brothers

brothers

Wednesday, January 7, 2015

Look At Him Grow (Oh yeah, we took a vacation, too.)

No, Ethan's never seen the movie "Titanic."
Why do you ask?
 
I love to watch Ethan learn and grow and show us new skills.  It's something that I couldn't do for a long time.  And now each time he gives us a peek at something he's learned or says something in a new and different way, I get a big, big smile on my face.

We had an appointment with Ethan's psychiatrist today.  We weren't in her office more than a minute before she said, "He looks like he's grown.  His presence, how he carries himself. It's different."  A little while later she said, "He's a different kid than he was."

Yep.  That's pretty much how we feel about him too.  Ethan's doing well in pretty much every area and it's great to see.

He's sleeping better.  After months of sleeping with us, he's been sleeping in the spare bed in Caleb's room.  Last night he said he wanted to sleep back in the bed in his room, and so he did. He's sleeping through most nights.  If he does wake up, he'll usually come into our bed, but then he'll fall right back asleep without being up for hours and hours.

He's back to being his fun, happy, playful self.  He's happy. And we've gained back a lot (almost all?) of the trust we lost last year.

The Great School Reintroduction is going well.  He came back from a three week break and did really well the last couple of days.

In fact, school is going well enough that I just emailed his teacher and case manager to say that we'd like to start planning to gradually increase his day so that he's doing a full morning, without me there, by the beginning of April.

Our hotel rooms were at Disney's
Pacific NW themed "Wilderness Lodge".
As you can tell from last week's post, he isn't completely healed.  It's not like he's completely forgotten everything that happened last year. But he's much more stable and less reactive than he was last year when the slightest thing could set him off.  Now his triggers are fairly typical.  He doesn't like being told no, he gets cranky when he gets tired.  Normal kid stuff.  But his tantrums are much bigger than most kids.

Overall, Ethan did really well on our trip to Florida last month.  We threw a lot at him: complete change of routine, crowded amusement parks, lots of walking and physical exertion, lots of unpredictability and stressors.  He handled all of it really, really well.  Until he got tired.  Once he got tired, his emotional control went out the window and all the lights and sounds and stimuli just set him off. When he melted down, he melted down big time.  It was ugly, but it was predictable.  (We just wished we learned the lessons more quickly.)

Florida Trip

No family vacation album would
be complete without a few
pictures of parents looking like this.

Forgetting all of that stuff, how was the trip?

For a few days, before the trip, we weren't sure if we were going to make it.  Sarah got hit with the really bad flu that's going around this season.  I've never seen her get hit this hard.  We were pretty sure she was going to recover before we had to leave.  But if anyone else in the house caught it.  I don't think there was anyway we would have made it to Florida.  Fortunately, everyone else escaped unscathed, and we scooted out the door on time.

The trip was good. An almost typical family vacation.

The first part of the trip, the Orlando amusement part stuff, was largely Caleb's trip.  Ethan was really too young to have ideas about what he wanted to do.  So we told Caleb it was completely up to him.  (He's certainly earned the right to set the agenda for a change.)
Universal's Harry Potter Hogsmeade Village was a
fantastic recreation.
Caleb said he wanted to hit Disney's Animal Kingdom and the Universal Studios Hogwarts exhibit.  And so we did.  We all enjoyed Animal Kingdom.  But I think the highlight for Caleb was getting three or four (I've lost count) magic wands from the Harry Potter Hogwarts world.

This picture was taken just before the Disney
water cops busted Sarah for letting a minor
drive the boat.

After a couple of days of amusement parks, we attended our first MPS Society Family Conference.

The US MPS Society holds annual conferences for patients and their families.  Every fifth year, they have the conference in December at Disney World.  It's a big thing for the kids and the families.

With our wonderful friends the Jefferys.
We've actually been planning this trip for few years.  We have some good friends in the UK.  Our boys went through transplant at about the same time.  Each of our kids had complications, Ethan's transplant eventually failed and their son Corey spent close to a year in the hospital with a range of serious complications.   We said then that we'd meet some day and hug and raise a couple of pints together.

So when they told us that they were coming to Disney this December for Corey's Make a Wish trip, that cinched it for us and we started planning.

It was absolutely great to finally meet them in person and spend a little bit of time together.  Unfortunately, with all of us chasing our kids around Orlando day after day, we didn't get to spend as much time together as any of us would have liked.   Such is life.

And that was pretty much the story with the MPS Conference overall.  It was great to meet our MPS family.  These kids, parents and adult patients are all very important to us.  But we didn't to spend nearly as much time with them as we would have liked. 

Overall, the conference energized us--which is the mark of a good conference, I suppose.  Sarah came back ready to increase her work with the MPS Society's legislative advocacy folks.  And I came back thinking of ways to incorporate regular developmental and behavioral supports into the standard of care guidelines for those MPS types with neurological and behavioral involvement.

Grandma & Grandpa's

Pool time!!
After burning ourselves out in Orlando, we drove a few hours south to spend Christmas week with my mother and step-father on the gulf coast.

After a week of of travel, amusement parks and conference time, this was a great break for all of us.  Caleb had fun playing mini-golf.  He and I actually played 54 holes of mini-golf in 36 hours. (Unfortunately, there were no windmills.  I know.  Minigolf without windmills is almost criminal.) And we saw a few alligators--luckily from a distance.

Ethan got his brace off a few days before the trip, so he was thrilled to be able to go swimming while we were in Florida.  And he made the most of it.  Multiple trips to the pool and one chilly-ish, windy afternoon at the beach. 

He'd have gone right on in. But he
couldn't talk mom or dad into joining him.
The boys settled right in at Grandma and Grandpa's, raiding the fridge or the pantry, watching TV, or (in Caleb's case) insisting that we play many rounds of Uno or the game of Life that he got for Christmas.

Christmas was a pretty quiet affair with a couple other relatives coming in overnight and joining in the pajama party that is a Christmas morning when you have young children.  After tearing through reams of wrapping paper and having some play time with new toys, we sat down to a lovely dinner.

It was everything that a family vacation is supposed to be: fun tiring, wonderful time to connect with family and friends, and opportunities to break away from routines and both relax and stretch.