Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Monday, July 5, 2010
Steps to finding a baseline...
We wanted to move away from Neocate so we were trying to mix it 3/4 Hemp and 1/4 Neocate and I think it wasn't enough calories/volume/carbs because he wasn't sleeping well but otherwise had no other symptoms, except of course runny stools (not concerning on a liquid diet, as long as there isn't mucous). So, until we can fortify it, we have went back to 1/2 Neocate and 1/2 Hemp and he is doing really well with that ratio as far as his tummy and hunger and sleep. The mucous was decreased with the less Neocate but now with the increase back to 1/2 and 1/2- it is back. So, I have reassurances that once we get the fortifiers in the Hemp and away from the Neocate that our little man will FINALLY HEAL!!
We haven't had an accidental crumb exposures in a week....because he isn't as hungry so he isn't scrounging for food. He controlled his own intakes of Neocate and we knew it wasn't enough but he simply would not take any more. Now, with the hemp he takes 40-50oz./day (Neocate it was 20-34oz.at most). Also, being able to sit him at the table when his brothers eat and give him his Hemp milk popsicles has been so fun for him! He ate 2 for lunch today!!
We are really hoping Hemp is a true success...as it really does appear to be helping at this point. I know the little man is in there, under all the pain....even though he went "hiding" at 3mo old- a mommy knows....
Just seeing the little boy we are seeing the past few days is exciting at the possibilities of how things will be in the upcoming months when we can start to get some foods in him. I think we'll hang out with no foods for awhile...not sure how long though -- at least 2-3weeks and anything past that I will let him guide us (as he always has).
We meet with the Dietitian tomorrow morning. Hopefully it won't take long to get the fortifiers that we need and we can get him off Neocate completly and get this little boy thriving and growing again!!