Tuesday, September 27, 2016

Further Adventures

Well, we did make it home on Sunday....

And went back on Monday.

Fortunately, it was very short, like just the afternoon.

Aaron has gotten pretty good about keeping the cup on his ear, except he did pull it and a bandage off Monday afternoon.  And with that bandage, came blood, quite a bit of blood.  So back we had to go to get it checked out and rebandaged.  Fun times, let me tell ya.

But we're back home again.

Recovery can be much more fun when you get to sit back and watch movies on a big screen.  A friend gave him a gift card for some new movies.  Up was the first one he chose, and he is loving it.  I'm loving that he's happy.  And home.

Life is either a great adventure, or nothing.
Helen Keller

Saturday, September 24, 2016


Pre-op photo op
We've been (I've been) on countdown to surgery for the past few weeks.  Thursday morning was T-5 days.  And then suddenly, time sped up.

Actually, we got a call from the hospital Thursday afternoon asking if we wanted a spot on Friday.  Yeah, the next day, less than 24 hours.

My first thought was, "can't do that, there's so much I have to do!"  But my second was, "that's five days that I don't have to worry about him getting sick and making us cancel."  Yep, we took it.

Dropping off one last care package for Matthew
before he heads to Canada on Monday
I'm not sure what it was:  the fact that we'd (finally) made it to surgery after rescheduling three times because of illness, that I just know too much now, or the three funerals I've attended in the past few months for T18 babies, but I was really nervous about this one.

The rock settled in my stomach as I hung up the phone and just sat there as I rushed around, rearranging work schedules, nursing schedules and tried to think of what I was missing.  I put together a final care package for Matthew to drop off early Friday morning and sent out texts to family members, blended up meals to freeze to take with us for him, and threw laundry in.  All the while, the prayer kept going heavenward, "please let this work, please let him come through okay."

Identifying the surgical sites.
He did really well, and I'm so grateful.  It took about three hours, but he couldn't have done better.  I was so glad to see Dr. M come into the waiting room with a smile on his face.

Turns out that his right ear DID have a tube in it still.  But it was completely blocked up by tissue, so essentially useless.  They got it cleaned out and working again, could actually see it moving the way it's supposed to.  There was a lot of junk (debris in the doc's words) in his outer ear, but not as much in the middle ear, which is very good.

Very cute pillowcase that "Jars of Hope" sent to him.
It got here Thursday, perfect timing!
His left ear was a bit of a bigger challenge.  Not only was his mastoid bone diseased, but so was the 2nd of the three small bones in the middle ear, the incus.  In fact, it was in such bad shape, that they had to remove it as well.  His ear canal is now open to the mastoid bone and it will take some time for it to heal.  Hence the lovely cap that he wears over it.  They could not put a tube in that eardrum due to all the infection and removal of the spongy area in the mastoid plus the bone, so we'll have to keep an eye on it, and (my guess is) try to put a tube in at a later date.

Right now, he's got the cap on his ear, mostly 'cause he's asleep.  Our job is to keep it on for the next week.  He's pretty sure his is to take it off and wave it around.  It's a game, and he's winning.

He's still on too much oxygen to be able to come home today, but maybe tomorrow.  For now, his pain is well controlled, he's happy, and I'm grateful.

I found this boat that someone crafted when I went to find something to eat in the Ronald McDonald Room last night.  Figured given all the rain we've had in the past few days, it was very appropriate, not to mention, quite cute.

Wherever I have knocked, a door has opened. Wherever I have wandered, a path has appeared. 
~Alice Walker

Sunday, September 18, 2016

It's That Time!

Can you feel it?  It's that time again.  Days are warm, but nights are crisp.  Leaves are turning colors in the canyons.  School bells ring and sniffles start.

Yeah, sniffles...

Coughs, colds, fevers, flu.


It's actually already here, making itself known.

It's still classified as "low activity," but it's not "minimal" or "absent."

And guess what?  Flu shots are here, too.

They're everywhere.  Doctor's offices, health departments, even your local pharmacy.  BYU is doing a flu shot clinic where they're handing out free t-shirts with the free flu shot this Friday.

I got mine when I went to Wal-mart to pick up some things earlier this week. It's easy, everyone can do it.


Soccer players...

Even Extremely Awesome people.

So just do it.  Yeah, I've heard some people say they feel under the weather afterwards, and one kid did complain that his arm hurt.  But really, for the vast majority of people, it's a minor annoyance.

However, for others, like kids with heart or other transplants, or cancer patients, you're their first line of defence.

And for kids like mine, if you're willing to do it, it can make the difference between this...

And this.

Or this.

Isn't he worth it?

"An ounce of prevention is worth a pound of cure."
Benjamin Franklin

Sunday, September 11, 2016

Family "Things"

This week has been a difficult one for me, emotionally and physically exhausting.

On Tuesday, I was sure Aaron was staring down the road with C.diff again.  Wednesday, Matthew left for his two-year mission for the Mormon church.  There's been a lot going on with trying to keep Aaron stable (2 1/2 weeks to surgery) and get Matthew launched.

And now I've got a big Matthew sized hole in my home.  It's hard.  Not nearly as hard as it will be when Aaron goes "home", but still, I miss him, a lot.

But since we had everyone together this summer, we did manage to get family pictures updated.  A wonderful friend came out and did them for us.  If you're looking for a photographer, especially one used to dealing with kids, I highly recommend embre photo.  Love what he did for us.


 Then there was this last Sunday.  Deborah really wanted to do a family Christmas present.  Except we're going to be missing a family member come Christmas.  So she told everyone that they needed to be here for Sunday dinner.  Didn't hurt my feelings at all.  Last family dinner we'll have together for at least two years, and probably four.  But she wouldn't tell anyone (except Dad and me) why.  Then the unveiling, and lots of laughter.

I've had people tell me we're "perfect," our kids so well behaved, always doing what they're supposed to.  And yeah, our kids are pretty good.  By and large, they're people I like spending time with.  But hey, believe you me, we are very much human.  And remember those "Things" from Dr. Suess?  Yeah, they certainly created a lot of havoc and mahem!  And so can mine.

So while we have the great shots of our family all looking the same way (mostly) and smiling and acting civilized, my kids will tell you that these shots are probably more true to character.

 And besides, they make me laugh.

“The family – that dear octopus from whose tentacles we never quite escape, nor, in our inmost hearts, ever quite wish to.” 
- Dodie Smith

Sunday, September 4, 2016

When You Wish Upon a Star...

 It's been just over a year since we applied to Make A Wish for Aaron.

It was hard, a lot harder than I thought it would be.

To apply is to admit that you child will not grow up, is not supposed to live, may only have a short time left.

It's not as if this was unknown, a surprise, but to admit it, well, that's another story.

It's hard.

Trying to figure out Aaron's wish was also a challenge.  So many travel, go to Disneyland, Disney World, or other places.  Except that only children under the age of 18 and living in the home can go.  And really, I don't know that Aaron would enjoy it.

We finally settled on a big screen TV with the "things" to go with it.  And we got it just right.

He LOVES it!  So far, the only time he's seen a full-sized TV has been in the hospital.  Otherwise, his biggest screens have been a small tablet or a laptop computer.

Thursday night was his star raising party.  He was celebrated by family and friends and we raised a star up to the ceiling in his honor.

When you wish upon a star
Your dream comes true