New Hope For The DufflePuds

I was very sad when I heard that Disney had dropped its role in producing the Chronicles of Narnia films. I had been waiting for "The Voyage of the Dawn Treader," the one book out of the series filled with wild, fantastic images made for the big screen.

That's not to say that I was overly enthused about the movies that Disney had produced. I think they went about producing and releasing them incorrectly, as does this writer/producer.

I think that there is an audience of Lewis fans who are outspoken Christians who would plop their money down to see a movie done artfully with state-of-the-art casting and production values, like The Passion of the Christ.

I was just happy to see someone - anyone - interpret the films and TRY to stay close to the unique storytelling, the fantastic world, and the truly memorable allegories present throughout the series.

Now the someone is Twentieth Century Fox. I hope they take their time, do it right..even it means reshuffling the deck of who is supplying the creative vision.

Pray For Sophie

Sophie Millard is Bart Millard, the lead singer for MercyMe's, youngest daughter. I follow Bart via Twitter, and Sophie just took a turn for the worse with her breathing. She's been hospitalized with RSV.

Bart tweeted that he's not sure if he should go to his next show. I'm sure he's a wreck. Please pray for him and his precious daughter. Pray that she fights like other little girls we know.

A Talk With...Sam Provenzano

For those of you who have been following this blog for a while, you'll recognize Sam P's name. I met Sam really...really briefly for as close as I feel to her. She has been a constant friend and support to Jen and me, and a true Zoe fan.

The fact that I know Sam and call her friend is a testament to what God can do if you let Him.

Here's a quick excerpt of Sam's answer when I asked about Zoe's impact on her life:

"Seriously... the impact.. it has been overwhelming. Let me start off by saying.. I never have prayed or believed in something before.. well.. obviously she is fact that there is something out there. She has moved so many people.. reading the comments you get.. just gives you faith that there is hope out there"

Read it all here.

To Sleep. Perchance.

Zoe's still living her interrupted nights, although sometimes she'll sleep three hours in a row. Her most recent trip to Dr. Frommelt resulted in a reduction in her medicated patch. Dr. Frommelt thinks she'll soon be off the patch. She even set up an appointment for two months!

Oddly enough...to show you how times change...the appointment was on Zoe's 10 month birthday. I didn't realize it. In a way, that's good.

Up here in Wisconsin, we've had 65 consecutive days of snow on the ground. It was -1 on the way in to work. Bleck.

So, we're slowly putting away stuff from boxes, watching the days slowly get longer. Getting used to a little girl who hasn't given up. Slowly, our life ebbs on.

True Truths

So. Zoe's sleeping here, back to eating. Fever gone since Sunday. Doc says she's up one pound in one week! They're cutting back on her Clonodine patch...really liking how things are going.

I'm fully hoping - hoping - planning - to take her to Florida with me for Easter. Because we definitely need to drive away from this place. Please don't ask zackly how I'm going to GET to Florida, but details, details.

So...isn't it awesome to not have much to report? Ok, yes. Jen and I are exhausted, still trying to unpack while we work insane schedules. It's a whole other blog.

And...distracted. Look at this from today's My Utmost For His Highest:

The greatest difficulty spiritually is to concentrate on God, and His blessings are what make it so difficult. Troubles almost always make us look to God, but His blessings tend to divert our attention elsewhere.

Or to quote Kirk Franklin: "Some of y'all wouldn't pray unless something was happening to you."

Right Sam? Wait 'til you hear Sam P's story! Coming soon...

Teia Interview

I'm breaking a blogger rule and putting the whole interview up here...truly, because the webserver I'm using won't let me upload this anywhere else. Here's some of Teia's thoughts...

1. you just got back from a trip. Where did you go, who with? What did you do?

We went to Camp Biloxi in Mississippi and I went with my winterim class called "The Mission" and a few college students. Oh and brennick went too. haha

We helped some homeless people out by giving them food and blankets and then we helped work on the outside of some houses. We painted, created a trench for a drain, put gutters on the house...lots of stuff.

2. are there still people affected by the hurricane from a bunch of years ago?

Yeah there are tons of people still affected by the hurricane and are trying 3.5 years later to rebuild their lives. they all have so much hope to rebuild and get moving with their lives and to be HOME again.

3. what was the weather like?

the weather was really nice. the first day or two it was probably 60-65ish and sunny. towards the end of the week it was 20 in the morning when we would walk over to the cafeteria tent and we were freezing in our t-shirts. we wore layers the whole week but it wasn't quite "coat" weather (well for us at least).

4. did you get some good pictures?

we got some really good pics. well ok, i got some really fun ones...mine were a little more "artsy", some funny ones. and then my friend kirin ended up taking a ton of funny pics of my friend beth, me and kirin.

5. what do you look for when you want to take a picture

i don't know. i was just walking around and looking at the details of the houses'. there was this one house we visited right across from the beach that was still standing but barely. and i just walked through that house and found some really neat things like beads hanging from a bar, holding a door shut.

6. you turned 18. what's that like?

it's a number. well basically my whole birthday i was in MS and it was sunny and in the 50's...for the first time in my life, which was awesome.and the whole day kirin and beth kept saying and singing happy birthday to me in every way possible. they put Happy BDAY to every song that was playing and each time kirin looked at me she said happy birthday.

7. you're an adult now. Do you feel like an adult

um no.

8. did you have any goals you wanted to meet by now? Do you have goals for the future?

i don't think that i had any set goals but i'm glad that i've accomplished what i've accomplished. i've had some of my pictures on an album (which was awesome), i had some poems published in a poetry book and i've been on a mission trip. i dont think any of those were intentional goals like, "i have to do blahblahblah...by my 18th bday." but i'm glad that i did.

9. if you could live anywhere, where would it be?

i have no idea. i really liked the whole no snow thing for the past week but i would hate those little critters like cockroaches and lizard things and alligators. GROSS. but right now i like the burg.

At The Doctor

For a regular checkup. I tried to move it to tomorrow, but that day wasn't open. In fact, the next open day was March 19! Makes you wonder what will happen when the 50 million uninsured are insured. How easy will it be to get an appointment? How easy will it be to reschedule?

And...will state-run healthcare allow for Zoe at all? We're blessed to find a bunch of doctors who see value in preserving Zoe's life, who don't see Trisomy 18 as the end. But, others have simply said or shown that her "death sentence" means she should receive different, less, or no treatment.

Think that will get better or worse with state-run healthcare? In other attempts to bring state-run care through time and history, the state had to make Draconian decisions about treating the elderly or dying to care for those who they deemed would live. Come to think of it, I'm glad Zoe and my Dad were able to experience a different healthcare for this part of their lives.

Ironman's Ink

Ironman - Michael Hennessey, current world record holder for most Ironman competitions completed in a year - did an interview where he mentioned Zoe! Thanks, Ironman!

Continue to pray for him and his quest to make people aware of Trisomy 13 and 18.

Fever Breaks

Zoe's fever broke on Sunday, and after a few days of not eating much at all - and one short period where she couldn't keep anything down - she's back to eating and behaving a lot more like the well Zoe we know.

Just talked to my Pa and he's on the road back. The eating issues he suffered were definitely linked to the gall bladder. It demonstrates how sometimes doctors can get wrapped up in their area of focus and apply symptoms to that area.

It took insight of Doctor Rod - a long-time family friend - to consider the gall bladder.

So we praise God for all the people who have combined their expertise to keep Bats in health.

Teia At 18

Teia turned 18 today. Fittingly, she was down south on a mission trip. Her heart for service is her birthday present to all of us.

one handed entry

trying to not disturb sleeping z. shw\e won't stay asleep. fever of over 101 earlier. she antibiotics, but no relief yet. please keep her in your prayers.

Zoe Update and My Apology

Zoe is going to the doctor today. The last few days have been hard for her. She's struggling with something - uncomfortable and eating less. Long nights are even longer. We're hoping and praying this is something treatable and that she can get back to eating.

I've been swallowed up by two things: an overwhelming sense of fatigue in updating, especially helped along by people making me pay for my honesty here. My friend Ted says that I don't have to update or owe you all anything, and frankly, through the last month I haven't been honest about some of our family struggles and pressures we've endured.

But I also like sharing with you. I need your prayers. I crave your support and thoughts through this incredibly trying time.

The other thing is work! work, and lots of it. And given our times, I'm grateful for all the work, glad I've been blessed with it. I've got a huge project due this weekend that has been pretty fun and wildly demanding.

So, thanks for being patient with me. Pray for little Zoe. I hope that what's ailing her can be reversed. I hope that we get to see more of her and grow with her.

AE In First After Time Trials

AE had his gall bladder removed yesterday at about 8 pm. It had stones and sludge and gross gall things in it.

Today he saw some other patients walking the halls outside his room.

And he thought they were walking pretty slow.

Slower than he would walk. So he got up and sauntered out into the hall. And he started to bend over towards the floor.

Kirin hustled out to see if he needed help. It had been just over 12 hours since he had his operation.

Dad told her he was just getting down into the starting position. Thankfully he didn't get into a full four point stance, but he did bend over there and waited for Kirin to start him.

And then he took off. He walked 17 laps of his floor, lapping the slowest. He had Kirin start timing his laps so he could compete with himself.

And so as Zoe snores in the bed next to me, her grandfather is snoring somewhere. They will not go like they're supposed to. You cannot forget to fight. And if fight is in you, it doesn't leave. Ever.

AE. Oh, The GALL

Bladder. Tests show the gall bladder has some bad stones in it, some stuff rattling around in it, and maybe it has to come out.

What his ailment isn't is ..it ISN'T his cancer. The trouble eating and digesting and evacuating waste has all been a function of the bad gall bladder.

The hospital has finally allowed AE to have some fluids, but he's still in a bunch of pain.

AE update

Christa - my mom - called to tell me that Bat goes in tomorrow to get his gall bladder checked. Seems like Dr. Rod, long-time family friend and physician, thinks it might be related to what's ailing Dad.

Thank you all for your kind words and prayers. Keep lifting him up.

Time Will Always Tell

Washed By The Water
by needtobreathe

Daddy was a preacher
She was his wife
Just tryin to make the world a little better
You know, shine a light
People started talking
Trying to hear their own voice
Those people tried to accuse my father
Said he made the wrong choice
Though it might be painful
You know that time will always tell
Those people have long since gone
My father never failed

Even when the rain falls
Even when the flood starts rising
Even when the storm comes
I am washed by the water

Even if the Earth crumbles under my feet
Even if the ones I love turn around and crucify me
I won’t never ever let you down
I won’t fall
I won’t fall
I won’t fall as long as you’re around me

Walk The Walk

Not coincidental after I finished telling you about my most excellent father is to tell you a little about Tim Tebow.

I know that Tim is nowhere in the league of Your Favorite Baseball Player Chris Sampson. But this is a guy who walks the walk. Who got ESPN.com to write this:

"It truly would be a shame to submit to cynicism and not fully appreciate the gift of Tebow -- the way he plays football with an unquenchable passion, and the way he approaches life with even greater ardor. If you think he hits linebackers hard on fourth-and-1, that's nothing compared to the way he tackles his higher calling to spread the word. In this one instance, what looks too good to be true really is true."

Spread the word. That's what the sportswriter wrote. How many prisons have you visited (or have I)? How many of the sick in the hospital have you visited (or have I)? P.S. How many Heismans have you won?

You can change the answer to two of the above questions. Tim, he can answer all three different than you and me.

AE

Please pray for my dad.

I think every man hopes his son is a better man than he is, and on that wish I've failed miserably. There is no more honorable, God-filled, humble servant than my father.

Now he's hurting and sick and at the doctor. Please pray for him. Please lift him up like you lifted his granddaughter through these months. He needs your prayers.

Zoe Update

Zoe has settled in at home. Her most recent visit to the cardiologist revealed some very good numbers and signs that she was becoming more relaxed.

I recently took Zoe in to have her ears checked. She might have some kind of ear infection, so an antibiotic was prescribed. Dr. Chatton again echoed earlier comments on the healthiness of her numbers.

We're finally getting her to sleep more. Unfortunately, the sleeping occurs between 1 pm and 5 pm. then she is up and down, mostly up, for sure at night.

It's a really grinding cycle, especially now that Jen is trying to get back into her work cycle and my work cycle has again sprung to level orange - if you're awake, get to work.

So...right now, Zoe's catching up on sleep and her mom is working and her dad is working and the night looms...

A great worry to have, but now that we're fully past 9 months of this particular challenge, it's a tough one.

2008 Reminiscing - Robbie Seay

Robbie Seay just had his birthday, and as is the custom of this blog, I overlooked it and didn't honor it on time.

God sent Robbie Seay's music into my life to give me hope and remind me that of God's promises. I just listened to Robbie's music today and so many vibrant, stirring memories surged into my mind.

God sent Robbie Seay into my life to remind me that God is going to do what He will do. He will move the hearts of men - any man, all men, whoever He chooses - to do His will. To bring hope and comfort to a family that sometimes felt neither.

I am grateful - forever - for Robbie and what he did for our family.