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.