Sunday, August 26, 2012

Back to School and a SOFT Picnic!

This past week was Back to School in a big way around here.  Everyone except my bookends (Deborah & Aaron) are in school full time as of this next Monday morning.  Deborah's working full-time graveyard shifts as a CNA and Aaron, well, he just keeps on with his own things.   He's doing sprints off the ventilator twice a day now, for 15 minutes at a time.  I try to space them out by about 12 hours, but the second one is always a little harder than the first.  He breathes a little faster and needs a little more oxygen to maintain himself.  But he keeps on smiling and is a champ about the whole thing.  He's definitely my little champion.

Last Tuesday was the first day of school for the five in public school.

Matthew was the first to leave for 9th grade, followed by Jonathan in 11th grade.

Michael (1st) and Andrew (4th) tore out of here for the bus as soon as I said they could go.  It was a full 20 minutes before the bus was supposed to show up and it's about a three minute walk (run?) to the bus stop.

Joseph was the last to leave for 7th grade.

Wednesday found us moving David into his apartment down at BYU so he could be there for freshman orientation.  Our third to experience this, he had SOOO much less than either of his sisters.  Our first time, we took out the back two benches in our extended van and it was PACKED.  When the second one took off, it was just the back bench pulled out and was nicely full.  David?  No benches out, and it didn't even reach the seat backs.   My girls tell me that's the difference between boys and girls.  Oh, well, love them all.  Anyway, Mary came along to help move him in, which was great because he's on the third floor.  And no, there is no elevator.

Thursday was a day off, at least from moving.  It was also the day that all four of our soccer teams were practicing.  A little crazy to have them all the same night, because they're NOT at the same location, or the same time.  But also nice to only remember one night of practice, at least last week.  Everyone knew they were on Thursday, so when one started getting ready, the other's were reminded, too.  (And so was Mom, for that matter.)

Friday, Mary and I headed down to BYU.  THAT was crazy.  She's in a great apartment complex with what looks like some really fun roommates.

But parking?  Not so much.  EVERYONE was trying to move in.  TONS of monster vehicles like my beast, Suburbans and so on.  And almost no parking.  We were lucky to find a spot about half a block away from her apartment.  But she's on the ground floor (above underground parking that was closed at the time, so 8 steps up) so it wasn't quite as hard as it could have been.  Got her moved in and settled, and headed back home.

Saturday, William had an all-day meeting, so Aaron & I took the kids to their soccer games.  He made it to all three of the games that day.  (Joseph's 1st game is next week.)

Then last night was a highlight of our year.  We were able to go to the annual local SOFT picnic.  It's a fun gathering for families who have been touched by Trisomy 18, 13 and other related disorders.  Aaron was one of three miracles there.  Last year, I didn't get my camera out.  This year, I almost forgot again.  But I did remember towards the end and we got some shots of Ashton (T18, 13 years), Arianna (T13, 6 years) and Aaron, along with Dr. Carey.  LOVED being able to spend time with other families who are or have walked this path.  So many angels gone on before, gone but definitely not forgotten.

Every single thing changes and is changing always in this world.  Yet with the same light the moon goes on shining.  

Wednesday, August 22, 2012

What We've Been Up To: Part II This Weekend

This weekend was a wonderful one.  Matthew had his Eagle Court of Honor and we had three Priesthood Ordinations.  A very special thanks to everyone who helped make all this possible.  There were so many who helped Matthew out on his Eagle Project by donating money, materials and time.  He couldn't have done it without your assistance.

Being sworn in as an Eagle Scout by Jonathan

Eagle Feather Ceremony

Eagle Project Blankets

David was ordained to the Melchizedek Priesthood and the office of an Elder, Matthew was ordained as a Teacher in the Aaronic Priesthood, and Joseph was ordained to the Aaronic Priesthood as a Deacon.  It was so fantastic.  We had all nine kids under our roof at the same time, which hasn't been that uncommon this summer, but won't last for long.

See, David leaves tomorrow for BYU, and Mary on Friday.  Deborah continues to work graveyard shifts.  By next spring, Mary is looking towards a study abroad in London and David will be leaving on his mission in the summer.  Last night, for our last Family Home Evening with everyone for a while, we played Phase 10.  It was great to laugh together and kid around.  I'll always treasure this memory.

Snoozin' at the Court of Honor
Through it all, Aaron continues to light up our lives.  He is "sprinting" off the vent for about 15 minutes each day.  This week, we'll increase it to twice a day for 15 minutes and see how he does.  I just was really worried about pushing him and having him land in the hospital right before all of the kids' activities because Mom caused him too much respiratory stress.  So what do you think?  Does he looked stressed to you?
LOVE the way these kids are standing up for and
waving to our local heros.

A quick side note:  Last weekend was our hometown parade.  It marked Aaron's 3rd parade!  YEA!!  Check out his progress through the years.

1st year, 2 months old

2nd year, 14 months old

This year 26 months (and still
sleeping through it!)
It is good to have an end to journey towards, but it is the journey that matters in the end.
-Ursula LeGuin

Tuesday, August 21, 2012

What We've Been Up To: Part I, Road Trip and Room Makeovers

Joseph's & Michael's room
The last month of summer went by in a flash.  We were SOOO busy.

Joseph's & Michael's room

Andrew's room
Decided the younger boys' rooms needed to be redone, big time!  We pulled EVERYTHING out, cleaned carpets, painted, and then only put things back in that passed inspection.

Result?  Rooms that are nice and fresh and you can actually see the carpet!  (It helped that they all wanted the same color walls.)  We finished just in time for school to start.

The month started out with a long-awaited trip to Arizona, which almost didn't happen.  We got everything ready.  Extra batteries, oxygen, etc and everyone in the car.  All ready to go about 7:30 a.m. on July 28th (okay, so not quite the beginning of the month.  It was close).  Turned the key and..... click.  Nothing.  Yeah, not good.  A fantastic neighbor came over and helped us figure out which of the fuses needed to be reset and an an hour and a half later, we were on our way!
Trying frosting from cousin Camden's birthday cake, yum!

It's been five years since the kids have been down to see my family in Arizona.  A wedding, Gramma & Grampa in China for two years, and then Aaron's challenges kind of got in the way.  We had an uneventful trip (yea!) down there and even had time for a swim before bedtime.


On Monday, I had a great treat!  Little Santi has Trisomy 13 ring and lives in the area.  He and his siblings and mom came over for the afternoon.  He is sooooo adorable.  And so energetic!  He was running all over the place when not in his wheelchair.  Give me so much hope for Aaron someday being able to walk and run.  And his smile was absolutely infectious.  I couldn't stop grinning.

Gimme Five!
What are you guys talking about?!?

All the kids who were with me.  Missing Matthew
who was with Dad at an Order of the
Arrow Conference 
My room at Gramma's
My bed!

Kids and Lots of Cousins!

An Escapee who didn't want to be
in the picture with everyone else.
Fabulous Cake!
Go USA!!
We had a lot of fun swimming, watching the Olympics, and playing with cousins.  The older kids (from Andrew on up) helped out at the Bishop's Storehouse (kind of like a food pantry) with Gramma & Grampa, helping others who are in need of some extra care.  Joseph celebrated his 12th birthday with a fabulous cake made by Aunt Liz.

Feet!!  Me and 6 of my 7 boys.

Saturday morning we took Aaron for a swim (and found our first scorpion!)   Aaron had a lot of fun in the water, but I kept flashing back on that creature, and had a hard time letting go of the "what ifs".

What isn't told in that blog post is what happened that night.  I had been sleeping down in Aaron's room and just getting up for meds and alarms the first several nights.  But knowing that I needed some good rest before driving back home, Deborah started staying up with him a few nights before we left so I could sleep well.  I was sound asleep at 11:30 when my cell phone rang.

"Mom, there's a scorpion down here!"  Yeah, I woke up fast.  As I went down, I thought, I should just get the stick and kill it.  No, Daddy's here.  So I woke up my Dad and he was more than happy to get up and help.  Then he took the blacklight and went looking around the whole house, again.  (They'd already gone scorpion hunting earlier and found some outside, but not inside.)
Me and three of my four wonderful sisters.

Monday we headed back home to continue the room makeover process we started before we left.  It was soooo wonderful to see everyone down there.  I miss my family so much.  I couldn't ask for a better one.

To be alive, to able to see, to walk…it’s all a miracle. I have adapted the technique of living life from miracle to miracle.
-Arthur Rubinstein 

Friday, August 10, 2012


Beginning of our 5 (8?) minutes
We've taken an exciting step!  Last April, his docs approved of me trying to wean him off the vent.  I've felt for a while now that perhaps his problem wasn't so much ventilation as oxygenation.  So we thought we'd try it, up to five minutes a day at first.  BUT I had no way to deliver the oxygen without the ventilator.  We tried it, but only made it about two minutes at a time.  And he got sick, really sick, shortly thereafter.  Almost two weeks in the PICU sick.  That kind of nixed the plan for a while.

Once he got better, and it took another good month after we came home to get back to normal, I didn't want to rock the boat and chance missing out on our vacation to Arizona.  So I just put it all on the back burner for a while.

Two minutes in.  The 93 is his oxygen saturation
rate and the 115 is his heart rate.  The red/green
line on the left side mean it's not the most reliable
wave form, but that's because he was wiggling
so much!!
But today, today I finally called a friend whose son uses the vent at night, but is just on oxygen (I know, "just on oxygen" sounds really weird, oh well) during the day.  She has a nifty device that lets me put oxygen in through his trach without the ventilator.  So we picked one up and brought it home.

How did it go?  Amazing!!!  I was only going to try (up to) five minutes and see how he did.  Actually, by the time everything was said and done, it was probably eight minutes!  And he didn't even really seem to notice much of a difference.

Oh, there were some small differences.  His oxygen levels bounced around a little bit more, but they were quick dips down and then right back up.  His heart rate was elevated, but only by about 5-10 beats per minute, and he was working a little harder to breathe.  But imagine if you've been sitting for a long time (not an hour, like, a year) and then all of a sudden decided to try to run up and down (or walk even!) stairs for several minutes.  Your heart rate and breathing would increase, too.  And I doubt you'd be smiling like he was.

Eight minutes in, right before I switched him back..

So all in all, it looks like we might make some progress here.  I would LOVE to get off the vent for a while each day.  And it would do great things for his lungs and his pulmonary hypertension to not have that artificial ventilation.  It will be a long, slow process, but progress is being made.  And like I realized last year when I was trying to take him from continuous feeds to a 30 minutes every 3 hours schedule, it doesn't really matter if it takes a while.  We'll get there eventually.  And maybe, maybe that light at the end of the tunnel is the sun, and not an oncoming train.

End of the 8 minutes, right before
he went back on the vent.
Still smiling!

This video is about a minute long from the middle of the trial.  Love my bug!!

Tuesday, August 7, 2012

Tugging at Heartstrings

Today we've been moving clothes from one drawer to another, or into a box to wait for someone to grow into them.  No problems at all, until I was pulling out the things Michael has outgrown and put them aside for Aaron.  As I was doing it, and also weeding out turtlenecks (cover the trach and all) it was kind of hard.  I couldn't help wondering if he'll still be around to wear those size 4's and 5's.  He's doing so well, but I remember a little too well fighting for his life this past winter.

On our road trip (post about that coming up soon), my kids introduced me to a new song, or at least new to me.  Called Tears of an Angel by RyanDan, the duo wrote it when their four-year-old niece passed away.  Hauntingly beautiful, it just grabs you and takes your breath away.
Cover my eyes
Cover my ears
Tell me these words are a lie
It can’t be true
That I'm losing you
The sun cannot fall from the sky

Can you hear heaven cry
Tears of an angel
Tears of an angel
Tears of an angel
Tears of an angel.

Stop every clock
Stars are in shock
The river will flow to the sea
I won’t let you fly
I won’t say goodbye
I won’t let you slip away from me

Can you hear heaven cry
Tears of an angel
Tears of an angel
Tears of an angel
Tears of an angel.

So hold on
Be strong
Everyday hope will grow
I'm here, don’t you fear

Little one don’t let go
Don’t let go
Tears of an angel 
Don’t let go

Cover my eyes
Cover my ears
Tell me these words are a lie

Lately, (often?) we've lost some more precious angels, and they weigh on my mind.  Like I said, tugging on heartstrings.

Monday, August 6, 2012


Saturday, August 4th, 2012

Out at the pool, ready for swimming,
AFTER the excitement.
There's a saying that the Lord watches out for fools and children.  Well, I'm the fool, Aaron is the child, and I'm grateful that He watches out for us.  We've been down in sunny Arizona (which isn't actually much warmer than Utah right now) for the past week.  I kept thinking I really needed to get Aaron out in the pool (his feet anyway) ever since we got here.  But in the morning before the sun was too high, and in the evening after it set, I was just too busy (read "lazy") to get it done.  Since we head home on Monday and we don't swim on Sunday, today's the day. 

The now DEAD scorpion
I fed him breakfast a little earlier than normal so it could settle and we could get outside.  Was still feeling lazy.  But about 45 minutes after his feed ended, I got antsy and decided that it was time to stop procrastinating.  Got my swimsuit, went into his room, and started getting things switched around.  Everything was almost done, he was in the stroller, and then I went to pick up his ventilator and put it on the stroller. 

YIKES!  As I picked up the handle, my heart stopped and my voice screamed, "MOM!!!"  There it was, a pale-colored 2 inch creature, creeping over the top of the vent bag and towards the CRIB!  I have to admit, in the back of my mind, there has been the worry of one of these creatures getting near Aaron. 

Mom came quickly, along with a couple of the boys.  The problem with flicking it off the vent so that it could be crushed was we that were afraid we'd lose it in the cords, equipment, and general stuff in the room.  So Dad was called in.  About that time, the scorpion decided it was done with all the excitement and looked for a place to hide:  right INSIDE the vent bag. 

David bagging Aaron, and
doing a great job!
Dad asked if there was anyway to take Aaron off the vent, so we hooked up the ambu bag, turned him over to David to bag him, and I unhooked the circuit.  They took the vent outside, found the beast, killed him, and we got it back inside and together.

Through it all, Aaron just hung out.  LOVE that PEEP valve on his bag.  It keeps the pressures open and even in his lungs so he doesn't even notice it's the bag instead of the vent.  And now David knows that if needed, he can bag his little brother. 
Tonight, Grampa and the boys are going scorpion hunting with a blacklight.  They're kind of excited about it.  I'm just grateful we found the creature. 

Mostly, I'm so grateful for promptings.  I thought it was weird the way I went from trying to put it off longer, mostly 'cause I just didn't want to move to getting up and moving along.  I refuse to think about what would have happened if we hadn't found that beast.  I just can't do that.

Thus saith the Lord God: I will give unto the children of men line upon line, precept upon precept,
here a little and there a little; and blessed are those who hearken unto my precepts,
and lend an ear unto my counsel, for they shall learn wisdom.
2 Nephi 28:30

Sunday, August 5, 2012

Drafting, Trisomy Style

A couple of weeks ago, a speaker in church talked about how others help us, and we help others through challenges.  He is an athlete and used the example of drafting in bike racing.  This is where the racers rotate to conserve energy.  The lead racer exerts the most energy and the others, riding closely, benefit significantly.  Energy savings are  up to 40%.

Similarly, when birds fly in formation, they also save energy.  The lead rotates so that no one bird carries the burden too long.  When one tires, he drops back and another takes his place. 

A recent (really, groundbreaking) study suggests that Trisomy 18/13 parents "draft" as well.  This study (which I wrote about here) had over 300 trisomy parents who said that their life with a medically fragile child was a good life.  Get that?  Not bearable, not okay, GOOD.  It was suggested that perhaps one of the reasons (NOT the only reason) was because of significant support from other parents.  I know I could not do this without the support of family, both those I was born to/married into, but also my trisomy family.
I relied on the strength of others when we told them our baby wasn't expected to live, that he was "incompatible with life."  Family, literally all around the world, joined us in a special fast for our still unnamed, little boy, only 20 weeks into the pregnancy.  

A friend allowed me to rest my wings for a minute when I called her out of the blue and told her I needed help.  I told her first of all two ground rules:  "No questions and no crying."  She repeated my instructions and said, "So what do you need?"  I told her my baby had something called Trisomy 18, I needed a lot of tests in hospitals, and because it was flu/RSV season, my four-year-old needed to be watched, a lot.  "Okay, when's the next appointment?  I have it on the calendar.  Let me know for the rest of them, too."  And by the way, her youngest was already in school full-time.  She just took Michael under her wing and he had a great time.  So much fun that once Aaron was born and he wasn't going over to her house on a regular basis, he really missed her!

Then there's my trisomy family.  I can't express how much help and lift they've given me.  From my first set of questions:  "When do I need help?  Do I call 911?  How will I know?", to heart failure, trach surgery, pneumonias and so on.  They've been there.  They've been there with advice and questions.  They've been there with prayers.  They've called me, even in the midst of their own mourning, to try to help find answers that were stumping doctors.  These are moms whom, most of them, I've never met in person.  But they're my family, my sisters.  And along the way, the family has expanded to other medically fragile parents and kids. 

Now that Aaron is getting bigger, more stable, I hope I am helping some others.  I hope that I can give strength to moms just starting out on this journey.  Because when you're pregnant, it never crosses your mind that something might be "wrong," unless, of course, you've already walked that road.  But when you're told that there is something wrong, terribly wrong, your whole world crashes in.  And to add insult to injury, all of a sudden it seems that wherever you turn you see pregnant women and healthy babies.  And all you want to do is hide, bury your head in the sand, and pretend it will all go away. 

So now that I'm stronger, have been built up by so many others, and have a few races under my belt so to speak, I have the responsibility to take the lead, sometimes.  But knowing that just behind me, when I tire, there is someone else is still a huge pick-me-up. 

So, to everyone who has ridden point for me:  my family, blood or trisomy, my friends who have helped out so much, people who have prayed for Aaron (because those prayers are HUGE), thank you.  You've given so much strength and respite.  And I don't think you can know how much.

The sincere friends of this world are as ship lights in the stormiest of nights.
Giotto di Bondone