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."

Monday, August 23, 2010

Better Days....

Little Man is better today. The post yesterday is an illustration to help those that do not fully understand the depths that this FPIES beast takes a child. Sorry if it was too "graphic" but this has been our life for the better part of the past year. Crying doesn't begin to describe his level of agitation. I have many times wished I had grabbed the video camera to record small snippets of it -- to help give a visual to what we mean when we say he is in pain. He cries less when he is teething, or has fallen down and is bleeding, or gets a blood draw or IV..... Even his brothers recognize this cry as high pain and agitation. It breaks their hearts to. We owe it to them and to Little Man to keep this from happening.

Hemp milk formula made with Safflower oil and Arrowroot starch takes all of this away. There is no agitation, no screaming for hours, no crying in pain, no waking up at night, no difficult bowel movements -- just playing and exploring like a "normal" 14mo. old little boy.

And as of last evening, I have successfully increased the arrowroot starch in his formula, so now he will get his daily carbohydrate needs!! I have had to really play around with how much hemp milk I cook with the arrowroot starch and how long I cook it, etc to get the consistency right (not too thick, not separated out) and I am hoping I got it closer to what he needs! He is drinking it well since last night! So, so far it isn't too thick! The one kink I still need to work out is the volume, his kidneys are showing a little stress from having to put out so much volume--he averages 65oz./day! But if we could build his tiny menu, that would help alot with that. And now that I am feeling a little more supported (by his almost 2# weight gain ON my formula, his labs holding and by letting the doctors know that this is what I am doing) - I am feeling braver about experimenting with his formula to get it right. Will be good to see where his weights and labs go in a week on this recipe now!

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