Archive for the ‘Jones Family News’ Category

Home Stretch!

We’re about one week out from the big day: April 4 Gabriel gets his cast off.  We cannot wait.  It’s like looking forward to Christmas.  It’s such a big deal that the four-year-old can tell you how many days are left, counting them himself.

Gabriel has lost a lot of weight.  The original rash that caused us so much trouble was doubly hard to deal with because Gabriel filled his entire cast with no difficulty whatever, which made it very hard for air to circulate and his skin to get better.  It was also difficult for us to get our hands inside the cast to put the cream where it needed to go.  Not anymore.  Gabriel eats very sparingly, and though we ply him with fatty treats – he had pie this morning for breakfast – he’s still markedly thinner than he was.  Some of that will be muscle tone, but a lot of it is that he doesn’t eat much.  We’ve had little success with anything we’ve tried there.

We took him to church today, the first time since the injury.  He wasn’t quiet, but he liked being there.  A couple of people remarked at how thin he was.  We’d be worried, but he’s always been a picky eater, and he’s still got great energy.  There’s only a week left.  He’s not going to starve to death.

He has also discovered mobility again.  He army-crawls across the floor – he loves the tile entryway and kitchen for this – and he rolls over and generally scoots himself around.  Today he also stood up for a bit, which is hard to imagine, with his legs splayed our crablike as they are, but he managed it.  I doubt he’s going to have any trouble with mobility once the cast comes off.  In seven days.  Did I mention that?

He still stinks.  The cast is awful.  But there really isn’t much we can do about it.  We’ve tried all sorts of things, but none of them really work very well.  It’s just something we have to work with and endure.  There have been a lot of those things.

Gabriel is sleeping better.  We have him upstairs now, in his brother’s bed, where he can sleep a bit longer and not get awakened by his siblings getting ready for school.  That’s working.

Something I didn’t mention was that we have been having him wear his 7-year-old brother’s shirts.  Beefers, the aforementioned 7-year-old, seems okay with this.  The larger shirts work better, because they drape down over the open top of the cast, and prevent food and other things from getting down into the cast, where they could cause significant problems.  They’re also easier to get on and off him, which is a bonus for us.

We’re tired.  We’re very ready for this to be done.  But we’ve learned a great deal, and we’re far more sensitive to the problems other parents face, most of which, honestly, are a lot more severe and long-lasting than what we have to deal with.

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The last bill is in, we think.  The ambulance bill came this last week.  It wasn’t as much as we thought it would be.  I’ll line-item the expenses in a post later this week, but suffice it to say that we are incredibly blessed once again.  We’ll have payments of a decent size to make for a long time, it looks like, but we could have been crippled by this and we will not be.  We are not going to be bankrupted.  We can deal.  Your faith and your prayers have worked a miracle here, for which thing I am grateful beyond words.

Poetry and Prose, the Muse, and a Letter to Stephanie

Most of you know I teach a class every week on Scholarship and Leadership to a group of 13-17-year-olds.  The class ranges all over; we study George Washington, Gandhi, Lincoln, and ourselves.  There’s a lot of writing and thinking about how to be whatever it is we want to be.  Today I got a question from one of my very favorite students about motivation, as in, how do I motivate myself?  Apparently, she wasn’t all that keen on writing the last essay I asked for, and struggled to make herself do it.

Boy, do I know that feeling.  But I had an answer.

Steph-

Hmm.  Motivation.  Good question.

There are about a million different theories about how to motivate oneself.  There’s meditation, there’s affirmations (where you say inspiring things to yourself in the mirror), there’s prayer (I’m partial to this one, though I admit it doesn’t always work), and then there’s the only one I subscribe to all the time, as it never fails – just suck it up and do it.

I read a lot of self-help books, looking for answers.  The best one is, of course, the scriptures, but I like biographies of great men and women, and sometimes just inspiring fiction (Card’s books, Dick Francis, lots of others).  I believe that the greatest motivating force in the world is love.  I also believe that ultimately, that is the ONLY durable motivating force in the world, as all things shall fail, but charity (that is, love) never faileth.

But then there’s the problem you’ve already thought of: how do I love writing an essay?  And the answer is, I have no idea.  BUT.  I do know that you love the class.  I know that you love the idea of doing great things, of being the kind of person that your children will admire and emulate, and that a good man will love and cherish.  I know that you love being disciplined, and doing hard things well.  When you’re in your right mind – you know what this means – you love these things.  When it gets hard to write and to read, when you just don’t have any interest in doing what you have accepted the responsibility to do, that is when you have to have faith that when you made the commitment you DID know what you were doing, and that you do want the things you’ll get if you finish.

And then you just sit down (or stand up, whatever) and do what you have to do.  There is no job, no task, no activity, that you’re always going to want to do.  Nothing.  I swear to you, there is never going to be anything that you don’t loathe at some point.  But adults, real adults, they do those things even when they can’t stand to do them.  It’s what gets Mom up in the middle of the night to clean up puke.  It’s what takes Dad out the door in a snowstorm to go to work.  It’s what makes me grade essays when I have three clients calling me wanting status updates on their loans.  It’s what makes me call those clients back at 8pm, because I’m still at the office because I was grading essays.

I have a quote above my desk (I have several, but this one is pertinent). It says “suck it up and call”.  That’s what I do.  I call people.  I hate it.  But that’s what I do because I love the things I get if I do it.  Some days, it’s close.  Heck, some days, the hate wins.  But not every day.  Not most days.  More and more, it’s ME that wins, the real me, that knows how to shoulder responsibility and loves the strain of hard work.  This will be true for you, I promise you.

Just keep going.  Grit your teeth, and move.

You can do it.

Mr. C

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Apropos of this, I’ve written before on how silly – and at points destructive – the modern psychobabble is about “following your Muse” and “doing what you love”.  Don’t misunderstand.  As a man with an active Muse himself, I listen to those whisperings a lot, and I don’t think that’s a bad thing.  But there are days when the Muse tells me to write my novel, and I don’t get to do that, because I made other promises.  It’s hard, but that’s part of being an adult.  My Muse is fascinating and romantic, but she isn’t smart, and she’s definitely not wise.

Old-fashioned virtues, no doubt.  But critically important ones.  All of modern society points us at the carefree and romantic as the only ways to really “live”.  Fortunately, there are enough people left in the world that can see that is nonsense that some things still get done.  There are those that don’t cheat on their spouses, even when the Muse is telling them how hot their secretary is.  There are those that shoulder a pack and a rifle and slog through the mud to get shot at.  Thank a Merciful God.

I don’t believe that I was put here to find what I love to do and do it.  I think I was put here to find what I should do and learn to love doing that.

I love poetry.  But it is prose that makes the world go ’round.

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Gabriel’s rash is mostly better, but now he has fascinating blisters down the front of his cast that we can’t see any cause for.  The cast is wet, though we dry it as best we can (it doesn’t get dried much when I work late, which I’m having to do more and more often now), so I’m sure that has something to do with it, but what can we do about it?

Still no bill from the ambulance.  Is it mentally unstable of me to hope that they’ll forget?

There’s discussion by some people of having a family dance/fundraiser to defray some of the Gabriel expenses.  Is that something that would be of interest?  Who would come to that?

Next post is the long-promised “why I don’t believe in Medicare” one.

Getting closer!

Yesterday marked the T-minus 3 week mark.  Gabriel dumps the permanent fiberglass pants on April 4.

We’ve gotten into a basic holding pattern now.  The rash is under control but not eliminated.  It doesn’t appear to hurt him.  I’ll have Jeanette do a guest post on her experiences with various diaper-rash creams, but whatever she’s doing, it’s been successful.

The cast is damp, but not soaking.  We’ve used a cool/warm hairdryer to dry off the cast and get some airflow going, and though Gabriel hates it when Jeanette does it, he’ll put up with it, and he doesn’t seem to mind it when I do it.  Big problem there is that the noise of it wipes out most conversation in the local area.  But we can deal for half an hour a day.

And the big news is that the bills are continuing to roll in.  We have a decent estimate now of the totality of the damage, and it’s going to be heavy, but not crippling.  We will probably be a bit over $10,000 total gross bill, though we’ll see when the ambulance bill arrives.  We got the massive $5500 whack from Primary Children’s the other day, and Jeanette has still not gotten over the line-by-line insanity of that.  More detail coming in a subsequent post.

The bottom line is that while we won’t be able to pay it all off in one chunk, we will probably be able to allocate funds to pay it every month, depending on how those negotiations go.  Several of you have offered your skills in this area, and we are hugely grateful for this and will certainly accept your offer, once we have everything in hand.

Gabriel isn’t sleeping great – last night he did his usual 2 hour fit, which our home-for-Spring-Break son eventually terminated, God bless him – but he’s sleeping fairly well, so we can, again, deal with it.  He goes down better for me than for Jeanette, which is a great thing for her.

He’s also getting outside now that the weather is okay.  We took our weekly family walk Sunday and Gabriel went with us in the stroller.  We’ve tried wagons, big strollers, all sorts of things, and he likes the tiny little umbrella stroller best.  No idea why.  It isn’t sensible, but there you go.  He loves being outside.  We can also wrestle with him some now, which he likes, and even hang him upside down by the bar between his legs, which I’ll have to get a photo of.

Note: the hospital staff told us not to lift him by the bar.  Then they told us they had to tell us that, and that since you couldn’t get the bar off with a chainsaw, we might as well go ahead.  If anything happens to Gabriel, it is not their fault.

Dozens of you have told us you’re praying for us and sending peace and patience our way.  It’s being received.  You all have some serious Karma built up.  We love you and can’t possibly describe to you how wonderful it feels to be the recipients of so much goodwill and love.  What wonderful friends you are.  How amazed we are by every one of you.

Just another day, show reviews, and The Rash that Ate San Francisco

We knew that this injury was going to change all sorts of things in our lives, but no matter what we thought, we weren’t prepared for the reality.  Maybe, I’m working on this idea, you are NEVER prepared for the reality.  I wasn’t prepared for children, I can tell you, and we had 9 months lead time to work on that.  But that’s probably a post for another time.

Gabriel is not a sedentary child.  He runs around everywhere, like a lot of two-year-olds.  Sitting still is hard for him, but he’ll do it – fortunately he likes TV, especially basketball and kids shows on KBYU.  Apropos of this, in the hope that it will be of benefit to other parents, here are some short reviews of a few of the possibilities:

Word Girl: Cute show, animated in that style that you see so much of these days, where people use computers that could launch the Space Shuttle to make animation that looks like it was created by a 4-year-old.  It’s not heavy on words, despite the title.  Reminded me a lot of Power Puff Girls, and I don’t mean that in a good way.  We use this one to put Gabriel to sleep on hard days.

Word World: Gabriel’s favorite.  I like this one entirely because of that.  It IS clever.  Everything in the world is made up of words, and the main characters, a sheep, a duck, and a pig, with assorted hangers-on like bear and ant, go around having adventures and fixing things by changing letters around.  I find it unwatchable, myself, but as I say, this is the favorite.  Episodes available on Netflix streamed over the web.  Thank goodness.

Super Why: I don’t even know what to say about this show.  Part of me appreciates the cleverness of the concept, taking little animated kids (this show’s animation is actually quite professional 3-D) and turning them into the Super Readers, so they can go solve problems by learning to read.  Part of me thinks the show is the single most annoying thing I’ve ever seen, because it’s one of those incredibly patronizing shows that asks your kid to “interact” with the kids on the screen, where they pause, ask you to say your name, look at you and ask you questions, all that.  But I hear my four-year-old talking to the TV and naming off letters and reading words along with the show.  That’s not nothing, as my favorite TV character once said.  Watch out for the jingles (of which there are several hundred).  They will get stuck in your head.  This is not something to wish for.

The Cat in the Hat Knows a Lot about That: I’m confessing.  I love this show.  Most Seussian knockoffs (this is even worse for Milne/Pooh knockoffs, which are universally awful in almost every respect) don’t work because the writers aren’t capable of being even half as clever as Geisel was, but they imitate the style, and that gives me a rash, sort of like Vanilla Ice rapping.  But this one does it the other way around, going for clever first and style second.  It doesn’t try to rhyme all the time  – face it, Geisel was a master at this, and there are few to match him – but it preserves the whimsical style without attempting to make the show as if Seuss wrote it.  They do learn interesting things, and if I don’t hold much with adventure being the point of existence – a Jedi craves not these things, if I recall correctly – it’s entertaining and I find it eminently watchable, a significant bonus.

Dinosaur Train:  I’ve never been able to get through a single episode of this (“one, two, three toes!  It must be a Therapod!”  Seriously?).  But my kids love it.  It’s not offensive, I just don’t get it, except the part where the real-life paleontologist comes out and explains that we don’t actually know anything at all about any of the creatures we’re animating during the show.  I like that part.  And the jingle is catchy, but doesn’t grate.  A real bonus.

Sid the Science Kid: Cannot. Watch.  We turn it off.  Maybe the kids would like it, but we’re not going to find out.

I’d love to hear yours.  I know my sister loved Phineas and Ferb, but we don’t get into Disney or Cartoon Network shows here.  Except for Boomerang, because of Tom and Jerry, which for some reason my kids could watch all day.

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Gabriel has a flaming “diaper” rash, which is not in the place his diapers go.  It’s in the surrounding area under the cast, where air doesn’t circulate and the cast is wet and slimy.  As hard as we try to keep it dry, it’s just impossible.  We have been doing the following:

  • augmenting the diaper with a dry washcloth to add additional absorbency
  • using two kinds of diaper rash ointment in alternating 6-10 hour shifts
  • drying the cast as best we can by aiming a cool hairdryer into the open parts
  • praying
  • letting him lie on his stomach for a half hour a few times a day

This seems to be helping.  It’s getting better, though I doubt that it will come all better until the cast comes off.  He’s not in any pain from the broken leg anymore, so he can lie on his stomach without pain, but not without eventual discomfort.  Keeping crumbs out of his cast is a difficulty as well, though not as difficult as we thought it might be, because he hardly eats.

And that’s a problem as well, that we’re not sure how to fix.  Gabriel doesn’t want to eat much.  We get a few bites of things into him, but he’s done fast.  He’s eating less than half what he used to (although he was always a picky eater).  He has good energy, though, and seems good.

He is also actually sleeping.  Two nights in a row, all through the night.  He won’t sleep in his bed upstairs, so we end up with him down in his spot on the couch (now fortified with a plastic mattress pad), but at least he’s sleeping and Jeanette and I are feeling a bit more normal.  I’m pretty sure the rash was the thing that was making him sleep poorly.  We couldn’t see it, because for two weeks he couldn’t really move at all because of the pain from the leg.  So I suppose it was inevitable, but it still made us feel like horrible parents.

I wouldn’t trade this.  I get great time holding Gabriel while Jeanette does his diaper and washes him.  It’s a blessed time for me, in spite of it all.  Or perhaps because of it all.  Have to think about that one, too.

The system sucks, but the people…

The medical system is a disaster, especially from the financial side, as I detail here and here.  But there is one part of the system I have no complaints about, and that’s the people.

With only two exceptions, and those are colored by the “necessity” of uncovering abuse where it doesn’t exist, every single person we’ve dealt with has been absolutely great.  Professional, competent, kind, even gentle.

  • The ER staff at American Fork Hospital were exceedingly gentle with Gabriel when they took care of him there.  He was distraught, it was late, everyone was tired, but they splinted his leg with great care, and when they pricked him for his line, they were supremely careful of him and tried everything to help him be comfortable.
  • The ambulance paramedics offered several things to help Gabriel be comfortable, and allowed Jeanette to ride with him to the hospital.  They were obviously sensible of the fact that this was a bad situation for us, and did what they could to make it better.
  • The Trauma staff at Primary Children’s Hospital could hardly have been more courteous or kind to us.  They were faster than advertised at nearly everything, and we ended up leaving there a couple hours sooner than I expected.
  • When it was time to go for Gabriel’s checkup after a week (yep, we’ve made it a week), instead of making us come all the way to upper downtown Salt Lake, they let us go to Riverton instead, about 30 miles closer to home.  They’ve given us suggestions for cleaning and de-smellifying the cast, which have been somewhat helpful.
  • When we were coming to pick up the bill from AF Hospital, because the lady knew we’d have to be quick about it, she offered to bring the bill to the curb and hand it to us instead of making us come in, so that we could get back to Gabriel faster.  This offer by itself tells you a great deal about the people that work there.

Our impression of the medical system has bee greatly altered by these and other experiences.  We know that as messed up as the system itself is, that it is staffed by people that are absolutely the best in the world at what they do.  More than that, they’re great people.  In the days that follow, when I am proposing possible solutions to the medical mess the country is in, I want to make very sure that I’m clear about one thing: I don’t blame the people that are inside the system.  Few to none of them have anything to do with how we got where we currently are, and it is entirely possible that some of them would be hurt in the short term by what I think we have to do to fix it.  Such is not my intent, but I don’t think that anyone is going to come out of this unscathed, anyway.

For now, a hearty thanks to all of the many people that have helped us by performing jobs for us that we cannot perform for ourselves.  We all thank you and are very grateful for you.

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Gabriel slept in a bed in his old room last night, the crib having been dismantled.  He went to sleep far, far better than he ever has, and although he did wake up a couple of times (well, okay, six or eight times) between 12:30 and 4, he slept okay before that and after that.  I haven’t been home today, so I don’t have a report on how he’s done after that much sleep, but last night Jeanette and I did get more sleep than we have been getting, and in our own bed, too, so that’s not nothing.

Melatonin, in response to several recommendations, has been procured, and we’re going to give that a shot as well, and see if it helps him settle.

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We got Gabriel up and sat him near the table.  It required four telephone books and two bungee cords, and I doubt very much if this arrangement would meet any federal safety standard, but as you can see, he loved it.  Halelujah, it was like having our son back again.

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