Ira News and Notes

We've had Ira in the house for two weeks now. (It will actually be two weeks on Wednesday.) Having him home is wonderful...and tiring. He's a lot of work but it's well worth it.

WALKS
We take Ira on walks. Not everyday but often enough. We put in him the Bjorn and cruise the hood. We've showed him off to a couple of businesses we frequent and of course, they think he's the cutest thing ever. (Maybe I'm exaggerating a little.) He gets plenty of stares on our walks as it's not often one sees a baby with wires. One guy in the pharmacy tonight flat-out asked, "What's wrong with your baby?" There was something about his honesty that was refreshing. It was much better than the confused glances people shoot our way.

NURSES
We've had nurses 24 hours a day since Ira's been home. That's been good and helpful, for the most part. Our freedom has certainly felt compromised at times (not being able to walk around in our underwear, for goodness sakes!) and our tempers have certainly flared at times as we feel our space shrinking but that's about to change as our coverage will change from 24 to 16 hours of care each day. We are more than capable and more than ready for this change. We hope to have nurses in two different shifts: 11 PM-7a.m. and 8a.m.-4 PM. That's sounds reasonable to us.

MORE ASSESSMENT
Ira had a host of visitors today. The Early Intervention team visited to do their assessment of Ira. A social worker, physical therapist, occupational therapist, feeding/speech therapist, and special ed. therapist overwhelmed our space. They woke Ira from a deep slumber. He was as unhappy about that as a teenager on a Saturday morning after a busy Friday night. But he recovered and put on a show. Fortunately and unfortunately, they are all going to recommend that Ira receive their individual therapies. In other words, he didn't pass. I think we'll ground him until he starts passing his tests.

SO HOW IS HE, REALLY?
Ira is good. He throws up quite a bit and hasn't gained much weight which will not be what the GI doctor will want to hear. We wakes several times in the night to help him recover from gas or throwing up. It hurts him really bad as it would any of us. We've only had a couple of episodes where we were close to calling 911. We think that's pretty good. All in all, Ira is good. Really. We love having him home. Sophia loves having him home and with how much Ira smiles, we think he loves being home.

IRA'S SOPHOMORE FILM
Finally, I've made a video of Ira's coming home. Jason was kind enough to shoot footage of the day. There was about 45 minutes of footage and I compressed it to a three minute video. Ugh, that was difficult. I've sent Laura's and my family the DVD and as soon as they get it and get a chance to see it, I'll post the movie so you can check it out. Thanks once again, Jason, for making that happen.

My Media

I'm finally getting around to changing my sidebar a bit. I was going to update my books and movies every couple of weeks but found myself floundering a bit. So I thought I would let you in on my favorite actors and records.

John Cusack is great in anything he's in. The movie might suck but becuase of Cusack's presence the movie is somewhat salvaged. My favorite Cusack, by far, is High Fidelity. Denzel can't do wrong. I wasn't a fan of Man on Fire but he was spectacular as usual. My favorite Denzel performance was as Macolm X in Malcolm X. Tom Hanks. Need I say more? Favorite Hanks film is Saving Private Ryan. And Jodie Foster does smart stuff and I like smart stuff. I thought Contact was genius.

The records I chose for my sidebar are ones I've had for a long, long time. I listened to them then and I still listen to them. They haven't gotten old. They have staying power. Do It Acapella is a compilation of artists singing acapella. Spike Lee put the show together. The sound is sweet and the harmony tight. Johnny Cash's American IV: A Man Comes Around is prophetic, strong and bold. Not Fade Away: remembering Buddy Holly is fun and well done. And Billy Joel's Greatest Hits Vol. 1-2 is, well, great. Not one of those songs ever gets old.

Unknowing

We keep getting asked what Sophia is going to be for Halloween.

Laura and I have nothing against Halloween. We haven't jumped on the bandwagon and deemed Halloween "of the devil." We aren't afraid that after a night of Trick or Treating that she will have nightmares about all the other crazied costumed kids with whom she'll come in contact. It's just that she doesn't know yet.

She doesn't know that she's missing out on an opportunity to score free sweets. She doesn't know it's the cultural norm to get dressed up, go out and survey the neighborhood. She doesn't know what Trick or Treat means. This kind of innocence is appealing to Laura and me.

Early this last summer, we took Sophia to Sesame Place. You might remember viewing some of our pictures from that excursion. "Sophia crying with Bert," was the title of one picture. Another, "Sophia crying with Grover." Yet another, "Sophia crying with Oscar." On our way home from that trip, Laura and I asked each other, "Why do we do it?" Why do we spend lots of money for experiences that are miserable and will be forgotten by our child in a matter of days? Why do we go all out for costumes for one and two year old children who have no clue what Halloween is?

Our intentions are genuine in the beginning. We want to create an experience for our little ones. But in our case, we soon realize it's more an experience for us than it is for Sophia. "Sophia, smile for the camera!" is what we tell her as she begs and pleads for the candy in her bag. And then throws a classic two year old fit when we don't let her eat it all.

No thanks.

However, we could make it really simple. We could just Trick or Treat our block. It might be a great way to meet some of our neighbors and pass on a friendly, "Hello." Sophia will definitely dig the candy and those pictures will be cute, I'm sure. In exchange for candy, Sophia could give a Halloween cookie we made to our neighbors so as to teach her about giving as well as receiving.

But I keep coming back to that Age of Innocence. That Age of Unknowing. It won't last much longer so why do it? For her, really? Or for us?

A Celebrity Sighting!

Seeing the head coach of the Texas A&M Aggies, Coach Franchione, around College Station, TX is like seeing a celebrity. My brother-in-law, Ryan, went to a social in which Coach Fran was present. Ryan was determined to get a pic with Coach Fran in which Ryan's IRA LESTER HAYS wristband was present.

So there aren't many degrees of seperation from Ira and a College Station celebrity. As if that weren't enough, Coach Fran and his crew are trying to recruit my friend Anthony. I wrote about Anthony here. Pretty cool, huh? Thanks, Ryan, for sending in your pic.

And finally, BEAT THE HELL OUTTA IOWA STATE!

A Cool Cat

So I e-mailed Ira's surgeon, Dr. Stolar, and told him to take a look at my blog to see if I got my October 23 post right. He wrote the following:

Joe: Pretty good summary. The reflux stuff results because the coordination of the esophagus and stomach muscle needed to move a bite of food from one end of the GI tract to the other (The Wave) is very poor in Ira, especially in the esophagus and stomach. Also the shape of the esophagus is not normal either which in turn interferes with function. He throws up because this coordination is poor at the moment. This generally gets better when the kids start walking at 12-18 months. The poor interest in eating by mouth is real annoying. It results in part from the reflux and also because he was so sick for so long that he did not have the usual chance to learn to use his mouth to eat. This gets better also. The gasatrostomy is temporary. I just don't know for how long.

So while he didn't give me an official grade, I'm projecting that he would give me an A-. Right, Dr. Stolar?

Forgive him if he does not comment. He's tried to comment on this blog before but the technicalities of how to do so are a bit much for him. I think he should stick to his day job of being the chief of pediatric surgery and professor of surgery and pediatrics at Columbia University. Don't you think? You gotta admit that Dr. Stolar is a pretty Cool Cat for engaging me in my questions and reflections. He's a busy guy. He doesn't have to do this.

Once again, Dr. Stolar, thank you.

"more or less"

Came across this Brueggemann prayer in Awed to Heaven, Rooted in Earth:

We will be your faithful people -- more or less
We will love you with all our hearts -- perhaps
We will love our neighbor as ourselves -- maybe.

We are grateful that with you it is never "more or less," "perhaps," or "maybe."

With you it is never "yes and no," but always "yes" -- clear, direct, unambiguous, trustworthy.
We thank you for your "yes" come flesh among us. Amen.

More than you need to know

I've been asked to review what's going on with Ira specifically. Below is a way over-simplified explanation of where Ira stands.

LUNGS
Because of the hernia, Ira's lungs - specifically his left lung - didn't grow as they should. So Ira, since Day One, has had help breathing. Currently, he's on CPAP at night which not only gives him oxygen but gives a boost of pressure that helps expand his lungs. He's on the cannula during the day which just gives him oxygen. The CPAP is not portable and the cannula is. Who knows how long he'll be on these devices? The doctors don't know and we don't either. Could be months. Could be years.

HEART
Because Ira's lungs are not what they should be, Ira's heart has worked extra hard to keep the flow of blood going. He's on Viagra to keep the pressure (pulmonary hypertension) normal and keep the heart from working itself to death, literally.

STOMACH
It's incredibly common for CDH babies to deal with reflux. When they straightened everything out in Ira - put his stomach, intestines, etc. where they should be - he began eating. But because his body is not used to having everything in the right place, the food comes back up. Ira's digestive system is fragile to say the least. He throws up often. He takes Prevacid to help keep this in check but it only does so much. He is fed through his G-tube. His meds are administered through his G-tube. Ira won't take anything via the mouth.

PHYSICAL DEVELOPMENT
Ira needs to grow. The more he grows the more room his lungs have to grow. The pictures of Ira might fool you. He looks chunky only because his head is the size of two basketballs. He's actually quite thin otherwise. Because he can't keep food down, he will have a hard time growing. It's quite common for CDH kids to have stunted growth. He has low muscle tone and will be last among his peers to crawl, walk, run, etc.

Ira gets five different kinds of medicines that are administered several times a day. He is continuously fed at night (from 8 PM - 8 a.m.) and at three different times a day (11 a.m., 2 PM, 5 PM) for an hour and a half at a time. So there's only five and a half hours of Ira's day when he is not being fed. No wonder the boy throws up! Kidding, the doses are small.

FOLLOW-UP
Ira sees his pediatrician who handles all the info from the other docs. He is also seen by a gastrointestinal doctor, pulmonologist, pulmonary hypertension doctor, and his surgeon. He'll have physical and occupational therapy along with therapy that deals with eating.

We've had Ira home for five days now. I've been asked how it is to have him home. It's hard to answer that question. I'm so glad he is alive and well enough to be home that I love having him home. But I would be lying if I said it was a cakewalk. Ira is a hard baby. He keeps us working, that's for sure.

My Girl

It's officially cold here and so we broke out Sophia's tights, jacket and hat. Adorable, right? She loves those boots. She pretends she's Boots from Dora the Explorer. She runs around looking for stuff and tells Swiper, "Swifer, no swifing!" (It's supposed to be, "Swiper, no swiping!")

Click on the picture to see other pics of Sohpia, Ira and their Gram.


Cute or What?
Originally uploaded by joechays.

The Move

Christ's Church for Brooklyn has met in our home since January. Every Sunday night, our living room has filled with eager adventurers willing to give this church start-up a chance. The plan was to originally rent a space on March 27, Easter Sunday, and make a more public declaration of our presence.

At that point, Laura and I knew of Ira's condition and knew that going public with the church plant would be difficult. We asked our supporting church, Manhattan Church of Christ, and our church planting sisters and brothers if we could hold off on the public launch and instead, continue to meet in our home until things settled down. Everyone was more than gracious in hearing our request. I gave this short update at the Manhattan Church in late February. We've been in our house ever since.

Until this Sunday. Because Ira is now living in the living room, because there have been several Sundays that we are too big for our apartment, because it's time, we are moving to a rented, public space. We're all excited about this. We'll be meeting in the local YWCA whose mission is to "eliminate racism and empower women".

The YWCA's mission is not much different from our's, Christ's Church for Brooklyn: we want to eliminate barriers socially and spiritually hoping that people will be empowered to live life to it's fullest in the name of Jesus Christ. So it seems an appropriate place to meet, huh?

My prayer, my hope for this church is that it will become a church for Brooklyn. A church the community can count on. A church the community can come to know as a welcoming church and not a threatening church.

Please pray for Christ's Church for Brooklyn as we hope to bring Good News to Brooklyn.

Sweetest Boy Ever

Is this not the sweetest boy you've ever seen? Okay, those of you with sons or nephews or grandsons should not be forced to answer this question. But you get what I'm saying, right? We had our first doc appointment on Friday afternoon. It all went well. I think we'll have about one appointment a week over the next several months. He has five different docs following him.

Generally, life is good for us here at home. We love not getting on the train to visit him. We love not sitting in those uncomfortable chairs next to his hospital bed. We love not having to spend time away from him.

We love having him home. Love it.

Welcome Home Sweet Boy

What a day! I don't have the energy right now to give you the full details but it's been a heck of a day. I couldn't keep quiet about the big day. I told the receptionist at my gym, Michelle, that I was bringing my boy home today. I told the car attendant at the hospital, Umberto, that I was bringing Ira home today. I told the security detail at the hospital, Albert and Maria, that Ira was leaving today. None of them asked but I told them.

As we left the hospital, nurses and docs cheered for us. Church family came to cheer for us. I cried then and have been crying on and off all day.

Ira's doing well. He had a hard time with the transition from the cannula to the CPAP this evening and it wigged us all out a little as he turned blue and cried furiously but we got over that hump and he is sleeping nicely.

Sophia has been incredible through all this. All she wanted to do tonight was have Ira sit in her lap. So we made it happen. She was a happy girl. We are a happy family.

The two nurses we've met thus far are just fine. Our space it tight and already I'm feeling a bit compromised in my freedom but this is the sacrifice we make, right? So we press on.

There are many more hurdles as some of you have mentioned in your comments. Ira is still a sick boy. That's evident when he turns blue and when he throws up. It's evident every time we feed him through the G-tube and not through the mouth. It's evident when we give him his five different meds throughout the day. It's evident when you hear him cough or grunt for air.

But he's come far in this marathon and I expect that he will go farther. It's not over yet. But he is still running. And if he is, so are we.

Home

We're home. More later. But for now let me just say that this is the best feeling I've ever had in my life.

The Big Day

The day has come. My mom and I are about to go. Sophia and Laura will come later via the train. I can't wait. We're giddy. It's like it's Christmas morning and the presents are under the tree. Magnify that feeling by a hundred and you start to approach what we're feeling. I'll hopefully write tonight about the experience. Hopefully the nurse won't be staring over my shoulder as I do.

zzzzz.....

Long day. Non-stop.

Spent night with Ira. The room. Same room we spent night in first several days of Ira's life. Unwanted flashbacks of crying ourselves to sleep. Last night, woke every hour and more. Ira fine, we weren't.

Learned more about equipment. More confusion.

Nurse after nurse, doc after doc came to say "bye." More instructions from doc: Call pharmacist. Call pediatrician. Call him. Call her. Don't forget this. Don't forget that. And oh, remember to do this too. Thanks a lot, doc!

Off to Target. Last minute shopping.

Cleaned apartment. Brooklyn church helped. Ten people showed. Worked hard. Scrubbed and scrubbed some more. Brooklyn church rocks!

Tired, very tired. More of the same tomorrow. Tired. Want to go to bed. Too wired. Tired. Can't wait for tomorrow. Want my son. Want him now. Want him home. Tired.

in bad hands

Equipment just got delivered. He brought in everything and said, "I'll do a quick overview of what everything is." Two hours later he left. I keep walking around the apartment hoping the stuff won't be there the next time I turn around. I'm trying to ignore it. But it's there taking up a good portion of my living room. Ugh. Overwhelmed.

To Do...

This week. Ira is supposedly coming home this week. The nurses keep telling me not to say that out loud kinda like Harry isn't supposed to speak the name of "He Who Must Not Be Named." While I'm extremely excited about this development, there is much to do. Here's the list:

1) Get Ira a car seat.
2) Find a pharmacy that will prescribe Viagra in liquid form. So far, empty, blank stares from pharmacists talked to.
3) Spend the night in the transition room on the NICU floor with Ira to show that we are capable. Last time we stayed in this room, Ira was on ECMO. Not looking forward to it.
4) Clean, scrub, hose down, blast the apartment. I don't want a germ living in our place.
5) Clean Jersey the dog. Scrub him, hose him down but maybe we shouldn't blast him.
6) Call the 911 officers and local fire dept and notify them of Ira's condition and the equipment we'll be having in our apartment.
7) Receive Ira's equipment at home.
8) Contact pediatrician and make appointment for end of week.
9) Rearrange apartment so Ira, his equipment and nurse can fit. Can anyone magically add a couple hundred square feet to our place?
10) circumcise Ira. Umm, this is going to be tricky.

Oh, and by the way, they say Ira's coming home on Wednesday so we gotta get all this done in the next two days. Bring it! I just want my boy home!

Teresa of Avila on Prayer

I have much to say about prayer and yet, nothing at all to say about it. I want to talk about what it is and what it is not and yet, I want to steer clear because I still wonder about its function in this world. Today, I'll let Teresa of Avila teach us.

I came across a great article about Teresa in Sojourners Magazine. This 16th century mystic was all about action. She said in her work The Interior Castle that the single clearest test of our love for God is whether we are loving one another in tangible ways.

Teresa was well aware that action is born out of prayer so she suggested the following: cultivate silence, stillness, and surrender. Only when we have restrained the urge to impose our own remedies upon this broken world can we hear what is truly needed. And then she implores of us, "this is what I would like for you to strive for, friends. We should engage in prayer--thrist for it, even--not because it feels good, but because it gives us the strength to be of service."

I pray hesitantly because I know God will use me, will demand of me, action.

The A-Team

We had our meeting with Ira's docs on Wednesday afternoon. We had questions for them ranging from, "Who is our first contact if we think Ira is sick or needs professional help?" to "Can we take Ira out of the house?" to "Is having a dog okay?" to "What is Ira's prognosis?"

They had questions for us, too. "What hosptial are you close to?" "You guys are planning on getting flu shots, right?" "Are you prepared for the many bumps to come and the tiring work it is to take care of a baby like Ira?"

A lot was said but the answer to the question, "What is Ira's prognosis?" sticks out to me clear as a bell. Upon hearing the question, Ira's surgeon, Dr. Stolar said, "I expect to be dancing at Ira's wedding."

There have been many doctors and health care professionals who have taken care of Ira but it's the doctors and social worker below who have followed Ira since Day One. These folks really do care about Ira. We are fortunate to know them and Ira is fortunate to be cared for by them. Without further ado, the A-Team:

From L to R: Dr. Akita, Neonatologist; Dr. Berman, Pulmonary Hypertension; Dr. Lorenz, Neonatologist; Ms. Bruskin, MSW; Dr. Stolar, Surgeon

Busted!

I was wondering if it would happen and it did.

You see, people who read on the subway are always interested in what others are reading on the subway. So it's not uncommon to catch some other reader checking out your book.

So I got on the A train yesterday and across from me sat a guy reading some civil war hero's memoir. I sheepishly and carefully pulled out my latest novel hoping that no one, especially the Civil War Hero's Memoir Guy, would see what I was reading.

I was successful in hiding the cover for the first fifteen minutes of the train ride. Gradually I became immersed in my novel's story until I finally realized at the 42nd street stop that I was holding the book up so that the whole world could see what I was reading. And then I noticed that the Civil War Hero's Memoir Guy was snickering at my choice of literature, Steve Martin's novella titled, shopgirl.

You may be wondering why I was reading this book and you may believe the snicker of The Civil War Hero's Memoir Guy was deserved. But let me just say that Steve Martin - yes, the same guy who starred in The Jerk - exceeded my expectations. The book is light and airy yet dark and gloomy. It explores both hope and hopelessness. And of course it delves into the mysteries of love.

This book has been made into a movie that is coming out later this month in selected cities. I'm anxious to see if the movie does the intricacies and subtleties of the story justice. And you can bet your bottom dollar that I'll be sure to attend the movie with Laura so as to avoid more snickering from guys going to watch Lords of War.

Yankees Lose, Cope Wins

Without further ado, guest writer Mike Cope:

By virtue of the Yankees' inability to cash in on Colon's back spasms and the Angels' substitution of a 22-year-old rookie, I now have "earned" the right to talk a little smack on Joe's blog.

But it's too easy, really. So big deal. I don't root for the Yankees. I also didn't cheer for the Uruk-hai in "Lord of the Rings." The Yankees' farm system consists of money to prey on the players no one else can afford -- this year to the tune of $205,000,000 in salaries. They can outpay the Rangers for A-Rod; but they can't make him hit in the playoffs.

But enough, already. Because here's the deal: Ira Lester Hays is a Yankees fan. Outside the only home he's known so far is a stadium in the Bronx. That's all that's really kept me from getting into my normal Evil Empire tirade.

And that's where reality sets in. I love the game of baseball. I've played it and watched it since I was a kid, and I've coached it for nearly two decades. But Ira's health--that's real.

Besides, my anti-Yankees zeal is probably heightened by a since of self-flagellation. (It comes with my religious heritage.) In 1964, at the age of eight, I went with my dad to St. Louis to watch the Cardinals and the Yankees in the World Series. These are MY Cardinals: the team of Musial, of Gibson, of Brock, of Ozzie, and of the mighty Pujols. I've been a faithful follower . . . since the age of nine.

But at age eight, there was one player that loomed above all others for me: the Mick. So in this stadium filled with Cardinal red (the old Sportsmans' Park, not Busch Stadium) I was cheering on Mickey Mantle. I remember the plane flying overhead pulling a banner that read: "Mickey Mantle and Roger Maris too; we've come to put a hex on you." I can't remember what I preached on last week, but I remember that sign clearly from 41 years ago.

And that's the power of baseball.

Fortunately, the Cards ignored my betrayal and beat the Yankees in seven.

I've been calling it a Cardinals/Angels Series. I can't lose in that one -- my favorite team (the Cards) vs. the Angels (with former Highland member John Lackey now the go-to guy among the starters).

Play on, Ira!

Why Green?

Steve and Julie picked out the color of the IRA LESTER HAYS wristbands. Some have inquired about the choice of color. Today, Steve posted why they chose green. He posted the following:

Well, I posed the question a few days ago (10/1), what green means to you. When Julie and I were looking through the 5000 colors to choose from for this wristband, it came to me that Green would be a good color because of its symbolizism of life and growth. That was my simple answer. However, I am glad to see how that "simple" thought is lived inside you as well. Calissa posted her thoughts the other day about the color, and it does a much better job at why I think Ira Lester Hays should be written in green:

To me GREEN symbolizes growth, springtime, new beginnings, health, and life. I LOVE that the prayer bands are green... immediately when I saw them, I thought it was the perfect color for how God is healing Ira and renewing (the) family.

How about you? Does that describe the color in your eyes?

The Weekend

It was a good weekend. It began with Ira going 21 hours on the cannula beginning Thursday morning and into Friday morning. We were elated to say the least. Now the docs want Ira 8 on CPAP and 8 off, 8 on and 8 off, etc... It's very apparent that Ira works hard when on cannula and the docs don't want to overwork what little lungs he has.

We have a big meeting with Ira's surgeon, his pulmonary hypertension doc and his neonatologist on Tuesday or Wednesday afternoon. This is the last time we'll have them all together at once so we are getting all our questions ready for them.

We are so very close to getting out of the NICU. Things are falling into place with the nursing agency that will provide nurses for us at home. This is always a big deal as home nurses are hard to come by. Our insurance has granted us 12 hours of nursing care a day with the possibility of four more if need be. Once that gets into place, there is nothing holding us back.

One of the questions the agency asked was, "Does this family live in a safe neighborhood?" The NICU social worker relayed the question to me and I answered by saying, "it better be with the rent that I pay!"

The weekend ended on a perfect note as the Yankees extended the series against the Angels. Mike Cope and I have a bet going: if the Angels win he gets to post on my blog and talk all the trash he wants but if the Yankees win, I get to post on his blog and talk about what people are missing out on by not being a Yankees fan! I can't wait for the big game tonight. And I can't wait to post on Mike's blog on Tuesday morning!

Some of my favorites

These are some of Ira's favorite people. Grandma KK has been here for quite some time helping us all out. Almost two and a half weeks! We are thankful for her willingness to come and be with us and for Pa Pa to endure frozen microwavable meals back at home.

Ira is taken with Sophia. Like any younger sibling, Ira only has eyes for Sophia when she is in the room. He truly does dig her.

And finally, there is Sandra. She staked her claim on Ira when he was about two months old. Ira loves her protectiveness. She doesn't let anyone, including doctors and Ira's parents!, mess with Ira unless it's truly necessary. We love her as does Ira. There are tons of other nurses too that we love that I'll soon be getting pics of.


My Grandma KK
Originally uploaded by joechays.

I'm going home with this girl?
Originally uploaded by joechays.

My primary, Sandra
Originally uploaded by joechays.

The Haircut

We decided to do it. We cut Ira's hair. I brought my kit from home and we went to work on Ira's hair. I'm sure it was against all kinds of hospital policies when I broke out the electric clippers but surprisingly we were left alone. He looks really cute and he won't grow up with patchy hair - not that there's anything wrong with patchy hair.

So what do you think, should I stick with my day job or should I pursue my true passion of cutting hair?


Pre Haircut
Originally uploaded by joechays.

The Haircut
Originally uploaded by joechays.

Post Haircut
Originally uploaded by joechays.

going and going and going...

Ira went on the cannula on Thursday at 10:30 a.m. I left him last night at 8 PM and he was still on cannula. We called our night nurse this morning before the shift change and Ira was still on cannula. This is definitely a record for Ira. I'm can't wait to get there this morning to see him! With that said, I'm off!

Sends Pics, Please!

Check out where Ira's been as of late. See my October 1 post. Check out where Kenny took Ira on his September 25 post. My brother-in-law is sending me a picture of Ira with Coach Fran of the A&M Aggies. Ira went on the Juvenile Diabetes walk with the Eller clan recently.

Where does he go that we don't know about? Work? Class? Take a pic with your camera phone or whatever and send it our way!
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This prayer pager thing is a trip. I'm always, always caught off guard when it goes off. My initial reaction - I must be honest - is that I get annoyed and then I suddenly remember why it's going off. Who can get annoyed by that? Laura and I appreciate your prayers. It's one thing to know through comments on the blog or through an e-mail that you are "praying for us" but it's another thing to feel the buzz and know that we have just been prayed for, literally. Ann, thanks again.

The toll free number is 866.240.0163. You'll hear Ann's voice prompting you to leave your zip code. Once you do that, stay on the line to hear the concluding message and we'll get the buzz.

The End

I've been reading quite a bit lately and I've noticed a pattern in me. I hate finishing a book. I get all sad and mopey and I put off finishing because I'm never really ready to leave the world I've immersed myself in. It's certainly been an escape for me recently.

My wife gave me A Million Little Pieces by James Frey last week. I was a little skeptical because it had Oprah's Book Club sticker on it. However, the book is amazing. It's a true account of a guy who goes through six weeks of rehab. I highly recommend it.

After being admitted into the clinic James is seen by a medical doctor. An excerpt:

He looks at the file, he takes a deep breath. He leans back in his chair and he looks at me. He speaks.
You have done significant damage to your nose, your throat, your lungs, your stomach, your bladder, your kidneys, your liver and your heart. I have never seen so much and such extensive damage in someone so young. We would need to do more tests to know the specific extent of it, and if you want them done we can facilitate that, but from what I have here, I know a few important things. The first is that you are lucky to be alive. The second is that if you ever have another drink or use any type of hard drug again, there is a good chance that you will die. The third is that if you start drinking or using drugs regularly, you will be dead within a few days. Your body has suffered from a pattern of such profound and prolonged abuse that it will not hold up anymore.
I look at Docter Baker.
You got anything else to say to me?
I hope you'll trust us, I hope you'll give us a chance to help you, and I hope to god you're here tomorrow.
I appreciate your time and your efforts. Both of you. Thank you.
I stand and I open the door and I walk out of the Room and I shut the door behind me and I head back to my Room. Although I have just been told that further use of alcohol and drugs is going to kill me, and kill me soon, what I want right now is a nice strong drink and a blast of rock. I want them badly. Get something. I want them so badly. Fill me. I would kill for them. Get something. Kill for them. Fill me.

Sophia and Sundays

Sophia likes Sundays. Even though it's a workday for me and requires much from my family, Sophia loves them. People don't show up at our apartment until 5 PM but we start getting ready early in the morning. Part of our getting ready is to think and talk about those with whom we will be communing. As we change Sophia's morning diaper we tell her it's church day. She immediately gets excited. We ask her who she is going to see and she starts in on the list: "Nassah Gwace, Liz and Bwyan!" Who else? "Gina and Tom!" We continue this conversation until everyone is named.

At about 3 PM we start cleaning the apartment. Sophia chips in. She puts away her toys and books - sometimes reluctantly and sometimes joyfully but always slowly. (Why do you think we start at 3 PM?) We give her a wet-wipe and she goes around the house wiping down anything in sight. Her work is pretty shotty but we'll give her some more time before we dock her pay.

By the time people start coming she is ready. She works her brothers and sisters in Christ. Everyone is greeted and some are invited to her room for play. She gladly eats with us all. It's not uncommon to see and hear her ask someone other than her mom and dad for another piece of pizza or more water or another cookie. By the time we start singing or reading or praying Sophia and Manassah Grace are running around enjoying each other's company. On some Sundays they go back to Sophia's room for a structured class but on most Sundays they are welcome to pop in and out of what is going on in the living room. But every Sunday we ask Sophia and Manassah Grace to join us as we share the communion meal. They too eat the bread and drink the juice and as Laura whispers into Sophia's ear, "this is the body of Jesus, broken for us," and "this is the blood of Jesus, shed for us," I hear from Sophia, "thank you, Jesus."

I learn a lot from Sophia every Sunday. And the more time I spend with her I am made more aware of what Jesus meant when he said, "for it is to such as these that the kingdom of heaven belongs."

Ira loves the Yankees! Any why not? They Rock!

You gotta love it. To be 4 games back of the BoSox in early September and then to win the AL East is, well, freakin' amazing. We took 16 of the last 20. The guys played hard and our pitchers strung together some great performances. I think there is no doubt that A-Rod is the AL MVP.

I made a deal with Mike Cope. If his team, the Angels, beat the Yanks in the ALDS he gets the space on this blog to talk trash. If the Yanks beat the Angels then I get space on his blog to talk trash. I can't wait. My prediction? Yanks in 5.

As for my cousin Jay, who talked all that trash in his comment on Sept. 27 about me hurting my hip due to my jump on the Yankees bandwagon, let me just say that he can talk all the smack he wants but if my sources are correct it was he that up and moved to North Texas because of some girl. Jay, I hope that leash isn't too tight!
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I save the best for last: Ira was on the cannula nine hours today. This weekend he made it 6 and 7 hours on the cannula. The docs are ready for Ira to come home. We are too. The insurance company is not. We have to jump a lot of hurdles and get all our ducks in a row before Ira can come home.

The insurance company has to give permission as to what nursing agency we use and then they have to actually find available nurses. We have applied for Care At Home which is a state agency that helps middle income families pay for equipment that the insurance company won't cover. All of this takes time.

Can you believe that we're even talking about Ira coming home? It still doesn't seem real to me. I can't help but flash back to my conversation with Ira's surgeon when he told me that he was really worried or the conversation I had with Ira's neonatologist not long after that when he said he was concerned about Ira. These were their ways of saying, "you need to get ready."

And here I am almost six months later talking about Ira coming home. I'm in awe. So much so that it hasn't really sunk in yet. Maybe Ira will get home by the time the Yanks win the World Series.

Laura's List

10 Reasons Why I Can't Wait for Ira to Come Home:

1) No more goodbyes.
2) All four of us will be together more than 30 minutes at a time.
3) Ira will finally have consistent care - no more strange faces.
4) No longer have to be somewhere every single day.
5) No more goodbyes.
6) I can love and kiss on him whenever the heck I want.
7) No longer have to endure hearing him cry over the phone while talking to the nurse.
8) Ira will finally get to meet our dog, Jersey.
9) I'll get to lay him down on my bed and snuggle up to him.
10) No more goodbyes.
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10 Reasons Why I'm Scared and Nervous for Ira to Come Home:

1) No more goodbyes. Our home has been our safe haven when the stress of the hospital has been too much. Ira is a stressful baby. Where will I go to find a peaceful moment?
2) The x-ray machine can't be wheeled down the hall and into our living room at a moment's notice.
3) Ira still turns blue.
4) GERMS, GERMS, GERMS
5) Small space, lots of machinery. Where will Sophia and I have our jam out sessions?
6) A stranger in our home 12 hours a day. Where will we put this person?
7) No longer have an excuse to spend hours each week reading or listening to music or zoning out on the train; will have to carve out time to preserve my mental health.
8) GERMS, GERMS, GERMS
9) He is eating continuously all night long through his G-tube. When do we sleep?
10) What are we going to have to pay a babysitter to sit with Ira? Who will be brave enough to do that?

Really, I'm so thankful that I even get to make these lists. I know there are many moms and dads out there that would love to have the opportunity to bring their child home and will never have this chance. To those of you I say I'm so, so sorry.

Friday Night Lights

Wanna know where my IRA LESTER HAYS wristband was the past 24 hours? In Haltom, Texas watching Anthony play high school football.

Before coming to New York City I was a minister at Fortress Church in Ft. Worth, Texas. Anthony's family attended Fortress. At the time, Anthony was a scrawny middle school kid who I picked on. Umm, he's not so scrawny any longer. Notre Dame, Texas A&M, Oklahoma and a few other schools don't think he's that scrawny either. He's been offered a full ride to all these schools and more.


got your back, Ira
Originally uploaded by joechays.

His mom works for American Airlines and asked if I was interested in coming to a game this season. So I flew into D/FW on Friday afternoon, ate a burrito at Freebirds, watched the game with other crazed Texas high school football fans and flew out first thing Saturday morning.

I never was able to fully relax as my mind kept drifting back to 165th street and Broadway where Ira resides. But I was glad to see my friends and take in Anthony's football game.