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."

Tuesday, February 28, 2012


As we continue the Alimentum RTF via NG tube at home, we are not seeing any build of concerning symptoms and most of the other symptoms seem to be evening out.    We have not seen any more blood in his diapers, and his mood remains good (appropriate 2yr.old), his sleep is ok - and we continue to work that he can handle better overnight.  I suspect that his system is just simply struggling with the continuous drip all night long and wish that we didn't have that but there is no other way to get in that volume of formula.     He continues to drink his hemp milk well and enjoys his bottles but refuses any drop or mention of the formula.    He has been great with the NG tube though, maybe it is because of the PICC line and he is used to having a tube from his body.   The worst part of the NG tube is having to change the tape that keeps it anchored to his nose- he REALLY does not like us to touch it or mess with it at all (so he doesn't mess with it either!) 

Today, he ate peaches!  He asked for them at lunch time.   I cook and puree fresh peaches and store them in ice cube trays, so I can pop them out and defrost them in the microwave when he wants them, or when I want to use them for baking.   He ate 4 ice cube trays!   Licked the bowl clean.    He does like his peaches but he doesn't eat them regularly and he is not fond of this was really great to watch him, especially the licking the bowl clean!  

I continue to pray (and feel prayers for us) that he will continue to adjust with the formula and that the symptoms we have seen are simply just healing.   On scope just days before the challenge introduction of the formula showed that he still had some degree of villi damage....maybe we were seeing the symptoms because of that; but with the increasing feeds through his gut, we are seeing healing?  We are hopeful.   

We still do not know yet how we will continue to get the formula in him, if not an NG tube, than a G tube so that lingers on our mind...a decision that will not be easy to make...

He seems to have good days and then seemingly random off days.  We are concerned for his tolerance of the continuous feeding he gets through the night or is it something in the Alimentum itself?  Still not sure about it all because the other day was rotten and I am not sure what that was about- maybe he got "corned" (a term referenced in the corn allergic people when one is exposed to corn- because it is EVERYWHERE!)?  He was pale and yucky all day.  But he has been improved since; although he has random eruptions of skin coloring changes- not rashes but mottling, purplish skin, blue around his lips, etc....I can't seem to figure out what to make of all of that- doesn't have a history of it when not trialing foods (but presents itself when trialing).    He also has a serious "allergy ring" (diaper area).     We will need to work through these things over the next week or so -- before we decide to put a G-tube in for these feeds; we want to be sure he is 100% tolerating it.   

I try not to think too far ahead though, he is good today... and overall, he's doing really well- not as high maintenance and it feels good to have glimpses of a family routine and structure again that isn't completely around his mood and schedule.   

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