Keeping Us On Our Toes

You gotta love this kiddo of mine.  (Okay, well, maybe you don't, but if you're reading this, chances are that you do anyway.)

Here he is hanging out with the family at Grandma Wiess's birthday party.  He was all smiles and giggles.  Let me tell you, this kid is the ultimate in "people person."  He's kinda like what Will Rogers said:  "A stranger is just a friend I haven't met yet."



But then the next morning, Friday, he was kinda "off."  You know, more restless, higher heart rate, that kind of thing.  Sure enough, by 7:30, he was running a fever.  And not just a bit of a one.  It was 103.8.  Yeah, I'd be pretty restless, too.

So we went into watch mode.  I gave him Tylenol, listened to his lungs (kinda rough sounding) and made sure I had things taken care of.  I notified the office that we might be heading in and that I needed to have clients I would work on that didn't need high speed internet, and William took Andrew to his summer band concert while Aaron and I stayed home and waited to see what would happen.

And waited....

And waited.

Now, Aaron metabolizes Tylenol and ibuprofen pretty slow.  That's a good thing.  It means we don't have to give it as often.  But when 4:30 rolled around and he still didn't show any signs of the fever returning, I called the ped.

See, I can't remember if that can be a "thing," you know, a normal thing to do.  Pop a high fever and then have it gone.  Yep, the nurse assured me that kids do that pretty often.  

Yesterday was also a good day, although we did break out the albuterol.  He's more restless again this morning, and we're suctioning more, but there aren't any funky colors in there.

So I'm not sure what's going on, hopefully nothing.

My little "people person" needs to take a look at his calendar.  We have a family reunion coming up in the next few days.

Then just after that is the SOFT conference I've been looking forward to for almost five years now.  If he wants to turn more strangers into friends, he'd better behave!

Such a funny monkey.

Every new friend is a new adventure… the start of more memories.

Patrick Lindsay

We Don't Do "Boring"

Aaron's heart cath went well on Monday.  From start to finish, it was pretty smooth.  The goal was to leave by 5:00 a.m., and we pulled out at 4:59.  They took him in on time, he got out a little early, and except for the part where he forgot to read about lying still for six hours (yeah, like that was going to happen), everything went according to plan.

His results weren't what we hoped for, but they also weren't what we feared.  Out of the four areas that were the focus, one was the same, two were slightly better, and one was slightly worse.  I guess we'll take it.  Not much other choice, right?

And that brings us to today, 'cause you know, we just don't do boring around here, at least not for very long.

I'm not sure why, but I was having the hardest time keeping my eyes open today.  I do transcription for my job, and I was sitting here typing, trying to stay awake, and finding myself typing with my eyes closed.  Hard to maintain much accuracy when the brain is shutting down along with the eyes.  So I finished up and planned to go take a nap.  Matthew was all set to watch Aaron.

Just before I went in, he started in with some "high inspiratory pressure" alarms.  It's not one we see often, and I tried to suction him, and got nothing, so I went to look it up.  As I was doing so, Matthew called that he was desatting and starting to cry.

So I went back in quickly.  Suctioned once more, again NOTHING, and he started sounding really bad.  Like gasping for breath bad.  I told Matthew to crank the oxygen up all the way and grabbed his spare trach from over his bed.

Aaron looked terrified, and as I glanced at the pulse ox, I saw his heart rate jump.  And it wasn't just a bit of a skip.  He was 210 to 220 beats per minute.  Let me tell you, I don't think my heart rate was much behind it.

By this time, William was in the room too, and I yanked that old trach out, we got the other one lubed up, and after a couple of tries, managed to place it.  (It was harder because since he was upset, he was all tense, which made the stoma, the hole the trach goes into, tighter and smaller.)

As soon as we got it in, he relaxed.  In fact, within a few minutes, he was on his way out for a nice nap of his own.  I took a look at his old trach though and felt sick.

Inside was the biggest, thickest, stickiest plug I've ever seen.  The reason I wasn't getting anything was that it simply wasn't moving.  He couldn't breathe.  Nothing was going in or out.  And while he slept, I tried to quiet all the "what ifs" going around my brain.

See trach plugs are a very, very real, and not uncommon, threat to trach kiddos.  Same principle that says, don't let toddlers play with small objects.  And that's why everyone who takes care of Aaron on their own has to be able to change a trach at a moment's (or less) notice.  But the other part is recognizing when it needs to be done.  And sometimes that's tricky.

So I remind myself again, my Heavenly Father knows him, knows his needs, and knows his days.  He's been promised more than once that he will be with us until his purpose on this earth is finished.  And I will try to trust God to hold us up.  And go snuggle my little man as much as I can.  (And maybe find some chocolate.)

"Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and He shall direct thy paths."

Psalm 3:5-6

Big Day Tomorrow

Here I am hanging at Cub Scout Day Camp last week with my family.  Daddy was in charge, Mom did registration, Michael was a cub scout there, and David, Deborah, Matthew and Joseph (plus a whole bunch of others) ran the stations.

I had LOTS of fun smiling at the kids.  Then I had to leave to go get my monthly lab work done.  I think I got jipped.

But anyway, tomorrow morning, bright and early (6 a.m. check-in!!) I'm heading up to Primary's for a heart cath.

I'm pretty sure it will be just fine.  I mean, I'm going to be asleep.  But Mom's a little nervous.  I guess there's this whole thing about my platelets being low most of the time, and me liking to keep bleeding.

They're going up into my heart (yeah, like INTO) my heart with a tiny catheter to measure how my lungs and heart are doing.  They'll use my femoral artery, down in my leg, to put it in me.

Anyway, my cool cardio doc said since it's been two years from my last one, and it's summer so there shouldn't be as many germs around, it's a good time to get it done.

Mom will try to keep people updated, but it will probably be on the Facebook page.  Sending out lots of love  to everyone!  Keep Smilin'!!

Optimism is the foundation of courage. ~Nicholas Murray Butler

Happy Birthday, Little Man

 Five years ago, Aaron was born, and he's been showing us how to do hard things ever since.  Yesterday, I did my first 5K (nope, didn't run, but I did make it).  It was hard.  I'm not in shape and was pushing a 150 pound stroller for half of it.  But I figured if he can keep going, so can I.

All of us at the finish line

 We brought some friends along with us, virtual runners, who've helped out.  Aaron has a runner who runs for him back in New Hampshire.  I put her picture on the oxygen tank.  Somehow, it seemed appropriate!

 


But you don't get anywhere on your own in life, and that was true for yesterday, too.  The 5K was two laps (plus a little bit) around Liberty Park in SLC.  My boys (who are in shape) of course lapped me, quite easily.


As I was approaching the end of the first half, I considered stopping, or at least dropping Aaron off with one of his brothers.  But he was enjoying it, and I didn't want to be a quitter.  On the other hand, one hip and one knee were starting to "speak" to me, and they weren't sounding very polite.  So I asked for some help.

Joseph, who had just finished, came.  Michael (9) had run the first lap and decided he was done.  I didn't want him to give up, either.  So I cajoled him into coming along, too.  Joseph pushed Aaron the rest of the way while Michael and I walked along.

About 3/4 of the way through the final lap, Michael simply was "done."  David came and met up with us, and hoisted his younger brother up on his shoulders.


And with Joseph and David's help, Michael, Aaron and I made it to the finish line, and even crossed it at a run.





That night at home, family and some special friends came by to wish Aaron a Happy Birthday.  Icing Smiles arranged a beautiful cake for him.  When the baker asked me about it,  I wasn't sure what to tell her.  I mean, what does Aaron like?  Really, is there anything he doesn't like?  But he's the sunshine of our lives, he loves music and playing with the balls that hang over his bed.

Could she possibly have come up with anything more perfect?  I don't think so!  And it was as delicious as it looked!

 Deborah brought home a bunch of balloons for Aaron, and just before cousins left, we sent them to heaven with kisses for all the angel babies.







Sometimes it's a bittersweet world we live in, and survivor's guilt is very real.  And some dates just really stick in your mind.  I don't think I'll ever be able to celebrate Aaron's birthday without remember a sweet friend's baby who grew her angel wings the day before he turned one.  Or others who've lit my path and helped me along, or come after him.

Fly high, happy balloons.  May you find little ones to play with in heaven.  May they know of our love for them, and send sweet angel kisses back to their families on earth.

Happy birthday, little man.  You are my hero.

 My hero is an ordinary person who finds strength to persevere and endure in spite of overwhelming obstacles. 

Carol Adamski 

Summer Time Pictures and Thoughts

I'm afraid I've been a slacker in the writing department.  But there's soooo much going on, and with the kids out of school, I haven't figured out how to carve out my "quiet time" yet.

Aaron's doing well.  Cardiology increased his oxygen sats goal from 85% to 90%, which means we've been burning more oxygen, but if it helps his heart and lungs, we'll work with it.

He's also gotten out and about more lately.  We've been using the Upsee, and he's starting to get the idea that his legs are for pushing against the floor.

I have to "bounce" him a little, and then they engage.  He's got a loooooong way to go, but hey, we're here to make progress, right?

Anyway, I'm thinking that this summer's goal will be to keep up the blog with pictures.

Last Day of School

Summer Band Camp, and Prepping for the first parade.

Playing with the tube at Seven Peaks

While we were there, I left Aaron for a few minutes with David (21).  As I came back, an older gentleman stopped in front of me and looked at them. Then he looked back at me and said, "It's nice to know there are still true heroes in the world." I said, "yeah, it is" and tried not to tear up. A brother's love is so precious.

Dream Night at the Zoo

Last year, Aaron really didn't like the noise and experience of the train. Given his reaction to the loud noises at the band concert a couple weeks ago, we decided not to push it, and let another kid in a wheelchair enjoy it. But everyone else had fun!

 Felix Falcon from the Miracle Mascot's Foundation.

This particular one brought tears to my eyes.  Aaron was soooo fascinated by UVU's little Wolverine.  I didn't think I'd ever see him interacting with a character like this.  He played with the gloved hand, and then reached up to feel the "fur" and pull on the headband.  It went on for several minutes, and brought a lot of joy to this mama's heart.




Dream Nights at the Zoo is an international event for families with children with disabilities or chronic illness.  Early in the evening, a gentleman with a couple of young kids stopped us and asked how to get in on such an event.  I had to tell him that to qualify, you get to take a journey no one really hopes to ever have to go on.

Then, it was really brought home later that evening.  I had to go to the car to get another oxygen tank for Aaron, and as we were coming back in, sirens came screaming up the road.  My breath caught, and then released as they went by the entrance to the zoo.  But as I came to the gate, I realized, they circled around the back and were near the back entrance to the park.  I don't know what happened, and I'm not even sure they came into the zoo.  There are some other buildings and a few condos back there, too.  But oh, my heart sank as I knew that it was quite likely that they were helping one of our kids there.  I mean, our collection is more likely than the general population to need their help.  Kind of a sobering reminder of this world we move in.

Getting together with cousins and Great-Grandma Kay on Saturday. 







Saturday is Aaron's 5th Birthday.  We're going up to Salt Lake to do a 5K that raises money for SOFT, a wonderful group that promotes connection between families and research to help these kids.  If anyone wants to stop by that evening and wish him "Happy Birthday" that would be wonderful.  We won't be having a formal party that night as a lot of family members will be scattered hither and yon, but it's still his birthday.  And what a blessing it is to be seeing another one.

“When people look at my pictures I want them to feel the way they do when they want to read a line of a poem twice.” 

― Robert Frank

Could He Walk??

First off, for those who are concerned, we did get lab results from last nights ER visit back, and so far, nothing is positive.  Which certainly doesn't mean he's not sick.

His white blood count is pretty high so he's fighting something.  But he doesn't have pneumonia, or RSV, or our nemesis, rhino virus, or any other of a number of nasties they test for.

He's been home today, and we've continued to be really high on oxygen and pulling yuckies out of him.  But there's no IV, no hospital ventilator.  And best of all, we're HOME (and hoping to stay here).

But last week, I borrowed a contraption from a friend to try out.  It's called an "Upsee".  So tonight, when he was happy and doing better, David and I got it out.  I can tell from the pictures, we don't have it quite right.  He's not supposed to be tipping forward at all, and his pelvis should be farther forward.  So we'll have to adjust the harness some more.

But he did seem to have fun, even if he wasn't bearing weight much.  But a few times, I could feel his muscles turn on and him pushing down.  Which is HUGE.

See, when that cute tiny baby pushes up and you support him, he's not just having fun.  He's also seating his femurs further into his hips. He's not only building muscle strength.  He's building bone mass, too.

Yeah, all those things Aaron doesn't do.  If you try to pick him up and put his feet down, he thinks it's a funny game.  "Just how long can you hold me up?"





And kids like him have been known to break bones, just through normal range of motion movement, or dislocate hips, because they're simply not strong enough.




But I'm hoping that if we make it a game, and if he can move around, he'll develop an interest in using those legs.  And doing so won't only increase his bone and muscles in his legs, it'll increase his lung health, too.

And frankly, the last time I got a look at his leg bones, well, they don't look like they'd support a sparrow.  So here's to helping our little sparrow soar more like an eagle.  The goal is to use it nightly for a couple of weeks and see if we can see progress.  And then I guess we'll go from there!

Listen to the musn'ts, child.

Listen to the don'ts.

Listen to the shouldn'ts, 

the impossibles, the won'ts.

Listen to the never haves,

The listen close to me...

Anything can happen, child.

Anything can be."

Shel Silverstein

Sometimes Reality Stinks

This kid hit the jackpot.  Last week a friend
gave him 13 size 5 onsies.  Big onsies are
considered "special needs" 'cause most kids
that size don't wear them.  And like anything
else "special needs" there's a crazy price tag
on them.  He is soooo much more comfy!

Thursday, May 21st, 2015

You know how you're going along, everything is great, and then something smacks you upside the head?

Yeah, just had one of those.

Aaron's been doing well, and I've been enjoying (okay, mostly) the month of May.  Around here, May is much busier than December.  We had choir concerts (yes, multiple), band concerts, ballroom concerts.  There were grade school and special needs school performances.  Final soccer games (again, multiple) and soccer tryouts.  Job interviews (not me), and just the normal everyday goings on.  And it has been good.  I enjoy watching my kids enjoy what they're doing.

Plus some fun times for me, including a great Heart Moms lunch last weekend.  There was a new mom who sat between me and a friend of mine.  My friend's daughter has Trisomy 13, and while she turns nine the week after Aaron turns five, her life expectancy is pretty much the same as his.  In other words, they've already outlived more than 95% of their peers.

This new mom asked us how we dealt with it, knowing our child had lived longer than they were "supposed to," knowing that we have no idea how long we have with them, and knowing that unless something happens to us, we will be at their funerals.

We told her we don't think about it.  We shove it in the back of our minds, way, way back, and leave it there.

But sometimes, it creeps out. And sometimes it charges out.  Tonight it was somewhere in between, and I don't even know if it's really "something" or not.

We were at the band concert, and Aaron was with us.  When the Jazz band started playing (and they were really good!) Aaron got startled.  But he was a little off before, too.  But his body started jerking, and spasming.  And it continued, even when I took him outside.

Was I seeing seizures?  Maybe, possibly.  I know it sure brought back what the future will bring in spades.  I decided to just get him home and watch.  Whatever it was, and it continued all the way home, stopped once he got in bed, thank heavens.  We don't have a seizure protocol or seizure meds.  Our only option if they continued was to call in help.

Here's hoping for a quiet, restful night.

Friday Morning:
Aaron did have a very calm, quiet night.  I did a little research and yes, being startled, especially by a loud noise, can bring on seizures if you're prone to them.  Many, many kids with his challenges have them and there have a been a couple times over the last few weeks where we thought he might be having one or two.  We're going to have to look into this.

Reality is too much to take in heapfuls, 

but sprinkle it sparingly upon life's path and most can tread it lightly. 

~Terri Guillemets