Thursday, January 31, 2013

Someone...



I admit, I borrowed this from someone, who borrowed from someone, who . . . well, you get the picture.  None of knows exactly who wrote it originally.  But something in it resonated with me.  Our "Someone" has taught us so much.

************************

Someone I love relies on me in ways you will never understand.

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted.

Someone I love will never have the opportunities that every child should have.

Someone I love will need unconditional love and support after I am gone - this frightens me to the core.

Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.

Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.

Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.

Someone I love has needs that require more time and energy than I have to give.

Someone I love has needs that mean I am not able to meet basic needs of my own.

Someone I love has needs that have become the driving force behind major decisions my family makes.

Someone I love has changed me in ways I will never be able to describe.

Someone I love has taught me about love and about the really important things in life...


Sunday, January 27, 2013

Working Inside My Comfort Zone, and Outside Someone Else's

Every once in a while (okay, probably more often than that) an experience comes along that opens my eyes a little bit more to how I've changed and what I've learned on this new road.

This past weekend, Deborah and I had the opportunity to listen to the Utah Junior High Honor Choir sing.  It was a fabulous experience!  The last song was the well-known spiritual "My God is a Rock."  We both had chills all the way through.  Those 300+ kids sang their hearts out and it was amazing!

Afterwards, as I was talking with our choir director, someone mentioned that a girl had fainted.  I hopped up on stage and asked if anyone around her had medical training.  One said she was a nurse, but when I mentioned that I had held an EMT certificate prior, she said, "oh good, then you'll be better than me."  I'm not sure that's true but she left, so, whatever.  Another woman came up and said she was a medical tech and we both started assessing.

Pulse was strong and steady, but pretty slow, and in the dim lighting, I couldn't get an eye on my second hand to count it.  Breathing was shallow, but there.  She hadn't hit her head going down, she'd been caught.  Skin was good colored, but she wasn't waking up.  We called for someone who knew her, were her parents there?  No, she was from some distance away and they hadn't been able to come. But her friends and her teacher were there.  Did she have any medical history that they knew of?  No, except she'd been pretty sick earlier that week and had taken some Tylenol that morning.  And she's still not waking or responding at all.

At that point she'd been out for more than five minutes.  Now, if it had been my daughter, or if her parents had been there, it probably would have been different.  But it wasn't.  And we didn't know much more about her.  So I turned to her director and told him I wanted paramedics.  He was flustered, trying to help, but really didn't realize what was needed.  I tried to tell him a couple of times, in between trying to keep an eye on this child, that I needed him to get the paramedics.  Finally, it dawned on me.  I wasn't being specific enough.

I turned to him, looked directly at his eyes and said, "I need paramedics on the way.  Dial 911, they'll ask the questions, I'll feed you the answers you don't have."  That he could do.  I needed to give him something concrete and simple to follow.  By now I've called for help so often, I've forgotten how nerve-wracking it can be to do that for the first time, how out of control that can make you feel.

I didn't really think that there was going to be a big problem, at least I hoped not, but if there was, I knew we didn't have any resources to deal with it.  And if she was going to stay out, we needed those resources sooner than later.

It all turned out well.  While he was on the phone with dispatch, she finally started to come to.  Initially, we could only get a response to pain, then shortly after, she could respond to voice commands, although she wasn't verbal.  She was really confused and disoriented when she did come around, but improved fairly quickly after that.  By the time paramedics got there, she was verbal, although still quite hesitant and slow to respond, and making mistakes.

She was released back to her teacher after her parents were reached by phone, and we left about the same time the paramedics did (had to look for a lost glove before we left).   But I think (I hope) I learned a valuable lesson here.  When you're working outside someone's comfort zone, you have to give direct and simple instructions when something is needed.  And it's okay that they're flustered or confused.  Because that's not their norm.  Sometimes I  wish it wasn't mine, either.

Is the glass half empty, half full, 
or twice as large as it needs to be?  
~Author Unknown 

Alarms, Alarms, Silly Alarms

Aaron has been setting off a lot of alarms lately.  Over and over, we hear the "beep, beep, beep" of his ventilator.  But this time it's funny.

He's learned to blow raspberries!  You know, that funny time when your baby discovers that they can make their mouth vibrate and cause people to laugh?  He's having so much fun with it!

But it's actually bigger than that.  Think about what goes into blowing a raspberry.  And go ahead, try one.  (Shield your computer screen first, unless of course, you need to clean it anyway.)  Did you feel what happened down in your chest and abdomen?  You had to tighten your diaphragm.  You had to push, kinda hard because your tongue is obstructing your air flow through your mouth, and you had to direct the air through your mouth instead of your nose.  It's actually a fairly complicated process.  And the ventilator isn't quite sure what to make of it.

BUT HE'S DOING IT!!!  On top of what we do to blow a raspberry, Aaron also has a cuffed trach he's pushing the air past.

We've suspended his vent trials for a little bit.  The air here is beyond yucky with the inversions, and we've had a lot of illness in the house.  But he's still growing and learning anyway.

Today is David's mission farewell.  He'll speak in church and then the five oldest kids will sing.  I think I've been trying to keep really busy so I don't think about how long two years really seems from this side of things.  It's worked, too.  I've cleaned out a ton of junk and garbage that we've somehow been holding onto.  And the house is so much more comfortable without all the clutter.  David has a link to his blog over on the left-hand side of this page.  It's called "A Foot or Two" and I'll be putting in a sidebar that will let people follow him by email.

For those who see this today, he'll be speaking at 11 a.m. at the Village Way Chapel in Alpine, then we'll have an open house for anyone who wants to stop by.  Also, if you want to leave a comment for him, some advice or encouragement below, I'll make sure it gets printed out for him to see.

I'll leave you with a couple of short (like a few seconds each) videos of Aaron's new trick.  You'll need to turn up the volume, but it's pretty exciting.

video


video


Change always comes bearing gifts.  ~Price Pritchett

Thursday, January 17, 2013

Dress Rehearsal

With kids starting missions, and more to follow as they get old enough, we wanted to get a family picture before everyone heads out.  It's going to be a while (quite a while) before we have everyone back together again.

Now, my guess is that for many the family picture is something that's  a lot of fun.  Those great shots I see  look like they're taken of people who love to have pictures done.  Um, not so much here.  There's a few members of our family that would almost rather have fingernails pulled out than have a picture taken.  But by hook or by crook, I wanted pictures.  So it was going to be done.

But any show, and yeah, taking this family on the road feels like a show, needs a run-through.  So the agony for some began the night before.  Dress rehearsal time.  With costumes.  No smiles necessary, I guess.  And no footwear requirements either, apparently.

Let's see, slippers, white socks a couple sets of bare feet,
and some bear feet, socks with a brace,
and one pair of feet with dress shoes.









So here you have it.  Aaron got out of it by napping and sending his Payton's bear with his shirt to stand in for him.



Adding color?
Then after decisions were made, I had my work cut out.  The challenge with deciding that we wanted choices?  Yeah, 16 dress shirts to iron, eight white ones and eight colored ones.  It took a while, I've gotten out of the habit of ironing.  One of the reasons my boys wear suit coats to church?  It hides the majority of the wrinkles in the shirts!  Works well.







 Fastest hem in the west.  Probably not up to Martha Stewart's standards, but then she doesn't have seven boys.  And it only had to stay for an hour or so.  So it worked, sort of.  By the end of the evening it was undone.  But hey, it lasted while it counted!


 Aaron getting his beauty rest.  He slept most of the afternoon.

Then when it was time to get dressed, he was all smiles!  This kid hasn't been outside the home for several weeks except for a couple of check-up appointments.  He just knew that he was getting out.  And even with how cold it was, he was tickled pink to be going somewhere.  It was almost like he was saying, "hey, it may be cold, but that means I'm not stuck in my room!"

Here he's actually sitting on his own!  It was only for several seconds at a time, but it's a start!  His bear is in the background behind him.  He (the bear) had to give up the shirt so Aaron could wear it.

 And our pictures?  I think they're going to be great!  The Gublers are a wonderful, fun couple who spent a LOT of time with us.  We got MANY shots of the whole family, individual shots of each of the kids, all the guys together and all the girls together.  Then Andrew really wanted a picture of him and Aaron, so each of us also did a few shots just one on one holding Aaron.  From what I saw in the viewfinder, I can't wait to see the finished product.  I'm so grateful for people who are willing to help us out.  These pictures will be priceless.

Then, if that wasn't enough, on the way home was a riot.  The boys started singing (if you could really call it that).  I mean, they've got some great voices, and they've enjoyed a fabulous choir director at school, but they were trying to be goofy and sing off-key and it was a blast!  Then as we got closer to home, they started settling down and sang songs from when they were in choir.  Fun songs and sentimental songs, in harmony, with rich voices.  I hope I never forget how fun that ride home was.  All in all, it was a night to remember for all the right reasons.

A memory is what is left when something happens 
and does not completely unhappen.  
~Edward de Bono
 

Sunday, January 13, 2013

Busy, Busy!

It's been a really busy time around here the last couple of weeks, and I don't think any of that's going to change in the next two.



Mary and David both went to the temple for the first time ten days ago in preparation for their missions.  It was an incredible experience, especially to have two receiving those special blessings at the same time.


It reminded me in so many ways of 21 years ago (can't believe it's been that long!) when my brother and sister, Richard and Mara, did the same thing at the Salt Lake Temple.

In his stander
Aaron has been having a great time.  He turns 31 months today!  We're coming up on 1000 days of life.  How's that for thriving??  I put him in his stander yesterday, and he thought it was great fun!  Usually, he likes it okay, but something sure was tickling his funny bone yesterday!

 He and I are the only ones in the whole house who haven't been sick in the weeks since Christmas.  William caught some kind of respiratory illness, but not the flu.  Deborah got influenza.  Thankfully, she got the vaccine so it wasn't as bad as it could have been.  Then, the rest have been passing around a lovely stomach virus, over and over again.  Knock on wood, I think everyone is finally healthy again.  (But I'm saying that very, very softly.)

Aaron and I went to Riverton on Monday to see his cardiologist and to Salt Lake on Wednesday for his new brace.  He got a good review from Dr. M who said that while it's not time to close his VSD yet, they will be watching carefully for when the window does open.  And he also reassured me that there are many people who live a long time with a VSD and pulmonary hypertension as long as it is well-controlled, and Aaron's is.  What a blessing.  This is a doctor with whom we have felt very comfortable from the beginning.  Incredibly knowledgeable and also very compassionate.  I would recommend him without reservation to anyone.
Hanging out at Shriners, blowing bubbles


Wearing his "sock" that goes under the brace.
It was a frigid 7 degrees out on Monday morning.  I didn't realize that oxygen tubing loses it's suppleness at that temperature.  Fortunately, when we got inside it went right back to being very pliable.

In contrast, on Wednesday, it was a balmy 37 degrees.  I NEVER thought I'd think 37 was warm, but after Monday, it was downright comfortable!


"Hey, got a question over here."

Front half of the brace.

This time at Shriners was happier for Aaron.  He was waaaay exhausted.  He'd stayed up all night, taken a half-hour nap at 8 a.m. and then was up until about half-way through our 1:00 p.m. appointment.


It took a long time (2 hours) to get the brace fitted correctly.  They'd put it on him, measure and then go to cut a little, refit, remeasure and so on.  Each time, he'd fall asleep while they were gone.  But each time, he woke up happy when it was time to try again.
The brace.  Notice the directional notation
It's supposed to help keep me from
trying to put it on upside down.
Yeah, I'd do that, really.











Check out this helpful guy!

















We've also had a lot of snow since Christmas.  It's a good thing we didn't try to go to Arizona.  By the time we could have left, it would have almost been time to come back home.  But Gramma and Grampa Brown came up to see us instead.  Gramma even got in some good cuddle time with Aaron.  This is how Aaron likes to spend his snowy days, inside, playing with his toys.




Actually, he's been grounded again this winter.  I wasn't going to do this unless he started getting sick.  But with all the flu and RSV out there, we decided to make a preemptive strike and limit his exposure to necessary doctor's visits.  Frankly, the thought of him catching either scares me to death, because they could very likely cause HIS death. Just not something I want to even think about.


Playing inside while others shovel and sled outside.




So with snow, illness, school, homeschool, temple trips, doctor's visits and the craziness that comes when trying to get a son out on his mission in two weeks, life has been very full.  Very full, very fulfilling, and very happy.





Life is pure adventure, and the sooner we realize that, 
the sooner we will be able to treat life as art.
Maya Angelou

Thursday, January 10, 2013

Is What We're Asking For Really Too Much?

A friend of mine recently put together some word pictures about Trisomy 18.  The first is a traditional medical view of it.  The second is a parental view.  The third is a balanced approach.  Balance, what everyone says we need in life.




The fact is that many, many children who have three of the 18th chromosome can't live.  Many don't even make it to delivery alive.  The way their bodies read the extra code just won't support life.  However, just because some can't live doesn't mean that none should live.

As parents, we really aren't asking the doctors for miracles.  Although many of us storm heaven's gate for them, we don't look to science to provide them.  What we want from the medical profession is support, help.  We haven't been to medical school.  And we don't know all the treatments that are out there.  We need their help, their knowledge and expertise, to help our child thrive.

The same way you don't hold back an athletic star just because their peers can't keep up, we shouldn't hold back the children who want to live, or their families.  Slowly, ever so slowly, things are starting to change.

In a newly updated overview of Trisomy 18 it is noted that while many pass away, 5-10% do live beyond one year.  And that "the major causes of death include central apnea, cardiac failure due to cardiac malformations, respiratory insufficiency due to hypoventilation, aspiration, or upper airway obstruction and, likely, the combination of these and other factors (including decisions regarding aggressive care). Upper airway obstruction is likely more common than previously realized and should be investigated when full care is opted by the family and medical team." (emphasis added by me)


In layman's terms, this means that breathing can be difficult (oh yeah, we've seen that) and should be looked into if the family wants full care.  Key words in my view: breathing, obstruction, FAMILY.  The doctors aren't living with these children.  And it's probably hard for them to see the joy when they only see them when they're struggling and sick.  But there is joy, so much joy that is brought by these little, perfect spirits.  

If you're up to reading the article, you might see a really cute, familiar-looking kiddo there.  I'm kinda partial to him.  Here's the link to it. 

It's been pretty incredible, even in Aaron's short life, to see how many more babies are being offered interventions, how many more doctors are seeing our miracles as worthy of life.  

But the question begs, is it really too much for a family to ask for full support for a child?  Without that definitive diagnosis that make them "incompatible with life," all support would be given.  Should a label really have that much influence? 


We're here to make a dent in the universe. 
Otherwise why even be here?  
- Steve Jobs

Wednesday, January 2, 2013

You've Come a Long Ways, Baby

Looking back over 2012, I have to say it's been a good year.  At the end of 2011, Aaron was weighing 20 pounds and being put on a diet.  Take that, "failure to thrive."  Today, he's tipping the scale at a respectable, healthy 30 pounds.  He's active and healthy and loves his life.  Here's a quick recap of our last year.

January

Aaron is outgrowing his car seat.  Not only is he too heavy, he's also getting too long!  He ends up with the comfiest seat in the car. 




February

We try out a new style of hearing aid.  This one takes his hearing to almost normal levels.  While it may not sound that incredible, you need to understand that without the hearing aid, he is almost completely deaf.  With traditional aids, it only increases his hearing slightly.  Aaron is introduced to the world of sound in a new and wonderful way!





March

March is Trisomy Awareness Month.  I spent time reflecting on how much our lives have been improved by our journey.  Aaron has taught us in so many ways what is and what isn't important.  Kind of that "Don't sweat the small stuff, and it's almost all small!" concept. 


We also had a fun visit when cousins came to see us.















April 

April was a tough month for Aaron.  He caught a cold, and not content with just that, our little overachiever had to play with a pneumothorax as well.  We spent two weeks in the PICU while he fought it and the complicating factor of increased pulmonary hypertension.  We were once again reminded of how precarious his life is when the doctor said, "I don't know what else there is that we can do." 


May

While Aaron was discharged the end of April, it took the full month of May for him to return to his previous baseline in health.  We just kinda hunkered down and dug in for the long haul. 













June

Birthday Time!  Aaron turned two on June 13th.  This time around he was awake for most of his party.  It was lots of fun and he enjoyed tasting his cake.  He was also featured in the Deseret News and on KSL.  The reporter told me the next day that it was their top hit and showed no sign of slowing down!  Mostly, we're just grateful to have been blessed to have this time with him.





July

The hot, dry summer brought an excitement all of it's own.  On July 2nd, a spark caused a forest fire in our little town that quickly grew.  We quickly moved things into the cars and put everything Aaron was using in a cooler in his room.  The we sat and watched as the mountain near us exploded in flames.  I explained to Aaron that it was important that he be very good, because all his friends were busy helping other people and wouldn't be able to come.  We gave albuterol around the clock for the next few days and he had a party!  (Albuterol increases his heart rate and makes it harder to settle down to sleep.)  What a blessing when the weather turned cooler and rain came in later in the week.  All calmed down and Aaron finally slept. 


August

Aaron went on a road trip!  We went down to Gilbert, Arizona for a visit with my parents.  Lots of fun and swimming in the pool.  He tolerated the trip very well and everyone had a good time. 




September


We started "sprinting" off the vent.  In April, just before he got sick, his pulmonologist said that we could start trying to breathe without the vent a little bit.  But then he got sick and we had our trip coming and so on.  Just didn't want to rock the boat there.  When things settled down a little with the kids back in school, we started.  And he did great!  Yeah, he gets tired after a while, but he hasn't been using those muscles to breathe for almost two years.  Plus, the vent works exactly the opposite of our lungs.  When we relax, we breathe in, then exhaling is an active process.  With a ventilator, it pushes the air in and then releases and the patient breathes out.  So very different action than what he was used to.  But he made significant strides to where he was breathing on his own for a few hours a couple times a day.  YEA!


He also started going to story time at the library.  We were only able to go for September and a little bit in October but he really seemed to have fun!




October

Aaron got to go trick-or-treating!  This was a first for him.  His first Halloween, he was too tiny, and struggling, although we didn't know why yet.  Halloween 2011, he was in the PICU.  Yeah, no trick-or-treating there, although the staff was wonderful and took a picture of him in a costume that was given to us.  This year it was really warm out and we had a great time.  He wore the clown costume that every one of the other kids have worn. 


November

He got a new bed in November.  It's fabulous, and just what he needed.  Plus, it's big enough that Mom can crawl in and take a nap with him, too.  I've missed taking naps with my baby.  It's something I always did with my other toddlers, and even if he's not toddling, I need it. 



December

It's Christmas Time again!  Aaron starts using a "speaking valve."  Not only does this let him practice using his vocal cords, but it also helps to strengthen his lungs.  He also goes in for his first heart catheterization.  The results are mixed, but we're trying to work through them.  I just keep reminding myself that nothing really has changed, we just have more information about it.  And remembering that none of us are guarenteed any particular length of time on this earth.  We just are blessed to have it brought to the forefront of our thoughts that his may be short, which gives us the opportunity to make the most of the time we do have, not only with him, but with others in our lives, too.



Overall

Next week, we start the round of specialists again.  On Monday, we visit with the NET about his ears and cardiology about his heart cath.  A few days after that, he'll go up to Shriners to be fit for his brace for scoliosis.   Later this month, he'll see his endocrinologist and probably his urologist, along with having his screening ultrasounds for cancer.  And so it goes on, and so do we.  And I wouldn't have it any other way.

2012 was an easier year than 2011, which was easier than 2010.  He can now sit up with support and play with his toys.  He has definite favorite activities, which include not sleeping if he catches Mom climbing into his bed!  We only called paramedics once in 2012, instead of the six times in 2011.  He was also hospitalized three times for 16 days instead of 11 times for 49 days.  He sees his therapists more often than his doctors, and he's looking forward to starting school when he turns three. 

Mostly, (I think) I've learned to roll with the punches a little bit better.  I've learned to "let go and let God" more often.  I still struggle.  Sometimes it's still hard.  But that's okay.  It's through stress and struggle that our muscles grow stronger, even our spiritual ones.  Here's to 2013. 

The gem cannot be polished without friction 
nor man without trials.  
~Confucius