Sunday, August 7, 2016

Continued Struggles

Big brothers are the best.
We're still home, but we're still struggling a bit.  Not quite as much as last week, but not where he should be.

I didn't bag him this week (I know, crazy when that's your "victory") and I only had to resort to the oxygen tank a few times.  But this is taking much, much longer to get back to his baseline than it usually does.  He's also tolerated the speaking valve, but only a little bit.  Again, I'm scratching my head.

Deborah and Nick
So there's been some tough times going on in between my ears.  You know, what next, what if, what have I missed...

BUT on the flip side, he has gotten out and about a bit.  Just not for as long as he normally would.  And I guess, a part of my worry there is that school is (supposed to be) starting soon, and it will be a full day, at least in theory.

Watching from the sidelines.
We also have a glitch there.  See, we STILL don't have a school nurse for him.  It starts two weeks from tomorrow, and ain't no way I'm letting someone walk out the door with him that I'm not confident can handle anything he (or his airway) can throw at them.  Yep, we're getting down to the wire.  So PLEASE, if you know anyone who wants to spend their days with this cutie, send them my way.  They do have to be an RN or LPN to be considered because they're being hired by the school district.  And the hours are roughly 8-4 M-F on the school calendar.  Here is a link to the listing.
Jonny and Katie

Last week we actually made it through a week without any doctor's appointments.  I'd knock on wood, except he's already scheduled for one this week (ears) and two next week (check-up and gum surgery post-op).  Next week, in addition to the regularly scheduled craziness, will bring Make A Wish out to work on his wish, a soccer tournament, and another pancake breakfast, parade, and big brother Matthew's missionary farewell talk.  I'm trying not to think about how that's all going to fit together.
Deborah and Larry

But yesterday and Friday brought outings with big kids.  Friday, he went to a ballroom competition to watch Deborah and Jonny compete.  It was Jonny's first comp in two and a half years, and they looked really good.  Deborah and her Latin partner placed 2nd in their first event and 6th in their second, and she and her smooth partner (1st comp for that partnership) made some cuts as well.  Fun times.

Where did that noise come from?
Yesterday found Aaron supervising at a pancake breakfast at the Highland Fling.  He did pretty well, if I do say so myself.  Food was good, company was fun, and there was a parade at the end of it all.  I do have to say though that he did not appreciate the sirens, again.  We may have to skip the beginning of parades for a while.  Although crying does open up the lungs really, really well.  Poor baby.  He was fascinated with Joseph's big sousaphone.

Making sure we flip those pancakes right.
Thursday, a great guy came out and did family pictures for us.  It's the first we've been able to do for three and a half years, and there's a very good chance it will be four years before we're all back together again.  And who knows what all will happen in the meantime.  So a huge shout out to Steve Peters of Embre Photography for doing this for us.  I can't wait to see the proofs.

So all in all, it's a crazy, busy, finish up the summer, slide sideways into the school year time around here.

 Summer will end soon enough, and childhood as well.” 
― George R.R. Martin

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