Breathe...

Breathe.

Here and now…

My word this semester is breathe…

Breath, life, focus.  It’s not like we can put it off, or breathe ahead of time.  If someone stops, there are literally minutes until there is no chance of reversal. There are no do-overs, no mulligans.  

We HAVE to do it.  Always.  

Wanna watch wheels spin and minds strain?  Tell a bunch of 7th graders that you have a child that thinks breathing is optional.  

“Wait, what?  I thought I knew what optional means.  I know what breathing is.  Maybe I don’t know…”

Nope, not really optional.

Breathing brings oxygen to our cells, takes away the waste.  Life-giving, the essence of who we are.  Oxygen brings the healthy glow to our skin.  Without it we are dusky blue, gray.  Lifeless.  

But breathing, deep breaths, they calm us, center us, remind us of our “being.”  Remind me life is precious, fleeting, fragile.  Now is all we truly have.

Focus, now, be in the moment, joy, spirit.  

Breathe.

He who only half breathes, only half lives. 

~Sanskrit proverb

Trisomy Awareness and Uninvited Gifts

So I've pretty much missed it.  

Trisomy Awareness month and Trisomy 18 Awareness Day.

I didn't even remember to wear blue on Friday.

BUT, for us, every day is Trisomy 18 Awareness Day.  And I hope for my family and friends, they're pretty aware, too.  

For us, Trisomy means having more medical equipment than you even knew existed.  It also means having more love than you knew was possible.

It means measuring outings in battery power and oxygen needs.  It means measuring days by smiles and grins (and goofy jokes).

It means special needs schooling, IEPs, and evaluations.  It means bringing nurses into your home that become family and impact everyone's lives for the better, not just his.

It means learning a whole new language, new culture, new life.  It also means figuring out when you're 50 what you actually want to be when you grow up.

It means treasuring life beyond measure, and knowing you'll say good-by much too soon.

Trisomy is indeed the Journey of a Lifetime, not just his, but ours as well. 

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

Update on Aaron:  There are two reasons I haven't been as on top of things as I usually am this month.  First is school.  I am loving my Masters program, but it is INCREDIBLY time consuming!  I have been writing, TONS!  But my professors are the ones that see it and I don't think it's stuff the general public would find interesting anyway.  

The second is that Aaron is requiring a lot more care.  He'll have a good day or two, and then some pretty bad ones.  Friday was awesome!  The pictures are from a field trip they took.  He's still not as smiley, but he went swimming and bowling and had a great time. 

Now?  Well, he hasn't slept since his nap after school on Friday except for some 5 minute micro-naps.  He's fevering again, more today than yesterday.  We're using Tylenol and rescue meds and they put a dent in things, but that's about it.  

This is hard, really hard.  Emotionally and physically.  It reminds me of our first year with him.  We've spent 32 days in the hospital since January 14th over three different admissions.  Being admitted takes hours as they do work-ups and make decisions, while also attending to other patients ('cause you know we aren't the only ones there).  

It takes another four hours or so coming home.  An hour to get everything ready to go, an hour to drive home, and another two hours to get everything settled and taken care of here.  (Equipment needs to be changed out and meds processed and organized, etc.) I also had no nurse Wednesday night when we got home.  It doesn't happen very often, but Wednesday was one of those times when there was no one to cover.  So it was me.  By Friday, March 18, Trisomy 18 day, I had nothing left to give.  I made it through classes (somehow) and crashed hard.  

But we keep doing it.  We keep on going.  He's worth it, he's MORE than worth it.  Those smiles, that spirit.  Even when he's sick, it shines through.  In a conference for school this week someone referred to an "uninvited gift."  

"Uninvited."  Yeah, certainly didn't ever hope or dream of having a child who had to deal with so many challenges.  But he definitely is a gift, a gift from God.  

"Every good gift and every perfect gift is from above,

and cometh down from the Father of lights..."

James 1:17

Heading Home

We're outa here this evening!  

Yep, heading home.

All in all, it looks like he was having some sort of muscle spasms or something, some kind of pain.  X-rays were all normal, they even did ultrasound of his feet to make sure there wasn't fluid or tendon involvement.  It was all good.

So here we go.

His feet are still not in a neutral position and he really resists putting them that way.  He was offered botox or serial casting (we did that when he was really young).  Honestly, I just don't care.  Botox are injections, and have to be done repeatedly.  Casting would restrain his feet.  Frankly, this kid isn't on the track or football team.  He doesn't even walk.  I just don't care to put him through that.  

We're going to move on.  We may revisit it when he's doing better.  Right now, I just want my kid be home and happy.  I think those are pretty good goals.

"It’s been my experience that you can nearly always enjoy things if you make up your mind firmly that you will."

L.M. Montgomery

We're BaAAack

Wheelchair tune-up on Tues.

Yeah, kinda says it all.

Aaron's feet are kinda wonky right now.  When he was born, he had a vertical talus, also known as rocker bottom feet.  They were the opposite of club feet, angling up and out.  Sometime over the past month or so, probably when he was sooooo sick, they started curving in and down.  He started wearing his DAFOs (braces) to help them straighten back out but that may have caused pain.  Who really knows?  They didn't create pressure markings on his legs or feet, but it was challenging to get his feet in.  

Anyway, by Thursday, he acted really pained anytime his feet were touched, especially his left foot.  I wondered if there was some sort of injury.  We quit using the DAFOs and let him rest.

Saturday I decided maybe he ought to be seen, but mid-day (when I thought I'd take him) he was starting to look better, so maybe not?  (There's a LOT of second guessing going on here.)  Got some stuff done that morning and even got a nap in (YAY!).  Woke up from my nap and thought, we need to go in.

It was kinda weird.  I woke up and thought, "going to make the pizza I've been planning to make since Monday and then take Aaron in."  There wasn't any urgency or anything.  It was almost like, "gonna have dinner and then we have a soccer game, or a kid's concert, or whatever."  Just a matter of fact thing.  

Took him to our local ER, American Fork, because I figured it was feet and they could at least tell me what was going on, and maybe even fix it.  They may have.  I mean, once we got x-rays, he started moving them.  You know, like when you take the sick kid to the doctor and he starts acting fine just before the doctor comes into the room.

But they also did other x-rays and ran a bunch of labs.  In part I think because here's this incredibly complex kid, let's make sure we don't miss anything, and in part because we were going to do labs anyway on Monday.  Two days early isn't a big deal.

Yeah, about those labs...

Kinda wonky.  Kinda really wonky.  White blood count of 18.9 (normal 4.5-13.5), platelets of 263, which is normal but not really for him, and a jump from 55 the week before.  He usually hangs out about 130, normal is 150-400 and his highest ever was 188.  There were other markers as well.  

Now, it's possible that these are all related to pain and storming.  But it can also be indicative of a bad infection.  Guess where he is now?!?

Yep, in the PICU.  He also decided that he really liked the oxygen more.  He's hanging out on an ICU version of our vent using a bit (not a lot) more oxygen than we can deliver with our home vent.  He's also not sleeping, like at all.  I told him that he has to sleep before I'll hang up his toys.  

I told him when I first started working on prerequisites for my master's program that he had to behave.  I couldn't do school and hospital, and he listened at first!  I mean, really!  He took a trip a week after I finished those initial courses.  And last semester he did really well!!  This semester?  Well, it's almost starting to feel like that really rough first year.  Except that year I only slept in the PICU.  I never slept at home, I was too afraid.  I've told him I really like sleeping in my own bed now.  What a monkey. 

This kid ... 

I can't even.  

But hey, he's here.  He's still with us.  And that's so much more than so many other parents have.  We'll just keep keeping on. 

Do what you can, with what you have, where you are. 

— Theodore Roosevelt

Smiles!

Look!  

We've got smiles!

Pardon the lighting, but this was late last night and I didn't want to use flash or turn on the light and disturb the show!

SMILES!!

I honestly don't remember our last true smile.  How awful is that?

I know we haven't seen them since he went to the hospital on January 30th.  

It's March 10th.

Almost six weeks without a real smile. 

My mama heart has struggled the last eight weeks.  That's how long it's been since he acted like himself.  Truly, it probably started around Christmas.  That was almost three months ago, but he was still smiling and playing until eight weeks ago.  Then there were moments, sometimes a day or two, where things would be "normal" (whatever that is).  

He's still tired.  He still is not goofy and silly.  But we have smiles.

¨A smile is a curve that sets everything straight.¨ 

- Phyllis Diller

We've Been Home 2 Weeks Now

Leaving the hospital

I'm sorry, I really thought I wrote. 

I guess I didn't. 

I did put up a picture on Instagram and his Facebook page, but somehow overlooked the blog.

Sorry.

Anyway, we did come home on the 21st, two weeks ago.  It was rough.  Honestly, I had to work to persuade the doctor to let us go.  

He was (and still is) needing rescue fairly often from his storms.  His sodium and potassium levels were very much suboptimal.  Still fevering.  But really, there wasn't much at all that we were doing there that we couldn't do at home. 

So with plans for at home labs and a visit with Comp Care as soon as could be arranged, we left.  

Yesterday.

It's been rough.  Really rough.  He is still nowhere close to his baseline.  Initially, we were having to use his rescue medication at least once and often three times a day, which is the max.  A couple times things almost got away from us and we were using fans and cold cloths as well to bring fevers down.  But slowly, ever so slowly, he's improving.  And we're also getting better about intervening quicker.  

He still sleeps a LOT, and smiles are few and far between, and very small.  He doesn't appear uncomfortable, just oh so tired.  

But he hasn't needed his rescue med for about 48 hours now, a record, and he has gone to school a few times since he came home.  There is progress, and we're grateful for it.  

I'm praying that the reason it is so slow is that he was literally at death's door four weeks ago.  We're still watching a few labs.  He's still very bruised.  But I'll take whatever progress we can find.  

I mentioned yesterday in church that we are so very grateful for all the prayers offered on his and our behalf.  They are very much lifelines to God, and we cling to them. Thank you, thank you so much.   

The candle of prayer answers the darkness. 

~Terri Guillemets