We've Only Just Begun...

Yesterday was a very, very long day for our family. Owen had 5 different appointments in Cincy to check his progress.

Let's start with Nephrology. Owen is doing wonderful on dialysis! His labs are looking good and we were able to take him from 14 hours per night down to 13. :) Hello evening walks this summer! :) We are introducing sodium phosphorous to his medication list again. If you've been following long, you know that this is the medication that sent him to the hospital one month after our discharge in November. Owen needs phosphorous. His levels are very low, which can hinder bone growth. So his is on a tiny, tiny dose. (.3 ml) and we are checking labs on Tuesday. Please pray this will be the correct dosage for his body.

He is up to 19 lbs and grew almost 3 cm this month! This is great because he had only been averaging 1-2 cm the past few months. He is a little over 26 inches. :) His weight is starting to balance out. The past few months his weight vs. length on the growth curve was a vertical line. :)

His development is coming right along as well. He is a busy, busy boy, having 4 therapy sessions per week. He meets with physical therapy twice (1.5hrs), occupational therapy once (1hr) and speech once (30min). Our therapists are so proud of how he is growing and developing. He is very motivated to learn new things and get his "workout" each week! He is very close to sitting up alone. Sometimes we put the boppy in front of him, so he doesn't squish his belly. I would say in a month or so he will be flyin' solo!

Owen still refuses to roll over. Which, I don't really blame him. It's hard for him to be on his tummy because of his dialysis catheter. He also has severe reflux, so he prefers to be upright. So, it looks as if he will sit up before he can roll...he's never followed the "books" anyway. :)

Owen's therapist also decided he is now strong enough to play in his exersaucer!

I think he likes it! :)

Owen also had a few urology appointments yesterday. If you remember, Owen's loss of kidney function was caused by a blockage right below his bladder that did not allow him to pee in utero. This caused all the urine to back up into his bladder, then up his ureters (tubes connecting kidneys and bladder) and then back into his kidneys. This not only "killed" his kidneys, but also caused major damage to his bladder and ureters. So yesterday the doctors were testing Owen's bladder for high pressures and to see if it still had reflux, backing up into his ureters.

Unfortunately we did not get the news we were hoping for. Owen's bladder can only hold about as much urine as a newborn. From there, it will spasm, and empty a little, but also reflux back into his ureters. Owen's urologist was very clear he is no where near ready for a transplant. Without a healthy bladder, the transplant will be useless, as the bad bladder will damage the new kidney.

So what do we do from here? Well, we are increasing the medication that "paralyzes" his bladder. They want to stretch it as much as possible, without it receiving pressure to urinate. We are going to to this for 3 months. Then, it is possible we will begin to bladder washes. We will be infusing saline into his bladder each day, adding more each time to stretch it. Hopefully, the medicine will be working and it will "hold it in " for a period of time until we cath him later.

Then, there is yet another surgery. It is likely Owen will need a re-implantation of his ureters. They are so twisted and stretched they just aren't acceptable to place them with a new, healthy kidney. We aren't sure when this will be, or if will for sure happen. But, our doctors were very clear that you can not underestimate how important it it to have a bladder ready for transplant.

Our urologist also wants us to start cathing Owen more frequently. This is in part, because he would rather him not urinate. But also so Owen sees it as part of his everyday life. Our doctor is preparing us to cath Owen for life. It will be too risky to rely on his bladder to completely empty. They have assured us that he will still live a normal life, and learn to do this on his own quickly. Although Owen is quite used to us cathing him now, it's a very hard pill to swallow. But in the grand scheme of things, it's so very minor. If that's what it takes for Owen to live a life free of kidney disease and dialysis, I think we can handle that.

Many of you know that Michael also had his CT scan yesterday to look at his kidneys for possible donation. Unfortunately this was also not the news we were hoping to hear. Michael does have two healthy kidneys, but he also has some abnormal vessels. He has two arteries going to each kidney (they prefer one) and his his right kidney has an extra vein. So his left kidney will be the only option, but again , the two arteries make the surgery more difficult. We have not heard from the actual transplant surgeon, but our nephrologists warned us that it is likely not the optimal choice. Please, please pray for wisdom for our doctors as they make this decision. Also, pray that Michael and I will not be burdened by worry as we wait for a decision.

So all in all, this was a very long and trying day. However, we cannot loose sight of how extremely well Owen is doing right now. He is doing so much more than many doctors ever predicted him to do! I don't understand this suffering. And yes, I have begged and pleaded with God for a "break". But, this is our journey and in turn our blessing. And yesterday we were hit again, with just how long this journey is. BUT, it will NOT steal our joy. Our hope is still in a sovereign Lord who cares for His children.

Please continue to pray for sweet Owen. Pray specifically that the increase in medicine this month will relieve his bladder of the reflux and surgery will not be necessary. Continue to boldly ask God for a miracle.Not a day goes by that I don't speak healing over Owen in the name of Jesus. I believe, I know God can completely take this away from Owen and make his body new. I also know, that whatever the Lord's choice, I choose to follow Him. It is only by His grace, that I have faith to believe and serve a mighty God who works miracles.

The night that Owen was born was very scary and happened so very quickly, but I can remember very clearly being on the operating table and reciting one of my favorite verses over and over as the doctors worked to pull Owen out.

Now then, stand still and see this great thing that the Lord is about to do! 1 Sam 12:16

When you think of Owen, and remember to pray for him, please speak this verse loud and clear. I was confident at his birth that we would see the glory of the Lord and I remain confident that He will continue to reign over Owen. His glory will be revealed in Owen's healing, whether through divine intervention or through  the careful hands of our surgeons. No matter what, God still doing great things in Owen, and revealing more of Himself to me each day.