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, March 6, 2012

A Whistle & A Blessing?

Or at least that is what I hoped some setback/symptoms were from.  The other day, I picked up his brother from an after school class and he was jingling a whistle in his pocket.   Little man, of course heard it and asked for it.  I had woken him up from his nap to go pick the kids up from the bus and from the after school class so he was being a little edgy.  We succeeded in convincing him it was simply a bell, and let him play with it.  He doesn't know it's a whistle (I keep any toys that would be 'mouthed" out of our house because the cross contamination risk of one boy who had just eaten something that little man is allergic to is too high with a 2yr.old that doesn't understand why his brothers get to play with the toy and he doesn't).   So, he's happy thinking it's a bell.    

He is clutching it when we get home, a new toy he isn't ready to share (or give back to his brother).   But somehow one of his other brothers convinces him to show it to him and promptly shows him it is not a bell but a whistle!  Little man is TICKLED and excitedly comes to show me what his big brother taught him.  He is giggling and giggling- how can I stop him?  He's already sucked on it (before he came to show me), and he is having SO MUCH FUN with it- belly rolling giggling at his discovery!   I saw a little prayer and call his brother up to tell me what he ate before he used the whistle. Lunch...a dozen things could be living residue on this whistle.   We can only wait....

2 hours following the whistle blowing fun, he has a nasty diaper with mucus and green slime (mixed in with normal stool, so not a full diaper of slime), but the tell-tale smell of reaction permeates the house (and his brothers are sure to confirm'd think they'd be used to it by now but the "he has a really bad stinky" yelling while running through the house gagging apparently just never gets old.   

He has some trouble going to sleep that night and the next day he just isn't feeling good, noted by the whining, clinging and decreased appetite.   We had a busy morning with taking kids to school, to preschool, dietitian appointment, I'm hopeful it is just from the busy morning.   His afternoon improved; so I'm hopeful we've seen the end of it (whatever caused it).   This allergy is so bizarre- and he's had dozens of this type of cross contamination reaction - why do I still feel like I'm just seeing things?   

Over the next few days, he is still "off" and I notice he has a small eczema patch on his leg I will be watching (he NEVER gets eczema outside of a food trigger).    Now, I'm actually hoping it IS from the whistle (and not the Alimentum we've been questioning his tolerance of) because it brought on more trouble than I anticipated....with all the symptoms he had for a few days, I'm surprised he didn't vomit from it all.    

I'm still banking on all of his symptoms being from that, as they escalated and then seemed to peak and are now coming down, with a few lingering ones that are still making me concerned.   The night time waking is the biggest one right now.   He is awake in the middle of the night, wide awake or crying awake and it's been too many nights now to be coincidental.   I am hoping it was related to the whistle because it is otherwise related to his "feeds"- he is on a drip feed overnight to get 15-21oz. of formula that is too hard to give during the day without taking away his hemp milk bottles (and his own eating skill) away from him -- which would be going backwards so it is not something we want to do.  If his hemp milk were just water, that would be another discussion but his hemp milk is nutrition itself and it keeps him knowing that he needs to eat (even if it is drinking from a bottle) when he is hungry.   The tube feedings are to help him not be as hungry and provide missed nutrition, between his own "meals" (right now hemp milk formula, peaches and millet cookies) and provide is not meant to take away all his appetite and skill of eating, for him. 

We are at 3 weeks now on full Alimentum RTF with each day getting more assurances that he is not having any reactions from the dairy protein in it.   

With this weekend being a slip back into the "crisis" mode from his not feeling too well, a mode we have spent so much time in over the past 2yrs., that has so much focus and attention on Little Man and so much less than what we aspire to on the other boys, it is giving me some comfort in the decision of the feeding tube surgery.  If this gives him the break from food trials by providing the means to give him the formula that his body can thrive on, it will increase not only his quality of life but his brothers as well.  

A little message I needed, a blessing in disguise for my heart.... 

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