Saturday, January 26, 2013

The Marathon Hurdler

Athlete: I am not.

Track Star: Definitely not.

A Marathon Hurdler: I've come to be.

I've always been amazed at the men and women who compete in hurdles in track and field. They way they seem to so effortlessly run with great speed, all while clearing bars set almost as tall as me.

I'm not in a sprint race, this journey is a marathon. This week, I've realized it's not only a marathon, it's a marathon laced with many, many hurdles.

We have been thrown, yet again another hurdle, but I'm confident with all our practice over the past couple years, we can clear this one, one step at a time.

Owen's bladder is bad. Very bad. This isn't "new" news to us. In fact, it's a botched bladder that is the root of all of Owen's health problems. The blockage in his bladder is what led to his ultimate kidney failure.

However, we were on the right track. Six months after transplant we received wonderful news that Owen's latest bladder testing had shown remarkable improvements. Our doctor, (who is very wise, yet very straightforward which comes off as slightly pessimistic) was ecstatic.

This week's appointment was quite the opposite. Owen's bladder is showing deterioration from his last appointment. It has shrunk in size, under a lot of pressure and very rigid around the edges. Our doctor believes the source of our problems is lying within our cathing schedule.

Immediately after transplant a foley catheter was placed in Owen's bladder and left there for a week or so. This is the type of catheter you see people have in the hospital. There is a bag attached to the end and you can easily measure the urine output. This was necessary because Owen was produced multiple liters of urine post transplant. In order to keep his adult sized kidney hydrated and to avoid it being in "shock" he was given a lot of fluids. Which meant he made a lot of pee. Since we knew Owen's bladder could not be trusted and we did not want it refluxing back in to his new kidney, we had a very strict cathing regimen of every 2 hours throughout the day, and then placing the foley catheter at night, letting it dwell for 8 hours. We were eventually moved to a 4 hour interval during the day, but kept the nighttime foley because Owen was getting fluids over the pump throughout the night, which meant he was making more urine overnight than the average person.

It's the foley. Long term use of a foley catheter can cause damage and irritation. Praise God we have an answer (hopefully) and we have already began implementing new changes to our daily schedule to get more fluids in during the day, and none at night. This will require Michael and I to wake and cath him a few times throughout the night. Our doctor made several suggestions, a medication change and of course a schedule change. We are confident that the changes will result in bladder restoration and we will see that in our upcoming visits.

We return in 3 weeks with an ultrasound and then in 6 weeks, Owen will be making another trip to the OR for a cystoscopy. This is where the doctor will insert a camera into his bladder to see exactly what we are dealing with.

Thank you, prayer warriors for your immediate support when I called on you yesterday. As upset as this news made me, the tears I shed were those of gratitude and thankfulness for the body of Christ that is surrounding us. Within minutes of posting our news on facebook, I was receiving phone calls, texts, emails and words of encouragement from so many people. We need you again.

Please pray specifically:
1. Owen's bladder will rest during this time.
2. Owen's bladder will strengthen and stretch to hold more urine.
3. Owen's bladder will relax, and be free of the high pressures, causing reflux.

On the way to the hospital yesterday the boys and I were "jamming" to one of our favorite girls: Natalie Grant.

The song I will Not be Moved is a great way to get my morning going and I sang along, praising God as we made our morning drive.

It was absolutely no coincidence that the song I chose to start my day off with, would be the one playing in my head as a lay down to go to sleep.

I will stumble, I will fall down
But I will not be moved
I will make mistakes, I will face heartache,
But I will not be moved
On Christ the Solid Rock I stand,
all other ground is sinking sand.
I will not be moved.

And the chaos in my life, has been a badge I've worn
And though I have been torn
I will not be moved

I will make mistakes, I will face heartache
But I will not be moved
On Christ the Solid Rock I stand,
all other ground is sinking sand.
I will not be moved

Click here to listen to the song in it's entirety.

Satan will use this time to easily creep in to my life and make me stumble into a pit of sorrow, and even feeling sorry for myself. Thinking it's time we are due a break. I will not be moved. Again, it is no coincidence that I shared with our friends and readers of my recent joy in finding complete contentment, enjoying my time on this mountaintop. Again, I will not be moved.

Ezekiel 34:26
"I will send down showers in season; there will be showers of blessing."
"When you are confronted with a matter that requires immediate prayer, pray until you believe God- until with whole hearted sincerity you can thank Him for the answer...There is nothing that so fully solidifies faith as being so sure of the answer that you can thank God for it."

Sunday, January 20, 2013

HIS Timing

Ladies and Gentlemen, I'd like to introduce to you, the one and only....Owen, the walker!!!

Yes, you read that correctly, Owen is walking...well, running in some cases. ;) Owen began taking a few steps a couple weeks ago and hasn't looked back since. The boy is W.I.L.D.

Walking has been Owen's goal since, well crawling. We have used various techniques and walkers during his physical therapy to aid in walking, but Owen wanted no part of them. He was determined to figure this out on his own. On HIS timing. And, buddy he's got it!


We are so incredibly proud of Owen and so blessed to finally experience this new phase of his life. He is doing so wonderful and although it's always on HIS timing, it's just perfect. :)

Owen's latest adventure of learning to walk has coincidentally spoken to me during my devotional time with The Lord. I've always been taught (an encouraged others as well) about God's perfect timing. And I truly believed that what I learned (and said) that God's timing is perfect, it's not our own and we may not understand it, but He's never late.

Well, I get it. I finally, really get it. My time of suffering, waiting for Owen's birth, 20 months of dialysis, testing for transplant, multiple hospital stays, lab draws, shots, it was excruciating to say the least. I've actually forgotten some of how hard our life was, simply because it's so great now. But there are times that I have flashbacks to specific moments of my life that can take my breath away. I can smell the sterile hospital smell, hear the beeping monitors in my sleep, and yet as quickly as I fall into that dark time, I am brought back by a squeal of laughter from a walking, miracle boy.

I came across this passage in my devotional this week:

"This is the blessed life- not anxious to see far down the road nor overly concerned about the next step, not eager to choose the path nor weighted down with the heavy responsibilities of the future, but quietly following the Shepherd, one step at a time."

John 10:4
When He has brought out all His own, He goes ahead of them.

It hit me. I'm here. This is what I'm living. This, "blessed life". Finally, I am content. After (almost) 3 years of anxiety, suffering, sorrow and worry, I can rest. I am resting in the arms of Jesus like never before. The last few days of my quiet time have been just that: quiet. Not many words spoken, words written or songs sung, just me and The Lord, quiet, together. It is such an overwhelming sense of peace, comfort and contentment I wish I could easily put it into words so you could experience it as well.

He's already been here. The creator of my yesterdays, todays and tommorrows, He's already lived this. He knows my suffering because He has already endured it for me.

HIS timing is so intricately and divinely created that He appointed the moment that I would finally let go, that I would finally see where this suffering has brought me. To a place of peace I could never have imagined. And that I would get it. Just get it. It's been my prayer that Owen's life would touch those that know him, that his story would radiate the blessings of God. That the followers of this blog and friends who have seen how far Owen has come would be blessed and see The Lord's hand through our journey. I just didn't realize how much Owen would change me.

I was so blessed this week to hear the song Hope Now, by Addison Road. I heard this song for this first time shortly after learning of Owen's health issues. It brought me great hope and I praised God through tears while listening to it. Music has always been one of my favorite ways to honor God, but this week the song spoke to my soul in a new way.

If everything comes down to love
Then just what am I afraid of
When I call out Your name
Something inside awakes in my soul
How quickly I forget I'm Yours

I'm not my own
I've been carried by You
All my life

I think that through my suffering, my focus (rightly so) has been on Owen. I can quickly forget that I too, am a child of God and he loves me unconditionally. Again, through tears I realized that this has been so much more than me praying for a miracle to save my son. It's been about saving me, too.

Thank you, friends for your prayers. I know that many of you love Owen and have yet to meet him. Thank you for praying for our family as a whole. You have carried us through many dark times and I praise God for the legacy Owen's life is creating.
Owen recently had some bladder testing done and although we don't know the "official results" we are pretty certain there are no major changes. We meet with our doctor this Friday to discuss the results and changes, if any. Right now we Owen is catheterized every 4 hours, with an in dwelling catheter for 8 hours over night. We are so blessed that because Owen has been cathed since birth, it is a normal part of his routine and does not bother him. Please pray for wisdom for our doctor in making decisions for our sweet boy!

Our littlest man is growing by leaps and bounds. And even through my pleas for time to slow down, he just keeps getting bigger by the day. :) He recently started tasting some solid foods and although he seems to enjoy almost anything, he is loving sweet potatoes and avocados! I've taken on the adventure of making his food and it is turning out to be a blast! He brings so much joy to my heart, he even makes waking up early fun....who could resist his full faced grin and sweet squeal?! :)

Thank you, Lord for entrusting these sweet, sweet boys to my care while on this earth!

Deuteronomy 7:6
"The Lord your God has chosen you....His most treasured possession."