some traditions that are more specific to the Chings:  eating lefse, which is a traditional Norwegian treat (Kenny's mom is Norwegian) that is similar to a tortilla with butter and sugar spread on top (but i think there's actually a lot more to it); and singing all the verses to Christmas carols (a new twist this year was discussion of using smart phones to look up lyrics, but we ended up successfully sharing hymnals and piano books).

• Medical mishaps.  
• Round One:  We started the trip off with two sick kids, which resulted in two trips to Urgent Care (Zoey's trip was pretty standard; Joshua's, once again, went something like this), two sets of antibiotics, and a week later, two healthy kids.  
• Round Two:  On Christmas morning, Joshua hopped out of bed at 5 am to check his Christmas stocking, and in the process his G-button came out and burst.  So that started the morning off with a bang!  When the button comes out, you need to replace it within 30 minutes or head to the emergency room because the body starts healing itself (and the hole that allows food to enter starts closing) right away.  We always travel with a spare, so we got the button replaced, but our spare also turned out to be a dud.  So we debated going to the ER as the spare button came out 3 more times in the next 24 hours.  We were able to keep it in well enough to wait until the day after Christmas to deal with it.  It took many phone calls to find a medical supply provider who had the right size button in stock and who was willing to sell it to us same day without a prescription or insurance clearance, but thankfully we got it done and avoided a trip to the hospital.  

• Mountains are the best - now that I've lived in the Great Plains, New England, and near the ocean, which each have their own incredible beauty, I can officially say that mountains are my favorite kind of natural attraction.  They make a drive to the grocery store beautiful.  They provide for year round recreation.  And it's hard to beat the look of the mountains at dusk.  

• New Year's resolutions - in case anyone is interested, i have three:  1) read War and Peace; 2) read through the Bible in a year (my first time attempting this since becoming a parent, which should bring an interesting new perspective to it); and 3) run 100 days in the year (so far, i have completed zero days, but i received some great new running clothes and shoes and i'm excited to put them to good use).  

• Travel delays - We were supposed to fly back to Virginia yesterday, but due to the crazy weather this week, our flight got postponed until Sunday.  So 6 extra days of vacation!  Kenny had to cancel a few classes and Joshua will miss a couple days of school and therapy, but for the most part, this delay allows us to spend an extra week with family without causing a major disruption to any of our lives.  

That's been my month.  I would love to hear about your holidays and New Year's Resolutions!  (i am not interested in hearing thoughts about why New Year's resolutions are pointless.  #sorryimnotsorry #justhashtaggedmyblog)

Joshua Updates and Helpful Specialists

This post will combine two things - an update on Joshua's feeding and some general thoughts on my favorite specialists we see.  We had a couple feeding appointments this week:  one with the nutritionist and one with a rehab team.  They were both taking a close look at Joshua's diet and advising us on whether we could / should make any changes.  We've seen the nutritionist many times, but the rehab nurse practitioner was a new one, and she was awesome.

I'll start with the Joshua update:  He currently gets 12 ounces of Pediasure per day through the G-tube, which is usually 1/3 - 1/4 of his daily calorie intake.  The team approved us to drop that down to 9 ounces but to try to replace the additional 3 ounces with a nutritional supplement juice drink called Boost Breeze.  We are two days into this plan and it seems to be going well with the juice, so this plan might be the thing that eventually gets us off the feeding tube.

The thing that's a  little scary about heavily depending on a juice drink is that, like all of us, Joshua sometimes gets tired of things he consumes a lot of and then refuses to eat or drink anymore.  (This happened with Pediasure.)  If he tires of the juice, we don't have a good back up solution.  Because the list of foods Joshua will eat is very short and very low calorie (mostly fruits and crackers), the juice is a good short term fix, but eventually we need him to be eating "table foods" (especially meats, grains, and veggies) to get enough calories and nutrients.  So those of you who are so kind to pray for us, our prayer request is that Joshua eat a wider variety and a greater volume of food, especially the kind of foods you would eat in a normal meal.  The doctor was encouraging that he would get there, but that it just takes awhile.  

I feel good overall about where he's at, but the appointments regarding his feeding plan always leave my head spinning.  It will be good to get to Reno and take a few weeks off from appointments.

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And for part two, here are two of the most helpful doctors we've seen:  developmental pediatricians and rehab doctors (also called physiologists).  Though their focuses are different, I think they are helpful for the same three reasons:

1)  They take a comprehensive view:  If your kid has special needs, you will see a TON of doctors and health care professionals, and they will all run their own sets of tests, evaluations, and procedures.  Joshua, for example, has seen pediatricians, developmental pediatricians, pulmonologists, orthopedists, audiologists, otolaryngologists, neurologists, geneticists, anesthesiologists, gastroenterologists, dermatologists, plastic surgeons, ophthalmologists, physiologists, pediatric dentists, emergency physicians, neonatologists, intensivists, hospitalists, speech therapists, physical therapists, occupational therapists, feeding specialists, nutritionists, and social workers.  You end up with a ton of information, but not necessarily a clear picture of how it all fits together or how it relates to your day-to-day life with your child.  These doctors have the medical training to understand how all this mountain of medical information fits together, and how it relates to developmental delays (in the case of the developmental pediatrician) or life functions (in the case of the rehab doctor).  

2)  They come up with a practical treatment plan:  Once they have helped you assess what medical issues are causing your child's developmental or functional problems, they help you figure out a practical plan for moving forward.  And they recognize that there are many factors involved in addition to what will work best medically.  For example, they think about whether insurance will cover the things they are recommending, whether it will realistically fit into the family's schedule, etc.

3)  They manage expectations: This, for me, is the biggest one.  Some of our specialist doctors seem surprised that Joshua still uses a feeding tube.  The anatomy of his mouth has been repaired so that he can swallow fine and his airway is no longer obstructed, and they don't seem to understand that there can be a lot more to it than just fixing the mechanics.  But the developmental ped and the rehab doc understand that Joshua's medical history would explain severe oral aversions, might involve a learning curve in connecting hunger with oral feeding, etc.  They reassure us that even though his progress seems slow, it's not outside the normal range given his situation.  They seem confident that he will graduate from the feeding tube eventually, but are realistic in telling us that it could take many more months.  I don't mean this post to denigrate the other specialist doctors - they are all an important part of the puzzle, and the dev. ped. and rehab doc couldn't do their jobs without the information provided by the other specialists.  (Also, many of our other specialists are extremely knowledgeable and kind and just all around wonderful human beings and I'm glad to know them.)  But as the parent, you may feel more helped, supported, and understood by these doctors than by all the others.

For those of you who have seen a long list of doctors for yourself or your child, i would be interested to hear who you think is most helpful?

Holiday Related Thoughts

Thanksgiving

I enjoyed seeing pictures of everyone's beautiful Thanksgiving meals and family gatherings this weekend, but I'm wondering if there were any who had a weekend more like ours:  perfectly nice, but not the kind of thing you take a picture of and post on Facebook.  Here's how our weekend went:  Kenny and I started discussing what our Thanksgiving plans should be on Wednesday (as in, the day before).  We decided to forego cooking a giant meal for just the two of us and instead to dine at a restaurant.  We chose the restaurant by cruising around on Thanksgiving afternoon and seeing what was open and kid-friendly.  Our first choice was Golden Corral, but let me tell you, the mob scene we saw there makes the mob scene at Walmart on Black Friday look like small potatoes.  So we kept going until we decided on IHOP.  Kenny got the traditional Thanksgiving plate; I got pancakes and eggs.  Our kids each got an orange juice and each managed to drink more than they spilled, so that was a victory.  After the meal, we decided to check out the Brown Thursday shopping that we had seen so much protesting about, but alas, nothing was open yet at 4 pm.  Apparently the protesting was in regards to stores opening at 8 pm or later, which to me seems to be very similar to stores opening at 12 am on Black Friday, except more convenient for everyone involved.  But I digress.  We went home, got the kids to bed, and then I baked a pumpkin pie to try to give the end of the day a down-home touch.  Kenny and I enjoyed the dessert, and we enjoyed our non-traditional Thanksgiving.  Though we missed our families on this day, as we do on most other days of the year when we're not together, it was actually really nice to keep things low-key.

Lest anyone feel sorry for us after reading this account -- there is still much celebrating to be done this holiday season.  We will be visiting Kenny's family in Reno from mid-December through early January, where we will enjoy humongous and delicious meals, lots of laughs, and family togetherness for Christmas and the New Year.  I just wanted to share our Thanksgiving story because with Facebook, it's easy to feel like you're the only one who didn't cook a meal worthy of being pictured in a magazine, or who didn't gather with a group of 20, or who didn't celebrate in a completely traditional way -- there are many of us out there, probably more than you think.  (And to those of you who did work your tails off to cook a huge meal and host a big group, big props to you - that's a ton of work and if I had done it, you better believe I'd be posting it on Facebook.)


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Advent Season

I missed the last few weeks of church due to sickness that passed from family member to family member (and which finally seems to be leaving our house, hurrah!), so it was *really* nice to be able to attend church for the first week of Advent.  I've always enjoyed the Christmas season, but it's taken on a much deeper meaning for me since Joshua was born and I've felt new levels of worry and sorrow with some of his medical situations.  He's doing well overall now, but going through an experience of suffering really opened my eyes to the suffering in the world - what it really feels like to hurt, and how desperately you need something bigger than yourself to get you through times of despair.

It's so easy, this time of year, to get distracted with errands and silly controversies.  I've spent lots of time thinking about who to get Christmas presents for, and what to get, and why can't I be one of these people who makes cool homemade creations that are both affordable and thoughtful.  I've formed opinions on the great debates of the season:  when should Christmas music start being played; is Black Friday awesome or terrible; should the Christmas tree be artificial or real; to Elf on the Shelf or not to Elf; etc.  I've spent too much time focused on the wrong things.  So that's why it was good to finally get back to church.  It clears my head of all the distractions and reminds me of the true beauty and hope that we celebrate at Christmas:  that by being born, and ultimately through His death and resurrection, Christ brings hope into a despairing world burdened by sin and sickness and sadness.

Small Things with Great Love

I've been thinking lately about this: how can I spend more time focusing on other people and less time being so insular?  This book has been helpful:  Small Things with Great Love: Adventures in Loving Your Neighbor.  "Small Things" encourage you to love your neighbor (whether it's your literal neighbor or your "neighbor" across the globe) and act accordingly.  This can be done through your career, Christian ministry, community service, or just freestyle being kind to people.

"Small Things" make the point that service works best if it fits pretty naturally into your life -- meaning it uses your natural interests and aptitudes, and it takes place in communities where you feel drawn or have a natural fit -- but NOT meaning that there won't be sacrifice involved, or that the communities you're drawn to are going to look exactly like you.  This book is really understanding of life stage and personality / age / circumstantial limitations, but it encourages that everyone has something to offer.

I will be honest that right now, it's mostly just got me thinking, not doing.  As long as the kids are still in diapers, they are going to be my primary "act of service", and that's okay.  But someday not so far down the road, there will be a little more time for service work outside the home, and "Small Things" (as well as another book I recently read called The Missional Mom: Living with Purpose at Home & in the World) gave some really good questions for thinking about how best to incorporate service in your life.  [Note:  there is a lot more to these books than community service - they also encourage you to educate yourself about social justice issues, examine your spending and giving patterns, and lots of other things.]  Here are the questions:

• What is your deep gladness?   I deeply care about people having affordable and comprehensive access to health care. I care about alleviating poverty and the structural injustices that lead to poverty.  I like projects that benefits children (foster children, children living in poverty, children in need of better health care, etc.).   I love details - I like to read policy wonk articles carefully, I like to lose the forest for the trees when I have discussions with my husband.  I love to compete - whether it's litigation, sports, board games, you name it - I find activities more fun if there is a winner and a loser.  

• What are your talents, interests, opportunities you've been given?  The big one for me is that I have a law degree.  I'm hoping that when I get back to work, I can get a job with a public interest employer.  But even if not, there's always the opportunity to do pro bono legal work for people.  Another talent / interest I have is sports.  It's less obvious to me how this can be used to alleviate pain and suffering in the world, but I've seen other people do pretty amazing things with sports.  (Such as start a running club at a homeless shelter and train a team of women to run a half marathon; coach at-risk kids in team sports; etc.)  

• What's your pain?  I thought this was such a good question.  You have the best potential to bond with people deeply when you share the same pain rather than the same interests or accomplishments.  When I find out someone went to the same college as me or that they used to be a triple jumper, we can have a good conversation for 5 minutes and then we go our separate ways.  When I find out that someone else's child has special needs, and particularly if the needs are similar to my child's needs (ie pediatric surgeries, developmental delays, feeding tube), my heart goes out to them.  We may be totally different people with totally different lives, but if we have that in common, then I know that I understand some of their deepest fears, their deepest struggles, their hardest moments.  Shared pain bonds people in a way that other commonalities never can.   

• What are some of the particular communities you are placed in right now?  The book talks about how you can start integrating acts of service into your life right away if you identify the people who you already interact with on the regular.  I am a stay at home mom with a kid in preschool, so the people I see most regularly right now are other moms (at the library, play group, the park, school pick-up etc.); school staff; and therapists and doctors.  So these are the people who are in my "community", and I should think about how best to serve them.  Since I am pretty introverted, a good place to start would be striking up conversation with these people about their lives, rather than having purely functional interactions and otherwise staying in my shell.  

Once you've identified the answers to these questions, the idea is that you can start looking for service opportunities (formal or informal) that are a good fit for you.  I would love to hear other people answer any of these questions, or add questions to the list.


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Transitions are Hard

A couple weeks ago, I wrote about how Joshua started school and how it wasn't too hard on him or me. After that first day, though, I went through a little bit of a depression.  This month, Joshua seems to be growing up all at once – switching to a regular bed, dropping a nap on most days, starting school, turning 3, and starting to potty train with more intensity.  I’m grateful for how well all of this has gone (with the exception of potty training, which is going to be a slow process).  But it’s also making me feel a little sad, lonely, useless, and off-kilter.  Lonely because I like having Joshua around – he brings a real sense of life and joy to the household, and it’s so quiet when he’s not around.  Sad because I know as life goes on, he will become increasingly independent – spending more time at school and with friends, needing and wanting my help and attention less, etc.  I need to remember that this is a GOOD thing for at least two reasons:  1)  It’s a great blessing that Joshua is moving towards independence; and 2)  As the kids grow up, it means I get back some of my own independence, which I can use for other things – getting back to work, giving more attention to Kenny, having quiet times, exercising, doing service work, etc.  But you spend those first three years adjusting to the fact that your baby is utterly dependent on you at all hours of the day for his most basic needs – and then just as you’ve adjusted to that reality, it starts to go away.  Joshua is still needy most hours of the day, but now his teachers are giving him the help he needs 15 hours a week.  They are providing a lot of the therapy and language work he needs, the social interaction, at least one of his snacks, and some of the encouragement and love.  Of course they can’t replace his family and home life, but they’ve got a big chunk of his time and attention now, and it can be hard to share.  (There's also the issue, underlined by the sad news of the school shooting in Sparks this week, that when he's out of my physical care, I can't physically protect him.  Of course that day has to come eventually, but it's hard to physically hand him over to someone else when he's only three years old.) 

I was feeling off-kilter because I always have a hard time with transitions, and this is a big one in the life of a stay at home mom.  The last 3 years, and particularly the last year, I’ve gotten used to filling every minute from 6 am to 8 pm with tasks.  If there’s a spare minute, I spend it on Facebook, but that’s usually while also keeping one eye on the kids or trying to grab a meal or singing Wheels on the Bus.  Now, all of a sudden, I've got some quiet time in my week.  It’s hard to remember how to slow down and use the quiet well.  There are all sorts of things I would like to be doing more of:  reading the Bible and praying; exercising; keeping a cleaner house; reading and writing.  I just need to figure out how to integrate them more smoothly into the daily routine.  One thing that makes this tricky is that the quiet time I’m referring to is when Zoey lays down for a nap while Joshua is at preschool.  This doesn’t happen every day, and someday soon she’s going to switch to an afternoon nap only, so I’m hesitant to grow reliant on quiet time in the morning when it’s soon going to disappear.  I feel a little weird feeling “useless” when I’m still caring for Zoey around the clock, but the truth is that it’s much easier than it was caring for Joshua at her age (because no therapy appts or developmental stuff to work on or meds / tube feeds to administer) and it’s also much easier than caring for both kids at once.  So even when she’s awake and we’re hanging out together, it feels less purposeful because it’s not like there’s a bunch of specific goals and objectives I need to accomplish with Zoey, nor are there a million tasks to get done in between making sure she and Joshua don’t hurt themselves or each other.  I need to learn to just enjoy Zoey without also trying to accomplish a to-do list of tasks as if she is a project to be worked on.  

I think I also feel sad because Zoey is possibly our last kid.  That means that my time with the kids at home is drawing to a close.  Not in the next five minutes or anything – probably not even in the next three or four years – but it’s on the horizon now.  There are many things about this phase that are hard work and drudgery, but there are also things about it that are unbelievably sweet, and it’s sad to think that might be drawing to a close forever.  (Not to be overly dramatic – Kenny and I both agree that the kids get more and more enjoyable as they get older.  The best is yet to come, as they say.)  

The good news is that after a week, I was able to snap out of my funk.  (It helped that the week long monsoon that coincided with Joshua's first week of school finally stopped.)  I'm learning to enjoy my quiet alone time and my one-on-one time with Zoey.  The other thing that helps enormously is that Joshua seems to love school.  He's only attended for two weeks and we can already see a big difference in his speech.  He enjoys playing basketball in the school gym and doing arts and crafts projects (something this mama is NOT good at facilitating at home) and he's made some friends.  I really like both of his teachers and I think it's a very good situation.  So things are looking up!  I just wanted to share my feelings because I know many of you have sent kids off to school, or will soon be doing so, and can probably relate.

Pumpkin and White Bean Soup Recipe

Taken (and slightly adapted) from the New England Soup Factory Cookbook:

Ingredients:
1 big can of pureed pumpkin (or 2.5 pounds fresh pumpkin, cubed and roasted)
1 teaspoon salt
1/2 tspn black pepper
4 Tblspns. butter
4 whole cloves garlic, peeled and minced
1 large onion, peeled and chopped
2 ribs celery, diced
5 carrots, peeled and sliced
10 cups chicken stock
1/2 tspn sage
1/2 tspn nutmeg
1/2 cup brown sugar
1/2 cup grated Parmesan cheese
2 cups cannellini beans
1/4 cup torn fresh basil leaves, for garnish

Directions:
Melt the butter in a stockpot over medium-high heat.  Add garlic, onion, celery, and carrots.  Saute for 10 minutes.  Add pumpkin, stock, sage, and nutmeg.  Bring to a boil.  Reduce the heat to medium, cover the pot, and simmer for 35 minutes.  Remove from the heat and add the brown sugar and cheese.  (Optional:  puree the soup in the pot at this point.  I don't puree because I like my soup chunkier.)  Season with salt and pepper.  Add the cannellini beans.  Stir well.  Serve with basil leaves.

First Day of School

Joshua had his first day of school today.  We've been doing meetings and evaluations and paperwork in preparation for school since April, but I'm still kind of in shock now that the day has arrived.  He's attending a developmental preschool, which meets 5 days a week for 3 hours a day.  It's a language intensive program and his only significant developmental delay is speech, so we are hoping that this will be a good fit and a positive experience for him.

Developmental preschool is offered through the public school system, so this meant that drop off was at the local elementary school.  I had pictured this very emotional scene - both Joshua and I in tears, not quite ready to take this big step - but the reality was (fortunately) very different.  His classroom is all the way at the end of the hall, so we navigated our little crew (me, Josh, and Zoey in the stroller) through the crowd of kids unloading off the buses and teachers directing them to the appropriate classrooms.  When we got to the right class, Josh had a brief moment of hesitation, but his teacher took his hand and showed him where to put his backpack and lunchbox, and that was enough distraction to avoid any tears.

I was feeling a little sad as we said our goodbye, but kept it together as we had to walk back through the long hall of teachers and kids, then had to meet with the school nurse to talk about G-button issues.  While we were meeting with the nurse, they did the morning announcements, which included the Pledge of Allegiance, the national anthem, and a moment of silence.  My mind wandered back to my Constitutional Law class and the lawsuits that have been filed about what those two minutes (of pledge / anthem / moment of silence) should be like and whether they should happen at all.  During the Pledge and national anthem, the nurse stood up and I followed her lead, but neither of us said anything and it was all pretty awkward.  Then the announcer moved on to the school menu, and we continued with our meeting.

I have heard from fellow parents of children with feeding tubes that school districts tend to be overzealous or underzealous when it comes to dealing with feeding tubes.  Our school district is definitely of the more low key variety.  I had to sign 3 forms during school registration in case Joshua gets photographed or filmed, but zero forms in regard to his feeding tube.  We wrote a medical plan in case the tube comes out and included it in the IEP, but that was only because I requested it.  They let me bring a spare G-button and replacement materials to the school, but again, this was only because I requested it.  It's nice that there's not a bunch of loopholes to jump through, but I'm kind of amazed that they don't have a more formalized system in place, as there must be other kids in the school district who have a G-button.

We picked Joshua up around lunch time and his teachers reported that he did great.  It will be interesting to see how he does at drop off tomorrow, now that he knows what this whole school thing is all about, and I don't think we'll have a true sense of how he likes it and what an average school day is like for him until we have completed a full week or two.  But we both made it through the first day, so cheers to that!

I have been very anxious leading up to this day, but I'm feeling a lot better now that school is actually underway.  It's nice to have a few quiet hours in the morning and a chance to give Zoey some one-on-one attention.  It's bittersweet to watch Joshua take the first small step towards independence, but I'm relieved that he handled it well and incredibly grateful that he's doing so well overall.