Revolution

After our last visit with Dr. Digoy, he scheduled Ben's final surgery for January 9th to remove the trach. I was a little disappointed because I had been praying that Ben would have his trach out before the end of the year, but what's an extra week or two when you've been waiting for two years. Growing tired of the whole situation, Ben decided to take matters into his own hands.

On Saturday morning, Adrienne went into Ben's room to get him out of his crib, but she was surprised to find that Ben's trach was lying on the floor in the middle of the room. When she tried to put the trach back in, Ben's airway had already closed up enough that she couldn't get it back in. Being somewhat distressed by this, we called Dr. Digoy, and he told us that as long as Ben was breathing normally, we could just leave the trach out.

So Saturday went by without a problem, and that evening Ben slept for 11 glorious hours without us having to wake him up and suction him once.  Needless to say, Sunday morning was great time of celebration with the church. 

Very few things have gone according to plan over the past two years so I suppose I shouldn't be surprised by Ben's unorthodox approach to trach removal.  I do hope you'll keep all of this hush-hush since he's now guilty of practicing medicine without a license. I also hope you'll say a prayer of thanksgiving to God today for his mercy, healing, (and sense of humor).

Here are the first videos of "Life After Trach". 

Right Line, Wrong Lap

The end is still in sight; we just need to make one more lap around the track.  Dr. Digoy decided to temporarily put in a special trach that let Benjamin breathe through his mouth and nose.  The last time we tried this trach, Ben couldn't handle it. This time, however, he got used to it after a few minutes and slept through the night in the hospital without any suctioning or problems breathing. Since Ben passed this test, he's ready to have the final surgery to take out the trach. We don't know when this last surgery will be, but it should be soon.

Almost There

The surgeon has decided that if Ben's airway looks good on Tuesday morning, he's going to proceed and take out the trach (decannulation). The surgery starts at 7:45 in OKC, and we'll be in the hospital for a few days if all goes well.  It feels so good to have the finish line in sight.

Step One

Today, we took the first and most important step toward successful potty training.

Always Faithful

As I was suctioning blood and mucus out of Benjamin's neck at 4:00 in the morning in a cold hospital room while his sweaty little body was fighting off a fever and convulsing every 25 seconds for several hours in reaction to morphine that he had received the previous day, I caught myself asking God whether he really was okay with this situation. Surely God can do better than this, can't he? Almighty God must be pretty sick to just sit there and watch an innocent child suffer like this. The whole scene just made me angry.

Three and a half weeks later, I'm happy to report that it looks like Benjamin could get his trach out before the end of the year!  Dr. Digoy looked at him today and said that Ben now has a normal-size airway.  There's a litte more tissue that he'll be lasering out in two weeks, but if that procedure goes well, we're looking at December 23rd as the day Ben will get his trach out, which I'm guessing will be Adrienne's best birthday gift ever. And if things go smoothly, we would be discharged from the hospital on Christmas day (not a bad day to start a new life with Ben).

Some days it's hard to say, but on days like this it's easy to say, "Our God is faithful. Our God is love. Always."

Some videos for your enjoyment:

In a totally unrelated video, here's what happens when your co-workers have too much free time on their hands.

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There and Back Again

We're home. Ben is doing well. God is good.

Quick Update

After taking another look at Benjamin and talking it over with us, Dr. Digoy went ahead with the procedure to take out some of Ben's rib cartilage and graft it into the ring of cartilage around his airway so that it would be open wider. He also injected the Botox into Ben's muscles in that area so that they wouldn't compress the graft, which means Ben won't be able to vocalize for the next two to three months. Ben went into surgery at 11:00 and was finished a little before 5:00. All seems to have gone well, and he is being given morphine so it has been relatively easy to take care of him so far. We're hopeful that he'll be released from the hospital some time over the weekend. Many thanks for all of your prayers!

Audio Dictionary

I don't know if this has happened to you, but last week the fan on my laptop just stopped working. My computer would only stay on for fifteen minutes before overheating and shutting down. After further investigation, I found the cause to be a gigantic computer hairball which had been developing over the past five years. The clog was so big that no air could escape out the back of the computer. It had never crossed my mind before that electronic devices could have gastro-intestinal disorders.

Anyway, here's a promised video and some photos of the Benjamite. His surgery starts tomorrow morning at 10:50 and will last for several hours. Ben will lose his voice for a few months because of this procedure so this will be his last "talkie" for awhile. 

Books and girls...I'm have serious deja blog.

For Fall Festival, Ben dressed up as a small child being eaten by Elmo.

He can't stand the sight of seeing another child suffer the same fate.

Finally

I want to apologize to all of you for my long absence from the blog. So many of you have stood with our family in prayer over the past two years, and for me to disappear like that is not fair to you. For those of you who still come by here occasionally, thanks for sticking around.

It has taken some time to process the things I've seen overseas and figure out what is worthy of sharing with you.  I had the privilege of filming interviews with many faithful brothers and sisters in Christ.  I listened as an Iranian man who was training to be a Muslim mullah told me how he started questioning his teachers, was forced out of the country, and then was imprisoned in Iraq for 3 years for coming into the country illegally.  When he was released, he came across brothers from the church who told him the good news, and he became a follower of Christ.

I listened as an Iraqi engineer in his sixties told me how he had been abducted in Baghdad and held for ransom.  When the money didn't come fast enough, the kidnappers shot him in the side of the head and dumped him out of the back of a van onto the street.  While he was lying in the road, he had a vision of Jesus standing on a milky white sea.  Jesus came to him, held him in his arms, and told him he would not die. When he awoke, a man picked him up off the street and got him to a hospital. The bullet had gone through his optic nerve and passed out his cheek on the other side. He lost sight in one eye, but after 40 days in a hospital, he was able to go home. I saw the scars on his face.

I listened as an Afghani actress in her fifties told of her arranged marriage to a forty-five year old man when she was only 13. While she was still a Muslim, she had several dreams of Jesus coming to her and giving her comfort in her difficult situation. Now she is a follower of Christ and goes around the country speaking out against the drug lords who are corrupting her nation. She puts her life on the line every time she speaks.

I met European missionaries who had such intimate relationships with God. They talked and wrestled with him about coming to serve in Afghanistan, but God clearly revealed to them that Afghanistan was the place they needed to be. I was floored by their fearlessness in finding ways to share the gospel in a country that is basically 100% Muslim. They are truly preparing a field so that others can reap the harvest of their hard labor.

Before I left for Iraq, I started reading The Shack, and I just finished it this evening. As many of you know it's, a book about a man who has a vision of God after his daughter is violently kidnapped and murdered. The writing style of the book annoyed me some, but the story blindsided me with how powerful it was. I highly recommend it.

All of these things put together have made me sick of my own cynical attitude about God using dreams and visions to reveal himself to people today. The faith of these Christians makes me ashamed of the half-faith I have in God - the kind of faith that calls out to God when I need help but doesn't really want him to be intimately involved in my life the rest of the time. I'm tired of limiting God's influence in my life to Bible verses and distress signals. Maybe I'll never see a vision of Christ before I die, but I at least want to be able to say that I lived my life like Christ was always living in me and with me.  

There are many other things I could say about my time in Iraq and Afghanistan, but I'll save those for a venue other than a public blog. I know that I owe many of you a reply on Facebook.

Concerning Ben's next surgery, it's coming up on the 30th of October. The doctor will be going in and widening Ben's airway with a piece of his rib cartilage. What a privilege to live in a country where this is even an option for us. I'll try to put some more Benjamin pics and videos out here in the coming weeks, but thanks for stopping by. I'll be back soon.

Between Iraq and a Fireplace

Good morning from sunny Irbil, Iraq. You know you're not in Kansas anymore when your flight from Jordan to Iraq leaves at 1:00AM, the man taking your boarding pass is busy puffing on a cigarette as he tears your ticket stub, and you arrive at 3:00 AM with the temperature at a balmy 95 degrees. At least the dead grass here reminds me of home and my own front yard. One other interesting travel note - I'm not sure if it's a cultural thing, but people on our flights seemed to have very little interest in locking the door when they went to the restroom, which led to some spectacularly awkward encounters and priceless facial expressions.

With the flying out of the way, we've got a full week of teaching sessions scheduled with the Kurdzman church, and later on in the week we'll be distributing Bibles, shoes, and Story of Jesus booklets to children at the local schools. All is going well so far, and I'm blessed to be traveling with such experienced older brothers in Christ.

Well, it's 8:00 AM now and I'm going to get a few z's in before things get going this afternoon. I'll let you know of any other amusing intercultural exchanges that take place. Please keep Adrienne and the Benjamite in your prayers these next two weeks.

Baby Circles

Today we're home a day early and happy to be sleeping in our own beds this evening. Unfortunately, we're home early because Ben wasn't able to breathe well through the new trach so they put the old one back in this morning and sent us on our way. This leaves us back at the same point we were at back in March with the decision on whether to use the laser to remove part of Ben's vocal cord, widen Ben's airway by grafting some rib cartilage into the cartilage ring around his voice box, or just wait and see what happens.

The doctor said that he has recently started using Botox on patients who need a cartilage graft so that the muscles won't compress the cartilage that is being inserted. I always thought I still had a few more years before I had to give the Botoxing talk to my son.

In other news, we celebrated 7 years of marriage last week by bypassing Bartlesville and heading on up to Kansas City for the weekend. Since the name Kansas comes from an Indian word which means "Free Art Museums", our photos will center around this theme.

This picture combines two things I hate - giant spiders and staged photographs that take way too long to set up. (I believe this was take four).


Yes, those really are 20-foot-tall shuttlecocks that you see in the distance.


And my new favorite sculpture - it's kinda like Thinking Man meets Salvador Dali.


One other interesting bit of news - it's time for World Compassion's periodic trip to check up on our overseas projects. Our media guy is not able to go this time so at the end of the month I'll be off on a two week trip to film the work that our ministry supports in northern Iraq and Afghanistan. God has blessed me with this fantastic opportunity so please pray that all goes well and that time flies for Adrienne and Ben while I'm gone.

Phoenix

Like a phoenix rising up from the ashes only to be blown out of the sky by an Okie duck hunter was my return to playing indoor soccer goalie after two years of retirement. Things can only get better after the 12-2 thrashing we received tonight. Hopefully, my return to blogging will go a little more smoothly.

There's a lot of ground to cover here so we'll use some pictures to help things along. Over the last 2 months there have been good times...


and bad times...


We've played in the legendary mole hills of Bixby. It's "Don't make a mole hill out of a mountain" around here.


We've inaugurated the tricycle era.


And for Father's Day, I received the first ever painting on canvas by the Shirtless Picasso (note the trademark blue ear). I believe he's calling this one "Something to Do Before 2nd Breakfast."


But mostly, Benjamin has been spending time with his two true loves - books...

...And his girlfriends.


As you'll see, the two seem to go together.

Sara Hill came over to our place and read some books for Ben. He was mildly excited about this.

And now you know the way to Benjamin's heart.

I think that pretty much sums it up. Ben hasn't had any surgeries for the past 6 weeks which has been very nice. His next one is coming up on August 5th, and it's a big one. The surgeon will be taking out Ben's trach and putting in a new one that will allow Ben to attempt to breathe through his nose and mouth. Before he switches out the trach, he'll go in and repair the damage that was done to Ben's airway when they put the first trach in. This means that everything above and below Ben's vocal cords should be pretty close to normal after the procedure, and putting this new trach in will let us see how much work the doctor still has to do to open up the airway between the cords. We'll be staying in the ICU at OU Children's Hospital in OKC on the first night after the surgery, and we're hoping he can go home on the 7th.

It's good to be back with y'all again, and thanks as always for praying for Benjamin.

Dictionary

During this graduation season, I've heard many parents say that time has gone by so fast. I'm hoping the next few months go by in slow-mo; this has been a really fun age. Here's a taste of it.




Benjamin goes in to see Dr. Digoy again on Thursday. It's just a bronchoscopy, but we're hoping he'll see plenty of progress.

Sign of the Times

Every time Benjamin has to go in for surgery or a bronchoscopy, we always have to starve him for several hours before he is put under anesthesia. Now that he's a bit older he's starting to learn how to put his sign language to good use. After an hour in the waiting room this morning, Ben had enough and began pulling out all the stops in order to get a little food. Since his signs were falling on the blind eyes of his parents, he began to work on the nurses in the room. By the time he had finished his routine of squeezing his fingers together and rubbing his chest to say "milk pleeeease" followed by his most pathetic frowny face and a few tears down the cheek, the nurses had melted into puddles on the floor. I'm pretty sure if Adrienne and I were not in the room, Ben would've had himself some milk and a steak dinner if he knew the sign for it.

Once they finally knocked Ben out, Dr. Digoy was able to see some good progress with Ben's vocal cords. One side of Ben's airway had opened up so well, that the doctor decided to use a laser to clear out the last little bit of tissue that was blocking that area. There's still a considerable blockage on the other side of Ben's airway around the vocal cords, but Dr. Digoy is now hopeful that this blockage may also recede like the other tissue did.

He told us that he did not feel comfortable doing the surgery that Ben was originally scheduled for because he had done several similar procedures on other kids in recent weeks and was not satisfied with the results. The surgery is pretty painful, and he didn't think it would open up Ben's airway wide enough for him to take out the trach. So we'll probably head down to OKC again in two or three weeks to see how Ben has progressed and figure out what's next.

Thank you all as always for your prayers and thoughtfulness,
Whit, Adrienne, and the Benjamite

I Hear You

This afternoon Adrienne received a phone call from Dr. Digoy out of the blue. He said that he's been having second thoughts about performing this surgery on Ben. Instead of going through with the procedure tomorrow, we're just going to take Ben down to OKC to let the doctor see how the healing of his airway is progressing. Wouldn't it be fantastic if the airway had opened up on its own? I'll let you know what the doctor says when we get back home tomorrow evening. It's nice when God gives us a gentle nudge when we're heading in the wrong direction.

Talk to Me

Sometimes I'm not exactly sure what I'm expecting from God when I pray. Some people say that God speaks to them or directly specifies which way they should go. Others say that God gives them a peace about the decision they're making. And others say that they pray for God simply to guide them through the wisdom and logic he has given to them.

This far on my journey in life, I've never had God speak to me directly (though I've had several instances where God has seemed to hit me over the head with a ton of bricks as I have read and been convicted by his Word.) And I guess there have been times, especially during Ben's first month in the hospital, that I felt God providing me with extra measure of his peace. For the most part though in my experience, God appears to act more subtly through a combination of different people and situations.

We have decided to go with the option to widen Ben's airway by grafting a piece of Ben's rib cartilage into the ring of cartilage around the voice box. The procedure will be done on Tuesday, April 29th and will take about 6 hours. They expect Ben to be in the hospital for about a week to make sure that the cartilage fuses properly and doesn't slip out of place. God hasn't told us to make this decision, and I don't really feel a peace about it either. Is it possible to say that you trust God will work things out even if you don't feel a peace about a decision you are asking him to help you with? Some might say that silence on God's part means that you should just wait for God to act and make things clear. I think Proverbs 20:24 sums it up pretty well, "A person’s steps are directed by the Lord. How then can anyone understand their own way?"

Well, that's enough of that for an evening. On with the Benjamin videos!

None of the Above

"The truth is, I don't know what to do." Generally, this is not the phrase you want to hear from someone who has dedicated his entire adult life to helping kids with medical conditions similar to the one your own child has. These, however, were the first words out of Dr. Digoy's mouth when he came to talk to us after he finished looking at Ben on Thursday.

Originally, the doctor thought that Ben's airway was being blocked further down past the vocal cords, but he was able to see things more clearly now that Ben has healed. Both vocal cords are there, but he found that the excess tissue that was enveloping one of the cords has deformed the cord and pushed it out of its usual position, which is why Ben's airway is still blocked. Dr. Digoy said that he had never seen such extensive tissue growth in any of his trach patients (I believe some sort of prize is in order).

After he explained all of this, he said that we have three main options:

1) Use a laser to cut out the deformed vocal cord and the tissue surrounding it so that Ben's airway is clear and the trach can be removed sooner. Ben should still be able to talk with only one cord, but his voice would always sound raspy. Removing the cord could make it more difficult to swallow since the vocal cords are involved in preventing food and liquid from going down into the airway.

2) Leave the excess tissue and the cord alone, and instead widen Ben's airway by adding some cartilage from Ben's rib to the ring of cartilage around the voice box. This would allow Ben to breathe better and preserve his non-functioning vocal cord, but it would not solve the problem of getting the excess tissue out, which could lead to problems later on. This option could also make it more difficult for Ben to swallow since his airway is basically being propped open.

3) Wait for a year and see how Ben develops. This prevents us from making anything worse than it is already, but one of the things Dr. Digoy told us the first time we met with him is that he likes to move aggressively whenever possible to get trachs out since the mortality rate is higher for kids with trachs.

With options like that, you can see why he said he didn't know what to do. He said he'd like us to think on this and pray about it for the next week or two before we talk with him again and make a decision on which way to go. Obviously, I'd prefer for him to take another look down there in a few weeks and see that everything has been healed completely, but barring that miracle, we really have no idea what is best. Hopefully, God will somehow make that clear very soon.

On a little less serious note, today Ben has finally ended his 14 month long protest against bipedalism. I'm guessing the straw that broke the camel's back was watching Olivia toddling around at her first birthday party this past week. It's just too dangerous to allow a girl who can already beat you up to have a mobility advantage on top of that.

Here's a quick video of Ben's first walking adventure. The production quality is even lower than my already low standards so you may want to watch with a barf bag close by if you've eaten recently and are prone to motion sickness. Enjoy.

Come Again

Just to let you know, I recently participated in an event that may possibly signal the beginning of the end. On the 15th of February, our friends Bobby and Melissa were blessed to bring Robert Michael Smith into the world. Melissa's baby shower, however, was scheduled for the 16th, but rather than reschedule, the show went on with Bobby opening presents and me writing down names and gifts. I'm sure this heinous act seriously violates the unwritten church of Christ shower protocol and even posting this photo may be an excommunicatable offense. But we are beyond the point of no return so here's a picture of two very confused guys lost in this big crazy world.


After Benjamin had his surgery back in December, we started noticing that when we fed him crackers we'd find a few crumbs in his trach. This went on for awhile and we finally decided to put some green food coloring in Ben's milk to see what the deal was. Unfortunately, after we gave him the milk, we found that the secretions that we were suctioning out of his airway were lime green.

The doctor said that Ben is still relearning how to swallow so bread crumbs and liquids tend to go down into his airway. This has forced us to take a step backward and start giving Ben most of his liquids through a stomach tube again. Yesterday at work I swallowed some water down the wrong pipe, and it made me think how annoying it must be for Ben to have that feeling every time he eats.

Ben's next surgery is scheduled for this Thursday. The doctor will be going down past the vocal cords and removing any excess tissue that's constricting Ben's airway. You all know what to do.

February wasn't much of a month for family videos so I leave you with one of Ben right before his birthday party. I take full genetic responsibility for the pot belly and chicken legs.

Revelation

I suppose we've all come to expect good news about Ben's progress, but it still feels good to report it. Dr. Digoy examined the area where the cyst had been taken out last time, and he said he was "amazed" at how well everything had healed. With the cyst out of the way, he was able to take the first look at Ben's vocal cords. He could see that the left cord was in good condition, but he couldn't even find the right cord because the cyst continued all the way down over the area where Ben's right vocal cord should be.

Because everything else had healed well, the doctor decided to go ahead with the procedure to remove the next chunk of the cyst and determine the condition of Ben's other vocal cord (if it had even developed at all). There was a risk of damaging the vocal cord with the laser if the cord was underneath the cyst, but he was confident that the procedure could be done successfully. Half an hour later the cyst was out, and he discovered that Ben's right vocal cord was in its proper place, fully developed, and unharmed by the procedure. This means Benjamin will be able to speak once they take out his trach! That will still be several months down the road after Ben has his trachea reconstruction surgery, but it's such a relief to know that we'll be able hear his voice someday.

We're back home now, and Ben has recovered much more quickly from this surgery. You have once again been our advocates to God when we grow tired. I only hope you draw as much encouragement from this as we do.

With all our love,
Whit, Adrienne, and the audio-enabled Benjamin

Mystery

I finally got around to reading Phillip Yancey's book "Prayer: Does It Make Any Difference?" It felt good to finish something with a little more depth than Goodnight Moon (though I must say I wouldn't have minded an occasional pop-up page or velcro pig to keep things interesting). The book brought up some issues that I had tucked away in the months after Ben was born.

Many people associated with Oklahoma Christian University were praying for a little girl named Harper Hawley around the time that Ben was in the hospital. I didn't know the Hawley's well, but I was touched by all the struggles they were going through as their baby's health slowly deteriorated.

At times it felt strange to write about all of the answers to prayer we were witnessing while another faithful Christian family had to deal with God's silence and the eventual loss of their child. Both babies had legions of people praying round the clock for their healing, yet God allowed one to live and one to die. How can we say our prayers truly make a difference when we see seemingly arbitrary behavior on God's part? We serve a mysterious God. All I know is that I come home every day to a smiling, healthy baby boy who should not be alive after everything that happened to him. That fact prevents me from saying that prayer doesn't make a difference even though I understand so little about prayer.

On Friday, Ben goes in for his next round of surgery. Dr. Digoy will be taking a look at his vocal folds to see if they're still blocking his airway. If they are, he'll have to do some delicate work to cut back the vocal folds. We're hoping that he may even be able to tell us whether Ben will be able to speak someday. I don't know how prayer works, but I have seen the influence of your past prayers and ask that you continue to pray for Ben's complete healing. The two weeks after Ben's previous surgeries have been very stressful (little sleep, constant suctioning), and if you could pray for peace in our house during that time, we would love it.

Well, Jenny Connell has outdone herself again with Ben's 1st birthday photos. Her ability to bring out all of Ben's expressions is fantastic. I leave you with some of her latest work.

The Race

Thanks to many of you for the birthday well-wishes this past week. I received a special birthday present on the 3rd when Mike Huckabee was propelled to victory in Iowa due to an endorsement by Chuck Norris and the Huckabee bumper sticker on my car. I'm willing to split the credit 50/50 with Chuck.

After his poor showing in Iowa this past week, Ben has decided to drop out of the race in order to give his full attention to learning how to walk. It's unfortunate because we really wanted to unveil his presidential portrait to the world, but I'll go ahead and let you have a look.


Benjamin had his birthday party on Saturday so I'll leave you with some photos of the highlights.

Christmas Card

We've never been ones to send out Christmas cards so here's our Christmas card to all of you.



And here's the difference between December 31, 2006 and December 31, 2007.


Happy New Year!