Tuesday, June 11, 2013

Nate and the Blog

Blogging was awesome when I had two kids.  It was a fun way to share the funny stories and the home improvements and general ramblings percolating in my brain.  It was a hobby that was helpful in a new state with a husband traveling half of the year.  I was consistent, blogging every day, and loved giving myself a deadline.  It made me feel like I had something more than poopy diapers to talk about  Not that I mind talking about poopy diapers.  I blogged daily for well over a year.  It was great.

As I got pretty sick during my pregnancy with Nate, however, the blog was the first thing to go.  Then I broke my ankle when he was seven weeks old.  We didn't have a laptop at the time, so the blog continued to lay dormant. 

When we found we were moving to this house, I was really excited about starting up again, sharing all of our home improvements as we made them {we'd already done a lot to our last house when I started the blog and I hadn't taken many before pictures}.  But life happened.  It got in the way.  It does that sometimes.  At first I didn't blog because we didn't have internet for a few weeks.  Then I didn't blog because I was so busy with the holidays and getting things settled for the kids.  Then I didn't blog because I was potty training Jack. 

Are you getting the picture?

After Nate's illness began, blogging really took a backseat.  I felt like every post should be about him, and frankly, there wasn't too much news to share.  I felt guilty sharing about the house when we had a sick child, but kept taking pictures of our projects and updates for the day I would begin to write again.  After awhile, though, the sheer volume of potential posts from those pictures became overwhelming.  It was easy to just not write when I always felt like the house or the children really needed me more than I needed to write.

But here's the thing.  This little blog of mine has been very helpful to me.  Writing posts about the house helps me to think through financial and design decisions logically.  Writing posts about my kids helps me to view them through the lens of humor.  Writing posts about my faith helps me to grow in it and challenges me to learn more so that I have well thought out positions.  The comments through the blog, facebook, and emails have encouraged me more than you can know. 

I guess what I'm saying is this.  I need to start up this little neglected blog again.  My plan is to write a little each day, which may or may not translate into a blog post every week.  I need an outlet, and this is a good one.  I hope you'll stay with me as I begin the journey again.

On to the important information.  I haven't updated about Nate's condition in awhile.  That's because there isn't much to say.

I struggle with how to describe Nate's condition.  On one hand, as you can see above, he looks great!  He's happy, smiling a lot, looking pretty healthy, if small, and is growing.  On the other hand, his growth rate has drastically reduced recently.  He is nursing poorly and has all but dried me out, but I keep trying because it's the only oral food he gets.  Because of cutting teeth I'm raw and bleeding, but I'm afraid to stop because he might not nurse again if I take a break.  When he pulls the tube out, which he does every couple of weeks, he loses between six and eight ounces each day.  He still won't eat except for the odd seemingly random moment when he'll allow a few tiny bites.

We see three therapists each week.  Each has different things they want me to work on with him multiple times every day, but it's difficult to find the desire because I don't see progress.

Because of the humidity and heat, he's getting a rash under the tape on his cheek.  I know it hurts him and the only thing I can think to do is keep him inside, but that is hard on the other two.

If I were to sum up Nate's condition in a nutshell, I would say that no progress has been made in six months.  Something needs to change.  We are going to try a physiatrist as soon as we can get an appointment.  We are hoping that she may be able to at least steer us in some direction.  Neurological?  Muscular?  I don't know.
Our Gastroenterologist {GI}, whom we love, is retiring, and it looks as though we may have to travel quite a ways to find another.  We don't think Nate has a GI issue, per say, but the tube that the GI inserted is keeping him alive and kicking, so we would like to find a good doctor to work with, and pediatric gastroenterologists don't grow on trees around here.

It is easy for me to become discouraged over this.  It is easy for me to pity myself.  Every single part of my life has been effected by Nate's illness and I sometimes just want my life back.  Woe is me and all that.  But here's the thing.  The feeding tube is an amazing invention that allows our little guy to grow and I am so thankful for it.  He is so incredibly happy and handles the feedings like a champ.  I'm even thankful for his physical delays because if he were rolling around a lot or crawling, feeding would be much more difficult!

My dad once said, "God never promised us Heaven on earth.  He promised us Heaven in Heaven."  In fact, God promised us that this life would hold trials.  We are not entitled to an easy ride.  The beauty in the Plan is that He gives us the tools to "run with endurance the race marked out for us {Hebrews 12:1}," no matter what it holds.

So I'm running and praying for that endurance.  The race seems to be marked with potholes and uneven pavement right now, but if I keep my head up, looking at the finish line, eye on the prize, I never seem to trip.  It's only when my eyes are down, trying to avoid those problems on my own, that I stumble. 

How's that for an analogy?  You can borrow it, Dad.

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