Too Much of a Good Thing, Maybe Not So Good?

Food, we love it!  Some of us love it too much, right?  And we all know that too much food can be as bad as too little.  Bad for the heart, bad for the lungs, bad for the body.  Well, little (or not so little) Aaron, with his challenges shows us that much quicker than others.  See, his body can't compensate for challenges like ours does.  His heart and lungs are already compromised.  Now, I'm not positive that this is what happened, but the circumstantial evidence is pretty compelling.

Here's what had been the norm until the last six weeks or so, pretty much for the past two years.  Aaron has been on 1-2 liters of oxygen, sometimes even less, when he's well.  He had been tolerating, and even enjoying a few one hour breaks from the ventilator per day.  In other words, breathing completely on his own with supplemental oxygen.  Poops (and yeah, this is a gross but important sign of wellness) have been every day or so, soft, easy to pass.  Not a common thing for kiddos with T18, but that was Aaron's norm.

Early in May, he started fussing right around feeding time, and he would calm down once his food started.  So I figured he was hungry.  I calculated his calories per kilo and he was pretty low.  So I increased his caloric intake and in doing so, his fluid intake.

This was also in the middle of playing games with his PEEP, trying to wean him off.  So when he started having issues, and they came on relatively slowly, I figured it was his heart or his lungs, not a comforting thought.  After all, that's where it showed up.

For the month of June, he's been pretty unstable, at least for him.  There was that oh-so-fun trip with lights and sirens where we were bagging him.  He'd been sick earlier in May with a cold that exacerbated his asthma.  And I wasn't the only one thinking it was his lungs.

He needed more oxygen.  Now we were more often three to four liters, and only occasionally bumping down to two liters when sleeping.  His diapers were less frequent and much firmer, much harder to pass.

When we went in for his three-year-old checkup, he registered about 7% for height but 75% for weight.     I'm not sure those measurements were completely accurate, but with a spread like that, it doesn't really matter.  Either he weighs too much, or he's too short.

So last week, we cut his feeds back to what they were originally.   He continued for several days to struggle, about the same way he had been.  Then on Tuesday of this last week, after several days without pooping, it became obvious that we had to "help" him.  It wasn't going to happen on its own.

Once we did, fabulous things have been happening.  He has returned to his normal stooling pattern.  He can lie flat again without dropping his oxygen saturations.  He has dropped his oxygen needs.  A really good thing because we spent the last week about 1000 feet higher in elevation that he's used to.  By the last day, he was needing more oxygen than usual, but that was expected.  The question was if I was going to be able to support those higher needs.  Yep, we found that wiggle-room.  He's much, much more stable.  And when he breathes easier, so do I.

So it's looking like maybe it was a heart/lung issue like I thought, like was scaring me.  But it was brought on by too much food.  And maybe we can work to reduce his vent settings.  Because that fix, reducing his calorie intake, well that's an easy one.  Which is good news for this mama's heart and breath rate, too.

When the world says, "Give up,"


Hope whispers, "Try it one more time."


~Author Unknown 

Learning to Drive, or Hitting that Groove

I've had a few people (okay, a LOT of people) say they can't believe how much we have to do, we remember to do, what we know to do (you get the picture) with Aaron.  I often shrug my shoulders 'cause, mostly, it's become second nature.  Second nature to know at a glance or two if he's just being a monkey with his equipment, or if there's an issue.  Second nature to remember to give his breathing treatments and other meds.  Second nature to hook him to travel equipment and put him in the car.  Even second nature to call 911 for help.  Still wish that one wasn't quite so familiar.


But think about learning to drive a car, and think about where you are right now.  Now, you climb in the car, unlocking it as you approach.  You don't even think as you put the key in, adjust the seat and mirrors, turn it on, look around and shift.  Approaching a corner, you slow and put on your signal, and know just how long it's going to take to slow down and how fast to take that curve.  And you probably fiddle with the music while doing all of this and don't even give it a second thought.  Your mind and body knows what it's doing.  Oh, sure, the occasional road construction may throw you a detour, or sometimes your car makes a weird knocking noise, or there's that car that suddenly appeared out of your blind spot just as you were getting ready to make a lane change.  But for the most part, driving has become instinctual.

But remember when you first started driving?  Even putting on the seatbelt was a bit weird, after all, it crossed from the other side of what you were used to.  You weren't sure about cranking the key.  How far, when do you let go, then what?  If you're like me and have taught teens to drive recently, you may know that you have to tell them to step on the brake when starting the car and keep the foot on the brake until after they shift.  If you haven't done that, you probably don't even realize that you do this.  Taking corners can become an exercise in too fast (four wheels on the road, please!!) or way too slow.

Special needs parenting is a lot like learning to drive.  In the beginning, every beep, every twitch, can be cause for worry.  I love that I was able to do my learner's permit in the hospital with Aaron.

I remember the first time his ventilator was alarming high frequency (breathing too fast, 80 breaths per minute).  I freaked out and grabbed the nurse.  "Why is he breathing too fast?  What's happening?" " Oh, it's probably just some water in the tubes."  She dumped the water out, and yep, he was good.  The next time it happened, I remembered that it wasn't a big deal, but I couldn't remember why or what to do.  By the time we got home, exactly two weeks after getting his trach, I knew exactly what to do when that alarm sounded.  Now that I've got a lot more "road hours" behind me, he never alarms "high frequency."  Why?  Well, it's because I'm so used to the sounds of his ventilator breaths that if he hits 50 breaths per minute, it sounds fast to me and I empty the lines.

So like anything else, there's a learning curve that comes with a medically fragile kiddo.  And just like driving, even after you're very experienced, you have to stay vigilant.  Sometimes there are new roads, new routes that have to be learned.

And it's scary, especially at first, because that's your child's life that is in your hands.  But just like with driving, you learn to get comfortable, you hit your groove.  And then, you can't imagine what life would be like without it.

There are some things you learn best in calm, 

and some in storm.  

~Willa Cather

Dream Night 2013

The first Friday in June is Dream Night at the Zoo, an international project started in the Netherlands in 1996.  It's a fun evening out for kids and families who all too often experience not-so-fun times.  This year, we got to go courtesy of HopeKids.

































It was a great evening, a chance to experience the "normal" things in life.  Fun to see characters dressed up, enjoy a bird show, and get faces painted.  Fun to check out the bears who were checking us out, too.

See, we wouldn't trade our kids with special needs, I don't think any of us would.  But sometimes all the doctor's visits, therapies, and even just the things involved in going someplace make it hard to get out and go.  You learn to readjust your priorities.  I used to say I really wanted a little Miata.  Now my dream car is a handicap minivan.  Hey, you gotta have dreams, right?

Each year everyone with us gets on the elephant scale.  I'm not sure exactly how accurate it is.  I think Aaron and all his equipment have come in at about 122 pounds each time.  And I KNOW he's grown, a lot!

Anyway, he's certainly not a lightweight.  He's about 32 pounds, his vent is 22, and I'd have to guess at where the oxygen, go-bag, suction and stroller all come in.  See why I'm dreamin' of that minivan where I can just roll him in and strap it all down?

At the elephant show

Checking out the face paint.  Hey, I look cool!

There were some super-cool lego displays there.  Check out my personal monkeys, especially the last one.  Something seems to be a bit odd...

It was nice to just get out, see the animals, enjoy a meal, and relax with the kids.  We look forward to it each year.

It is requisite for the relaxation of the mind that we make use, from time to time, of playful deeds and jokes. 
-Thomas Aquinas 

Father's Day and a Birthday Party

Today is Father's Day.  Aaron couldn't ask for a better daddy.  There's a special bond between the two of them that cannot be denied.  They connect in a deep, spiritual manner that can only be observed and felt, but not described.  Someone (actually several someones) said a couple weeks ago that Aaron always seems to act up when Dad's away on a trip.  They were joking, but I'm not.  It's true.  When he's struggling, he always does better when Daddy holds him.  When he's gone, that safety net is, too.

So in honor of Father's day, here's a poster that a trisomy advocacy group, Hope for Trisomy, put together.  You'll find Aaron and Daddy just to the left of the main logo and above the heart word cloud.  It's one of my favorite pictures of them.

Yesterday was also Aaron's birthday party.  Just like his first one, he thought it was sleeping time when it started.  Unlike that first one, he's now willing to wake up and be part of things anyway.  But he wasn't quite his normal smiling self.  Kinda tired.  But that's okay, it happens.  The weather was perfect.  After several really hot days, and with the promise of more starting today, yesterday was really pleasant.  I'll just let the pictures tell the story.  You know, they say a picture is worth a thousand words, and I don't think you want to read that many words from me.  Too long.  Thank you to TJ, one of my son's friends for taking all of these.  He did a great job.

The little sleeper on the left was actually
too big one him when we brought
him home.  We had to roll up sleeves
 and his feet didn't quite reach the bottoms.

My cute nephew

Cute kid.  I think I'll keep him.

This one's kind of cute, too. 

He's not quite sure what it is, or what he's supposed to do.

A fun slideshow through the past three years.  It's about ten minutes long and brings back so many memories.  It's hard to believe he was so tiny and frail.  Still fragile, but no longer tiny, nor frail (does that make sense?).  A special thanks to my sister, Mara, who sings the first song, "Here In My Arms," Songs of Love for the second song, "Aaron's Song," and the Timberline Middle School Boys Chorus from 2009-2010 for "He Ain't Heavy, He's My Brother."

Here's to many more birthdays and Father's Days, little man.  May your spirit and tenacity touch all who know of you.

He who has a why to live can bear almost any how.

  ~Friedrich Nietzsche