Thursday, June 18, 2015

A good loss


Instead of rejoicing in our most recent news regarding Levi's clear blood test, I have sadly had two rather unsettling days. Personally, I think this happened because Satan would love nothing more than for me to neglect giving God any kind of glory, and instead work to rebuild fears regarding our future.

First off, Levi's extended continuity of care had to change. Nurses have been out, and doctors have rotated shifts. New eyes mean new opinions and new obstacles surfacing. I've heard some new information this week that I've had to process through my own lens of  experience. I have been told more than once that there is a good chance Levi will skip the whole bottle/nursing phase altogether and end up eating his first oral feedings with solid food. If you read between the lines, this prediction means Levi will have a feeding tube for at least the next nine months. I also heard the first prediction at a discharge date:  in the next month. Yet I've also learned not to take much to heart until I see it come to fruition. So much can change in this life and especially in Levi's life with the drop of a hat. There is a fine line between wanting Levi to get the most out of his medical team of experts, and wanting Levi home as soon as possible because he has a greater chance of thriving in his natural environment.

When I heard some of the differing opinions about Levi, and as we all held our breath the past few days in hopes that Levi would not hold his, I began to feel anxious. Surprisingly, I am not really anxious about my ability to care for Levi, and I am not really anxious about Levi's future. But when I sat down and thought about it, I'm anxious about losing my life.

Everyone to some degree worries about "losing" his/her life. Some people avoid faith because of this concern, while others avoid marriage and children for the very same reasons. Either way, it's a last ditch effort in wanting to maintain our control over what we assume is the best way to live our lives. Levi's eventual departure from the hospital will turn our neatly organized routine into a tailspin. I know that it is very easy to create new routines (we have already proven that these past few months), but it's a lifestyle change that I didn't anticipate.

That's when my sweet Father spoke to me again. I opened up my Bible and read Matthew 10:39: "Whoever finds their life will lose it, and whoever loses their life for my sake will find it."

What if we don't realize that by "losing" our old life multiple times means we'll finally find the life we were meant to live. It's like when parents tell their children, "You'll thank me one day." The child thinks that the cotton candy he's eating should be the only food he ever consumes again because there isn't anything better out there. Not only are there better desserts than cotton candy, but eating it every day for the rest of your life would do so much more harm than good.  

As I willingly let go of my cotton candy life, I am nervously excited about Levi entering our world soon. 

Thank you for continuing to pray!

- Levi will continue to go up slowly on his stomach feeds in hopes of getting him off his intestinal feeds. Please pray he can do this. He's coughed and vomited a lot since they started the stomach feeds, so they've increased his acid reflux meds, and we are praying his lungs will stay protected from any fluid.
- Levi will most likely be admitted to Scottish Rite once they decide on the type of feeding tube he'll need after watching him these next two weeks. Please pray that we make the right decision based on differing opinions. 
- Levi has had mild de-sats when he's refluxing, please pray that he can stay on room air!
- Levi will be re-evaluated by the neurologist next week who still wants to do a muscle biopsy even with the clear blood scan. The thought is that if he has to go under anesthesia for a stomach tube, then it'd be easy to grab a little muscle to evaluate so that we can cross everything else off the potential list of future problems. Please pray for our decision with this too. 

We have so much to be thankful for too! I can't believe the strides our little boy has made this past month. It's unbelievable to look back at his condition just a few weeks ago; it only seems possible through divine power.

Love you!

~Losing Buster


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