Blog Resurrection

What better day than Easter to bring a blog back to life? We have a lot to be thankful for, and I just wanted to give you a glimpse into what's happening with Ben these days. It has been almost 10 months since his last surgery, and his airway seems to have healed perfectly. God has made it like nothing ever happened except for leaving the scars so Ben can always tell his story.

Ben is now in the process of working toward his new dream of growing up to become a race car driver. Originally, he wanted to grow up to be a race car, but he has set that dream aside for now until technology catches up. Right before Christmas our next-door neighbor gave us a Ben-sized 4 wheeler that his kids were too big for. Now that the weather is nice again, I foresee a lot of time trials up and down the cul-de-sac.

We were also fortunate to visit uncle Hal and Aunt Emilie in Montreal during Christmas break. Since we were already paying to bring along an extra suitcase of gifts, we tried others ways to minimize travel costs.

We also had a crazy snowstorm on the first day of spring that gave us a chance to practice the skills we picked up in Canada. I'm pretty sure that baby snowman is going to give me nightmares.

Here are a few videos of Ben learning how to be Canadian.

Prayer for the Day

Trailing Off

Today we'll go heavy on the media, with pictures by Jenny Connell for Ben's 2-year-old pictures. Our time at the hospital filming the commercial went great. Adrienne did most of the talking, Ben did most of the playing, and I was just there to be the trophy husband. I'm guessing it will probably be another month or two before it airs, but we'll let you know when it will be on TV around here. And maybe if I ask nicely, they'll let me post it here as well.

Ben Versus The Molehill

I've been trying to figure out how to express what life feels like now that Ben's trach is finally out. I came across these words from Psalm 116 that say it best:

I love the LORD, for he heard my voice; he heard my cry for mercy.

Because he turned his ear to me, 
       I will call on him as long as I live...

I was overcome by trouble and sorrow...

The LORD is gracious and righteous; our God is full of compassion.

The LORD protects the simplehearted; 
       when I was in great need, he saved me.

Be at rest once more, O my soul, 
       for the LORD has been good to you.

For you, O LORD, have delivered my soul from death, 
       my eyes from tears, 
       my feet from stumbling...

How can I repay the LORD 
       for all his goodness to me?

I will lift up the cup of salvation 
       and call on the name of the LORD.

I will fulfill my vows to the LORD 
       in the presence of all his people.

O LORD, truly I am your servant; 
       I am your servant, the son of your maidservant; 
       you have freed me from my chains.

I will sacrifice a thank offering to you 
       and call on the name of the LORD.

I will fulfill my vows to the LORD 
       in the presence of all his people,

in the courts of the house of the LORD—
       in your midst, O Jerusalem. 
       Praise the LORD. 

To see Ben totally healed after the way things started out leaves me speechless.  How can I repay the Lord for all his goodness to me? I want to, but I know I can't.

There have been a few times this past week where it felt like my spirit was touching God. I have never experienced anything like it. I don't even know if those are the right words to describe it. It was like God was pouring out so much grace on me that for a little while I could feel him around me. I wish I could explain it better.

My thank offering to God is to try and pour out some tiny portion of his grace on others. Can you imagine that day when we will walk into God's house and experience that closeness with God and each other forever?

Meanwhile, back on planet earth, we are teaching our child not to eat dirt from the front lawn.

Miracle Minute

Here's Ben talking it up on his 2nd birthday.

On Ben's birthday, we decided to take a cake to the nurses at the NICU at St. John Hospital where Ben spent the first month of his life. We were also fortunate to meet the doctor on duty when Ben was delivered.  He started the procedure to put in Ben's trach before the surgeon arrived and was definitely one of the people who helped save Ben's life that day.  He was absolutely amazed that Ben had made it through all of this without any long-term health problems.

While we were there, one of the nurses said that Benjamin should be in a TV commercial for the hospital called "Miracle Minute".  We would get to tell Ben's story and share how the doctors and the nurses at the NICU took care of our boy.  We're scheduled to film it on the 19th of February so please pray that we're able to give glory to God and say the right things.

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". 

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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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.

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.

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.

Lawnmower Man

Calvin and Hobbes (or Tigger)

Ride The Horse

OU Tryout

I'll have another blog entry coming soon, but while you're waiting, here's a clip to get you ready for football season.

The Hajj

It's that time of year again; the time when I drag Adrienne off to some place without sufficient air conditioning in celebration of our anniversary. In keeping with our theme of tourist destinations long past their prime (Eureka Springs, Galveston, Keokuk, Lawrence, and Hot Springs were our stops the previous five years) we topped them all by heading on up to Bartlesville, Oklahoma for a weekend getaway.

Those of you who have been brushing up on your Oklahoma Christian University history will know that Bartlesville is the university's birthplace back when it was Central Christian College. No one can be a true alumnus without making at least one pilgrimage to the site during their lifetime. The school is now Oklahoma Wesleyan University, but Adrienne and I think it has more of a Casa Bonita feel to it. Just think about the business model OC missed out on - "Oklahoma Christian, the place for a quality Christian education and low-budget-all-you-can-eat-Mexican food all in a small-town-faux-Spanish-villa setting."



After the hajj was completed, we swung by Frank Lloyd Wright's only skyscraper. We'll save the discussion on why Bartlesville would need skyscrapers for another day.


And last but not least, we stopped by the Woolaroc ranch and museum where we snapped a few pictures that I think Hal would be proud of.


I know most of you who stop by the blog are looking for the kiddo so here is his latest video. Since Ben can't use his vocal cords yet, his oupa is teaching him to speak "duck". You'll probably need to listen closely.

The Big Day

Well Ben's surgery is coming up at 12:30 today, and I'm having trouble sleeping. It has been a while since I've put a video out there so here is Benjamin's sophomore production for your enjoyment.

Movie Debut