Busy Week!!

You might remember I came home from the hospital a week ago Thursday.  (Almost) just in time to begin the mad dash to the end of the school year.  Yeah, I missed my brother Jonathan's Ballroom Dance Concert, which is too bad.  I love dancing.











But I did make it to Joseph's band concert that night,

 then some soccer games on Saturday...

and a big NICU reunion for the hospital where I was born.  Lots of fun seeing people there, and we even got to see a Lifeflight helicopter!

My brothers thought it was really cool.  I did, too, but I've been in one and Mom says that one ride is enough to cover the whoooole family.  I guess they're out of luck (or in luck if you ask Mom).

We started off the next week with a Cubapolis race at Michael's pack meeting.  We had lots of fun.  I think Michael had the best pit crew there!

Then on Tuesday of next week, we went to Matthew's choir concert at the high school, and then it was Thursday again.








Thursday was crazy!!!  We started in the morning with MY performance.

Yeah, my school did a dance festival.  It was so much fun!  Everyone was so excited (Mom might talk more about that below, this is my turn.)  We just all got out there and showed off our very best moves. The theme was "Michael Jackson" and I got to wear a shiny glove, it tasted pretty good, too.

Then we went over to Westfield where Michael and Andrew were "Getting Down With Mama Goose."  I've never heard nursery rhymes like those, but they were fun!

Thursday night was the big choir concert at Timberline.  Man, those kids can sing!  Joseph had some fun songs that I really liked.  I danced along with them.  It was kinda crazy.




One of the things the kids really like is that if they're in one of the audition choirs, they can come back again and again and sing with their group.

Matthew got to go up and sing "Why Do Fools Fall in Love" with the chamber group, and Deborah and Jonathan sang "Prayer of the Children" with the larger choir.

Everyone NOT in concert black is an alumni.
I don't know how many high school choirs can
draw like this.  This is MIDDLE SCHOOL.

Simply amazing to listen as 150+ kids, many of them having not practiced with this group for years, sang beautifully this wonderful hymn.


Oh, and before the choir concert, I also went to a baseball game.  Then on Saturday, I went to two more soccer games.

Yeah, by Sunday, I was kinda bushed.  But I had fun sitting on the bench between my two brothers.  I think they liked it, too.

Oh, and I also got my four-year-old check-up (a little early).  I'm almost 34 pounds and am 37 inches tall!  I'm growing up!!

The important thing is not how many years in your life but how much life in your years. ~Edward J. Stieglitz

He Did It!

Getting his vest treatment this morning.
He thinks he's at the spa, lucky kid.

Well, he did it!  He made it (nearly) 24 hours at three liters, and so we came home!  He actually went to three liters early last night, and only had a bump when he woke up this morning.

Once we got that ironed out, he went back to his three liters and stayed there.  So this afternoon, we packed up and came on home.

He's still a bit junky, still needs quite a bit of suctioning.  But he's home, I'm home, and it's all good.  And I even made it to Joseph's band concert tonight!

So that's just under a week for nasty ol' rhinovirus, 'cause we went in last Thursday night.  And tonight, I will sleep in my OWN bed.  Onward and upward!!

O bed! O bed! delicious bed!

That heaven upon earth to the weary head.

~Thomas Hood, 

Movin' On Up

Getting his shake vest treatment,
trying to get that gunk out of his lungs.

We made it to the floor today.  Progress has been slower than I thought, slower than I'd like.  Was really hoping for a quick sprint to the finish like our last stay, maybe even beating our record!  It still "might" happen but I'm not holding my breath for it.  On the other hand, it is only day four of our admit.

He's been between five and eight liters most of today on his oxygen, and we're still pulling out lots of nasty, thick, somewhat colored (TMI?) secretions.  I'm thinking (and hoping!) that it's just the tail-end of his cold.  Praying it's not yet another, different bug.

So it'll take us a bit longer to get out of here.  But on the positive side, I've got friends up here.  I always do. The bad and the good (but mostly good) is that we get to know each other, support each other, have the same warped sense of gallows humor about the hospital and our kids.  Trust me, unless you inhabit the medically fragile/special needs world, you really don't want to be part of these conversations.  They can be a bit too graphic for most.  It's good to be understood.  Friends like this are priceless.  It makes it not only bearable, but actually kinda fun to be here.  Hey, you gotta find that silver lining, right?

Most of us don’t need a psychiatric therapist as 

much as a friend to be silly with. 

~Robert Brault

My Favorite Things - Happy Mother's Day

It's four year old smiles and seven year old laughter,

Ten year old hugs and the 13 year old helper,

Fifteen on stage and senior late night talks.

These are a few of my favorite things.

Missionary emails full of joy and thanksgiving,

Twenty and 21 learning the blessing of service,

Twenty-two year old sweet friend who jumps in to help,

These are a few of my favorite things.

It's goals scored and goals saved, and driving hours logged.

It's dancing and singing and instruments playing.

Cooking and helping and learning to love,

These are a few of my favorite things.

When the doors slam,

When the words fly,

When I'm feeling sad,

I simply remember my favorite things,

And then I don't feel so bad.

My heart is full today.  I am so blessed to have the children that I have and the mother that taught me.  I learned so much from her.  She taught me to work hard and find joy in that service.  She taught me that even when life isn't all sunshine and roses, it's always better if you smile.  I love you Mama.  Happy Mother's Day.

If you have a mom, there is nowhere you are likely to go where a prayer has not already been. ~Robert Brault

Okay...

Today has been Okay.  Okay, as in not great, but also not bad.

Aaron made the jump back to his Trilogy vent this afternoon.  But he wasn't able to stay on his home settings.  He started struggling more and more after an hour or so.  He was needing even higher amounts of oxygen than he'd been getting on the hospital vent. So we had to increase his settings.

I guess I let myself get ahead of things.  We all felt so sure that he'd do just fine with the switch.  The plan was to switch him over and spend 24 hours on it and then decide between the floor or home!   Yea!  What a thought!!  And so much faster than ever before.

But that's not quite the reality.  He'll be in here (the PICU) until about 24 hours after we get to his normal home settings, whenever that is, and then we'll see where we go:  home or floor.

So I guess okay really does describe it: fairly good, not very good or very bad.  We're still making progress.  I hadn't really planned (or hoped!) to spend Mother's Day at the hospital.  But that's where we are, and that's okay too.  I will go home for a few hours in the evening.  I need to talk to my kids, and my cell phone isn't set up to call Canada.  So tomorrow I'll get to see/talk to each one of my children, the reason I am a mother.  And that will be more than okay.

You must have long-range goals to keep you from 

being frustrated by short-range failures. 

~Charles C. Noble

Vent Envy

Guess what?  We're baAAack.

We saw the first signs of "something" on Wednesday morning.  I was REALLY hoping it was the result of Utah's bipolar weather.  I mean, when you bounce between highs of 80+ and 40, there have to be repercussions.  I know I've felt them.

By Wednesday night, I figured it might be more.  Thursday morning, he decided to clear up any doubts I still had.  He had a good night, but when he woke up, he was a mess.  I ended up bagging him three times, but he responded quickly.

Also put a call into Primary's trach whisperer to talk about changing his vent settings.  See, if we went in, the very first thing they would do is increase his settings on his own vent, trying to keep him on that one.  And if I could do it at home, well, so much the better!

Well, that bought us another 12 hours.  And he did okay, really, during that time.  Actually got his oxygen down to almost normal for a few of those hours.

But see, last night, Andrew had his Arrow of Light ceremony, and his bridging to Boy Scouts.  Pretty big deal for him, and Aaron's not my only kid.  I'd told Aaron from the beginning that if this wasn't just weather-related, he HAD to wait until at least 9 p.m. on Thursday.

Sweet boy, he waited until 10 p.m., and said, "enough."  I had just dozed off (like JUST dozed off) when his nurse called from his room.  He was maxed out on his oxygen, had his breathing treatment, and still couldn't keep his sats up.

Time for a party at our house with some of his best friends, our paramedics.

When we got to the hospital, he was actually looking really good, but we'd bagged him all the way up here.  They tried the Trilogy (what we use at home) on higher settings, and he lasted maybe three minutes.  Yep, this kid knew what he wanted, the big, bad ICU vent.

So here we sit, and he's doing okay.  He's sleeping, absolutely exhausted.  It was about 3:30 this morning before we got settled.  And I'm hoping that this stay mirrors the last one, and we're out in a week or less.  Play time in the PICU.  Gotta love it.

Life is not about how fast you run or how high you climb but how well you bounce. ~Vivian Komori

Trisomy Siblings Ain't Heavy

Life is busy, crazy, racing toward the end of the school year.  Sometimes I think it's a good thing I don't have a time turner from Harry Potter.  There's no way I wouldn't catch myself coming or going, or even both!

But just because I don't have time to write doesn't mean the thoughts have decided to quiet down and play nice.  It just means I haven't put them on paper (computer?) yet.

So here's a an offering, plus a funny story that came to me third-hand, but I think illustrates how trisomy siblings feel, at least most of the time.

A young man was asked if he resented how much time his sister required, and how his parents' focus was on her.  He went on and on about how they were never at his activities, they were always paying attention to her, he never got one-on-one time and so on.  Parents listening were just devastated.  I mean, we all know our medically fragile kids need a lot of attention, but it also hurts when we feel we're not parenting our other kids enough.

Someone asked a follow-up clarifying question:  "So it's really hard having a handicapped sister?"

"Oh, her??  No, she's fine!  I'm talking about HER!" as he points to his other, neurotypical sister!  Yeah, typical sibling issues, ones you find in any family with more than one child.  

The slideshow is one that I've wanted to do for a long time.  Shortly before Aaron's birth, the boy's chorus at the middle school sang, "He Ain't Heavy, He's My Brother."  I sat there with tears streaming down my face.  The next week, the director and boys kindly recorded it for me.  Several weeks ago, I finally got it put together.  What a blessing these kids are, ALL of them.  Not just the ones with 47 chromosomes, but also their siblings with 46.

Brothers and sisters are as close as hands and feet. ~Vietnamese Proverb