Crazy

Someone said to me "Doctor's must just think you are amazing".   My answer.....  No, not really.  They just think I'm crazy.   Our GI appt came and went at the beginning of this month.  I like our GI.  He is nice guy, he doesn't think (or at least let on) that I am crazy.   He lets me do my thing.  Even agreeing that some of his patients with severe protein intolerances do every well with a natural path, and eating natural food, rather than *industrial* food (food from a grocery store).   But he is doctor, so he still is very scientific and still concerned with labs and numbers.   Levi's labs are always bad.  Not just bad, but really, really bad.   His last lab results for iron are "transfusion worthy" our nurse told me.  That one was hard to swallow.  It knocked the wind out of me.  I wanted to puke.  This is when I have a hard time trusting.  I want to do everything I can to protect this little dude of mine.   You see, we've tried a few iron supplements.   Levi doesn't handle them well.   They have talked IV iron, which means they will admit us into the hospital and course an iron supplement through his veins by passing his stomach, but he can still can react to that, I don't KNOW for sure that he will, but he very well could.  I know the small amount I have put into his mouth didn't agree with him at all.   My gut feeling is that he doesn't need that iron as much as the labs are saying.   I know how important iron is for the body and brain to function properly, but Levi shows NO outward signs of being anemic.  So getting that news was tough.  I panicked, I cried.  I prayed.... no I begged God to show me what I had to do.  Do we do the IV iron or not?   I wanted to give up....... we have worked so hard, only to be put back in the hospital for something that could set us back huge??  Or be good for us??    I wrote to some of my FPIE mamas.  Those mamas.  The ones who walk this walk with me everyday, the ones whose kids are going through a tougher things than we are..... they talked me through, they prayed with me.  For me.  Then the next morning this devotional came across my screen: 

Do Something
Posted: 08 Mar 2012 10:01 PM PST

“Blessed are those who hunger and thirst for righteousness, for they shall be filled. Matthew 5:6”

Healing begins when you do something.  God’s help is near and always available, but it’s given to those who seek it.  Healing starts when you take a step.  God honors radical, risk-taking faith.

When arks are built, lives are saved.  When soldiers march, Jerichos tumble.

When staffs are raised, seas still open.  When a lunch is shared, thousands are fed.

And when a garment is touched by the hand of an anemic woman in Galilee—Jesus stops!

He stops and responds.

Compared to God’s part, our part is minuscule—but necessary.  We don’t have to do much, but we do have to do something!  Faith with no effort is not faith at all!

Write a letter.  Ask forgiveness.

Call a counselor.  Call a mom!

Visit a doctor.  Be baptized.

Feed a hungry person.

Pray.  Teach.  Go.

God honors radical, risk-taking faith.  And He will respond.
(Max Lucado)

Words I swear were written just for me.  I was once again humbled by God's love for me, for His provision.  Our nurse also called back.  Our GI does not want to do IV iron, he thinks that if any kid would react to IV iron, Levi would be that kid.   But she asked me to please find a supplement for him.  So my hunt for something as natural as can be is on once again.  This is just another little push for me to "do something" push a little hard, because God is with us,  just a little up ahead.  Not always were I can see, but always there.

Two

 Tomorrow Levi turns 2.   Although these last 2 years have held some of the most hardest and scariest times for me, I have also witnessed many blessings and many times of peace.   We have prayed big and I am happy with all the progress we have made.   Levi is eating.  That is amazing!!  He is having 4 ice cubes of broth a day.  Sometimes I don't rotate any more and he eats the same broth for a couple days in a row.  He has 5 broths to choose from.  He eats beef in the form of puree,  tiny pieces of roast beef, meat balls, and liver.  He really doesn't like the texture of any of them, he prefers the most liquid form of anything.  But at least he has a preference :)   He also gets a bit of sauerkraut juice, and fish.   This year is going to be good.  I can feel it, and next year I'm praying for cake!

Fear

It has taken so much.  I can continue to let it take more or I can choose to believe.  Believe that God is going to heal Levi.  I know that to be true.  The healing bit.  Without a doubt in my mind.  I KNOW it, but I still have a hard time releasing myself to completely rest in it.  In my devotions this week, fear has been coming up a lot.  I am the first to admit,  I am very fearful when I feed Levi.  I make a conscious note of the time.  I watch the clock and when the 2 hour mark hits and he is still good, I breathe a little easier.  When the 3 hour mark hits its like a wave of relief flows though me.  "It is hard to walk where we can't see"  is what Max Lucado wrote.  (the dude who writes the devotion I read every morning)  He (Max) also pointed me to the bible story of Jairus in Mark 5.  Jairus' daughter was sick, on her death bed to be exact.  He left her side and went to Jesus with the belief that if he could just get Jesus to just come with him, and touch his daughter, she would be healed.  While Jesus and Jairus were walking to the house someone came and said his daughter had died.   Here is where the story gets good ...... Jesus paid NO attention to the news.   Wanna know why? Because He is the unseen.  He kept walking and went into the house and healed Jairus' daughter.  Jesus walks ahead of every persons "story".   When we can't see, and it's hard to just keep walking, because it so dark and unknown..... Jesus is just ahead, pleading for us to just believe.

 "Overhearing what they said, Jesus told him,  "Don't be afraid; only believe".  Mark 5:36

That verse is on my fridge.  I read it over and over again all day long.   I am choosing to believe.  I will still be cautious, and when he gets sick I will probably still doubt.  But I am going to start taking joy in feeding Levi.  Fear is no longer welcome.   Tonight Levi ate an entire ice cube of beef broth and pureed to liquid beef meat.  He is SO proud of that bowl.  He squeals with delight,  please do not even try to take that bowl away!!