Kid Updates Sept 2017

This post is an update on all of the kids, including a back to school report for both of the big kids, a health update about Josh, and a blurb on baby Ivy.


Zoey school:

Zoey is my kid with big feelings, so I knew the first week of kindergarten was going to be either really great or really hard, and I wasn't sure which way that scale was going to tip.  Fortunately -- she loves school!  I think it really helps that she's watched Joshua walk into an elementary school for the past 4 years, and in particular she watched all the kindergarten events closely last year.  So she's had great anticipation of getting to do her own show and tell, recess, field trips, story time, music concerts, etc.  Since Zoey had never attended any kind of formal school before, I made some effort to prepare her academically (by going through a couple Pre-K workbooks from Costco and by doing several arts and crafts projects) and socially (by having her participate in a variety of activities with other kids and other adults leading - soccer, dance, MOPS, and Sunday school).  But I'm learning that I should have done more to prepare her practically - like, how to open and close your backpack quickly, how to eat lunch in 30 minutes or less - things like that.  However, this viral video makes me think that she's not the only kindergartener with a learning curve on the practical skills:

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Josh school:

Josh is in a combined 1st and 2nd grade mainstream classroom this year.  (Side note:  apparently mixed grade is a very unusual set-up in public schools, as parents had tons of questions about it on back to school night.  I went through all of elementary school in mixed age classrooms, because this was the best way to arrange things with a small student population and small teaching staff, so it's interesting to see this questioned and defended as an educational philosophy, rather than just used as a practical necessity.)  We are hoping this will be good for him especially next year, as he will continue with the same teachers and classroom rules and routines.  Mixed age classrooms also allow (and require) the teachers to be creative and attentive to teaching to a wide range of learning levels, so this can be an especially good placement for student with special education needs.  His teachers seem wonderful, so I'm happy with the placement.  There's always a lot of back and forth between me and the school in the first couple weeks, as new teachers tend to first underestimate his needs, then overestimate his needs, and then after lots of communication and adjustment on everyone's part, we all settle into a comfortable place.

One of my favorite things about Josh is that he gets interested in topics with all his heart and soul.  (It's a little wearing, but also extremely endearing.)  His ultimate favorite topic is bridges, but he also gets temporarily very interested in units at school:  snakes, storms, and most recently, the solar eclipse.  It really helps that, for all the ways school can be challenging, he really loves learning (if the topic is right, haha - but isn't that true for all of us?).

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Josh health:

The two things going on in this category are recurrent sinus infections and possible sleep apnea.  Josh will have a sleep study done at the end of September.  If it shows significant levels of obstructive sleep apnea, then the ENT will remove his tonsils and shave his adenoids (which could also possibly help with the sinus infections).  If the sleep study doesn't show apnea, then no surgery.  I'll be updating on Facebook and would appreciate prayers, as both sleep studies and tonsillectomies are no fun (though, fortunately, they are also very common and low risk).

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Ivy Jo:  

This girl has been such a delightful, easy baby.  She has the biggest, warmest smile, and the happiest disposition.  But as she's transitioning into the toddler phase, I think she also might be our biggest handful as a one-year-old.  She's extremely curious and determined, and as a young toddler, that means she's into everything.  (And right now, her only mode of getting around is army crawling - the intensity will ramp up exponentially once she's walking.)  Even as she gets to be more of a handful, she is a great joy and a wonderful addition to our family.

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.