Pneumonia

Zoe has been admitted to Children's because her pneumonia is worse. Please pray. This has to turn around, and doctors are hoping intravenous meds will turn the tide.

Color's Back

Zoe went to the doctor today and she couldn't get her sat levels up. Usually the trying time is when she sleeps. But today, while awake she was in the 70's with oxygen. Jen brought her home and later last night - just a few hours ago - she actually woke up instead of a slit-eyed consciousness. Not her silly smiley self, but we did get the hand held high in the light.

Now she's snoring with 02 on....just pray hard, folks. If she's not better by Wednesday, they're going to find a place at Children's for her and try to find out why her sat levels are so miserable.

Zoe's Happy Birthday

Zoe and Cousin Anna hanging out.

21 things we've learned about Zoe through 21 months:

1. No idea that people sleep at night and are awake during the day.
2. Steadily improving with therapy.
3. Is at a 5-6 month old level in development.
4. She can reach for and pick up a toy.
5. Grasp things longer.
6. Working hard on rolling over.
7. Practicing sitting up.
8. She'll push a button to activate a toy when she figures it out.
9. Intentionally waving hi and bye-bye.
10. Working hard to form her mouth into speaking.
11. Loves Pediasure.
12. Daddy's girl (but loves her momma).
13. Loves loves music. It makes her smile.
14. Likes to use her foot as a feeler.
15. She'll run her feeler foot on people and things to feel texture.
16. She especially likes running her feeler foot on keyboards of laptops.
17. Is still taking Captopril twice daily.
18. Isn't a fan of fruit baby food. Prefers baby food with meat in it.
19. Breaks into a huge this-is-hysterical smile when her face is smushed against something.
20. Still loves looking at her hands.
21. Since Daddy took an hour nap and drank coffee to stay up with her tonight...has fallen asleep.

Crystal Clear

Zoe visited the doc today and a chest x-ray showed her lungs clearer than in August. Now we can all take a sigh of relief.

Jen and I are just worried about how quickly the flu can overtake s little one like Z. It makes for sleepless nights and tension...Jen was worried that Z was receiving the correct amount of meds. You wear it all inside and it wears you.

Ding! Sparkly x-rays tend to get you out of the funk.

ZOE (string)BEAN

Zoe had a run in over the last few weeks with a possible infection. I'm sorry, folks...but the last few weeks have rivaled any in my life in terms of being busy but Zoe became very upset and in those instances, our medical position is to treat an infection - even before there is hard evidence of one.

In this case, Zoe received a series of shots in her legs over three days. By the middle of day 2, she was returning from being really uncomfortable. She still has the little scar/bruises on her legs now.

BUT...the big news is that she is up to 12 pounds, 14 ounces. A long, too-skinny, but GROWING stringbean.

September 15: Convergence

Tomorrow three teams of doctors will tend to Zoe and hopefully give us some answers as to what's taxing her breathing while she sleeps.

At the same time, Zoe's big sister will get braces put on...and then in the coming weeks, seven teeth extracted.

Later tomorrow, three of Zoe's older brothers and sisters will try out for a play - two of the three for the first time.

It's funny because in years past, the third of these three statements would have led to quite a stressful night before.

Then again, the three who are auditioning did bring you work like "The Life of a Carrot." I think they'll be fine.

The song that's carrying me through is "This Is Our God" performed by Chris Tomlin and David Crowder*. (Alas, all I can find on YouTube is the non-Crowder version). Peace to our madness.



A refuge for the poor, a shelter from the storm
This is our God
He will wipe away your tears and return your
wasted years
This is our God
Oh... this is our God
A father to the orphan, a healer to the broken
This is our God
And he brings peace to our madness and comfort
in our sadness
This is our God
Oh... this is our God
this is the one we have waited for
Oh... this is our God
A fountain for the thirsty, a lover for the lonely
This is our God
He brings glory to the humble and crowns for the
faithful
This is our God

This Just In...

Scope Tuesday morning. Probably.

Sounds like...whatever presurgical assessments that were not made prior to the last planned procedure will occur on Monday, with an early morning scope Tuesday.

Zoe Just Went In -No She Didn't. REVISED.

For her scope.

Zoe went in and then Jen witnessed a vigorous discussion by the doctors (ENT, anesthesiologists) regarding where (i.e. what bed) Zoe was to go after surgery.

The anesthesiologists refused to operate because there was no PICU bed available. Was this something that could have been determined...oh I don't know...before they carted her off to surgery? Perhaps.

Their disagreement resulted in postponing the surgery until next week. Sometime.

Jen's going to try and find out when next week they plan to have the surgery..

They apologized to Jen.

SCOPE TOMORROW

Jen just signed the consent form, and the scope's tomorrow. The doctor was very pleased with Zoe's 02 sats last night, and wants the ENT team on hand for the scope because if they do see an obstruction, they can remove it while Z is under.

At this time, the thought is that given her night last night and the observation that her sats are very good when she lies on her side...that we'll have the little bug home soon.

Praying for a good scoping tomorrow.

A Note To Hospitals Everywhere

Dear Hospitals,

If you make changes in your careplan for a child, please consider telling parents your plan has changed.

Thanks,

Greg and Jen

Yeah. That scan for yesterday and today - the one where we couldn't feed Zoe after midnight, all night - was postponed. Until tomorrow. So, Zoe could have eaten. If we were told. But we weren't.

Maxin' Waiting For A Scan

Sats are fine now. Pastor Wendorf visited. Waiting on a neck Xray and then the scope. Zoe is relaxin'.

Pray - UPDATED 11:20 AM CST

Zoe was admitted to Children's this morning to try and find out what can be done about her terrible sats when she sleeps. Could be tonsils and adenoids removed, could be a tiny tiny cpap mask...could be even more dramatic measures.

Doctors will be scoping Zoe to find out the level of her obstruction and make decisions about a course of action. She for sure will be at Children's overnight.

some better news: HEY HEY HEY....IT'S FAT ZOE! 12 lbs 2 ounces. that's up 7 ounces since last weigh-in.

Sounds like scope won't take place until either tomorrow or Friday.

Dad has lost five pounds since last week.

These are two good people. I've been contemplating what life would be like without either, without one. It's just stifling.

The sun rose today, and both are with us. So, pray.

AE & Zoe Update

Saw my dad this weekend. He had a rough time of things...dealing with nausea, just having trouble performing simple digestive tasks. The big goal is that he eats, gains weight, so that perhaps this newer treatment can be used. All of that is pushed aside if he struggles like he did this weekend.

Pray for Bat. His whole life he's been fighting, and it's hard now sometimes for him to figure who or what to fight against. Maybe everyone. He's a tough guy, and he needs prayers and a hand of gentleness on his soul.

Jen and Zoe went in for Zoe's sleep study, and the initial word is not good. It's likely she'll be admitted tomorrow morning so that the doctors can decide how to deal with Zoe's terrible pulse/ox and co numbers while sleeping.

Roller Coasters and Toasting

Big Friday came and is being celebrated in every corner of the Bat Universe.

Big Friday saw Josh, after being diagnosed with coronary artery vasospasm, receive his orders - take around five meds, no more caffiene, better diet - and was released.

Big Friday saw Zoe riding in style in her new stroller - worth more than either of the cars in our driveway - that lets her ride in comfort, support...and lets her see. Thank you, Humana Healthcare.

But the biggest of Fridays goes to....

Bat, who went to see Dr. Winkler, his long-time oncologist. Dr. Winkler was not present while Bat spent his time at the Hospital That Will Not Be Named. Honestly guys...we all thought this was the visit where Dr. Winkler used terms like "being brave" and "hanging on."

Instead, Dr. Winkler said he kept looking and looking for some drug that might help. As in, not help Dad die with dignity, but as in, help him live.

Imagine that.

And he found something. He thinks he found something.

While Doc Winkler was acting like a doctor, Bat was acting like...well, Bat. The physical therapist told him to get up every hour and move, and so he moved. Around the kitchen island. Down the driveway. Working out with a piece of equipment from Val Centanni down South.

And eating. Three pretty squares, and some snacks.

So, Dr. Winkler has announced that the Sutent will begin in the next few weeks.

Look, all of this medical stuff is a roller coaster. We're up, and it very likely could go down again. But you know what you do at the top of those big hills? You point heavenward just like we did at the deepest valley.

So we Bats raise our hands in praise of a God who saw fit to give us a Big Friday.

And, we Bats raise a glass:
to rollercoasters, Sutent, hope, Heaven, Dr. Winkler and Rocky Balboa.

[scrippet]

Ext. NY SIDEWALK - NIGHT

ROCKY

The world ain’t all sunshine and rainbows.
Life will beat you to your knees and keep you there permanently if you let it. You, me or nobody is gonna hit as hard as life.
But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward. How much can you take and keep moving forward? That’s how winning is done!

[/scrippet]

Zoe and the Airplane

Zoe is 16 and a half months old now, and still shy of 12 pounds. While her body is resisting growing, her brain is unquenchably seeking more.

Tonight while we watched a movie, Zoe begged to be lifted by her chest and tummy like an airplane and then carried around. All the better to learn about height and movement, to see more than her carseat or her swing can allow.

And when Daddy's tired arms put her down, she didn't just cry. She wailed like she was experiencing pain. She wants to go up. So up she went again and again and again.

Anyone who reads any of the old entries of this blog can see how I was quietly keeping myself clear of nights like tonight, when I don't know if I can imagine a life without Zoe. She's a hyperactive, insistent pain in the butt. Like her dad. And she wants what she wants. Like her dad. And maybe she's got a little bit of brawler in her, too, like her dad. And her mom.

Now she's snoring, waiting to again damage my night and much of my morning with her insane sleeping schedule. But I'm beyond glad she's here. I'm expecting her to be.

16 Months of Grace:How Winning Is Done

Grace is getting something you don't deserve.

This morning my precious Zoe woke up and wailed. She was scared or upset or something, but she was almost inconsolable until Mom held her and then Dad walked around holding her.

But she was alive. 16 months old. Beautiful and long and opinionated. Eating chicken and vegetable stage 2 baby food and alive. Sweet grace.

Zoe is incompatible with a night of sleep. Incompatible with stage 3 food. Incompatible with tater tots. (I tried. What? I just wanted to see) She's incompatible with being left alone too long.

But she's not incompatible with life. God has given us Zoe for another month, and Zoe has taught me how to win. It's not how hard you hit. It's how you take the hits.

EEG Says...

Doctor Kovnar says he's thinking Zoe isn't experiencing seizures. Jen had noticed that her "episodes" happen only when she's asleep, and his review of the EEG doesn't seem to indicate seizures.

Things he did notice:

Zoe doesn't have too many stages of sleep. She really goes from drowsy to deep sleep.

Zoe may be affected by obstructive apnea.

Zoe may be affected by night terrors, which do accompany the lack of stages of sleep.

While her fontanel still exists, there is evidence of it bridging.

Here's what he didn't notice: Anything containing the words "incompatible with life."

I am blessed, and you are witnesses to this blessing. I am triumphant, and you are witnesses to it. My daughter turned 15 months old yesterday. And the doctor and you and I didn't even notice it.

Big Day: Pray

Zoe's in right now receiving an EEG. She had another "episode" that resembles a seizure a few weeks ago and the current opinion is it's related to apnea.

The doctor seeing Zoe is the same doctor who met with Selah, all those days ago. Back when Selah's health trials were the worst thing that had ever happened to me as a Dad.

I'm praying for good news there, hoping that God will give us insight into Zoe's health as we learn about her and her condition.

I'm also praying for Josh, Jen's brother, who is trying out for American Idol. My pretty close to objective assessment, having seen his gifts, is that he's a shoo-in for California.

I re-refer you to the devotion I found and mentioned in yesterday's post. My worst-handled duty as a Christian has been acting as an intercessor for those around me. Let's pray for others, watch with them, lift them up.

**Updates: Zoe was very upset with the whole EEG process, but is through. We'll talk to the doctor about results tomorrow.

Josh sang twice today and they lauded his great voice and look, and then told him he's not what they're after this year.

FAT CAMP

Bat and Zoe continue to work at gaining weight. Right now, Bat has taken an early lead, adding a pound. Zoe added 7 ounces in a month, up to 11 pounds, 11 ounces.

Insert Meaning Here

Sitting in church this Sunday, I knew something that most everyone else didn't know. So, when the sermon was about change, and dealing with change...I'm sure a good percentage of the group assembled there settled into their "listening" setting - partial attention, while you kind of plot out the rest of the day. I wonder if I RSVP'ed that party?

Change, and dealing with change. The Church year changes, life changes. We have to be ready for the change, my father said.

If only they knew it was my father's last sermon. And that change was coming, and they better be ready. A vacancy, a new pastor, a new shepherd.

I'm not writing to warn us all about being more attentive. I don't know if we could. I am just noticing that meaning is actually applied by us. My dad isn't the first retiree, or the last. His cancer is rare, but he's not the only one to have it. His career was stellar and received all kinds of recognition. But a lot of careers do.

And if you asked some people at church that Sunday, his career was too long, and not stellar enough. They had inserted their own meaning into his career.

We apply the meaning. How much did he touch you? Your parents? How many hands did he hold that went lifeless? How many eternal bonds of love did he help to forge? How many drunks did he counsel? How many times did he arrive at the scene of an accident before the EMT's? How many people at the mental health center consider him to be the only Jesus they know?

There's a story about one of Dad's confirmands from his old parish in Indiana who, some twenty years later, was lying on his deathbed. What can we get you? His parents asked. Pastor Bat, the man told them. So they called Pastor Bat.

He means something to some. He means a lot to many of us.

My Zoe isn't the only survivor of Trisomy 18 - although a ridiculous rarity. If God takes her, she won't be the only tragic little one called Home.

But we apply the meaning. How much did she change me? Teach me about the value of this moment, this day? Did Zoe help you stop and listen to your kid tell you about their day? What does the toothless smile you see up there mean? Maybe it means that fighters come in all shapes in sizes, and Zoe probably didn't want to wake up and fight today either. But she did, and she found some joy in it.

Zoe surprised the speech therapist today. I should create a template for use and reuse that begins "Zoe surprised _____" Today it was the therapist. What the therapist knew about Trisomy was that Zoe wasn't going to be able to communicate well or at all.

Trouble is, Zoe inserts her own meaning. She tries each night to talk to me, contorting her face so intently her eyes cross. She makes shards of sounds, gasps, clicks. She's got something to say. She means it.

I can't possibly end by giving you a trite thought of applying meaning to what you thought meaningless...even though that guy who cut you off was rushing away from getting fired. Even though that dollar you didn't give in offering was for a family struggling to pay their medical bills.

I guess all I'm offering is that if you took a moment, you'd find beauty in a moment. If you let it, the meaning might become clear. And if let God meet you where you are, that intersection, that point, that place becomes holy and meaningful. "Take off your sandals, for the place where you are standing is holy ground." Don't get caught missing the meaning.