Updates & Ambulances.

Updates:

This little precious one has a family!
Can I get a woot-woot?!
No really.
Can I?
This is big news!

Oh the power of prayer! 
I cannot tell you how my heart soared when I woke up to an email this morning from his soon to be momma.
It made.my.day.year.

In other update news this little one's face has caused inquiries to pour in to just about every adoption agency working in China. Though no formal match has yet been made their are families waiting and ready so it looks like that sweet face is going to have a family and a {hopeful} life saving surgery soon.
Praise.HIM!

In ambulance news I'll give you one guess who this was at school for on Friday:

Yep.

I was hanging out at home
had actually nothing to do that day
house was clean ~ gasp!
laundry was done ~ double gasp!
no appointments, no where to be ~ gasp! gasp! gasp!

When the phone rang.

It was the school nurse....who is totally great.
We talk often considering I have a disproportionate amount of children that attend that school compared to the normal population.
For a school that is only K-5th we have
1st, 2nd, 3rd, 4th, 4th. 
I'm pretty sure she has my number memorized by this point.

So she calls.
And I joke that this is our weekly/daily phone conversation.
She jokes back about how our phone calls regularity has actually diminished in recent weeks.
Then she says she has Joshua with her in the office, that he fell off a chair and fell into the lunch table....
chest first
and then on to the floor.

And it was at about that point that I heard the sirens.

I could hear them both out my own window since we live only down and across the street from the school
and I could hear the sirens getting closer in my other ear through the phone.

She had to call 911.

But
she was so incredibly calm that it honestly didn't rattle me in the least.
She said his vitals were good, and that he was happily bouncing around the office.

So
like a total idiot
what comes out of my mouth is this:
"So do I need to come over there? Or is it all good?"

Yep.
I actually said that.

An ambulance is on the way for my son and I ask if I need to come over there.

I am beginning to think that I don't really process emergencies all that well
and that I am complete and total loser.

But I digress.

"Yes. Yes you need to come."
is her response.

Okiedokie, on my way.

So I arrive and here is what I find

One very happy smiley Joshua
and one quite horrified teacher.

I felt so bad.
I really think that experience took like 20 years off of her life.

I think I'll bring her a beer next time this happens.

So all is well.
Joshua has developed one nasty looking keloid scar over his incision.

Keloid scars can be painful
and itchy
and when you hit your chest on one when you are squatting on your seat
like a good little Chinese boy
instead of sitting
and your chest hits the table...
it's gonna hurt.
And it's gonna throw the poor lunch ladies and half the school into panic because you are not effectively communicating that you hit your scar
and not your brand new pulmonary valve that beats out of your chest.

So we hung out for about half an hour.

Sats were good.
Chest looked good.
I declined their invitation to transport him to the nearest hospital for a full cardiac workup
though you should know they too agreed that he looked fine
I promise I'm not, ya know, medically neglecting him or anything. 
I do have some good parental judgement.

So as the EMT's were leaving I did what any good mother would do

I sent him back to class with his teacher.

That whole time
from the phone call
to hearing the sirens
to chatting it up with the EMT's
my worry level hovered somewhere around
non-existent.

Oddly though
when I got home
my legs went weak.

I think it hit me then.

I have become incredibly complacent when it comes to his health.
Almost too much I'm sure.

If we compare it to the proverbial pendulum
I have managed to swing myself waaaaayyyy over to the Land of Complete and Utter Denial. 
Where smurfs sing songs, flowers bloom and nothing ever goes wrong.

I think this is due in large part to the fact that he looks absolutely amazing 
compared to 5 months ago.

So I truly don't fret and fuss and worry about him
but nonetheless
whether I am unconsciously choosing to ignore it
or not
the fact remains

he is fragile.

His valve is fragile.

And Friday was just one massive reminder of that.

And until we can get some fat on those severely malnourished bones
and some muscle built up around his chest
he will be.
And in the true spirit of irony 
by the time that happens
it'll be time to start all over again when his valve requires replacement.

So if you need me
I'll be saying goodbye to the smurfs and attempting to swing myself a little closer to center.

Not all the way to the land of the worry wart,
because I don't want to live there either
but at least closer to where I won't even think to ask if I need to come when they call an ambulance. 

I.
Am.
SUCH.
A.
Nerd.

Sad. So very sad.

Remember this little face?

He still does not have a family.

I'm going to repost what I wrote about him a few weeks ago.
Please share his picture,
share the post,
spread the word.
We have GOT to get this kiddo a home.
He needs treatment and he absolutely needs some love
because if you believe his file
his days on this earth are limited
but better yet
if you believe God
all things are possible through Him.

It appears a lot of families are asking to see his file but once they realize the severity of his issue they are not able to move forward.

Here's what I know.
He will need a new pulmonary valve and closing of the VSD associated with his diagnosis.
The new valve(just like Joshua) will need replacing every few years as the child grows and as it develops "plaque" and begins to not work properly. They will be able to see the valve begin to fail on the routine echos they have before these kids even develop any symptoms.
BUT he needs his surgery soon.
Like yesterday soon
Because if it hasn't happened already he will develop pulmonary hypertension which will make him inoperable.

Are you able?
Are you willing? 

Here you go.
REPOSTED.


1 heart baby.
1 family needed.

1.

Boy.
2 years old.
Diagnosis: CHD: Persistent truncus arteriosus (PTA Ⅱtype); Dextropositioned aorta; VSD

That sweet face has a terminal diagnosis. 

But ya know what?

So did he. 

And he waited. 
For almost 8 years. 


Until

And now

Which brings me to this

Please.

1.

Just 1. 


Go get this sweet baby.

Let me know if you want more information. mommyof4jays@msn.com

And here's a link where you can find out more about his diagnosis.

Our New Digs

Well, as I've mentioned
we moved this summer.

If my counting is accurate I believe this makes 9 states in nearly 14 years.

I feel like I could find Target in darn near every state in America

but I digress.

I thought I'd give you a little tour of our new abode while it's still clean 
because it always looks like this

So welcome.
Welcome to our home.

Doorstep

A favorite room of teenagers in our testosterhome

Entryway by the front door.
I try to get a little sumpin-sumpin from each of our bases that we are stationed at
and this was one from CA wine country.
I brought some snow back from North Dakota
but ummmm
yeah.

The kitchen and dining room
and yes
that's a giant fork, knife and spoon

.....what I wouldn't give to get a pair of chopsticks that matched up there too
because seriously
that would be so funny.

Our table is ginormous.
It makes throwing rolls at the kids over dinner supah fun.

Here's the kitchen.
If you need me.
Odds are.
I'm here.

And here is what sits above our couch in the living room.
Which reminds me I totally forgot to take a picture of the living room.

Love it.
Want one?
You can get it here.

I was going to show you the upstairs but ya know
that's like 12 stairs I'd have to walk up.

So that concludes today's partial tour.
Please exit the ride to your right.

Oh wait!
Stop!
Come back to the ride!

I forgot the shirts!
A few of you have asked where I got the boys shirts from yesterday's post so here ya go!

Jason ~ White 147 million orphan shirt (it says Minus 3 on the back in our case, though it's customized for you) you can get that here for a limited time
Jack ~ iPray. I got that at a Christian bookstore years ago.
Justin ~ got love? adopt. Minus 1 project, check it out here (lots of colors to choose from)
Jacob, Jordan, Joey and Joshua ~ Faith, Hope or Love, You can find them on Facebook. Just search Faith, Hope and Love Shirts (lots of colors to choose from)

All of their shirts, sans the iPray one, help either feed kids, bring clean water to kids, or help kids come home to their families.
So it's shopping with a purpose
which
hello
is my favorite kind of shopping.
They are pretty cute shirts all made by some pretty incredible people. 

Ok
now
Now you may exit.
G'bye.

Globe Trotting.

What I'm learning
is that the world of families of kiddos with heart issues
is large.

There are a lot of us.
A lot
A lot of us.

And there are equally some pretty incredible organizations that exist to support these families through information sharing, networking doctors, research and sometimes
even a little fun.

We were invited to see the Globetrotters last week.

Well,
initially our "affected child and one parent" was invited to see them.

And as John and I sat on the couch that night trying to decide if we should accept and one of us should just go with Joshua and leave the rest home
or if we should get tickets on our own for the other kids
......which we quickly ruled out when looking at the prices of the tickets X 7, yikes!
we decided to think about it and we went to bed.

But God
but of course He is in the details.

And wouldn't you know I woke up that next morning to an email from the director of the organization saying that she happened to run in to Joshua's cardiologist nurse and she told director lady that we had 7 sons and how they would like to extend the invitation to our entire family.

Well.
Alrighty then.
Thankyousomuch!

So I responded, accepted and then shortly after John left the country.

No problem.

I got this.

We had a great time.
Great seats and an opportunity to meet and greet some of the players backstage before the game.

And it was at that point that the "suggestion" in the email invite that everyone "Go Red" for the event to support heart disease awareness....and the lack of red in my children's wardrobe became very apparent....
because then this happened:

 So stinkin funny.

Jordan made the big screen

We ran into Globey on our way out of the bathroom

which....come to think of it....Globey probably had to go to the bathroom......the world is made up of mostly water after all so homeboy homeglobe probably has to tee-tee a lot.

We checked out the court

and we had a good time.....despite the look on Justin's face.
He was being goofy.
He's really not angry at basketball....I assure you.
Now the man behind us I'm not so sure.....he may very well be angry at the game.
I dunno.

And then just after half time
this happened

and all was right with the world once again.

Honored

To have been asked to contribute to No Hands But Ours. 

My first post is up today if you want to check it out
and barring a severe case of bloggers block
ha!
I will be contributing once a month.

And seriously, have you seen the changes that Stefanie has made over there recently? I got lost all up in that site for hours yesterday, so much great information!

If you are thinking about adoption I highly recommend checking out the lists of needs over there. You can find that link here. She has matched the specific need with lists of families blogs that have children with that specific diagnosis and additionally there is some great description and illustration on a whole host of special needs. Truly a remarkable resource for families.

Happy reading!
I'm off to pretend like I am not sitting by the phone as today the local cardiologist should be receiving that echo tape from last year.

Anybody seen my chocolate?

Are You Freaking Kidding Me?

Meet Joey.

He's cute.
He's little.
He's my son.

Joey has repaired ASD, VSD & PDA.

Joey's a healthy,
though tiny
little guy.

He runs.
He jumps.
He plays.
His O2 sats are great.

Healthy.
Happy.
This is Joey.

Joey saw a cardiologist in May of last year.
He'd been home nearly 4 months at that point
and just as a precaution to make sure his repair that he had done in China as an infant was fully successful we were sent to cardiology.

No prob.
I'm down with that.

So we go.
And wouldn't you know it,
it's perfect.
His patches look great,
his EKG looks great
Echo looks great
Normal.
Normal.
Normal.

Super.

We are told to just have him followed every 1-2 years just to make sure everything still looks good but they see no problems and don't anticipate there ever being any.

Alrightythen.

So here we are.

2012
We move.
And since it's been a year they refer us again to a cardiologist,
a new one now since the move.

We go.

And as I am driving the 35 minutes to the new cardiologist I begin to have a conversation in my head that goes a lil sumpin like dis:

"Wow, this drive is so much closer than Joshua's cardiac team. Hmmmmm.....I do love Joshua's cardiac team....but they are so far away.....maybe I should think about having his normal every few week outpatient care taken care of here but keep the surgical team far away for when he needs his next surgery. It's so much closer....so much more convenient. I have met this cardiologist already as he is the one that admitted Joshua a few weeks post op for his infection on his scar......yes.......I like this idea....I think I'm going to ask about this....."

And then we arrive a short 35 minutes later.

And we walk in
and they immediately take us back
EKG check.
Echo check.
and all the while I am thinking
"Oh yes. This will be great for Joshua too! SO much closer, it won't take all day to drive there and back. This is gonna be great!"

And then they put us in the exam room and say the doctor will be right in.

Wow!
We are going to be done by lunch!
Holla!

So we wait

and wait

and wait

and wait

and wait

and

w
a
i
t.

And it is at about minute 35 that I open the door to casually remind people that
ummmm
hello
we are still here and have not yet been seen.

So we wait
and wait

and as the minutes tick by I start to get slightly irritated and the conversation in my head then moves to
"Well, no way I am switching! Joshua's cardiologist NEVER makes us wait this long! Sheesh! This is ridiculous"

At about minute 45 I decide to take Joey for a stroll in the wheely doctor chair up and down the hallway to
A: entertain him
and B: to remind people that yes....we are still here.

As I go down the hall I see the Dr. not even in an exam room
but in his office
sitting with another doctor looking at images.

Ugh I grumble in my head.
Can't they do that later?
It's not like he is behind with a patient in an exam room even.
He's hanging out with another doctor looking at echo images.

So Joey and I do another lap and the next time we come around there are now 4 doctors in his office
and one more on his way down the hallway.

My blood is about to boil.

So as I walk by he sees me this time and I raise my eyebrows and give a slight smile as if to say
Dude. Could you do that later and come see us now so we can go? It's been over an hour.

We stroll back to the room as I finally see the doctor emerge and begin down the hallway with another doctor at his side.
And as he begins to speak
I realized.....

It never once entered my mind that they were looking at Joey's images.

And my heart sank.

I don't really remember much of what those two doctors said.
I remember some of the questions like
"Does he have chest pain when he runs?"
"There was no mention of this from his previous cardiologist?"

And when the words "sedated MRI" and "PAPVR" and "possible surgery" starting flowing from his mouth 
my brain
shut.
down.

I went on autopilot.

"Ok, MRI, sounds good. Thanks so much. We'll see you in a few weeks then." Or something to that effect came out of me.

And as we got into the car,
I turned around and handed Joey the lunchbox I had made for him
put on his Chinese songs CD
buckled my seat-belt

and it hit me.

Partial Anomalous Pulmonary Venous Return (PAPVR)

What the?
What did he just say?
Did he just say what I think he just said?

There were probably a couple of doctors sitting back there thinking to themselves, "Wow. She handled that really well."

Uhhhh no.
I just have a delayed response I think.

So that's where we are at.
It has something to do with how many pulmonary veins are feeding into something or other.

If my head hadn't been spinning I may have been able to clearly articulate to you what he said.
But it was.
So I can't.

He can apparently clearly see 3 veins on the echo but where the 4th is, is a mystery.
If there are two going into one place they can watch it and see how quickly the ventricle is swelling.
If there are three in one place
they operate.
They have to.
If they leave it as it is, his ventricle will fail.
It's kinda like a balloon.
There is only so much intake it can handle, only so far it can swell. 

They don't know why this is.
He did say he couldn't really believe what he was seeing on the echo which is why he called in the rest of the team to his office just to make sure he was seeing what he thought he was seeing.
People that have had a late ASD repair(like Joshua's age for example) or no ASD repair, can expect to have an enlarged ventricle because the blood was overflowing in there for so long.
But this isn't the case with Joey and his ASD patch looks great, no leakage.

So now we look at the pulmonary veins.

Here's where it gets sticky though.
Joey's echo from 10 months ago?
Normal.
The right ventricle was normal. 
So if that is truly the case then something has gone awry with his heart over the last few months and now we have a problem.
a "significantly/severely enlarged" right ventricle problem.

He has somehow gone from normal, to far from normal in a relatively short amount of time.

As of today the tape of his echo from last year is on the way to his new cardiologist so he can compare last years to last weeks.
His MRI is scheduled for early April right now where he will undergo general anesthesia and we will get a clearer picture of what is up with his heart.

If it's two veins in one place then we watch it closely to see how quickly it is swelling.
If it's three
then I will be in the corner sucking my thumb
because walking through another open heart surgery with another one of my children so soon after the last?

I don't know if I can do that.

HIV info for you. Because he still waits.

1 Family Needed. 1.

I know many of us have seen this:

http://www.thenanfang.com/blog/zhongshans-3yo-hiv-orphan-has-hopes-for-adoption/

 

and ugly cried over this precious child. 

And though the facts of that article and his everyday life are a bit skewed(he does actually get out and interact with other kids)
the true fact remains

He needs love.
He needs life.
He needs a family.

Allow me to introduce to you to him.

People, meet Mr. Cutie Pants
Mr. Cutie Pants, meet People!

3.
Year's.
Old.

HIV +
and in need of a mommy and a daddy.

HIV is not what it used to be.
Educate, educate, educate.

Please.
Someone.

Don't make me ask John for another one
......I'm running out of J names.

Shoot me a message if you'd like more information and I will point you in the right direction. He is ready, he is available, and he needs you!

The Teen Scene

Wanna know something about me?

I.
Heart.
Teenagers.

True story.

I never thought I would.
In fact
when Jason was a baby I remember taking great offense
(in my head anyway....I rarely take great offense outside of my head)
to anyone over the age of say
4
coming any where toward my precious teeny tiny lil baby.

Funny thing though.
That tiny little baby

grows.

He grow big.

Like big
big.

And now?

Well now I be muchh mor edukated
and I have realized that teenagers

are very cool people.

It's like watching all of that love and training and nurturing and prayer
start to take root
as you watch them become

well

humans. 

Grown up humans. 

I'm telling ya.

It's incredible.

The harsh irony is that just as they become quite interesting to be around
they become quite busy in life

baseball
youth
homework
sleeping
eating.

So I don't see them as much as I would like to.

In recent days as John has been out of the country I have been juggling the extra curriculars of all of these children
solo.

It's going fine.
It just necessitates lots
and lots
and oh yes lots
of driving
and coordination.

So as they are the oldest
and most able to secure their own transportation home
I leave them notes on the one or two night's a week that I may not be there right when they get home.

Here was tonight's note

It's just my little way of staying connected to them
passing on pertinent information
and maybe giving them a laugh....or causing them to think I'm a total nerd bomber.
One of the two.

All I know is that in 3 and then 4 short years
I'm going to seriously miss these faces everyday.
Beyond the obvious mushy mushy love I have for them since the day they emerged from my loins,
they frankly just entertain me.

They cut each other's hair.

Though they lack any skills to really do so.

They mess around with their brothers

And they enjoy bacon.

Copious amounts of bacon. 

Empty nesters, I don't know how you do it.
I'm having anxiety already.
Must go sob into my pillow now. 

Abby.

Meet Jean.

She's amazing.

She and her husband have heeded God's call to care for the orphan in big ways.
Big
BIG
ways.

Wanna know something else about Jean?

If not for her

Joshua would probably not be alive right now. 

Not.
Alive.

Yep.
That's what I said.

I would have never heard about Joshua if not for Jean.
She advocated for him.
She put his picture on her sidebar.
She and Jesus are the reason that boy is soundly sleeping upstairs in my home right now.

And now
Jean needs prayer.
Abby needs prayer. 

She needs healing.

Prayer warriors activate!

A Public Service Announcement of Sorts.

When traveling to
and henceforth
arriving at your destination
which is your local plastic surgeon's office to begin the process of your child's cleft repair
do not meet your friend there
who has also adopted a cleft affected kiddo

get out of the car
get the kids out of the car
and then begin chit chatting and walking toward the building.

Because you know what?
You will forget to put change in the meter

and then you wanna know what happens?

This.

This is what happens.

Because even though you like to use big words like
"henceforth"
they will still give you a ticket.

Henceforth,
upon arriving home with said ticket
do not
I repeat
do not
place it upon your desk that may or may not be slightly unorganized.

Said ticket will get lost in the shuffle
and one month later when you unearth it
and wipe the dust off
you will see that said ticket clearly states that if not paid within 15 days your $25 ticket increases to

 
Yep.

I.Am.Awesome. 

This concludes today's PSA.
I hope I have henceforth helped to edukate the public at large.

1.

1 heart baby.
1 family needed.

1.

Boy.
2 years old.
Diagnosis: CHD: Persistent truncus arteriosus (PTA Ⅱtype); Dextropositioned aorta; VSD

That sweet face has a terminal diagnosis. 

But ya know what?

So did he. 

And he waited. 
For almost 8 years. 


Until

And now

Which brings me to this

Please.

1.

Just 1. 


Let me know if you want more information.