Monday, December 5, 2016

The Most Wonderful Time of the Year

It must be December because life just sped up again.
We claim the fourth guy from the left.

We had a ballroom concert and a cub scout service project.

One of Michael's requirements was to come up with, organize, and carry out a service project.  He chose to collect stuffed animals to donate to our local fire department to give to kids they help.  He really got an amazing response!  You should have seen the look on the paramedic's face when he dropped them off.  Having taken more than one ride with a kid in the back of a rig, I can tell you they will be much needed and loved.
The kids I managed to get to the party.  It's been a
while since I got a family Santa picture. 

We also had our church Christmas party, complete with the big guy in red himself.  Aaron wasn't too sure what to think of him.  It's his seventh Christmas.  Seven!  I still remember sobbing over his cradle on his first Thanksgiving saying I just wanted one Christmas with him.  We almost didn't get that.  He was lifeflighted less than 24 hours later, nearly dying on his way to the hospital.  Seven, such an abundance of blessings.

He's actually not doing as well as we'd like him to.  He's struggled quite a bit this week.

We even went in today for x-rays and labs to make sure he didn't have something nasty that wasn't quite full-blown yet.  Fortunately (I think) he doesn't.  The up side is we're not heading to the hospital.  The down side is we don't know what's going on.

Each day has had some tough moments.  I'm grateful for so much support here in the home.

Without a monster oxygen tank and some nifty devices, he's be in the hospital.  But so far, he'd maintaining at home, and still going out to make memories with us.



"Like Thanksgiving, the spirit of Christmas was never meant to be shut up into a single day."  Robert Flatt

Sunday, November 27, 2016


In Fiddler on the Roof they sing of tradition.  It's what bind them together, gives them their identity, allows them to feel secure in their place.  

We also do the same thing, whether is Monday Family Night, putting up the Christmas tree, back to school shopping, whatever.  Tradition anchors us, and also allows us the freedom to explore, knowing that we have a home base to come back to.  

I remember the first few years after we got married trying to put our two different Christmas morning traditions together.  It was actually kinda hard. 

See, William came from a family that got dressed, had a big Christmas breakfast all together, and then waited for Dad to check on whether the big guy had come.  

At my home, we weren't allowed up until 6:00 (I never slept Christmas Eve as a child, and that lasted well into my adult years, too) and Christmas was the one morning we were allowed chocolate before breakfast.  We could get into our stockings anytime after 6:00, but couldn't touch the rest of the presents.  And cinnamon rolls with chocolate chips were breakfast.  Yum!  

And since there's only one Christmas morning a year, we really needed to find a way to combine them.  Like I said, it took a little while, but when we sat down and talked about how the idea was a happy Christmas morning, with parts from both so we could incorporate both of our childhoods, it actually worked out pretty well.  Tradition, our own tradition.

Then a few years ago, we added in another tradition.  In 2013, Aaron was in the hospital for Thanksgiving, and somehow William wasn't all that interested in doing the big turkey dinner all by himself.  He took a poll, and no one else (at home) was real interested in doing it at all.  So they decided to do a Charlie Brown Thanksgiving.  And they loved it.

Now, before anyone goes feeling sorry for this poor neglected family of mine, understand that I had to fight my kids the next year to get my traditional Thanksgiving back.  (See, there's that word again:  tradition.)  We compromised, a lot like we did with Christmas celebrations, and now we do the big meal with china and crystal on Thursday, and on Friday when we're all exhausted from putting up the Christmas decorations, we have our Charlie Brown feast.  After only a few years, the tradition has been declared.  It is what it is.  Although I've been warned that if we ever disappear up to the Big House on Thanksgiving, the turkey dinner is the one going out the window.  

But I think the most important part of Thanksgiving is having our family around, our crazy, silly, sometimes cranky and tired family.  And while we haven't all been together for Thanksgiving since 2012, we all know where each person is.  And everyone knows what to expect, whether they're here or not.  The traditions bind us together even when we're far apart.  

And I'm grateful, so grateful.

“Tradition is not the worship of ashes, but the preservation of fire.” 

Tuesday, November 15, 2016

One Little Monkey Jumpin' On The Bed

Yesterday, Aaron managed to accomplish something that most children do by the time they're six months old.  He's (almost) six and a half  years.  He fell and bumped his head.

Our little turkey (okay, monkey) rolled over, which is awesome!!  Except he did it on the edge of a table at physical therapy.  And he fell off and bumped his head.  And yep, mama called the doctor, and both mama and doctor figured he's probably just fine.  But the doctor (and principal, and everyone else) said, no more monkeys by the edge of the table.

The table wasn't very high, only about 18 inches, and they put ice on the bump right away.  In fact, by the time he got home from school, I couldn't even tell it was there.

And his brothers have gotten a real kick out of telling him, "no more monkeys jumping on the bed."  Hopefully, they're also taking their own advice.  And really, compared to over the years, this has been pretty minor.  We've had chipped teeth, broken bones and numerous bruises.   I think we've got this.

In other news, he's started another new medication, but we were able to stop an old one. The new one is once a day and the old was twice a day, so we're down one dosing.  Yea!!

It'll be up to 12 weeks before we really see a difference, but he's doing quite well.  He's even back to breathing on his own for a few hours every day.  I apologize for not updating more, but typing is rough when you try to use one hand.  It's hard enough to keep up with my thoughts with two hands. Using one really bogs me down.

In the meantime, he's back to singing songs and telling us what's what (so to speak).  He's back in school and loving it, except the bumpy parts.  Today his school nurse couldn't be here, so he went up to the hospital for some meetings with me.  I tried to get some pictures, but he was playing the "won't look at the camera" game.  I think he almost won.

"Mix a little foolishness with your serious plans. 
It is lovely to be silly at the right moment." 

Thursday, November 10, 2016


These three cuties are all now registered
voters.  Where did the time go?
Along with the rest of the nation, I was shocked and surprised when Trump won on Tuesday.  Along with many I had deep reservations about the man.  And along with many, I had prayed and studied hard before making my decision of who I wished would be in the White House.

That said, I believe (I hope) most Americans also did so.  I don't think anyone went to the polls thinking, "Oh, boy!  I really hope that by voting for __________ I wreck our nation."   I know in our home, we didn't all vote the same way, but we all love our country, and we each put our voice behind the one we thought would do the best job.

But it's one person.  Yes, it's a person with a lot of power now, but it's also one branch of a government that was established by our forefathers with a system of checks and balances.  And I believe in it and I trust it.  And I will continue to talk to and email my representatives, both on the local and national level and express my thoughts and concerns.

But I refuse to think the world has come to an end, or that we are finally being delivered.  In four years, we'll have another opportunity to do the same thing again, although I hope without all the hate and fear mongering.

However, let me share some other stories that have also been in my newsfeeds, ones that I think hit a lot closer to home, and are frankly, in quiet ways, more important and have a longer lasting impact.

On Tuesday, in addition to all the nasty political posts, I saw a picture of a mom with her toddler.  The little girl was lying, "asleep" in a hospital bed.  But it was much more than that.  Tests had just shown that this precious daughter had no more brain activity, and Mom was having to break the news to the siblings that their little sister wouldn't be coming home.

On Wednesday, another friend posted that her husband's tumor had shrunk.

Others are experiencing life events, too.  Little ones admitted to the PICU, others babies being born to happy families.  Wedding anniversaries, birthdays, soccer games.  We've been experiencing the "practice" in the practice of medicine with Aaron as we tweak one thing and then another, and then revisit some old issues in new ways, trying to optimize his health.   Frankly, none of these have been much affected by the polarization that seems to exist in our country right now.

We're all Americans.  We live in a wonderful country.  Are there problems?  Sure. Are we everything we could be?  Of course not.  But we're trying.  And we need to try harder to come together.  To see each other not as enemies, but as fellow citizens who want what's best for our nation.  We have different ideas.  That's okay.  Our great constitution was a matter of compromise, painful, soul searching compromise, but the men who wrote it came together for the greater good.

We need to do the same.  We need to put down the insults and stop hiding behind our fears.  Believe me, I understand them, at least some of them.  My own son could face repercussions from this election.  I'll have to redouble my efforts to advocate on his behalf, to help others see the value in his life.

But truly, I believe that the area we have the most influence, and the area where we are most likely to need to change, is right within our reach, our homes, our communities, our online outreach.  Let's pull together.  Let's be Americans.

"Your success as a family... our success as a nation... depends not on what happens inside the White House, but on what happens inside your house."
Barbara Bush

Thursday, November 3, 2016

He's Happy Again!

Just could not stop laughing at me last night.
He's back.  My happy, playful, silly bug is back.  We've seen glimpses of him, but for more than a month now, that was all.  Brief signs of the child we know and love so much.

This week, we've made some medication changes, tweaked some other things like feeding schedules, had a follow-up appointment with cardiology.  But I think the biggest change was unscheduling an asthma med.  His new heart med can cause bronchospasms, so we've been pre-medicating to avoid those.  But the albuterol (asthma med) can also cause a high heart rate.  It got to the point where he didn't sleep for more than an hour or two at a time, ever.  It's hard to do much of anything when you're that tired.
One of his 15 minutes sleeps.

And I knew I was tired.  On top of everything else, I covered three out of six nights last week.  Plus another child's bus had a (minor) accident coming home from school.  There was another crisis that came to a head.  Plus my right arm has gotten to the point where I can barely use it again.  (can I say typing one-handed is pretty darn slow?  We won't talk about all the typos.  I hope I'm catching most of them.)

Then wild man who should have still been sleeping.

That's how my week started off.  Lots and lots of worries, not much sleep, and was this the way things were going to have to be?

Was this the beginning of a more permanent decline?

I held my own breath as I made the decision to stop the pre-medication, hoping it wouldn't make his breathing worse, and that we could respond in time if it did.
Actually really relaxing, for the first time
in way too long.

Not only did it not make it worse, he slept from 2 pm Monday until 2 am Tuesday, woke for about 30 minutes, and then slept until time to leave.  He napped more Tuesday and yesterday more than usual, but again, it was peaceful, not restless.  And he's back to his active, happy, teasing self.

And me?  Yesterday when he went to school, I went back to bed and didn't get up for six hours, that after sleeping for over eight the night before, and I was still more than ready for sleep by bedtime last night.  I hadn't realized the extent of the emotional drain on my body.  But things are really looking up on all fronts.  I can feel the stress leaving.  We can do this.  We can do hard things.  Just not all the time.  And I think (I hope) we might be getting a breather.

"There is virtue in work and there is virtue in rest.
Use both and overlook neither."
 Alan Cohen

Wednesday, October 26, 2016


Finally, finally I might be able to see it.

It's been a crazy ride around here this past week (month?  year??).

I was realizing that it was five weeks ago on Friday that he went in for his ear surgery.  That went pretty well, aside from his idea that his ear cap was an optional accessory.  Whatever.  I kept him out of school the next week to recover and sent him back on Monday the 3rd.

The cute "little" tank is
actually the full-sized one
he usually uses.  Next to it is
the M tank.
Tuesday the 4th had us back at Primary's for a long 17 day stay. Then it was come home and work and fight to keep him at home.  He came home sick, no doubt about that.  When we came home, the hospital also arranged for us to have a few oxygen M-tanks brought in.  For comparison, the E tanks we usually use (and what you see older people pulling) hold about 625 liters of compressed oxygen.  The M tank is over 3400, so roughly five times as much oxygen.  That's also the size tank the ambulance carries, for whatever that's worth.

And we've used two in the past 5 days.  And we only use them when he's needing more than ten liters of oxygen per minute.  There's been some bagging, pushing 100% oxygen into him.  There's been a lot of vest CPT (chest physiotherapy), a lot of albuterol, a lot of prayers and pleading.  And not so much sleep.

Yesterday I have to admit, I was feeling defeated.  It felt like the movie Groundhog Day.  Each day was slightly different, but I wasn't finding the key to getting out.

But when I stopped and analyzed things, I realized it was getting better.  We hadn't bagged him for a few days.  He was spending less time on the oxygen tanks each day.  We started to space out his CPT and his albuterol.  When he first came home, it was every three hours for both, around the clock.  Thank heavens for night nurses.

Yesterday, he only got his vest three times, and when well, he gets it twice, so very close.  We only gave one extra dose of albuterol.  He still needed 8-10 liters most of the time, but wasn't on the tank at all.

And today?  Well, today he's below five liters of oxygen, and satting just fine, thank you very much.  He's still pretty tired, but you would be too if you thought daytime was for sleeping and nighttime for playing.  I think he might almost be better.  He might even go back to school soon.


"And sure enough, even waiting will end ... if you can just wait long enough."
William Faulkner

Friday, October 21, 2016

Minion on the Move

We made it home!

This hospital stay really started to weigh on Aaron especially.  Each day he got less and less interested in interacting.  Fewer smiles, more tuned out.

But oh boy, put him in his bed in his house?  Wild man returned in force!  He couldn't stop smiling and talking and laughing, and setting off his alarms because he was laughing so hard.  (The ventilator thinks laughing is breathing, and it was too fast.)

He's still sick.  In fact, the snot factory is in full force.  And his oxygen needs have been all over the place, like as low as 1 liter (haven't seen that in forever) and as high as 12.  But we're handling things here at home.  Right this very minute, he's singing in there.  And his smiles make it all worthwhile.

"The best journey takes you home."
Author Unknown