Wednesday, February 25, 2015

Big Ben Bowen

Whenever I see the date February 25 I am transported back in time. 

I remember where I was when I listened to the voice mail that crushed my heart. It was a cold, snowy day and we were in Indianapolis visiting family. 
I felt so helpless for my dear sweet  friend, there was nothing I could say or do that would bring her comfort. 

This year marks the 10th Anniversary of  Big Ben Bowen being reunited with his Creator. I can't even believe that I am typing those words. Vividly, I recall the events of those days in my mind. From the first moment I heard the news of his passing to witnessing the beautiful celebration of his life, the details of each event are etched in my heart. 

Thinking about his amazing life brings me such joy. This little guy with an infectious smile accomplished more in his short life than some of us do in a lifetime. God used Ben's pain for a greater purpose than anyone could have ever imagined. 
Because of Tom and Jennifer's faithfulness God changed many lives. I was privileged to have had the opportunity to walk so closely to them during that time, witnessing first hand the incredible work of God. 

Big Ben you are deeply missed on this side of heaven but your beautiful legacy will remain forever. What the devil intended for evil God continues to use for good! 

Tom and Jennifer, we will never forget him or your faithfulness. Thank you for allowing his light to shine on us all!
November 14, 2002 - February 25, 2005

Ben's Wikipedia Page
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Saturday, February 21, 2015

I will not complain...

Last week my big problem was that my washer decided that enough was enough and went on permanent strike. I was just thankful that it's financial timing was perfect, however I can't say as much for it being considerate of the pending snow storm.

After selecting the beast that would tackle the massive aftermath the old one left behind, we waited for it's highly anticipated arrival.  And then the snow came and the washer didn't...

And so I complained... a little... or perhaps a lot.

Twice my washer was brought within 400 yards of my home... and twice it was taken away because they couldn't get through the blizzard remnants to get it into the house.

But now I will no longer complain because 3 days ago life reminded me what a real problem was, knocking my washer and weather problem significantly down in the rankings. Cohen started getting sicker and we were having to consider the possibility of heading to Cincinnati.

Washer and storm problem status reduced too... just a terrible inconvenience!

I will not complain because... 48 hours ago, it was a done deal... we were told that it would probably be best to get him to Cincinnati and so we started making the arrangements for our travel.

That's when I petitioned my friends for prayers! 

Then 24 hours ago... I found myself involved in a furry of phone calls and blood tests in an attempt to figure out the best treatment plan for our superhero.  Our doctors in Cincinnati were corresponding with each other trying to figure out a plan, unfortunately, we are on uncharted waters with Cohen. Every illness is complicated by his FPIES, which requires us to carefully weigh treatments so they don't do more damage than the illness.

My little boy is so very strong and even through the pain of repeated blood work he would smile with tears streaming down his little face and then thank everyone when it was over. 

Then last night we saw the result of countless prayers....

I was still trying to get home from the doctors office when our amazing pulmonologist in Cincinnati called and I heard her speak the most beautiful words.... "Let's treat him at home for now and just keep a close eye on him!"  One of the advantages to having a doctor in the home and I am sure a major factor that played into her final decision. She gave me her number and instructed me to notify her in the event that he declines in the slightest. He is doing well enough now that we all feel comfortable with this plan.
Waiting to be taken to it's final resting place.

I could have done a happy dance.... however I was still sitting in my car!

What washer and storm problem??

I will not complain because nothing else matters right now... 

Cohen and I were suppose to be 6 hours away from the rest of our family, in a hospital with my little superhero... but were not.... were home. And although he isn't out of the woods just yet I have confidence he will be better soon and we will be giving God all the Glory.

I know that your prayers are responsible for this battle's victory and I can't thank you enough. Please keep praying us through the rest of the war, your faithfulness is making a difference in the life of one little superhero.

Did I mention we get to stay HOME? 

It's safe to say I'm extremely happy to have my entire family under one very snowy roof... I will never take that gift for granted!

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Friday, February 13, 2015

Pole Break: In Honor of Feeding Tube Awareness Week

Do you remember that childhood game of tag where someone yells "Jail Break" and everyone runs in every direction as fast as they can?

Well, we play a very similar game every single day, only it's called "Pole Break!"  We love this time of day, it's when our favorite little "Tubie" gets his window (for my non-tube friends: that's the term used for getting a break from your tube feeds). 

Imagine being two years old and attached to an IV pole for 21 hours a day! 

Our little guy is now fed through a GJ-Tube, which means one tube feeds formula directly into his intestines while another tube lets the pressure vent from his belly. If his vent bag is at a lower level his vent bag will fill up with fluids depleting him of much needed daily fluids.

You can feel the excitement build and watch his little eyes light up when we say, 
"Cohen, do you want me to unplug you?" 
He usually replies with a squeal of joy. Then we stand back... when those connections come off he runs like the wind. It's wonderful to see him so happy.

Unfortunately, he has learned to sense when our game is coming to end and has started hiding in a desperate attempt to avoid getting "plugged back in" to the dreaded pole. It is the hardest part of my day... knowing that he wants freedom that I can't give him.

Someday little man... I promise! 
I know in my heart this is not forever! One of these days we will have a huge celebration. I have decided that we will mark the occasion by having a 
In order to be invited to the grand event you must come up with a creative way to destroy this pesky pole!

Don't get me wrong I have the utmost appreciation for the job it is doing to keep my child alive, however I eagerly await the day when I can witness it's demise, a sediment that I am sure I share with our Tubie Buddies' mothers.

How can I love something so much that I desperately hate? Because it's my son's life source and for that reason alone I will forever be indebted to it. And as much as I love what it has given us... I will love seeing it go away even more.

But for now we will keep playing our game and enjoy the gift of our "window"

For more information on feeding tubes visit our friends at Feeding Tube Awareness Picture

If your new to the feeding tube world and use a kangaroo joey pump you can watch our how to video here...

Happy Feeding Tube Awareness Week Tubie Friends.
Together we are teaching the world the true beauty of 
feeding tubes!
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