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, June 29, 2010

We've been here before....

Little man has "colic" behavior in the evenings- he is upset and we can't pinpoint he hungry, is he overfull, does he just want to eat some actual food, does his belly hurt, does something else hurt, is he overtired?

Since diagnosis, it is actually easier to deal with it all; and oddly enough there is comfort in recognizing that we've been in this same place before....he was reacting to trace proteins in my breast milk too and this is the same symptoms it was causing for him. Wish I would've known then what I know now...

He also has one nasty diaper rash, so I imagine that had something to do with his extra crankiness tonight -- poor little guy, it looks pretty painful but I've run out of idea's of what to put on it....he reacts to diaper rash ointments since birth (now know it could easily have been the corn/talc), he reacts to zinc oxide (thought I was crazy on that one but tried to put it on a face rash he had and it made it worse- so no, not crazy...just little man's sensitivity). Out of desperation for him, I put his eczema ointment on it yesterday -- seemed to help some but he was home with Daddy today and I neglected to tell him I was doing that. We've given him numerous baths....put petroleum jelly on it tonight. I can only imagine the burn it causes him...but, again- we've been here before....

Could tell his stomach hurt tonight too, can't wait to get the Hemp milk and try it!! I ordered a case of it and had it overnight shipped. If he tolerates it, I will request our local grocery store to order it in and buy it from there. I did contact the company yesterday to inquire about the Natural Flavors- knowing that this can often be a corn or wheat source....only to have my suspicions confirmed that it is corn alcohol! ((groan))....although she said that they have changed it and it is now corn free- as long as you get the ones produced recently with an expiration of Feb.11 or later. Say a little prayer that that is what is on it's way to us!!

I contacted Walgreens yesterday and inquired if they can make him a formula....they regret to inform us that it is "beyond their scope of practice"....translation- we don't want responsibility for something like that. Maybe if I had a recipe? Hmmmm....not giving up- yet....anyone who knows me knows I do not back down too easily -- especially not for my boys!!

1 comment:

  1. Joy I am just reading this now and not sure if Sam still has his bad diaper rash or not but if you can find a place that has essential oils down there they work great on them. There is one in particular I use it is called Pure Baby essential oil and I dilute it with distilled water and then use it as a spray. We sell it at where I used to work. Remember Alison who I had get in touch with you, she is the one who got me to try it and it works great. You could also try and see if you could order the product from them if you can't find it anywhere down there. I will give you there website it is and just follow the links and it should get you to where you need to go. Have a good day.