Mothers Intuition

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)

Ironic that he sucked on THAT board game. A dear friend said he should’ve chosen Candyland- might’ve tasted better. Sorry that he had to experience symptoms and it wasn’t even a food! Sorry was right, sorry that it caused days of symptoms- thankful though that there was no vomit. It could’ve been leftover symptoms from the probiotic reaction as well. Pale looking, tired looking, difficulty sleeping, pain in his sleep, decreased appetite, fussiness throughout the day, tantrums off and on, mucous-y diapers, definitely off from where we had been just a week before- before probiotics. Maybe it was the probiotics that was causing the weird PICA-like issues as well (that caused him to want to eat the board game) because an iron level check revealed his iron stores in an ok range for him.

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.

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