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."

Thursday, August 19, 2010

Crumbs are an issue

"Crumbs are absolutely an issue, and (looking around the room at our other boys)...I'd say you've got a management issue". Words from our Allergist at CHOP when we asked about how bad crumb ingestion came into play, we had quite the little crumb scavenger.

We took all food, except the elemental formula, away from Little Man at the end of Feb. Yes, that's right- he has not had food in 6mo. He was almost 9mo. old, he knew what he was missing from a "I put everything in my mouth" perspective.

We knew we had to get a tighter control of food in our house because we could not become a dairy/soy/rice/corn free home without it affecting our other boys. Their little brother has FPIES, but they do not. They have lived 9,7,and 3yrs without these restrictions. They are people too, they have needs too (and even their own dietary restrictions). They are also growing and need the nutrition that these foods provide.

We instituted a "no snacking outside the kitchen" rule, we locked the pantry, we got rid of all "snacky" foods, we began to teach his older brothers about the importance of "no crumbs", we tried to get them to eat sufficient enough calories in their "3 square" meals rather than needing snacks (although, personally-I believe 5-6small meals/day are healthier for our digestion than the Standard American Diet). We also made hemp popsicles, and hemp seed cereal, and ice chips - things little man can "play" with (even if he doesn't eat) in a high chair while his brothers eat.

We have tried countless techniques and are always looking for more/better ones to continue to manage a houseful of growing boys when one of them can not have food.

Maybe I stress about it too much but a crumb the size of your fingernail was Little Man's last, and one of his most repeated reactions (the vomiting didn't stop when he emptied his stomach, he ate and it started all over again!). A crumb from a cracker that escaped the soup bowl at lunch one day....a crumb.

Crumbs make him sick. Little Man can't have crumbs. Mudpies (aka big brothers) know this but our mudpie#3, who is 3 can not separate this from his own needs -- if he's hungry (from not eating enough at the meal is the biggest culprit of that), he wants food. It's a natural thing for a toddler.....disrupted by Little Man's FPIES.

The other day, when Little Man was having his tummy ache from millet grits- mudpie#3 was hungry for a snack (and maybe just wanted an escape from the screaming). So, upstairs he headed and unlocked the pantry (this I heard him doing). A few minutes later I went upstairs to check on him (I'm carrying Little Man around the house at this point- so know he is "safe")....I expected to find him in the kitchen, at the table (at the least). Nope, not there- but the pantry is wide open - so he's got a snack and eating it somewhere. I call out to him....and I hear, from in the living room, "yumm, yumm, I'm a cookie monster. I eat cookies. No, no, no crumbs for Sam, crumbs make Sam sick"....points for him as he was eating over the container.

Irony is- the cookies were bought in a Mommy guilt moment for them.

No comments:

Post a Comment