Thankful for Our Village At Sarah Winnemucca

 

First day of elementary school

Last day of elementary school!

Josh officially ended his time in elementary school today.  Because he started in preschool, he has been attending elementary school for NINE years - most of his life, and more than most of us stay at any one work place these days!  I was so scared to send my tiny, vulnerable, three year old to this enormous school building - his backpack weighing almost more than him as we passed by the upper grade kids who looked like giants.  That first day, I just didn't know how in the world it was going to work at all.  I am thrilled to say that this first, and biggest, chunk of school has gone great:  we have seen him grow so much in every way - physically, emotionally, academically, socially - and it's largely thanks to the village of adults at the school.  So this post is an ode to all of Josh's elementary teachers and teams, with all the reasons I think you're great!

First, we've been so blessed to have great general education teachers every year who come up with creative ideas that make the kids want to go to school and want to learn.  These teachers have done everything from guided art drawings to a passports around the world project to read alouds with great books that the kids can't wait to hear what comes next in the story to making the classroom a town with its own economy and everyone has jobs.  I've loved Josh's teachers so much each year that I always request to get them for Zoey too (and they've been great in teaching her too! - I could write a whole separate post about what a help and encouragement they've been in developing her love of reading and writing - but for today, I'm focusing on Josh's experience).

Second, we've had an IEP team and administrators who have given him a robust IEP that supports all his needs without making it a fight.  I've talked to tons of families both in and out of our school district and know exactly how rare this is.  All the support has been a huge blessing to him, and the without a fight has been terrific for me :).

Third, the school staff really got to know him.  Everyone knew the kinds of topics and books that projects that would be of most interest.  As an example of this:  there were a couple years where Josh was really into bridges, and the Tacoma Narrows bridge collapse in particular.  This bridge collapse from the 1940s was caught on video and is sometimes used to teach college engineering students about aeroelastic flutter - Josh enjoyed watching it and could tell you all about the physics behind it.  Anyway, the school used to do science days, where students would go to different classrooms throughout the day and learn about different science related topics - one of the presentations on offer that year was his favorite, the Tacoma Narrows bridge collapse video.  Josh came home so excited, and I'm not sure exactly which teacher or staff made this happen, but what a wonderful thing.

Fourth, they believed in him and they operated from a growth mindset.  They started where he was at, but also saw where he could go, and consequently, we saw great growth.  It would be easy to go through the motions and provide services without any heart, not really believing in the student's ability to make progress.  We never had this - we always had team members that cared, that believed growth was possible, and we consistently saw progress.

Fifth, the school really prioritized treating everyone with kindness, and consequently we had really good experiences through the years with both staff and students valuing and including my kid.  The former principle deserves huge credit for setting this tone, along with all the teachers and staff for living it out day after day.

I can easily imagine a different school experience where any of these things weren't true - where we had to deal with bullying, or fight for our kid to get the same kind of education as others, or where school was just a miserable thing.  I am extremely grateful to all the teachers who put in the extra care and extra effort (even in challenging covid years!) to make these elementary years so great.  Thank you, from the bottom of my heart.  There really aren't words to adequately convey how much this means to me.

I hope you all have an awesome summer!  Maybe we'll cross paths in the Sierra Nevadas!  I wish you all the best.

Josh Updates Summer 2019

It's been awhile since I updated on Josh, so this end of school year seemed like a good time.

Why less updates?

I haven't been sharing as much about what's going on with Josh lately.  If you look back over my blog history, this is a change.  It's partly because "special needs" life has gotten easier - on the medical front, things feel nearly normal.  Most of the dozen+ specialist doctors have downgraded us to "call when needed".  We haven't had many occasions for the ER, and we have had zero surgeries, in the past couple years.  This is all a huge blessing.

But there are still some challenges, and I've hit the brakes on sharing as much about those because as my kids get older, I feel more and more that information about them is theirs to choose to share or not.  (I'm only talking about hitting the brakes on the more heavy and vulnerable stuff; you may have noticed that the light, fun, positive stuff continues to get shared all the time.)   I feel conflicted about this because I also think there's tremendous value in sharing our stories to change hearts and minds, and to make the world a little friendlier and more inclusive to children with disabilities.  This is one of the reasons I shared so much before, and I respect those of you who do share.  Like so many things in parenting, it's hard to know what's the right thing to do and it's very individualized to the specific child and my opinion on this might very well change over time.  I'm still very happy to have private conversations with anyone who is interested or who might be going through similar things.  (And yes, I feel a little ridiculous to have this level of analysis and navel gazing for a small-readership blog that is mostly limited to friends and family.)  So while I sometimes still share very general things, or successes, or prayer requests, I'm planning to be more limited about how I do this on the Internet.

Having said all that, I do want to give shout outs to two things that are continuing to make a big positive difference for Josh and our whole family:  1) therapies and 2) inclusive education.

Therapies

We currently have a combination of speech and occupational therapy going both inside and outside of school, and while there's been many shifts in the details, there's been a combination of therapists working with Josh for his entire life.   This is very typical for kids with a genetic disorder.  There's some sacrifice in this - for me it means extra paperwork and dealing with insurance, for all of us it means we're busier than we would like to be, and especially for Josh, it means putting in extra hard work outside of the school hours and giving up precious down time / play time.  (The therapists are awesome about minimizing the "hassle" aspect of all of this and about making the experience as fun as possible for the kids, which is definitely not the case with all providers.)

Having said that, the benefits of therapy hugely outweigh any hassle.  Because of all this ongoing support, Josh is able to have so many more fun and meaningful life experiences.  He attended VBS for the first time this year and is currently attending a day camp at Lake Tahoe (complete with camp bus - see pic above!), and there are so many things therapists have helped with - oral eating, changing clothes, asking for help, tolerating sensory experiences, the list could go on and on - that make activities like this possible and fun for him.  We can eat out at restaurants.  He can run around and play with other kids.  He can draw incredible pictures and tell elaborate stories to express himself.  He made sweet cards for Mother's and Father's Day.  All these are things he loves (except restaurants, but they are tolerated), and the skills that allow for these things have been helped along by therapists.

Inclusive Education

Inclusive education means that a child with a disability is included in a mainstream classroom as much as possible, and ideally is given the level of support to make this work well for everyone involved - the student, the teacher, and the classmates.  Our kids go to an elementary school where inclusive education is prioritized.  The principal has a PhD in special education and her knowledge and support of special education students flows down and is embraced by the rest of the staff.  (This is our zoned, public elementary school and while we did do some asking around when figuring out which school zone to move into and followed our teacher friends' advice about which school was the most special ed friendly, we largely lucked into this good situation.)  School hasn't been without bumps, and there's hard work going on by everyone, particularly the general education teachers and Josh.  The teachers are having to come up with creative solutions to challenges, having to communicate exponentially more with parents and other team members, and are dealing with all kinds of extra scheduling and logistics and paperwork.  Josh is working hard to meet the extra social, practical, and academic demands of a mainstream classroom.  Inclusive education is not easy, it's not cheap, it's not the path of least resistance, but it's so incredibly valuable. Here are just some of the possible benefits of inclusion:

• Students with disabilities are given the best chance to learn by having maximum access to the regular curriculum (because many times students are able to take in much more than they can communicate back out);
• Students with disabilities are encouraged to act independently as much as they are able, which builds towards the goal of independent adulthood, which means investing in students with disabilities while they're young can save society money in the long term;  
• All students have the chance to be kind and including, which benefits both those on the margins who are being included and those with plenty of friends who are being includers; 
• All students have opportunities to interact with those who are different from themselves and broaden their lens of what's possible.  This might sound like a warm, fuzzy, meaningless sentiment, but it's really not.  One friendship in grade school may influence who you decide to hire, how you run your church, who you befriend as an adult, how you vote, and how you conduct yourself with neighbors and co-workers and everyone else you encounter in the world. 

We are so grateful that our school makes inclusive education a priority.  And all those valuable life experiences listed above - VBS and camp, friendships, increasing ability to write and draw and express himself - the inclusive school experience definitely also contributes to the ability to participate in and enjoy life.

So in summary, things are going well for J, and we owe a lot of that to our therapists and school.  And now we are all glad to be enjoying summer!

Why I Participate in Awareness Days

Example awareness meme, also a plug for a great organization!

If you have been Facebook friends with me for awhile, you may have noticed that I frequently post about special needs awareness days, such as the picture in my profile right now (if you're reading this in the week I post it), or like this meme to the left.  I also post frequently about various things in the special needs world...pictures of our appointments, articles about IEPs, and so much more.  Why?

Part of it, as with all things social media, is for attention.  (I don't mean this accusatorily - I post stuff daily, so whatever finger might be pointing at you the reader with this statement, there are four big fat fingers pointing back at me.)  But sometimes I'd rather not have the attention for this particular thing.  It's always fun to post pictures and get likes from a day at Lake Tahoe, but it's not always fun to draw attention, yet again, to the special needs stuff.  Sometimes it sounds very appealing to fly under the radar with these kinds of things.  Here is why I post about awareness days and doctor's appointments and all the rest of it anyway:

• Education - It helps you know how to support me, and possibly also how to support those close to you who have a loved one with some kind of disability or special needs.  It gives you a picture of what we might be thinking about and how to talk to us.  I *welcome* conversations about the special needs world and I am not easily offended if you don't know the exact words to use :).
• Personal Sharing - When I post about appointments and milestones, it lets you celebrate or mourn with me.  If people want, they can pray for us.  It might give you some insight into why I'm looking extra happy or extra frazzled on a particular day.  There are things about this life that can feel very lonely, and it helps tremendously to be able to share it.  
• "Shine Bright" - when Josh was first born with lots of health difficulties (here's his story)(here's Kenny's excellent book about his story), and then again when he got his genetic diagnosis, it raised lots of questions about what his life was going to be like.  At both of those times, I wish I could've seen into the future how much good is in his life.  He's happy, he gets to do lots of fun and normal stuff, he's learning and growing, he gives and receives love - although there are struggles and extra appointments, it's a good life.  I hope this message reaches a few people who need to hear it - if you get a prenatal diagnosis of a genetic disorder, if your child receives a genetic diagnosis - there is so much beauty and goodness in this life.  (And if it would help you to talk to someone, I would love to be that person.  If you're not ready to talk but want prayers, I would also love to be that person.)  
• For decision makers - If you are on the school board, if you are a leader in your church, if you are a leader in your community or part of your local or state government - I hope you see stories like mine from time to time, and they convince you to put more emphasis on inclusion in schools, on creating a special needs program in your church, on funding a job training program for the developmentally disabled, or anything else that might come up in your area of influence.  
• For voters - As health care and disability issues come up in elections, I hope my Newsfeed gives you a story to connect with as you're thinking about how to vote.  
• For my tribe - If you are part of a special needs subculture, everyone lights it up on awareness days.  My Newsfeed is filled with "Shine Bright" profile pictures this week and it makes me smile to see the faces of fellow 4q kids.  It's like we're all sending our bat signal to each other.  

That's why I do all these special needs posts.  Other special needs parents, what would you add?

Special Needs Parenting and Perspective

There's been a few things on my mind lately, all orbiting around the themes of special needs parenting and perspective.  So I'm going to consolidate it all into one post and we'll see how that goes!

Item One:  Balancing Chill with Vigilance

Here is a key ingredient to both good mental health and a strong faith: you don't spend all your time worrying.  One thing that helps cut down on hours spent worrying is the realization is that you're not in control of most things anyway (and, for people of faith, the belief that God is in control).

Not worrying goes *way* against the grain of my natural personality.  When you add in special needs parenting, you get the added (perverse?) incentive that sometimes worrying DOES pay off in a big way.  The more time you spend discussing ideas with other parents, or pouring over medical journal articles, or checking and checking and checking the Facebook groups, the more you increase the chances that you will find the doctor / medicine / sensory solution / diagnosis / diet / therapy / school support / supplement that will improve or possibly even save your child's life.

But, it also means you will worry needlessly about extra things, both things you have identified and things you worry you might have missed.  My latest round of worry for Joshua was the possibility that he had a blood clotting disorder.  I was worried about this mostly because it's common with his chromosome disorder, but also because he has some trouble with nose bleeds and history of a blood transfusion with surgery.

It would be crazy to get a referral to a specialist to check on hemophilia just because a child living in a dessert climate gets nose bleeds -- you would never do that for a medically typical child.  But the nature of having a child with a rare disorder is that you can expect 1) that unexpected things WILL (sometimes) go wrong, and 2) that the doctors (again, sometimes) will NOT be watching out for these things because they're so unusual.  

When we went in to the hematologist, we discussed a bunch of things about Joshua's medical history, the doctor Googled at least 3 things in front of me, and then at the end of the appointment he thanked me for educating him (about the link between 4q deletions and Hemophilia C, and about the latest treatments for Pierre Robin Sequence) - which is cool, in a way, but it also puts a lot of pressure on special needs parents to know their stuff, because doctors need you to educate them when you're dealing with rare.  

The good news in this anecdote is that J does NOT have any kind of blood clotting disorder!  His labs were normal!  But then this begs the question -- was my worrying worth it?  If he would've tested positive, then it absolutely would have been - but he didn't.  This is the example that we're dealing with this month, but new concerns come up all the time, and it's tricky to know how to handle that in a way that's healthy (for me and for Josh).  I would love thoughts on how others strike this balance between not worrying and watching out for the medical things that doctors might miss.  

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Item Two:  My Lent Challenge, Perspective, and a School Update

I'm doing a Lent challenge with my prayer group to turn complaints into gratitude.  When it comes to Joshua's special needs, I am a complaining machine, so this is the place where the rubber hits the road for me, and the place where it would be most helpful to do the exercise and realize all that I have to be grateful for.  Here we go!

The complaint:  I'm tired of Josh having procedures and blood draws and doctors appointments as a constant part of his life.  I'm tired of the stress it causes him and the worry it causes me.  

The gratitude:  I'm very grateful that Josh does not have a blood clotting disorder.  And I'm grateful for other things that tend to come with his syndrome that he has not had trouble with (such as seizures), and for things he was born with that healed on their own with no surgery (such as his atrial septal defect).  I'm grateful that God has protected him through all his surgeries, and provided medicines and supplements to help with other issues.

The complaint:  I'm tired of school being a struggle.  I feel sad that the chromosome disorder causes learning struggles, and frustrated that since school is designed for a typical student, it often doesn't work perfectly for him.

The gratitude:  I'm grateful that he's at a school where the administration, teachers, and staff value and support students with special needs, even (especially?) as the district is strapped for cash.  I'm grateful that Josh likes his teachers and is making forward progress.  I'm grateful that things are going okay with fellow students.  I'm grateful that everyone on his team knows the things that make him excited and use those things to motivate him.

The complaint:  I'm tired of food still being a battle and still needing to be planned in every situation.

The gratitude:  I'm grateful that we have a wonderful private occupational therapist.  I'm grateful that, after YEARS of spinning our tires with eating, Josh is having a huge burst of willingness to try new foods.

And, in areas that continue to be challenging, I'm grateful that God will someday wipe away every tear and make all things new.

My Thoughts on Genetic Editing

In the news this week: scientists have made a major advance towards editing baby's genes in utero in order to prevent genetic diseases.  As someone whose child has a genetic disorder, I have some thoughts on this.

My first instinct is that we shouldn't be messing with genes because:

1.  Can the scientists get it right?  Some of us won't even eat a vegetable that's been genetically modified for fear that messing with the plant's genes is going to cause negative consequences.  (By the way, I'm in favor of genetically modified food, but that's a discussion for a different post.)  If we can't trust scientists to modify our food, then why in the world would we trust them to modify our *babies*?  From the article, it looks like the method they have developed involves cutting out the genes that carry diseases and then hoping that the body grows healthy genes in its place.  I'm no scientist, but that seems to leave some very significant room for error.  And while genetics is getting more advanced all the time, (my understanding is that) the precision with which bodies operate using DNA far outpaces our human understanding of how all this works.  So the pieces of DNA that get cut out could very likely be too big, too small, cutting out some of the essential with some of the faulty, etc.  

2.  What kind of Pandora's Box is this opening?  If you can modify genes to help prevent diseases, you can also modify genes to choose gender, skin color, intelligence - anything about the body.  Are we okay with messing with any of this?  Doesn't this sound a lot like eugenics?  Doesn't this also sound a little Tower of Babel-esque?

3.  Even if it can be limited only to preventing genetic diseases, and can be done 100% correctly, should it be done?

This is the trickiest question, I think.    On one hand:  As a person of faith, I think that God is good and God is sovereign, and that He created this diversity of abilities for a good reason.  I don't fully understand it, but I trust that God knows better than I do, and that there are good reasons for all the beautiful diversity in the world, including genetic diversity.  

On the other hand...I'm glad that I will never have to make this choice about gene editing, because while I do feel like it's a bad idea for all the reasons listed above, it would be excruciating and nearly impossible to decline that choice as the parent, at the beginning of a difficult medical journey.  I love Joshua fiercely, exactly as he is, and I have learned a ton and grown as a person and met some wonderful friends because of his disability -- but despite all that, if someone handed me the "keys to the kingdom" of his DNA that would allow me to fix the missing pieces that have caused all the surgeries, all the medical ups and downs, all the developmental difficulties - it would be so hard not to accept that.  Because the world is built for medically and developmentally typical people, and Joshua's life (especially those first years) would just be easier if he was "typical".  And there are other kids whose genetic condition has impacted them much more severely, including some whose conditions are not compatible with life - when you think about these cases, the analysis doesn't seem so clear cut.  It raises an interesting ethical question about why is this different from other cutting edge medical technology that can prolong life, why is this the appropriate place to draw the line?  Why wouldn't we want to help children have more years of life and less pain?

  As always, I'm interested to hear my friends thoughts, and I ask people to please be gentle and respectful in the comments.  

Josh age 5 health update

I haven't given a Joshua health update in awhile, and the reason is:  he's doing great!  Since moving to Reno, we haven't had any sickness, he's been able to drop a few meds, and he really likes his new preschool / teacher / therapists.  He's adjusting to all our life changes well and he's getting along well with cousins and other friends.  Honestly, this move (both in general and for Josh in particular) is going better than I dared to hope it would.  This blog post has some recent updates at the top and then a more overview type update below.

Recent Updates:

• We took his G-button out last month and it closed in less than 4 hours - isn't the human body amazing?!  This is a great outcome.  Also, he is handling it well psychologically - he doesn't seem to be freaked out that it's gone, he's eating and drinking fine, etc.
• The move to Reno has been great for Joshua's seasonal allergies / asthma, which were getting so bad in Virginia that we weren't able to control them even with a mix of 6 meds, and the next step would have been seeing an allergist.  Because Reno is so dry, we've been able to drop about half those meds and manage things much better, which is a positive quality of life improvement for J.  
• I was a little worried how the school transfer was going to go, since Nevada is a low tax state (great when you're the tax payer, less great when you need government services).  Josh's new school has been great, and I want to give a special shout out to the principal, who seems to approach IEP meetings with the attitude of "what does this kid need to succeed and what can I do to help him get there", rather than starting with the attitude that there are limited resources and only the most dire situations will be reason to loosen the purse strings.  I don't know how she manages the money side of things, but i so appreciate that it feels like we're working together.  
• Our "new" doctors in Reno are actually a mix of mostly his old providers (who are encouraged at how well he's doing now) and a couple new (so far, so good).  The new docs often want to do their own tests for their records (such as hearing tests, VEEG, etc.), so it's taking some extra time and energy to get through this most recent round of doctor visits.  There are a few docs we will eventually need to see in either Vegas, Salt Lake City, or northern California, but fortunately those appointments should occur less than one a year.   
• Josh has a minor urology surgery coming up next week - it's called an inguinal hernia repair.  It's outpatient but under general anesthesia - we would love prayers for no complications and a quick and easy recovery.

Overview Update:
It's got to be a little confusing when I write about how great Josh is doing, or for those of you who see him at church and playdates and family get togethers and in many ways he seems like a "normal" (as in medically and developmentally typical) kid -- but then I also do tons of posts about doctor visits, medical stuff, IEPs, and therapies.  One day he's tearing through the maze at the pumpkin patch, and the next day we're having our Katie Beckett home visit.

So which is it - is he doing great or does he still have a lot going on?

The anwer is:  it's both, at the same time.  (I think many parents of kids with mild to medium affect chromosome disorders would agree with this.)  His scariest and most complicated health issues were all caused by birth defects, and those have been surgically repaired.  His life largely consists of enjoying regular childhood activities like going to the park, playing with friends, etc.  Thanks to the grace of God, really good care from teams of doctors and therapists, and medical interventions like oxygen and the feeding tube and all the surgeries, he's doing really well now.  And while we're very grateful that he is where he is, we still depend on regular help from the doctors and therapists to keep him doing as well as he is.

Why does he still go to doctors so often?

• For the known - Medically, he's got a lot of different things going on.  They are all pretty mild and well managed, thankfully.  We haven't had a hospital admission or ER visit or even so much as a school sick day for several months.  But to keep him healthy, we're checking in with 7 doctors, we're administering medicines and supplements throughout the day, and we're keeping a running list of anything going wrong.  
• For interactions when multiple systems are affected - There are two things to track when lots of systems are affected:
• Figuring out the problem - We notice a problem and have to consult multiple doctors and therapists to figure out what's going on and whether we can fix it.  Often it's more than one thing and nobody's sure exactly what to do, so we try different things until something works or he grows out of it.  (Some examples of this:  getting off the G-tube; falling / balance problems for years when he was learning to walk; looking sideways out of his eyes; severe monthly nausea attacks.)
•  Domino effect - If one problem develops, it can set off a chain of other problems, so doctors are more proactive when Josh gets sick than when medically typical kids get sick.  One example of this -- last year I took both Josh and Zoey in for a sick visit because they both had cough and cold.  It was one of those borderline sicknesses where it's bad enough that you want to get them checked just in case, but you know the doctor is probably not going to do anything.  For Zoey, who was the sicker of the two, that's exactly what happened - they checked her over for 10 seconds and said to call back the next week if she was still sick.  For Josh, presenting with the exact same symptoms of cough and cold, they gave him a nebulizer breathing treatment in the office, a steroid, prescribed an anti-nausea med and a high dose antibiotic, and made a change to his G-tube feeds.  He doesn't get sick too often these days, and he's not nearly as medically fragile as he used to be, but when he does get sick it's just treated differently.  
• For the unknown - With a chromosome disorder, we can expect new health issues to arise more often than for medically typical kids, so we need to do well checks with specialists more often to watch for certain things.  (This is the main reason we currently see neurology and ophthalmology.)

And why all the therapies?

Developmentally, he seems to eventually hit every milestone, but it usually takes extra help (from therapists), extra practice (with us), and just extra time.  Depending on what the skill is and how long it takes to master as compared to normal, this is sometimes a big deal and sometimes a small deal.  (Or, as is often the case, it feels like a big deal when you don't know if / when he's going to master a skill, and then once you see he's going to get it, it instantly turns into a small deal.)  Right now, his skill levels are all over the place -- there's some areas where he's very close to age level (academic skills like knowing his letters, gross motor skills), there's others where there's a significant delay (self-care, fine motor), and then others where it's a medium delay and it's somewhat context specific (speech, social skills).  (And if you're wondering how I know where he's at with all this stuff - it is unreal how often special needs kids get evaluated.  I could probably give you percentiles and paperwork for where he was at in every developmental area for every quarter of his life, starting at birth.)

This part of his care has gotten a lot easier for me now that he's school age and most of his therapies take place at school, but I still spend a chunk of my time communicating with teachers and therapists, trying to figure out if there are toys or activities or therapies or IEP goals that we could add to be helping him more, and figuring out our public and private insurance options to help pay for private therapies.  I wrote awhile back about how important therapists are, and I still can't say enough about how valuable the work of PTs, SLPs, and OTs is.

I write all of this out to give you a better picture of where we are and what Josh's life is like.  As I said above, I think this is a pretty typical situation for kids with mild to medium affect chromosome disorders - the details would be different for every kid, but this is the idea.

The Top 5 Benefit of Children's Hospitals from a Parent's Perspective

Children's hospitals are a popular cause to support, whether it's rounding up your change at the grocery store or writing a six figure check.  (Or a pro-athlete photo op?  But I digress.)  If you're anything like I was six years ago -- meaning, someone who never had a reason to spend time in a children's hospital - you have a generally warm and fuzzy feeling about children's hospitals, but probably have never stopped to think about why they exist, or what benefit they provide that is any different from a regular hospital.  So for those who are curious, I am writing a top 5 post about the benefits of a children's hospital from the perspective of a special needs parent:

1.  Expertise - Joshua's two main diagnoses (4q deletion syndrome and Pierre Robin Sequence) are extremely rare - when we tell them to residents or new doctors, the docs often whip out their Smart phones to give themselves a quick refresher.  For kids with rare conditions or complicated health needs, it is better to be at the place that is a magnet (often for hundreds of miles around) for other kids with these same complicated health needs, because then the doctors will have a much better idea of what's going on and what to do for you.  When Josh was born, the Reno docs decided to fly Josh 500 miles away to a children's hospital for this very reason.  On vacation, when we have occasion to visit an ER or Urgent Care, they almost always ask me why I didn't just take him to the Children's hospital - even when there isn't a children's hospital in the same town.  Both parents and doctors feel better having medically complex kids cared for by pediatric experts, and these docs are usually housed at children's hospitals.

2.  Electonic Doctor note sharing / Teams - When your child has multiple specialist doctors, it really helps if they can see each other's notes and talk face to face about the best way to handle a situation.  For example, it was helpful to have our ENT (who interpreted sleep study results) talk directly to the craniofacial surgeon (who repaired Josh's cleft palate) about how the palate repair would affect Josh's ability to breathe.  It was helpful when multiple surgeries needed to be done around the same time and the doctors could coordinate so we just had one anesthesia and one hospitalization.  When your child's pediatric specialists are not affiliated with a children's hospital, then they often rely on the parents to communicate what's going on with the child - and while special needs parents often become extremely knowledgeable about their child's condition and do an adequate job of filling the different doctors in on developments, we just can't communicate things the same way as two doctors talking directly to each other.

3.  Decor / Child Life -  For Josh, it makes a huge, positive difference in his anxiety level when as much as possible of the hospital sensory experience is designed to be child friendly and soothing.  When the lobby is decorated in child friendly colors, there are cartoon animals painted on the walls in the exam room, there are volunteers playing live music out in the corridor, and there is a train table in the pre-op waiting room.  When the TVs for admitted patients have multiple cartoon channels and the Child Life department has extensive toys and books available for kids of all ages and abilities.  Similarly, it makes a big difference when doctors are willing to take a minute to help make the kid comfortable - introduce themself, let them touch the stethoscope, explain what will happen next - before they dive into the exam.  And it seems like prioritizing the comfort of the kid over absolute maximum efficiency happens more often at children's hospitals than elsewhere.

4.  Convenience - Josh currently sees 7 doctors at least once per year (for those who are wondering:  ophthalmologist, neurologist, ENT, plastic surgeon, GI, pulmonologist, and pediatrician), and a few others from time to time as things come up (geneticist, orthopedist, dermatologist, urologist, developmental pediatrician, and pediatric surgeon).  This means we're going to the doctor dozens of times per year just for well checks.  If all the doctors are housed under the same roof of a children's hospital, I learn pretty quickly where I'm going and how long it will take to get there and what the parking situation is and how long to expect to wait and whether they have a coffee shop, etc.  If the practices are scattered all over town with different staffs and situations in each place, I have to spend a lot of extra time figuring out logistics and leaving buffer time (in case this is the office that runs right on time rather than consistenly an hour behind).

5.  Billing - That long list of doctors above means we run up a bill pretty quickly each time our health insurance year starts over, and children's hospitals do two things that are extremely helpful with this.  First, they consolidate all the expenses into two big bills - one from the hospital itself and one from the doctor's group - this simplifies (see #4) and it also gives them a good picture of your overall health expenses.  Second, they provide extremely generous, zero interest payment plans as you pay back this consolidated bill.  They are not non-profit in name only - they really do prioritize caring for kids and they don't want financial hardship to be a barrier to kids getting the care they need.  (At least that has been our experience with CHKD in Virginia.)

Those are my top 5.  I recognize that some of these are more compelling than others -- the expertise thing matters a whole lot more than the convenience thing -- but at the end of the day, they all matter, so they all make the list.  Friends, what would you add?

G-Button out!

It's official:  Joshua's G-button is out!

A recent picture of Josh that shows his G-button, at Lake Tahoe.  

We saw his GI doctor yesterday and got the "all clear".  The orginial plan was for me to take it out at home last night, where he could be comfortable, but unfortunately we had a button malfunction and I couldn't get it out.  It's kind of funny to spend 5 years doing everything you can to keep the button in, and then when you're finally ready to take it out, it won't budge.  (It's like ray-ee-ain, on your wedding day.)  So there was some frustration and frantic message boarding on my part (trying to figure out what was wrong with the button), and then resignation that we would need to go back in to the doctor's office.  And then, probably thanks to all my fiddling with it the night before, the balloon on the button burst and it came out on its own!  And bonus:  Josh thought he did it, so he's feeling very pleased about the whole situation.  (I thought the button coming out and not being replaced by a new one was going to be a hard moment for him.) Then, as planned, a gauze bandage went on, and we celebrated with cupcakes with green frosting and sprinkles (Josh's request).

Celebration cupcake.

I've done some posts in the past about Joshua's feeding tube, including why he has a feeding tube, what I wish i would've known about the feeding tube from the beginning, how his eating is still very limited, and the excitement when we first found out that we could stop using the feeding tube.  These posts summarize how I feel about the whole situation:  grateful that Josh had the feeding tube while he needed it, and ecstatic that he got to the point where he no longer needed it.  Today I just want to post some pictures to memorialize the whole experience.

Joshua's first week, hooked up to all the machines in the NICU in Salt Lake City.

Christmas baby!  2 months old.  I got to change the NG tube while staying in a VRBO with the family in San Diego.

Love those little baby smiles.  

Big, beautiful eyes.  He still makes this expression with his mouth when he's unsure about something.  

We were living in Virginia Beach for most of Joshua's early life.  60 ML tube feeding syringes make excellent sand toys.  (This is supposed to be the Nebraska state capitol.)

First day post-op after getting a G-button placed, age 4 months.  No more tube coming out of the nose!

Kenny giving Josh a bath around age 6 months.  Plenty of baby fat, thanks to the feeding tube.

Josh was not orally eating by his first birthday, so mom overcompensated by getting him the biggest smash cupcake in all the land to get his hands and face dirty.  

First birthday bath following first birthday smash cupcake.  This is one of my very favorite pics of Joshua.

Lots of doctors visits, tests, and procedures as part of all of this.  Here is Joshua being a good sport during one of his nine sleep studies.

North Carolina, c'mon and raise up, take your shirt off, twist it round your head, spin it like a helicopter.

Lots of new pretend play ideas, too, including being a doctor...

...tube feeding stuffed animals (this bear had his own Mic-Key button - thanks Judy Corliss!)...

...and doing feeding therapy on the stuffed shark..

Josh proudly showing off his G-button, age 2.

All of us got very comfortable doing regular life activities with the button, including the important evening activity of wrestling with dad.  

Eating is still a challenge, but for the last year, Josh has been able to to eat (and drink) enough to keep growing and stay healthy, so now we get to take the tube out!

I do have 2 prayers requests:
1)  For healing of the stoma (that's the empty hole where the G-button used to be) - that there won't be infections, that if he needs surgery (he probably will) that it will be a smooth and uncomplicated process, etc.
2)  For Josh - he's handling it super well right now, but I think there might be some ups and downs this weekend.  Imagine telling a 4 year old that you're taking out their belly button - this is what it feels like to him.  He's had it for as long as he can remember and it seems to him like a body part.  Prayers for his adjustment to no G-button.

Thank you all for prayers and encouragement along the way.  I'll probably do another blog in a few weeks about how it's all going - but for today, signing off and celebrating with cupcakes!

Moving!

We are less than a week away from the move, so I'm writing one more post and then there might be some radio silence while we get settled on the west coast.  Here are some topics that have come up in conversation, written Q & A style.:

Q:  Wait, didn't you just buy a house in Virginia?
A:  We did just buy our house 6 months ago.  Fortunately, there is a robust rental market in Virginia Beach and so we were able to rent our house out pretty quickly.  The tenants, who we really like, signed a 5 year lease.  So that worked out as well as it possibly could have, considering the circumstances.  Thanks to anyone who prayed about this for us.

Q:  How are you getting across the country?
A:  The kids and I are flying across the country next week.  After we leave, Kenny will pack up the house, clean it for the renters, and then drive across the country.  (Awesome husband award!!)  He will pack our stuff into a storage box (like a POD but different company), which will ship out to Reno and wait in storage until we find a home.  We will stay with Kenny's parents until we find a place to live.

Q:  How's it going getting Joshua's school / care switched over?
A:  The school switch, to my surprise, could not have been easier.  I e-mailed the woman in charge of Reno's special education preschool program with a copy of his current IEP, and she agreed to enroll him in the appropriate school under the terms of his Virginia IEP.  We are going to wait to start him in school in Reno until August, since this move is going to be a massive transition, and in the meantime he will get some private occupational therapy and some extra quality time at home with me and Zoey!  The kids are at a very sweet age right now, both individually and as a sibling unit, so this will be a fun summer for me to get 4 months with Josh at home.  The medical care switch should be fine, too.  Joshua spent the first 9 months of his life living in Reno, so not only do we know that they have the appropriate specialists, but he's already seen most of them several times.

Q:  How are you feeling about everything?
A:  I'm really looking forward to arriving in Reno.  We're in that funny in-between stage right now: we're finishing things up in Virginia - saying goodbye to people daily, squeezing in last minute appointments, and getting all our stuff in boxes; while at the same time, making plans for our life in Reno.  It's an emotional rollercoaster of excitement and sadness, depending on what activity you're doing in a given moment, and I'm ready to get back on more of an even keel.  I'm looking forward to all the things described in this blog post.  I'm hoping to fit in one more trip to the beach while we're still in Virginia.  I'm also REALLY looking forward to getting the day of flying solo with the kids over with.

If you have any tips about cross country moves or cross country plane flights with young kids, please leave them in the comments!

Joshua's Sideways Look

Joshua saw the ophthalmologist on Friday to get a general check-up for 4Q related concerns and to investigate why he frequently looks out the side of his eyes.  Joshua does not have any major eye problems, thankfully, but the doctor did diagnose him with astigmatism, so as of this week, he gets to start wearing glasses (pictured below).  The hope is that glasses will help him look at things at a distance head-on, fall less often, have a better sense of depth perception, and just generally be more comfortable.  He is not a huge fan of the glasses and it's unclear whether they are helping much, so we will see if this is a lasting change.  

[Note added later:  Joshua saw his neurologist in October 2015, and the neurologist believes that he has oculomotor apraxia.  This means that it's sometimes easier for Joshua's brain to process what he sees if he tilts his head or views it by looking sideways (you can see him doing this in all the pictures below).  For now, nothing needs to be done to "treat" this condition - he doesn't need additional therapy or surgery - we should just let him keep looking sideways / head tilting since that seems to be most comfortable.]

   In any case, the main reason I did a whole blog post to announce that Joshua is getting glasses is because I wanted an excuse to post a gallery of some of the pictures we have of Joshua doing his most classic expression - the sideways look.  Here they are:

With stuffed Buster, checking out real Buster on the couch.  

At Autumn's 2014 summer tea party - here he's playing hide and seek, "hiding" behind the plant.  Photo credit to Hope Hepner.

At the Virginia Beach farmer's market but getting in touch with his Nebraska roots.

At Scheel's in Reno (which is allegedly the world's largest sports store), checking out the bridge shaped aquarium.

In Lincoln for Christmas 2011.

At California Pizza Kitchen in Virginia Beach.  Photo credit to Judy Coleman.

First time playing in the snow, in Lincoln, Christmas 2012.

An Advent Reflection

I've been thinking a lot about Advent this holiday season, and about how experiencing darkness and suffering best prepares you for the hope of Jesus coming.  Don't get me wrong - I enjoy the festivity of the holiday season, including the "frivolous" stuff.  I like driving around looking at Christmas lights, I like when the Christmas drinks appear on the Starbucks menu, I like blasting any Christmas song sung by Mariah Carey, I like a good white elephant Christmas exchange, and I like any excuse to eat excessive amounts of spinach artichoke dip.

But I think it's much more natural to feel sadness this time of year, with the days getting colder and darker.  For people who have lost loved ones or who struggle with depression or who have just had a hard year, the holidays can be an especially tough time.  Others are feeling despair because of the violence and injustice they see in the world.  Others feel loneliness as they don't have dozens of parties to attend and presents to buy.  For me, autumn is a reminder of the time of year when Joshua was born, and it often seems to bring new surgeries or worries or diagnoses - so for me personally, it always seems like a hard and sad time of year.  All these parties and holly jolly music and everyone talking about how it's the most wonderful time of the year (and also the busiest!) can feel very far removed from your reality if you are struggling.

The good news is:  sad feelings are kind of perfect for Advent.  I think those who are feeling sadness this time of year have a much better vantage point from which to understand and appreciate and deeply long for a hope that comes from outside of this dark and broken world.  As I struggle with some of Joshua's stuff, that is beyond what I can help with and beyond what doctors can fix, I feel the need for something outside of this world to come in and bring healing.  I appreciate the hope that came into the world when Jesus was born, and I understand the urgency of the cry, "Come, Lord Jesus."

When everything is comfortable and good...when you don't feel the sadness in your own life or in the world at large...then it can be harder to remember the great hope we receive at Christmas.  So if you're struggling this month, I hope this is an encouragement.  One of the greatest Christmas hymns demonstrates the specific hope that comes to those who know their need (here is just one verse, but the whole song is really geared this way):

O Come, Thou Day-Spring, come and cheer
Our spirits by Thine advent here
Disperse the gloomy clouds of night
And death's dark shadows put to flight.
Rejoice!  Rejoice!  Emmanuel
Shall come to thee, O Israel.

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p.s.  Here are a couple good recent articles on Advent:

• What Church History Taught me about Christmas
• Weeping with the Mothers of Bethlehem

Family Updates

Hello, everyone!  This blog post is a mix of short family updates:

It takes a village

First, thanks for all the support since we received Joshua's new genetic diagnosis!  It's such a blessing to know that people care, so thanks to all of you who have reached out.  As we've started to read more about 4Q deletion syndrome, one theme that comes up over and over is how much of a difference early intervention makes.  It's made me feel a wave of gratitude for the "village" of people who have helped us care for Joshua these first four years.  Thank you to the doctors and nurses who gave him so much crucial medical care.  Thank you to the therapists and teachers who have taught him so many important skills (and taught us how to help him).  Thank you to extended family, church families, and friends for surrounding him (and us) with love.  I'm very grateful to all of you!

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Joshua medical stuff 

Josh got an echocardiogram and blood work done earlier this month, and all the tests came back normal, which is great!  His transition off the feeding tube is also going very well.  His favorite foods are peanut butter, cheese, yogurt, and fruit.  He's gained a few pounds since he stopped using the tube this summer and he seems to be healthier than he's ever been (which might just be a coincidence, but in any case, it can't be a bad sign).   He still has the G-button in place for now and the plan is to remove it in March, once we make it through cold & flu season.  I'm glad the doctors have decided to take it slow with removal, because it's given us time to really feel confident that he can continue to gain weight and stay healthy without it.

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The start of our 4Q journey

We have been researching 4Q deletion syndrome, but there is not a lot of information out there, so our best source of information right now is the 4Q parents group on Facebook.  There is also an organization called Unique that registers the families of children with rare chromosome conditions, and then uses this registry to connect families with others whose children have the same condition. We have registered with Unique and made contact with a few other families whose children have similar deletions.  Interestingly, Joshua is the only (*registered*) person in the world with his exact deletion.  Unique operates out of the UK and it looks like most families who are registered live in the eastern United States or western Europe, so it seems very possible that as more and more people get genetic tests and as more geneticists worldwide learn about Unique and encourage their patients to register, we will eventually learn of at least a couple people who are an exact match with Joshua.  But for now, he is literally our precious snowflake.  (This is my attempt to reclaim that phrase and use it for something positive rather than mockery.)

One of the 4Q brochures said that knowing an individual's chromosome make-up is helpful in explaining symptoms in an affected child, but not so helpful in predicting the effects on an individual. This has been true for us - we've definitely had lots of "aha" moments in the last month, as several things make more sense with this diagnosis, but so far it hasn't been super helpful in showing us exactly what Joshua's future will look like.  We know that certain kinds of problems are much more prevalent in the 4Q population, so we will be periodically testing / watching like a hawk for those.  And it seems like with almost every kind of problem, the earlier you catch it and start treating it, the better.  So hopefully the diagnosis will be helpful to us in that way going forward.

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Joshua School Change

We moved to a new house in October, and since Joshua attends preschool through the public school system, he had to change schools in November.  I was pretty resistant to this change because we were SO happy with his last school - his teacher was great, we could see him making progress all the time, and he had a good friend in his class.  Fortunately, the transition to the new school seems to be going well.  His new teacher is very nice and we are continuing to see him make progress.  But mid-year transitions are always hard, so I would appreciate continued  prayers for J to adjust to this new school and to make new friends.

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Zoey Updates

Zoey doesn't get much word space on this blog because, fortunately, her health and development have been pretty typical, but today I'm giving her a virtual appearance.  Zoey has a very lively, mostly happy but always intense personality.  She is talking up a storm and is full of questions.  One of her favorites is, "Where did mommy go, mommy?"  She and Joshua are great buddies and playmates for each other.  Zoey's hair is finally starting to grow longer, so if anyone wants to send tips on [SIMPLE] ways to style toddler girl hair, I would appreciate it!  Right now I can get away with the Justin Bieber look (is that an outdated reference?), but we're going to need a better hair solution soon.
 
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Family holiday plans

We will be staying in Virginia Beach through Christmas Eve, and then we will travel to Nebraska from December 25 - January 6.  This is the first time we've spent most of December in Virginia rather than traveling back to Nebraska or Reno early, so it's nice to participate in some of the holiday festivities in our town of residence.  We are very excited to see you, Nebraskans, and we will be thinking of you on Christmas, Nevadans!

New diagnosis: 4q deletion syndrome

[Edited to add:  if you arrived on this page searching for information about 4q deletion syndrome, this post will give you better information.]

I wrote last month about how Joshua got tested for chromosomal abnormalities.  The results are in, and it turns out he has 4q deletion syndrome.  (His particular deletion is 32.3 - 35.2.)  For those who would like more information, this link gives a summary of the syndrome.  It is basically a description of all the things we already know about what's going on with Joshua.  (In case there is anyone new to this blog, here is a link to Joshua's story.)  So this is our new "umbrella" diagnosis - it explains why he was born with Pierre Robin Sequence, why he has continuing developmental delays, and why he has an assortment of other minor health issues / unique features.

Here's the good news:

• This doesn't immediately add anything serious to his situation, like a surgery or a bunch of new doctors.  We will have to get a few tests done (echocardiogram and a standard blood panel), but these are things he's had done before, so we know these are very unlikely to reveal serious problems.  
• It's reassuring to get this news at age four rather than at birth because we already know where he stands on a lot of these things.  In particular, we already know that he has developmental delays, but we also know that they are relatively minor, and we've been fortunate to get great help from PTs, OTs, and STs ever since he was in the NICU.  
• We've seen him make great progress in the past year, especially with speech and eating, and there's nothing about this diagnosis that changes all the positive development we've seen him make.  
• This is so obvious it hardly needs to be stated, but:  he's still the boy we know and love, and he's not any different just because we have some new information about his chromosomes.  

Here's what's hard:
I think this is true for every special needs / medically complex parent:   every time it feels like we can just relax, some new thing comes up.  It's a roller coaster.  And this particular diagnosis is a micro and macro part of the roller coaster.  Micro because it's the bump that we are currently facing.  Macro because  the nature of a chromosomal deletion indicates that we will be on this health roller coaster for much longer than anticipated.  Joshua's deletion is very rare (they estimate 1 in 100,000), and research on rare chromosomal conditions is very sparse -- so there is a lot about the future that is a giant question mark.  But there is now an increased possibility that he will face extra struggles throughout his life, especially in terms of learning / intellectual disability.  And that feels pretty overwhelming.  I came across two blogs that were encouraging to me this week, related to all this:  this one, in #3, #10, and #11 talks about some of the lovely things about being a special needs parent, and this one talks about trusting God in the midst of an uncertain future.  We would love prayers for Joshua's long term health, and I would love prayers about trusting God in the midst of this new diagnosis.

Here's the vindication for those of you who use Dr. Google:
We've all heard jokes about people who trusted really lousy information that they got from the Internet.  And on more than one occasion, I have "diagnosed" Joshua using WebMD or Facebook groups, and gone in to our pediatrician to find out I was way off base.  When I call to schedule appointments and I tell doctors that I'm concerned based on something I saw on the Internet, I can almost hear the eyes rolling.  But here's the thing - if your child has a rare medical condition, the Internet (and specifically Facebook support groups with other parents) might be your best source of finding new information, as parents may know more than professionals.  We decided to do genetic testing because of a discussion that came up on the Pierre Robin Sequence Facebook page.  One of the moms sent me the link to a brochure that described 4q deletion syndrome, and it seemed to match a lot of Joshua's distinctive characteristics.  So we got the test done, it turns out he does have 4q deletion syndrome, and the brochure provided to us by the geneticist is the exact same brochure I had read 3 months earlier on Facebook.  Just like with any source, you have to use common sense when determining the reliability of information from the Internet.  But there is a *wealth* of information on the Internet, particularly in networking with other parents, and if your child has a rare condition, this is one of the best ways to get useful information that you can use to advocate on their behalf.

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.