Monday, April 4, 2011

Finding Our Way to Normal

Braxton is finally doing so much better.  For the past two nights in a row, he has slept 6+ hours without interruption.  He is eating like crazy - I hope this is due to a growth spurt.  We went to church yesterday and for once I didn't cry through the entire service about FPIES and I didn't worry about him too much.  It was wonderful!  There is a gray cloud looming over my head, though.  I love these times - Times when I can play with him and watch him laugh... times when I really get to enjoy the unique personality of my little baby.  I know these times will go by in the blink of an eye.  I also know that I need to email Dr. J to find out what other brand of enzyme replacement and what brand of probiotic we should be using.  I am avoiding doing this task like the plague!  When Braxton only gets formula, we get to pretend like we have a normal life.  We can go places, we can do things, he feels great... everything is good.  Everytime we deviate from a strictly elemental formula diet with no medications, life gets bad.  No one in our house sleeps, there is constant crying, and I spend every waking moment worried about what is really going on inside of my little boy.  I know we can't go on like this forever - on a diet consisting stricly of elemental formula.  Three different people made comments about how Braxton is half the size of their 6 month old child (and at least in one case, I saw with my own eyes that this is true).  I know the time is close when he is going to have to start to have some solids.   I know that he needs an enzyme replacement to help him pass foods... I know that he needs a probiotic for the same reason - BUT - we just found our way to normal again.  I want to stay here in this safe place forever.  For tonight, I am going to enjoy normal - Tomorrow, I will worry about the rest and I will write that email I have been dreading to hear a response to...  Today, I am grateful for the many blessings God has given our family. This weekend and tonight have definitely been blessings!

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