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."
Saturday, November 12, 2011
Sorry (inedible objects become edible)
I worried if these recent reactions were going to compromise the scope findings. The Sorry board game was Nov.5th, the scope was scheduled for the week of the 7th. We have already lost a month, from the line infection; and he isn’t going to be able to have the PICC line for forever so we need to keep moving forward. We need to utilize the line to draw labs and watch what is happening in his body as we try to get his body to accept a food. Is it something we can change? Is it something we can help his body with? Are the symptoms related to his FPIES or something else? So, we can’t delay any longer but he is still having some symptoms. Ironically, our GI couldn’t do the scope the week that we had planned and put it off a few days. We would do it on Monday the 14th instead; and then be admitted for the food trial on the 16th for 3days. We decided to go with this plan, as we have been waiting months to get to this point.