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."

Sunday, September 26, 2010

Feet, Eat....

Little Man man has a small vocabulary.  He understands EVERYTHING, follows simple commands, puts puzzle pieces in a puzzle, "reads" (can tell if the book is upside down), gives Hi-5, blows kisses, waves bye-bye, gets shoes and keys when we say we are going somewhere, knows where his feet and tummy are, and can find his bottle, puppy and blanket when asked.  He knows his brothers by name and is learning the sounds of animals (horse, dog and eagle are his favorite- and everything is a horse, dog, or eagle right?!).  But noticing he is a little behind on the words.  We continue to encourage him to ask for what he wants and use his words, he certainly is proud of the one's he can say:  mama, daddy, Hi, all done, shoes, please, feet, eat, keys (guess long e's are his strong point!).  His favorite word?  Eat.   Eat....irony is never lost on me.  But likely it is because he hears me say it so often...."be quiet and eat", "hurry up and eat" (so I can get it cleaned up and put away and out of danger for little man), "JuSt eAt"....3 times a day to his brothers.  You know when you were little and your parents would say, "eat everything on your plate, there are hungry kids in the world"?  Well, our other boys will grow up to remember hearing all this and "hurry up and eat because your brother can't".

Thanks to another FPIES mom, I got the idea to roast Little Man's hemp seeds.  First, I made him hemp butter the other day- from her recipe creation!  It is very nutty tasting and a bit strong by itself but someday he will have an arrowroot biscuit to put it on.   Until then, I roasted the seeds for him to snack on - I think he knew they were his! He was so excited to try them, they had barely come out of the oven and he was asking to sample them!  He loves this kind of textures- I am really hoping this means we can still avoid real oral aversions but we need to get going on food he can actually eat (and not just primarily play with).  But at least, with this kind of snack- he can sit at the table and be "normal".   "Eat" he says....

Last weekend I made cupcakes for church potluck.   Cupcakes?  What are those?  I hadn't baked in so long, the mix was almost expired!  Ok, for those that know me personally- I am little betty crocker- I LOVE to bake.   Just another thing FPIES has robbed from me.  The irony of it all is how much convenience foods I cook/prepare/hit the drive through for these days.  I hate it.   One day, when Little Man can actually have something besides hemp seed and arrowroot starch - I will be back to my kitchen making more than just Hemp milk formula.    But for now, convenience foods for Little Man's brothers so I can spend 2hrs making his formula every 2days.   I already have 2 blogs to get FPIES friendly recipes from, and can not wait to use some of them!  I have always said I wanted to do more scratch cooking, and I thought I did do a good majority of my cooking from scratch.  Now, with little man's allergies- I will learn what from scratch really means....and I can't wait.  With no soy and no corn- we will have to be careful with everything down to the seasonings and flavorings.  Corn and soy are in EVERYTHING.   Oh, and those cupcakes?  My other boys went CrAzY over them but I couldn't wait to get them to the church and OUT of my house- they were like poison in a cute little cupcake wrapper....crumbs were everywhere.   Little man didn't miss a beat though, and he was "helping"- he lined the cubcake tins and pretended to "eat" a cupcake (from an empty/unused liner) cute and so sad all mixed up in one snapshot.  

I hope the pictures show the color that is coming back to Little Man's eyes and face.  His eyes lack a glow when he is reacting/recovering from reaction.  It is hard to explain and I don't share too many of those pictures but it is always there (well, absent)- when he is feeling better, his eyes dance.   His anemia has given him a pale look even on top of his already fair-skin paleness but, to me, he is getting some color back there too.  I hope this means his body is responding to the iron supplement.  He certainly is returning to a baseline (after 2weeks ago reacting to the tapioca starch in the Vit.C supplement), so that is encouraging to see.  He has been playing well, is content most of the day, plays independently, sleeping better, exploring more, drinking his formula well, maintaining (hopefully gaining) weight, and his diapers have returned to "normal".   We aren't trialing anything right now, we may do something at the end of this week (we'll see what the new Allergist has to say) but at least we know his body is ready when we are ready.   For now, we are enjoying his baseline- once again.   I love my Little Man.

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