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.