Remote Access

Hello Again.

Did you think I'd gotten lost??

Perhaps gone on a permanent vacation??

I tried to.

Believe me.

But, the answer is much more boring than that.

Simply.......

My computer burned.

No, not literally.

 But it was D-O-N-E.

I couldn't even get the stinkin' mouse to move

That's how burnt up that ole girl was.

She was good to me for a few years,

but on to the latest and greatest.

Truthfully it's more like

on to the affordable and on sale,

but you get it.

It's still new. 

:)

Different brand though.

So there are all these new kinks and features to work out.

Like for starters.......

the first thing to do on any computer.....

Load your iTunes.

This did not prove to be simple.

And led me to one of the craziest things ever.

Have you heard of remote access??

This is where you can call tech support for help.

And you can simply click on your computer and they have 

immediate and complete access to your entire computer.

Say What Big Brother??

And I don't mean they guide you through this process.

I mean they take control of your mouse and start clicking away and

entering your domains.

I literally called tech-support and two minutes later some guy named

Hanson

(supposedly)

who lives in India

(allegedly)

was moving my mouse around and clicking through all my settings and

maneuvering through the process without me.

Just click click clickin ' away.

Now I'll grant you that Hanson (possibly an alias) was a very nice tech support man.

And the process was probably

eight million (an assured under-estimation) 

times faster this way.

Hanson probably would have had time to move to America by the time I was done figuring it out myself. 

But I was FREAKED out.

I did nothing but sit and watch him do his thing.

And then BAM, it was done.

Welcome to Globalization Internet style.

Welcome to my life Hanson.

I feel like we should have at least shook hands before that took place,

but whatever I guess.

At least I got my iTunes back.

And maybe Hanson has it back now too.

Hope he's a Ray LaMontagne fan.....

The Angel Gown Project

The card attached reads:
 

"The world may never notice if a flower doesn't bloom,

Or pause to wonder if the petals fall too soon.

But every life that ever forms, or ever comes to be,

Touches the world in some small way for all eternity.

 

The little one we longed for was swiftly here and gone

But the love that was then planted is a light that still shines on.

And though our arms are empty, our hearts know what to do

For every beating of our heart says that we love you."

I spent this afternoon with four other women

holding and packaging  the

tiniest, most precious pieces of fabric I have ever seen.

Angel Gowns.

They are all gifts of comfort and kindness to strangers from strangers

Suffering the unthinkable loss of their infant child.

One person saying to another 

' I care.  I can't take away the grief but I care.'

 

This is such a powerful way to say that.

There is such deep grief in the loss of a child.

But such beauty in the extension of a kind hand.

 

If you are interested in donating your dress for this project,

I will be accepting dresses to help send them on to the right place.

We are also looking for seamstresses willing to help create these amazing gowns.

If you are so inspired.

Angel Gowns

 

 

 

 

This is a wrap for babies born to tiny to fit

into the gowns.

 

 

How To Survive a Long Car Trip With Five Children.

This week we are getting ready to go to Nashville TN.  First we are making a pit stop in St Louis for a couple of days.

I get asked a lot about how we travel with so many kids, so I thought I would share my routine.

This is how we get ready to roll!

First things first - Make a Plan! 

A plan that cannot be undone.

A solid unbreakable plan.

Step Two - Do the laundry.

 I do this at least one week maybe two weeks ahead of time. This gives me plenty of time to redo all the laundry once it has been dug back out of the carefully packed suitcase and reworn.

I like to consider the first round of packing practice.  This saves me from going insane about the fact that I already washed and packed those clothes once.  It was practice.....

Step Three  - Clean the house. 

This is essential in case a burglar should enter the house when gone. 

While stealing all my items he will certainly be impressed with the cleanliness of the floors.  This may delay him long enough for the neighbors to call the police.I am a little OCD about the cleaning before leaving.  I would hate to see the headline in the Courier

 'Local Woman Goes On Vacation - Leaves Dishes in Sink.'

The shame.  

Step Four - Pack.

What do I pack?  

1. Clothes

2. Everything else Target sells.

Step Five - go back around the house and reclean everything the children have undone while I was packing.

Once I am done cleaning again i will surely have the pleasure of repacking everything the children unpacked while I was cleaning.

This will happen repeatedly...,,

Step Six - Freak out on husband about the things still left to do while he stares at me like I have lost my mind.  

Step Seven - Drink the beverage he just handed me.

Step Eight - Go to bed.

Let him pack the rest, whatever it may be, I'm sure it will be fine.

Step Nine - Wake up.  Decide it's best not to check the luggage to see what he packed. Just knowing  he fit 10 days of needs into half the space of a suitcase is scary enough.

Load it all in the van and GO!!

Step Ten - Throw the plan away.

1. We didn't need it anyway. ;)

Progress Report

It's been some time since we talked.

I apologize for leaving the story half told.

SOOO.....

Let's jump right into the main question.

How is Audrey doing???

To make a short answer long I will say that we haven't given her a tube feeding for almost..........

TWO WEEKS!!!!

That's 2!! With a 't' and a 'w' and an 'o'!!

She is really progressing wonderfully.

I couldn't have ever asked for her to do so well so quickly.  

It would have felt like I was asking for too much too soon.

But she was ready.

Maaaaaannnnnn was she ready.

Every day she improves just a little bit more and stands a little more firmly on her own two feet.

She LOVES ice cream.

Oh yes and M&Ms.

Popsicles.

Cheese Puffs.

At this point it's all about consumption and calories, not nutrition.  

Once her feet are solidly planted in the eating world we will start to focus more on diet but for now.... Eat up!! Eat it all up!

Another bowl of ice cream anyone???

Absolutely!

For all the other momma's fighting battles for their babies I hope this offers a ray of hope.

Pops.

Dads.

 

Aren't they great??

Mine ranks with the best of the best.

Why??

Have you met my dad??

Let me introduce you.....

This is my dad.

 

 



My dad has walked a hard journey through his life. 

Not only has he walked a hard journey but he walked that hard journey with a little 9 year boy and a little 7 year old girl tagging along behind him. 

Holding on for dear life.

And he never let us down.

Who curled my hair for church on Sunday mornings?? Burning his fingers a million times but always protecting me from his mechanically inclined but not beauty oriented fingers?

My dad.

Who not only worked to put supper on the table but also fixed supper nearly every night? 

My dad.

Who taught me not to give up on life even when it throws you one of the worst situations possible?

My dad.

Where do I still go when I need a soft spot to fall?

My dad.

Most importantly my dad taught me that you must own the choices you make. Whether they turn out for the good or for the bad, they are yours.

 

And that no matter where I am or how hard I fall, there will always be one man to give me his hand, over and over again.

Happy Fathers Day Pops.

Love you to the moon and back.

Dr Visit

Permission Granted.

Our pediatrician has given us the green light to go ahead with Audrey's tube-wean.

He will be right behind us.

 

It was one of the best meetings I think I've ever had with a doctor.

And not just because he agreed with me, but because he was open and honest with me, voiced his approval and concerns and gave his utmost to us this afternoon.

 

So....

Now we wait for the official 'plan' from Dr Wilken.  

He's not a techno addict so it could be a week or so before we hear from him.

 

But what is that in the grand scheme of things?

A mere drop in the ocean.

 

Here.......We.........Go!!!!!!

 

 

The Source

Dr.Markus Wilken

Have you heard of him?

No?

Are you kidding??

Really?

 

At our house this man is famous.

We have been buzzing about him for months now.

 

Waiting and waiting to hear from him.

 

Who is this guy??

 

Dr. Markus Wilken is 'The Source.'

The g-tube weaning guru.

 

Other hospitals and facilities in the US and all over the world call Dr. Wilken when they have a question about a tube fed child.

 

And today I actually Skyped with him about our little Audrey.

 

And he agrees, he thinks Audrey is ready to try tube-weaning.

(For those of you unfamiliar with the process, it's basically slowly reducing the calories Audrey gets fed through her tube to try and encourage her to eat orally.)

 

But, there's a catch.

 

Isn't there always a catch?

 

First we have to get her pediatrician on board.

Dot all our i's and cross all our t's.

 

And the second catch is that he is extraordinarily busy.

Markus travels the world helping facilities and other people with g-tube fed children.

His schedule is TIGHT.

 

So we will be doing most of this process through e-mail and Skype.

Well, Plan A anyway.

 

If Plan A doesn't work then Plan B is for Markus to physically meet us to work with Audrey.

 

But first things first....

Get the pediatrician on board.

 

So in a couple of weeks we will visit her doctor to get his opinion on the matter.

 

This could be tricky.

Western medicine does not advocate tube weaning.

They think that hunger does not facilitate eating in tube fed children.

 

But in our observations of Audrey,

This is not the case.

We think part of the reason Audrey doesn't want to eat is because she knows she is going to get fed through her g-tube.

So why would she waste her effort and time.

 

But a change is happening in Audrey.

She is becoming very very interested in foods, even with the g-tube.

She wants to try whatever it is you have.

She seems to like flavor now.

The catch...

Because there is always a catch....

She tastes it and then spits it out.

But her interest in food is being piqued.

 

So we talked to Dr. Wilken this morning by way of the amazing internet.

He was at his home in Germany

and we were in our little tiny town in Kansas.

And we came up with Plan A.

It won't be fast, it might not be pretty,

but there is a new plan.

 

How did you hear about this man??

 

It goes something like this:

Girl from Kansas joins a Feeding Support group on Facebook.

Support group posts a video of a little boy overcoming his oral aversion. 

Girl from Kansas finds woman from Australia who posted the video.

Woman from Australia gives girl from Kansas a man from Germany's e-mail

and then the girl from Kansas begins to stalk the man from Germany. 

E-mailing and e-mailing and e-mailing until.....

BAM!

There he is.

Talking to us through the magic of Skype.

 

We have our fingers and toes crossed.

 

Cross yours too.

 

 

 

 

Happy Birthday

A Magic Button.

 

Two years ago today, I prayed for one of these.

 

Begged.

 

Please, Please, Please.

 

I would have done anything.

 

As I laid on the operating table, staring up at the ceiling

I thought to myself.

'You can do this, you can do this.'

'You are strong enough.'

'Breathe.'

'You have to be there for them.'

'They are counting on you.'

'You are all they have.'

 

The seconds took hours.

I tried to focus on little things.

The words the doctors were saying.

The nurse anesthetist behind me, trying to keep me calm.

The buzzing noises the sixteen other people in the room made.

Michael going in and out of the room.

And in and out.

And in and out.

 

I remember how HOT it was in the room.

HOT.

 

Then I heard:

"Are you ready?"

I shook my head yes.

I couldn't muster actual words.

 

And then....

The smallest human beings I have ever seen

were delivered to me.

These precious tiny human beings.

 

2 lbs 12 oz

1 lb 3 oz

 

And I lost it.

 

I remember the nurse anesthetist holding a washcloth to the sides

of my eyes catching the unstoppable flood of tears.

I remember her being so kind and comforting.

 

And I remember thinking..

'I would give anything for a magic button.'

'I just want to fast forward two years.'

'This is too hard. I don't think I can walk this journey.'

 

And now here we are...

Two years later.

 

Now I would use the magic button to go back to that day.

Just to be able to say

'They're going to be OK.

Hold on, it's going to be a bumpy ride, but they're going to be OK.'

 

We've reached the magic button day.

 

Happy Birthday Maggie and Audrey.

 

 

 

 

 

 

 



An Episode on What Should Have Been a Normal Friday

Friday.

Totally normal day.

This is how it always starts.

There's no real reason for the madness.

It just happens.

I happened to be in the basement looking for extra paper towels.

(I did not collect any paper towels.

In fact, I currently still don't know what the paper towel situation looks like.)

What I do know is that there was a bucket of paint down there.

And I have walls to put said paint on.

What is the likelihood of that??

Probably pretty infinite, but still.......

Which wall, which wall???

Hmmmmm

Ah! That one!

Now..... I know I've said it before 

but I'll restate that I love to paint.

And not only 

do I love to paint,

I also am not afraid to put a new color up at any moment.

It's a sickness really.

This time it's pretty safe.

How can you go wrong with brown???

These are the thoughts that feed the madness.

So I took that chalkboard down and began to paint.

First coat.

Successful.

But.......

While I waited for it to dry I couldn't help but stare at the Formica countertops that cover the space on our wall between the actual countertops and the cabinets.

I have spent many a minute trying to decide what to do with that space.

And so.........

I did something.

I grabbed the brush back off the sink and put it back in that paint bucket.

Yes.

I painted the Formica.

Is that a good idea??

Probably.

(My father would probably disagree with that statement)

I mean you can paint countertops with that chemical-laden paint so why not countertops on the wall??

Yes it's a completely different kind of paint but surely it doesn't matter.

Total Marketing-Scam.

I really only believe that for the purposes of this project.

Will it stick??

Uhhh.....

I may not fully know the answer to that question but right now it's sticking great!!

Three hours on and lookin' good!! 

Does the Mr know you did this?

No.

I admit I did this without prior written consent.

Maybe he won't notice and then when he finally does I can just say "you just NOW noticed that? It's been there for weeks!"

Honestly I may use that line either way.

Seems like the best shot of avoiding explaining myself.

So here it is, the after shot of the wall and a before and after of the countertops.

The plan is to use this as a weekly calendar of sorts to help this lady get her schedule together.

You know, so random painting sessions don't happen.

I'll stencil on the days of the week above the frames.

right after I get organized.

;)

Before: lotta white happening there

Painted Formica!

Genius!

Possibly.....

I think it turned out all right. Surely the Mr at least won't mind it.

Gotta run.

I need to find the best hiding spot in the house just in case.

:)

Tying Up Loose Ends

Colorado.

We came, we saw, we went.

But why did you even go??

Perhaps I should expand on my previous post.

Audrey and I went to Colorado to visit

the Children's hospital oral feeding clinic.

Why?

They are a more specialized facility that has more experience with kids who have eating issues.

So what happened?

The second, I am talking the VERY SECOND we landed in Denver Audrey decided she was not a fan of the atmosphere. 

She was sneezing and congested and having reflux issues

out the wazoo.

But, the show must go on, so we went to the appointment where they watched Audrey eat or the lack there-of and interact with food behind a two-way mirror.

It was all very CSI.

Kind of a crazy feeling to know someone is staring at you and watching your every move behind the wall.

If you have issues with being paranoid I wouldn't recommend it.

At all.

Anyway, the summary of that trip was pretty much summed up in what the OT specialist said to me.

'There's good news and there's bad news and it's all kind of the same news. You're using really good techniques with her and following her cues well and we recommend that you continue keeping it up.'

Which is nice reinforcement that I'm doing what I can, but let's be brutally honest.

It's not working.

She's not much better today than she was this time last year.

I also want to be clear that Audrey is 'normal' in every other way. There has yet to be some other diagnosis to suggest this is a cognitive issue.

She walks, she runs, she climbs, she follows instructions, she talks, she sasses back, she shares toys, she steals toys, she hugs, she hits. :)

So what next??

Well, we are going to attempt to attend a two week intensive oral feeding clinic at some point this summer in Denver.

Then, who knows.

One step at a time.

Until then here are a couple of pictures of Audrey's newest adventure.

Safety first. :)

And whatever happened to that bathroom redo?

Well, I had issues with the curtains.

Yes, the curtains.

I have this issue with wanting to mix prints.

I know it's not a good idea, but I just can't help myself. 

I still want to.

Do I went through several curtains until I caved and went solid black instead.

I'm still trying to figure out wall art and should I replace the faucet??

Hmmmmm..

Now at first I wasn't sure I liked the wallpaper.  It seemed.....  Grandma-like. 

And not grandma-chic, just grandma.

But it's grown on me.

So if you're

Not sure you like it, check back several times a day and stare at it.

Look at it as many times a day as I do and in about two weeks you'll love it. 

:)

Shelves above the toilet.

May Day

Happy May Day!!

 

 

Who doesn't love May Day??

 

Surprising people with flowers and candy.

 

Sneaking from door to door with a little gift.

 

The best part is the mad dash home.

 

It's sooo much fun.

 

As a kid growing up I can remember my Grandma Marjorie

taking me and my cousin Megan to the store to buy

a bag of candy to make them.

 

We would scribble on paper, make a cone with it, fill it with

Grandma's candy and whatever flowers we could find

in her yard

 and sneak around the neighborhood.

 

It was the best.

 

Watching my kids do it now is just as good.

And can you tell they love the mad dash home too??

 

 

 

 

Sneaky Sneaks.

 

I also love May Day because it's such a good

testimony to the fact that a gift doesn't have to be

fancy or expensive to be great.

 

May Day baskets are so simple but yet

they make us all smile.

 

Some tin cans, paint, flowers, a lollipop or two

and a pin-wheel for good measure.

 

Perfect.

Simple.

 

Nothing shiny or glitzy or perfectly constructed.

 

A reminder that small things are such a big deal.

They can have such a positive impact.

 

Happiness in a tin can.

 

The Best.

 

Now if you'll excuse me the kids and I are going to go stare out the windows and wait for our neighbors to come home and find their happiness in a can.

 

Also ridiculously fun.

 



Leaving On a Jet Plane

For the next two days it will just be Audrey and I.  

Look out Colorado!!

Up, up and away!!!

Somewhere Over the Rainbow

Somewhere Over The Rainbow

Bluebirds Fly………

But what happens if you can’t even see the rainbow yet and have absolutely

NO CLUE

how far away it is.

Where did the rainbow go??

Is it around the next corner? Or the next?  Or how about the next??

Who runs the rainbow machine??

We are running this never-ending marathon to the rainbow with Audrey.

Bless her heart she must be tired by now.

Nobody can tell us how long this marathon is.

Maybe we’ve got 1 mile to go.

Maybe we’ve got 26.

Maybe it’s 2,976 miles, or more.

We just don’t know.

It rains along the road to the rainbow.

It snows.

Sometimes the wind blows you back from any progress you’ve made.

The crowd gets smaller and smaller as we continue our path.

It’s so easy to put your running shoes up and give in.

This week has been a series of backing out’s of facilities/people who shall remain nameless.

Morale is a bit low.

So today the focus needs to be, nay has to be……. Requires….. focusing on the others.

 

To those of you who haven’t given up.

Who peep through the closed windows and lock doors we run into along the way.

Who put your jogging shoes on with us even though the rules are unclear.

Who haven’t turned your backs when it got hard, even though you didn’t know where we were going to go next. 

Who walk through our door and try again…

And again…

And again…

And again…

 Thank You.

We'll keep moving.

We'll keep searching

We'll keep jogging along.

Because….

Somewhere over the rainbow……

Audrey will fly.