Saturday, September 15, 2018

Missions, Weddings, and Heart Monitors?

Only three kids to get out the door! 
Okay, so I know it's been way too long again, but life has been just a bit crazy around our house.

School started (8/20), life was starting to look "normal" again (whatever that means).  Aaron LOVES school, but the first wek he came home twice early because he wasn't doing well, and then I kept him home the last day of the week.  Two days out of five?  Well, that's not the greatest, but oh well.  We'll work with it.  Kinda have to.  The weekend went well and off he went again on Monday (8/27).  

I went back to work on the third day of school subbing.  Even that close to the beginning, teachers get sick.  Started getting into a routine.  This will do.

And then the wedding....  I have just under four weeks total to put together Deborah's wedding.  She's been dating her fiance for two years now, but they just realized they had the perfect "storm."  His brother who lives in Japan will be home.  Matthew will be home from his mission, Joseph won't have left yet, and if they do it by the end of September, it won't be cold yet.  Awesome!  I just kinda wish they'd realized this a month or two earlier.  

Or maybe it wouldn't have mattered.  It's all coming together, better than I thought it could.  And I only have four weeks to stress instead of eight.  It's all good, right? 

Wednesday, Matthew came home from the Canada Toronto Mission.  He's been gone two years.  He's goofy, funny, and quirky.  The first missionary down the escalator, we got laughter and applause from other families when he came running toward me and I got my hug.  As I was crying (of course) he told me that if I was that sad to see him, he'd go get back on the plane.  (Told you he was goofy.)  Hugs all around, a few tears. Two years is a very long time.


And then he knelt by Aaron.  Aaron.  The brother he wasn't supposed to ever know.  The one whose days are numbered, we just don't know that number.  And he started sobbing.  Sobbed hard.  He left us, knowing full well that Aaron might not be there when he came home.  He went out to teach people about Christ and His love and families, knowing that his brother might be gone when he came home.  But he was there, and it was overwhelming.  As I glanced around, there were strangers watching and crying along with us.

And that heart?  Well, we're not sure what's going on with that.  We've added a new word to the family vocabulary:  "brady", short for "bradycardia" or slow heart rate.  And it can be a noun, a verb, a gerund, you name it.  But it's an ugly word.  When your heart doesn't beat fast enough, it doesn't pump the blood well enough and the cells don't get the oxygen they need.  No bueno.

So here's the story.  We started noticing them back in March, but they were pretty rare, just a second or two, and never down to 55 beats per minute.  Since school has started, they've increased in frequency and duration.  They're happening both awake and asleep.  (Everyone's heart rate drops during sleep.)  Last week and into the beginning of this week we had several per day, along with seizures.  Sometimes his heart was as low as 45 beats per minute for up to 30 seconds.  That's way too long and way too low, folks.

It's notable that the seizures and the bradies started about the same time.  Are the seizures driving the brady?  Or is the too low heart rate driving the seizures?  Are they related, or are they separate and one just exacerbates the other?  And how do we address it?

For now, he's been put on a heart monitor.  It's (supposed) to be on for two weeks.  Here's hoping.  He's always on a pulse/ox, which is how we know he's been having lower heart rates, but this will register every singe beat.  It went on last night.  It will come off two days before Deborah's wedding.  'Cause you know, I told him that September was not his month.  He had to behave.  I guess he sorta wants to cooperate, but also needs to make sure I don't forget about him.  Thank heavens for a cardio and cardio nurse that are willing to work with me when we really don't have time to come in for an office visit.  

And in case you're wondering, I'm planning to sleep again in October.

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While I live a busy life, the pace ebbs and flows. Brad Feld
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 “Time crawls when you are bored; 
walks when you are occupied; 
runs when you are busy; 
but flies when you are having fun.”
 ― Matshona Dhliwayo

Thursday, August 16, 2018

Access: The Right of Everyone

I rarely vent on social media, but this is a social issue.  Not that I'm under any delusions about reaching the people who really need to see this, but still...  I'm frustrated, and angry, and tired, and probably a multitude of other emotions. 

Handicap parking and access.  Yeah, that stuff. 

Four times, FOUR TIMES! in the past 24 hours I've struggled because someone (okay, four someones) decided that they and theirs were more important than someone needing help.  Twice at a soccer tournament, twice at back-to-school night, the same school. 

I get that there are a lot of cars.  I get that it's hard to find a spot.  And those empty spots up front look mighty tempting.  But ya know, there's a reason they're so close to the entrance and it's not because I think I'm better than you.  It's because we really need them. 

And those ramps on and off the sidewalk?  Yep, they're pretty important, too.  My son in his wheelchair with all his equipment weighs between 125 and 150 pounds.  Tipping over his chair as we try to negotiate a curb would be disastrous. We need that access. 

Let me take you through what it takes to get Aaron out and about.  We do it a lot, it happens, but it's not that easy. 

Diaper change, food and meds if we're going to be gone long, oxygen tank.  Do I have enough for the outing?  How long will we be gone and do I have a back-up plan if it lasts longer?  What if he struggles and needs more?  Have to plan for that.  Do I have enough battery on his pulse/ox?  Has his suction machine been charged?  Do I have a new "nose" (filter) and suction catheter for when he gets junky?  And we haven't even moved him yet.

Time to go.  Lift him into his wheelchair.  Turn his oxygen on, unhook him from the vent, hook him up to the tank.  Turn off the vent, humidifier, oxygen concentrators (yes, two).  Unplug the pulse/ox and wind up the cord, place on the wheelchair.  Buckle him in, five buckles.  Now we're ready to leave the room, as long as the switch from vent to "nose" hasn't dislodged anything that will need to be suctioned first.  That happens a lot.

Out to the car, down the ramp, open the car, lower that ramp, up into the van.  Reattach the floor buckle that has to be undone to get him in and out.  Secure the wheelchair at four points, secure his seatbelt.  Make sure it's not twisted and he's all good.  This requires access through both side back doors and the rear door.  Add extra oxygen if we're going to be gone more than a couple hours.  There's always a back-up tank in the car, but it's for emergencies, and yes, we've needed it before.

The good news is that his "go bag," his emergency bag with extras in it, is always on his wheelchair, so I don't have to remember any of that, unless of course I use something and it needs to be replaced.

Finally, we're on our way.  BUT when we get where we're going, it's a reverse of putting him in.  And then once we're out, we have to move kinda slow.  We can't just "slide" through the crowd.  We can't take the stairs.  We don't fit in a lot of spaces.

Guys, this is hard!  But it's doable, and I don't mind.  But when someone who is able-bodied thinks that what they are doing doesn't matter, well, it does!  It saps the energy, energy that I really don't have to spare.  It takes away from what I do have to give.  Frankly, it makes me want to cry.  And when I mention that I can't get to my car because you're blocking the ramp off the sidewalk (and there was no way to go around, there was landscaping on both sides) telling me that you were just leaving anyway, like seriously, what was my problem??  Well, YOU are my problem.  And I have already waited, trying to figure out how to get to my car.  Waited in the heat with a little boy who was already struggling.  Waited while trying to see if maybe I could possibly ease down around the driver's side because not only were you taking a handicapped space, you were also parked over the hashmarks that are designed for a wheelchair van to use.  

So please, people, think of someone else.  Think of those who are not as able as you are.  Yeah, it's an inconvenience to park way out there.  But so is trying to get around when you're not mobile.  And honestly, sometimes I get to the point where I wonder if it's worth it to try to go out at all.

I know it is.  Aaron needs that.  He doesn't deserve to be homebound just because Mom gets tired of fighting battles.  What he deserves is to be able to enjoy the world, just like any other child.  

And by the way, it's $125 fine to park illegally in a handicap spot in Utah.  Maybe it's time to get our local police involved. 

“Accessibility allows us to tap into everyone’s potential.” 
― Debra Ruh

Wednesday, August 15, 2018

Summer Continues, Seeking Balance

Summer is almost over.  I can't believe it.  School starts in less than a week and I'm torn between needing my routines (and job) back, and mourning the loss of the lazy days where I wake on my own well before the alarm.

Aaron has been doing well, still getting out and about.  He had his scoliosis check-up.  They follow him about once a year.  Frankly, other than keeping appraised of what's going on, there's not much we can do.  But this visit was a positive one.  His doctor retired, so we saw a new one, but both she and her fellow were very pleased.  Aaron's curve has advanced, but only from about 40* to 44*.  Most curves over about 28* have a tendency to progress quickly, but his has been moving very slow.  That's a very, very good thing.  With his pulmonary hypertension, surgery will ALWAYS be more risky than doing nothing.  And because of his breathing issues, bracing isn't a good option either.  You know, the whole expand the lungs kind of thing and all.

We've also been working harder on his gait trainer.  In the past, when he's in it, he raises his legs, almost like, "hey, whose driving today?"  He's very content just to hang there in the harness and let everyone else do the work.  His therapist has gotten some braces though which make it so he can't bend his legs, ensuring that he's bearing weight.  We use them in the trainer for a while and then take them off, and he will try to push against the floor!  He's moving! Even if it's just a little bit.  This exercise also has the benefit of strengthening those chicken bones he calls legs.  Our bones grow and get stronger because of resistance, but his haven't really had any.  His lungs are healthier for being upright and exercising.  All in all, it's a very good thing.

On Saturday, we went to a family reunion at the "This is the Place" park in Salt Lake.  Among exhibits is a Native American section where there was a medicine wheel.  In the center is harmony and balance.  I try to find balance.  I know I get "off" a lot.  I forget to stop, or at least slow down.  I forget that there is more to life than just trying to make sure he's healthy.  He's a little boy.  He's got siblings, a family.  And in so many ways, he's more like other kids than unlike them.  He wants to play, to be with people.  He loves back rubs and movies and stories.  There's so much more to life than just doctor's visits and medicine.

Sometime I feel overwhelmed.  Like there is no way I can do everything I'm supposed to.  And you know, that may be true.  I can't do it all.  I'm not really meant to.  But if I'm wise, if I'm careful, if I look to God for my strength, I can do the important things.  I can be a mom, a wife, a sister, daughter, friend.  I can try to be in tune with all my children, be a mom to all of them.  I can reach for the student who is struggling and maybe listen just for a few minutes. (I don't get much more than that, I'm a substitute teacher.)

And I can find my quiet place, my quiet time, even for a brief period, and find my center, my balance, my soul, my God.  And draw the strength I need. 

Balance is not something you find, it's something you create. 
Jana Kingsford

Sunday, August 5, 2018

Processing: "Burying My Head in the Sand"

Sooo, that whole "processing" thing I threw out at the end of the last post?  I'm really not sure how that's going.

Either it's going really well, and I'm handling things okay, or I'm burying my head in the sand and pretending it doesn't really exist.  Probably the latter.

But since other than a few tweaks, there's nothing we can do, that may be the best option.

Here's where things stand as I understand them:

We visited with both neurology (seizures) and cardiology (darned pulmonary hypertension!) in July.  Seizures are somewhat well-controlled with his medicine, and we have wiggle room to go up if he gets sick or just has more for no known reason.  We can't do an MRI.  It's not likely to change the treatment and the possible knowledge gained isn't worth undergoing anesthesia ('cause you know ain't no way this monkey would hold still for long enough!).

Then cardiology wasn't awesome either.  I mean, it wasn't horrible.  There weren't a lot of changes, except I've seen signs that his pulmonary hypertension was progressing.  We've tweaked some medications, and I think he might be doing better.  But still, it's a shadow over everything, Every. Single. Thing.

And tomorrow we see orthopedics for his scoliosis.  Which I'm pretty sure has also gotten worse.  Scoliosis isn't just about the spine curving.  It's also the spine curving and compromising the chest cavity.  In other words, squishing the space the heart and lungs are supposed to use.  There are surgeries for this, but they're difficult, and remember, our kiddo and anesthesia aren't buddies anymore.

So yeah, that's the stuff I'm "processing" (or not).  But again, frankly, there's not a whole lot that can be done with any of this that we aren't doing.  We know, and have known, that his life wouldn't be a typical length.  So hence the "bury the head in the sand" coping mechanism.

Instead, we're getting out and about.  Daddy and the older boys are going for about two weeks, so Michael and Aaron and I, and sometimes another sibling are hanging out doing fun things.

We went to a Star Raising party for Ashton who is 18 (Eighteen!! can you believe it!) with T18.

We went to the Harry Potter Run and helped out there.  Aaron wasn't too impressed with the live owl or the huge snake, but he sure connected with another little boy

We went up to the Air Force Museum where we saw planes that Grandpa Brown and Uncle James have flown, visited with a man who served in one of the squadrons my dad served in, only 10 years early, and listened another tell stories about the Dolittle Raid in WWII.  It was fascinating.  Look it up.


We went to "Drums Along the Wasatch" to hear big brother Joseph play with The Battalion.  

Tomorrow, after his scoliosis check, we'll visit Temple Square and the Beehive House, wander around downtown Salt Lake.  Basically, we'll continue making as many memories as we can.

In addition to our fun, I've been cleaning out closets and drawers and mostly long overdue paperwork.  I found treasures from a couple little boys who've passed on and tucked them away.  Today is Chloe's 9th birthday.  Chloe is from Alabama and has Trisomy 18, and grew her wings just a few short weeks ago.  Aaron starts school in a couple more weeks.  He's still here.  We still get to do things.  His challenges are great, but so is his spirit.

We got this.  And on the whole, I'm thinking that my "processing" and coping mechanisms are doing okay.

"Carpe diem! Rejoice while you are alive; enjoy the day; live life to the fullest; make the most of what you have. It is later than you think. You only live once, but if you do it right, once is enough."

Sunday, July 22, 2018

New Experience??

Forgive me, it's taken a while to write about this.  Mostly because it puts me in a not-so-good light.  Frankly, I screwed up.  Fortunately, I learned and there's no permanent damage.

Let me begin with a different story: 

Just over 25 years ago, I had a beautiful three-month-old daughter.  William and I also had a 17 month old and were both taken 18 credits at the time.  It was crazy, and I really don't remember a lot of that semester.  But this I remember, crystal clear. 

It was Saturday afternoon, I was sitting on my bed, finally giving up on studying because neither little girl seemed to think it was important.  I figured we'd play, it was more fun anyway.  So I grabbed Deborah's nose and said, "nose!"  She  laughed and we did it to Mary.  "Hands!" "Ears!" "Eyes!" (point gently, don't grab!)  So much fun with my littles.  And then we did "Toes!"  "Deborah's toes, Mary's toes!" And Mary screamed in pain.  What?? 

She'd been really fussy for a couple days, more in the little carrier I wore her in during class than lying down.  But whatever.  Babies do that, right?  But I had bailed on class the day before because instead of sleeping all day, she had fussed and cried and I couldn't stay in the room and disturb lectures. 

I whipped off her little sock, and was horrified.  There, wrapped so incredibly tightly around three of her tiny toes was a hair.  It was cutting into the skin, carving into her flesh.  I ran next door to my neighbor who had her RN.  She took one look at them and told me I had to take her in, it was much too severe for her to do anything.

When I got to the doctor's, they assembled a team and I held my tiny child while they worked meticulously to remove every piece of the hair that had embedded itself into her.  Held her as she screamed because they didn't dare use any anesthesia as that would cause even more swelling and more damage. 

I came home and called my mom (isn't that what we all do?) and cried.  She told me something similar had happened to one of my sisters as an infant, and asked what Mary was doing.  Sleeping soundly.  She told me Mary had already forgotten, but I never would.  And I haven't.

So what does that have to do with last Sunday?  Well....

We were almost ready for church.  You know that big scurry right at the end, trying to get out of the door?  I was finishing getting Aaron ready.  Just a couple more things, and I realized I needed something from his dresser.  It's only about six feet away.  He's not (very) mobile.  He was a long ways from the edge.  I'd grab it quick, like I've done a million times!  And I did.  But he was faster.

I still don't know how he did it.  And my husband and boys aren't sure if they heard my scream or the thud first.

But somehow, my little man ended up on the floor, disconnecting his vent circuit on the way down, but thankfully not pulling his trach out.

I was sick, absolutely sick, and shaking, and in shock!  Shouts of "What happened? Is everything okay?"  "NO!  It's not!!"

I bent over Aaron and he seemed stunned, not moving.  I started trying to assess him, he moved.  Good.  We got him back up in his bed, his eyes so big and round.  His little lower lip quivered, and I was trying hard not to cry.

And then he laughed.  He laughed!!

Oh boy....  I watched him so close, so very close for the rest of the day, and the next few days, too.  He was fine, except one thing.

You know how my mom told me Mary had already forgotten?  Um, he hasn't.

And apparently, he thought the whole thing was an awesome adventure, a thrilling adrenaline rush.  He's been trying to do it again and again since that moment.  This kid....

Man, I sure love him, but he's going to be the death of me.  

July has been a busy month, and I really need to update everything, but I'm also trying to process it all.  Stuff for a future post, okay? 

A child is a curly dimpled lunatic. ~Ralph Waldo Emerson

Sunday, July 1, 2018

A Tale of Two Nights

This monkey, seriously!

Let me paint you a picture:

Wednesday night, I have no nurse. (Different story, don't ask, bleh.) I try to wear him out. He's got school and I have an appointment in Salt Lake. But I also walk a bit of a tight rope. He's got allergies going, it's hot, and if he gets too tired seizures show up. So when we get home about 4 or so, I figure he needs a short nap. 

Except "short" is not what he has in mind. He's beat. I try to wake him for his shake vest and food, and he's really not interested. He's not scary, just tired. 

Well, okay. There are times when he's exhausted that he just sleeps, pretty much the whole night. So maybe...

10 o'clock, he's still sleeping and I lie down on a mattress in his room with alarms set for 2 and 5:30 am. 10:45 an adult kid calls needing some time, so we talk. Aaron still sleeps. This might work!

Until 11:30. Bing! Bright eyes! Um, really?  And the party begins. 

And continues the rest of the night. 

I guess I should be grateful he didn't start throwing toys at me until 5.

And Thursday and Friday nights? Nights that I had a nurse? Pretty much slept from 9:30 until 8. 

Little punk. 

I have no nurse the next two Wednesdays, plus family activities all day on the 4th and Andrew's Eagle Scout project all day at the hospital on Thursday. 

Life is never dull with this kid.  I guess I really wouldn’t want it to be.

In other news, he had his birthday, and we marked eight years since we brought him home from the NICU.

 He also got to go to Hogwarts and was sorted into Griffindor (of course! house of the bravest).

He’s had a bit of a tummy ache the last few days, so today he’s staying home from church with Daddy.  But through it all, the smiles continue.  

There was never a child so lovely but his mother was glad to get him to sleep. 
~Ralph Waldo Emerson

Sunday, June 10, 2018

Almost EIght?!?!

Then and Now

Aaron is almost eight!  Almost!!!  It's taken a long time to get to "almost."

Eight is a big deal to us.  In our religion, it's a REALLY big deal. 

First day of life.
First birthday, tried to sleep through it.


In our church, the Mormon Church, turning eight is an important milestone, a eternally significant milestone.  We don't baptize our babies because we feel they are innocent. Eight is the age of accountability, when they start taking responsibility to repent when they do something wrong.  Until then, they get a "free pass" so to speak.  It would be similar in importance to a Bar Mitzvah for a Jewish boy, or a First Communion for a Catholic child.

Four! Almost didn't happen. Bad asthma attack the night
before dropped his sats to 43%, had to call 911

Now Aaron is a little different.  He still and always will operate on a much lower developmental status, and he won't be baptized.  And that's okay.

It's kinda like when a kid breaks a neighbor's big glass window.  There's no way he can replace that.  He's not capable of it.  So his parents do it for him.  Christ's atonement takes the responsibility for the mistakes a child under eight makes, and also those who don't develop the ability to do so themselves.  But hence the notice and the excitement of his upcoming birthday.

Last December, a friend approached me all excited.  Aaron was almost eight!  How did that happen??

Um, except when she said that, a cold fist gripped my heart.  I know she meant well, and from her perspective, he was "almost eight."  For a kiddo who wasn't supposed to turn one, six months from eight is pretty neat.

But this is Aaron.  And he's fragile.  And he was still six months from eight with a nasty cold and flu season between him and that birthday.  And it terrified me.  Plus, last year on Aaron's birthday, Braeden (T18) died just two months before his eighth birthday.  Georgia (hydrocephalus/anencephaly) died one week after her ninth.  Chloe (T18) just passed a few weeks before her ninth.  Stacy (T18) died a week before her 37th.  And that's just a few of the children. 

It's reality.  I'm surrounded by death in my "new (almost eight years old) world."

So back to "eight."  It took until just a few weeks ago before I decided that Aaron could be "almost eight."  I figured at seven and 11 months, maybe it was time.  And then he pulled the stunts that got him out of school for the final two weeks.  Um, yeah, nasty thoughts...

Seven and so smiley!

But this week, this week!, this week Aaron turns EIGHT!  NOW, he can be "almost eight," 'cause if it doesn't happen now, he's going to be eight without being "almost eight."  (Yeah, I'm weird.  You knew that.)

Like I said above, he won't be baptized.  There won't be pictures of him in white in front of a baptismal font.  There won't be a new suit (he'd hate it anyway), or scriptures (he can't read).  But still, he's turning eight.  And eight years ago, I didn't know if he would even live.

And Almost Eight!

So please, come help us celebrate.  We're gathering from six to eight on Saturday, June 16th for cake and light refreshments.  Come wish him "Happy Birthday!"  Leave me a note on how he's influenced your life.  Send me a message if you need the address.  Help us make this birthday special, even if he's not traveling the road most children do.  Come celebrate our bug. 

"The first fact about the celebration of birthdays is that it is a good way of affirming defiantly, and even flamboyantly, that it is a good thing to be alive."
~G.K. Chesterton