Sunday, July 29, 2012

We Are Finally Being Heard!

This is a poster that accompanied an article and presentation about our medically fragile kids.  FINALLY, the medical world seems to be starting to listen.  If you're hunting for our picture, go to the top left corner of the banner.  There's this darling red-haired little boy (whom I get to meet this week!) and then diagonally, up and to the left of his picture, is the one of Aaron's 1st birthday party that's also pictured here.  (Mary is missing because she was back east at the time.)

It seems that this study and article, which interviews 332 parents of children with Trisomy 18 and Trisomy 13 has set the medical world on it's ear, or at least got it listening, hopefully.  I was privileged to be part of this study.  

As recently as two years ago, both diagnosis (Trisomy 18 & 13) were on a list that the American Heart Association labeled as being "not recommended" to resuscitate at birth.  In fact, palliative, or comfort care only, was the recommendation for these children.  Many of my friends have been told to just "let them go" and get on with having a healthy child.  This is heart breaking.  It's as if you can replace one child with another.  Not true.  Each is unique and special.

 The study was published in the Journal of the American Academy of Pediatrics and the abstract is found here.  However, without a subscription, you can't see the whole article.

A Billboard helping spread awareness.
Much more telling than the abstract, is a blog post from a neonatologist.  (Link here.)  He is also a researcher at Sainte Justine University Health Center in MontrĂ©al.  He calls the article "disturbing" because it challenges assumptions that the medical profession has held for a long time.  He states that:  "I conclude; we need to rethink how we present diagnoses of serious conditions to parents." and also, "Above all recognize that these babies are human beings who will be loved, who will be cared for, who will leave a positive mark on their families, and who deserve respect."

Another one.  It says, "Doctors said I wouldn't live to see 1.  Now I'm 11!!

And that, my friends, is what we're looking for.  Help us love our babies for who they are.  Don't dismiss them out of hand because they're not going to be rocket scientists or brain surgeons.  Each life has value.  Each soul has worth. 

 Since the article was published, many different news agencies have picked up on it.  This is the article from the Deseret News here in Utah.  Parenting Severely Disabled Kids Can be a Great Source of Happiness.  All I can say is that Aaron sure rocks that extra chromosome.

Remember the worth of souls is great in the sight of God.

Sunday, July 22, 2012

Happy Birthday, Daddy!

Aaron:  Today is Daddy's birthday.  He and I started celebrating by staying up all night, and then sleeping all morning.

My daddy is my very favorite pal.

 I love my mom and my nurses and all my brothers and sisters, but there's just something about a boy and his dad.

Whenever I'm feeling yucky, he comes and holds me and my little body relaxes against him.  Then when the paramedics get here, I'm actually looking pretty good.

In fact, the two times that I've been in really bad shape (Lifeflight from my home once and lights and sirens the next), Dad was out of town.

So we had to have a talk about St George soccer tournaments.  I guess I don't really like it when he goes without me.

Anyway, I'm a lucky kid to have a daddy like mine.  Love you, Dad!

Lo, children are an heritage of the Lord: and the fruit of the womb is his reward.  As arrows are in the hand of a mighty man; so are children of the youth.  Happy is the man that hath his quiver full of them.
Psalm 127:3-5

(I don't know about you, but I think the quiver is pretty full by now.)

Wednesday, July 18, 2012

Unmet Expectations

I know I try to be upbeat and all.  And usually I succeed.  But sometimes, things just get to me.  And then I hide, and I grump.  And most of the time, they're not even that big in the grand scheme of things.  It's the little things, like the pebble in the shoe, that really get me.  It's those unmet expectations that throw me.

I mean, there's SO MUCH that is unknown in my life right now, and has been.  Aaron has proved time and again that he can turn on a dime.  I've told the kids for a long time now that the vacation to Arizona at the end of the summer (yeah, end of summer sounds like a good time to visit the Phoenix Valley, right?) will not be a reality until we pull out.  If it doesn't happen, well, we'll just go on.  We just roll with those things.  Things like broken bones, stitches, pneumonia (sort of roll with that one) and those biggie type things.

But it's the little things, the ones that shouldn't really matter, that bug me, and then it bugs me that I'm bugged.  I know, makes a lot of sense, doesn't it.  Like last Sunday when we got to church and couldn't sit together as a family.  See, there's really only one bench in the chapel where we don't block too much aisle and Aaron is fairly separated from the rest.  And we always try to sit there, but if we don't get there fairly early, sometimes there are others sitting there.  And there isn't any handicap seating designation either, anywhere in the chapel.  So last Sunday, there was room for one parent and one child to sit there with Aaron.  And the rest had to sit somewhere else.  Now, honestly, it was a more peaceful Sunday meeting than usual.  Fewer eeking at siblings and all, with them spread out that way.  BUT it wasn't what I was expecting.

It's kind of like going out to start the car, and it not cooperating.  You just expect it to happen.  Like going to the freezer for your favorite ice cream, that was there the day before, and finding that someone else found it first.  Or planning on going somewhere and finding that there's no one to mind the baby because someone else has had something come up.

Last year, I think it was a full year ago, my DME (durable medical equipment) company changed Aaron's ventilator water.  Same amount of water, same safety, but different bags.  And I DID NOT LIKE IT.  My cupboard where I store it wouldn't quite fit it in the right way anymore.  It ruined several days, until Aaron woke me up to what was really important with another trip to the hospital.  Did I mention that it's the little things that get to me?

So last Sunday, I spent most of the day trying to work through my feelings.  Because I was having a rotten day, and it really was all my fault.  It was my fault I couldn't see past my own idea of "how it should be" and I let it spoil things for me.  And my poor husband could tell I was not a happy camper, and can I tell you, he was so relieved to find out he wasn't the reason for it.  Poor guy.

So what I need to do is figure out how to keep it from happening again, as best I can.  The bishop said he'd talk to the young men who usher and ask them to explain to anyone who sits there that the pew is needed for Aaron.  And I'm going to try to find some handicap signs that he said we could put up on the bench.  That will help others as well, because I know there is at least one other gentleman in a wheelchair,who attends earlier than we do, who runs into the same problem.

But mostly, I'm going to work on my attitude.  I'm going to try harder to remember that the reason I go to church is to feel the Spirit and to take the sacrament and renew the covenants I made at baptism.  None of which, by the way, have anything to do with where I sit in the chapel.

If you don't like something change it; 
if you can't change it, change the way you think about it.  
~Mary Engelbreit

Sunday, July 15, 2012

New Trach!

Rockin' the new trach!
We've got new trachs!  I've never been excited for a trach change before but these new ones are awesome!  His new trach is a flex-end trach.  Like it's name suggests, it's flexible on the end.

My old trach
The old ones came straight out of the neck and the ballard and circuit attached on to it.  So any tummy time or anything like that, and we had to be careful not to push on it.  It wouldn't really hurt in a damaging sense of the word, but it sure wasn't comfortable.  Imagine laying on something hard pushing into your throat.  Ouch!

The biggest problem with the old trachs is that he's getting more mobile.  He's rolling back and forth and trying to roll over.  Now, this isn't really a problem.  It's fantastic on so many levels!  It means he's getting stronger.  It means he's developing more connections in his brain with purposeful movement.  It even means being healthier, because the more he moves, the better he is at getting oxygen down into those far corners of the lungs and into his blood.  (You know, kinda one of the main challenges he has.)  That's why after surgery, the nurses are always telling you to move around and to cough.  They want to make sure the lungs are opening up all the way.

Anyway, the challenge for him with rolling is the pressure and pull that the circuit (the tubes that carry the oxygen and air from the ventilator to him) put on the trach.  Think about it.  He's got this stoma,  hole, in his neck with an inflexible piece of plastic then attached to a (relatively) heavy circuit.  Yep, he was tearing that stoma.  Now, I don't think it was painful, or at least he didn't act like it was.  But we've had several small tears and a couple of moderate tears over the past couple months.  Not really what we're wanting on so many levels:  risk of infection or increased decannulation (trach coming out accidently) to name two.

So the solution?  A trach with a flexible end.  Now it lays flat on his chest and can move so much more without any stress on his stoma.  Fantastic!

One month after getting my trach.
But the best part in my mind is what it signifies:  he's doing so well and learning and growing.  'Cause see, the reason he wasn't a candidate for this before was because he  wasn't "supposed to live long enough to roll over."  That from a woman I respect incredibly.  One of the (many) reasons I respect her is because she is realistic.  She's hopeful as well, but she knows her stuff and understands the odds.  And back when we trached this little 4.4 kilo (10-ish pounds) four month old, his odds were just way out there.

But due to a wonderful fighting spirit, an incredible medical team (with this woman in the forefront), and many miracles, he is still here, and he is rolling over.  And we're looking towards school and further on down the road.  Yea for Aaron!

"The road to success is always under construction”
Lily Tomlin

Friday, July 13, 2012

Birthday Boys!

We've got two birthday boys in the house today!  Michael is six years old and Aaron is 25 months.  Michael says the best thing about Aaron is that he makes him smile.  Pretty good gift!  

Michael is an awesome big brother.  From the time we found out that Aaron was going to have challenges, I don't think he's said a single prayer of any kind where he didn't ask for heaven's blessings on his brother.  

Before Aaron was born, Michael would pray that his baby would be healthy when he came home from the hospital.  I know his Sunday teachers thought it was really cute.  It made me cry because I knew what a prayer of faith that it was.  

When Aaron was a few months old, Michael came to me and asked me if I thought Heavenly Father heard his prayers for Aaron.  Again, I teared up because yes, I am sure that God hears Michael's prayers and knows the love behind them.  

 There is a special bond between these two.  They've shared stories and nap times.  Michael has been to many, many of Aaron's appointments and therapies.  He knows when and how to turn the oxygen up and down.  And he knows how to read a pulse/ox machine!  What an amazing helper.

We're also almost through our many follow-up visits.  Aaron is growing so well that his thyroid medicine has been increased.  He's more alert and interactive since he's started on it, too.  His orthopedist is thrilled with how his feet look and he's even starting to bear weight on them, a huge step forward.  This week we have appointments with audiology and cardiology.  If all goes well, AND he continues to feel well, we'll be off to see Gramma and Grampa at the end of the month.  YEA! 

Yesterday, we had a fun photo shoot at our home.  There's a photographer up in Idaho who is making it her mission to show the world how wonderful people with special needs can be.  She came down and we had a few kids from the neighborhood as well as a couple from a facebook page over here.  It was great to be able to visit briefly with them and I can't wait to see her pictures of Aaron.  I'll post a link when they come up on her blog.  I love to see the light of Christ shining through the eyes in her pictures.

I've been playing with some different configurations for all of Aaron's equipment that we have to have with us to keep him safe.  I mean, there's the obvious ones:  ventilator, oxygen, and suction.  But there's also all the things we have to have if something goes wrong, like an ambu-bag, extra trachs, g-tube supplies, and all of that.  I got a new bag this week that will hopefully hold everything from his "go bag" and also the "normal" baby supplies, like diapers and burp cloths.

I wanted to personalize it for Aaron and found this great design put together by another T18 mommy friend.  I felt like it epitomized all I wanted to say in one word:  HOPE.  Inside the ribbon are sayings that so many have felt like represented our kids, and frankly, I think all kids, regardless of the number of chromosomes they have.
I am a miracle. I love.  I breathe. I look. I hug.  I listen.  I laugh.  I am a gift.  I am worth it.  I fight.  I kiss.  I play.  I can.  I am.  I am a person.  I am beautiful.  I am not a mistake.  I am loved.  I deserve.  I see.  I am a gift.  I hope.  I cry.  I learn.  I am real.  I celebrate.  I sleep.  I interact.  I dance. I have meaning.  I overcome.  I grow.  I have purpose.  I am precious.  I try.  I think.  I feel.  I learn.  I smile.  I am wonderfully made.  I LIVE. 
Because Aaron does live.  And he does have quality of life.  He makes everyone around him feel good about themselves.  And shouldn't that be the best way to live?

Once you choose hope, anything's possible.  
-Christopher Reeve


Friday, July 6, 2012

Fighting the Fire Dragon, Quail Fire

It has been a stressful few days around here.  I'll start at the beginning, because I think people will get a laugh out of this.

Tuesday afternoon, my phones (land and cell) started ringing about the same time.  Can't remember one of them, then a daughter with questions at the store, then a couple of others.  Some (one?) I had to just let go to voicemail.  When I went to pick it up, it was a friend from out in the Eagle Mountain area, WAY far away for all intents and purposes.  She was wondering how we were doing because she'd just looked out her window and saw we had a big fire out here.

Huh? I walked out into the back yard, looked at the sky, sniffed the air, listened...  I thought for a minute I might have heard a siren, but then it was gone.  I had NO IDEA what she was talking about.  Yeah, I walked out the wrong door.  Shortly thereafter, maybe five minutes, (who knows?) one of the kids walked in and said, um, you should come look at the smoke out here.  This is what we saw:  

 Yep, Alpine was burning, and it could be seen for MILES!  Lots of thoughts went through my mind.  In addition to current concerns, which weren't small, there was past experience to be dealt with.  Not just mine, but most of the kids as well.

See, nine years ago, we were evacuated during the Cedar Fire in San Diego.  Our community got off easy.  We "only" lost 18 homes.  The fire took more than 2200 total.  And my kids remember, they remember the black smoke behind us as we left.  They remember the smells, the watching, the waiting. And the ones who didn't remember had older ones to tell them.

Then there are the current concerns.  Not only do we have our home here, but we can't just run out the door.  Even if the fire was at the doorstep, it does take at least a few minutes to switch to an oxygen tank, switch the ventilator to an away mode, and grab Aaron and get out the door.  So not knowing exactly where and how fast the fire was moving, we moved into high gear.

First we moved all the oxygen out of the house and into the car.  Then it was the photos, and other memorabilia.  While this was happening, Aaron decided he wasn't real happy either.  His heart rate climbed, his oxygen saturation dipped.  So I gave him the first of many breathing treatments he'd get over the next few days.  And the whole time, the clouds of smoke are getting bigger and blacker.

Everything Aaron would need was put in his room.  His food and meds went into a cooler that could be grabbed quickly.  Extra supplies were in the car.  I tried to think of everything.  Because while the Red Cross can help you with clean clothes and a toothbrush, they don't stock ventilator circuits, inhallation water, or pulse/oximeter probes.  They may serve dinner, but they don't have pediatric formulas or g-tube supplies.  We organized who was to get and grab what medical equipment, and in what order if we had to leave.  A plan was made as we also prayed we wouldn't have to put it into practice.

I called up to our wonderful home vent coordinator at Primarys and we came up with a treatment plan.  Instead of giving Aaron breathing treatments as he needed them, we decided to give them scheduled around the clock.  This way we would try to stay ahead of the eight ball.  I also put another filter on his ventilator.  Then we had a talk.  I told him that all his friends at the fire station were busy trying to help other people  He needed to behave, because they were needed elsewhere.  And guess what?  Happy, wonderful child that he is, he did.  He didn't sleep.  No, not that.  On the albuterol, his heart rate was elevated enough that he was awake for the better part of the next 48 hours.  But at least he was happy, and breathing.  Two things we're very grateful for!!

So the watching process began.  The fire waxed and waned.  It climbed our beautiful mountains.  Planes came in dropping retardant.  And we had prime seating for the whole show, right outside our door.

Day 1  A Hot Time in the Old Town Tonight

As near as can be figured, the fire started about 2:30 up in the northeast corner of Alpine.  We live at the south end of town. This picture was taken about 3:15 p.m. of a ridge to the northeast of our home.

By evening, the evacuation lines had been drawn all the way down the side of our little town.  The mandatory line of demarcation was only three blocks to the east of us.

This night picture is the only one that we didn't take ourselves from our own home.  When night fell, the mountain had a decidedly Mordor-esque look to it.  The boys, most of them still very nervous, opted to sleep in David and Jonathan's room, on the opposite side of the house, so they wouldn't be able to see the flames.  Mary slept in Deborah's room because she didn't want to be all the way in the basement, away from everyone else.  (Deborah was working a graveyard shift and was gone that evening.)  Before bed and Deborah's shift, we knelt in prayer, grateful for our safety so far and asking for moisture, for strength for the firefighters, and for wisdom to make decisions that would keep us safe.

I wasn't sure how sleeping would go that night, but decided that with two nurses (one was orienting that night) on watch in the living room, if anything changed, we would find out quickly.  Once I went to sleep, I slept well.

Day 2, July 4th, Independence Day

 Morning came, and it smelled like we had a campfire going.  The mountain appeared to be smoldering more than anything at that time.  The winds had shifted during the night and blew the smoke back down into our valley.  And it still reminded me of the scenes of Mordor in the Lord of the Rings.

The Blackhawk helicopters were flying all day. It was a bit surreal to be working or reading and hear the whump, whump, whump of the rotors. But also, oh so reassuring to know they were working so hard. One would pass, dump the water, and fly off, and within a minute or two, the second was coming in.

The fire rose and fell as it encountered different terrain, and different fuels. When the pines went up, especially the old copses, it would flare ferociously. And I would hold my breath, wondering how much closer it would come.


As night fell, the fire fought to crest another ridge.  It fought and won that particular battle.  See, while it's an unnerving reminder of what is happening to hear the helicopters, when night falls, the sound goes, too.  It's not safe for them to fly at night.  So at night, the firefighters shift to a defensive position and simply (strange word, "simply" to describe what they're doing -- putting their lives on the line for us) maintain the lower levels.

 About 10 o'clock on the 4th, about the time the fireworks shows were getting going, the mountain put on a spectacular show of it's own.  I'm told that the flames could be seen from miles away, clear up into the Salt Lake Valley, and across the lake into the western part of our county.  I wouldn't know.   Again, our seats were up front and personal.  Mary and William watched from the front porch and Mary said they could hear the fire.  It was that loud.

Here is the progression over about six minutes.  One in particular looked decidedly like the dragon it was imitating.  We took that picture and blew it up for our firefighters.  Then I took it over to the station today.

We went to bed that night still praying for rain.  The terrain is so rugged and steep.  It is the side of a mountain.  There is only so much that man can do about this.

Day 3  Prayers are answered

We wake again to the smell of smoke, but something else as well.  It has been dry here, so very dry.  That's why the mountain (and all the other areas around the west) have been going up so fast.  But this morning, this wonderful morning, I felt humidity in the air.  And there were clouds, normal clouds with water in them, not smoke.

Then is started to drizzle.  I found out later that it had been sprinkling down in American Fork when Deborah took out the trash at work.  She said she was afraid she probably woke the neighborhood in her glee.

After the drizzle, came the rain.  And it rained and rained, a fairly gentle but steady rain for quite a while.  Every time I thought about the rain, I wanted to cry.  Such an answer to prayer.  Did it put the fire out?  No, it didn't.  But it bought some ground and some time.  We went from 10% contained in the morning to 50% by evening.

It was cool, down in the low 70's from the upper 90's the day before.  The boys played in the rain, and we unloaded the car. 

Mary baked just over 160 pumpkin-chocolate chip muffins, a family favorite that we took over to the incident command center at the high school this morning.  I hope they enjoyed them.

Day 4

The mountain one year ago,
and then yesterday
I continued to listen to the helicopters throughout today as I worked. But it's a very different feel than three days ago. Although our view is now different, there is hope.  Tonight we're have 65% containment. The Red Cross evacuation center at the middle school is now closed. They're starting to pull the firefighters off the lines and send them elsewhere, to fight other fires. Because fire season isn't over, not by a long shot.   

And through it all, Aaron just kept smiling.  As the rain started to fall, he finally fell asleep.  And slept most of the day away.  At rest, like my heart.

And the Lord shall help them, and deliver them: he shall deliver them 
from the wicked, and save them, because they trust in him.