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. 

Counting Down!

We are counting down the days until our trip to see Dr. Jyonouchi at UMDNJ's Pediatric Center for Rare & Complex Disease in Newark, NJ.  We will be leaving on Wednesday.  I am so excited, but I am pretty nervous at the same time.  We are praying that Dr. J can give us some insight on what to safely feed Braxton.  While he is doing "okay" these days, our daily lives are still interrupted by vomiting.  As an example, we had a great day today.  We went downtown in the city we live to shop and stroll around outside.  We were there for about two hours before the vomit attack began - leaving a puddle on the street in front of us.  It is 7:10 pm and Braxton has had a complete clothing change 3 times since he got up.  He had to have his bath early because the vomit had seeped through his clothing and his skin was damp all over.  I am grateful, however, that we are no longer allowing these issues to completely isolate our family from the rest of the world.  If Dr. J can assure us that these vomiting episodes aren't hurting him, I can live this way - our family can adapt.  I am so afraid that there is constant damage happening to his insides, however.  I am praying she can give us some answers!  We are so grateful to have the opportunity to see a doctor with such extensive knowledge on FPIES.  We are counting down the days...