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!

Milk Formula, Again?

Not really...  but it feels that way.  I remember coming home with my newborn baby.  I was so exhausted.  He cried, and cried, and cried some more - Then, on occasion he would take a breath and he would throw-up or have major gas.  I look back and have no idea how I made it through the first six weeks of his life.  He never slept - I am not kidding, I mean NEVER slept.  When he did finally nod-off it never lasted for more than 15-20 minutes and he was screaming all over again.  For the last day and a half, we have been back to that scary dark place again.  Braxton has been screaming his head off - constant crying and lots of gas.  He wakes up every 2 hours (okay, so it isn't quite as bad as it used to be) screaming.  He is throwing up more and that rash I hoped I would never see again has re-emerged on his beautiful little face.  He has the same cough that he used to have - a dry cough that you can't quite put your finger on.  I know what this means:  it's the Creon.  I had such high hopes!  We are officially pausing the Creon trial.  Maybe I gave him too much (a "sprinkle" to me may be a "dash" to someone else).  Maybe it is just too soon to try it...  I am second-guessing myself as I type: Maybe I am crazy?  No, I know what this looks like - we lived with him like this for so long!  I hate FPIES!  What does this mean for when we are supposed to start thinking about adding a probiotic?!  I am so tired of him failing everything!  He has done well for 5 or 6 days, and now this?!   Well, it's not the end of the world.  We will move forward and continue to try.  I can't wait to get the blood results back from PCRCD - maybe we will have more information at that point.   For now, I will look on the bright side.  He has gained weight and length since we got back from NJ - like a lot of inches and a significant amount of weight.  He is now officially in 6-9 month clothes and he is officially 6 months old (he was in a 0-3 until he was 5 months old!).  Life is good and we are blessed, but for now - no more Creon.