There have been a few mamas that have contacted me after reading something here that in some way has helped them (even if in a very small way) and it truly warms my heart. Being able to be one more story that helps put the pieces together for another FPIES mama is the reason I take time (OK, so not so much time lately. I'm horrible!) to blog about our experiences. Because it was FPIES mama blogs that led me to help for Livvy so early. I feel like I have a debt to pay, and should do what I can to add one more voice to this syndrome. So here I am. And I PROMISE I'll be better and I'll turn in my 'homework' in a more timely fashion.
Alright. So since figuring out our corn sensitivity, I've re-trialed several things with Livvy. Here's the current score of safe foods:
- Carrots (YES! they're back! and SAFE!!!)
- White Potato
- Canola Oil
- Buckwheat products (cereal, flour, etc)
- Apples (I think)
- Maple Syrup
- and.... this is so cool... Almond Milk!
I had a moment the other day. A real Oprah 'ah-ha' moment. I was having a bit of a marathon food prep session for Liv's food so that I could freeze individual meals with three foods already portioned out. Both to make daily life easier on me, but also to make it easier for my poor Hubbs to feed her. He works so hard to support our family, but it means that he doesn't see quite as much of how to prepare her food and what is safe. I was mid-use with my foodsaver (Best $4 ever spent at goodwill. seriously.) and it hit me. Like- smacked me in the head. I almost cried but realized it would be a sign for my girls and husband that I had completely gone coo coo for cocoa puffs.
We have enough different foods for several different meals!
I made a similar comment on my facebook page, but I'll go ahead and reiterate and expound for those of you who are just internet friends ;)
Its amazing to be 'here'. A place where we, yes, still have to be very careful but have several safe foods. A place where I don't have to feed my baby girl the same thing at every meal. We are at a place where she likes to eat; there's no fear on her part that she shouldn't eat because she equates food with feeling ill (she used to). This is a place where we still have so far to go, but it makes my mama heart happy to know we've come this far. Livvy is happy. She is healthy. She is gaining weight and growing. Liv is fighting with her sister and she's even perfecting the toddler tantrum right on developmental schedule! This is a place you can't even imagine when you are 'there'. When you're holding a lifeless, gray, vomit-covered baby in your arms... or you are up for the 7th time in a night because your poor baby is in so much pain that they are only able to sleep when they literally have screamed so much that they fall asleep from sheer exhaustion. 'There' being your precious baby looking up at you with the look of desperation that they are in so much pain and they just want you to do your mommy duty and take it all away. And you can't- you don't even know which food caused it.
Yes, it is amazing to be here. So many families have far more complex cases of FPIES for their kids and have to go through NG and G tubes, hospital stay after hospital stay. Two, three years without one safe food. Our journey continues to safely nourish Livvy, but I am thankful every. single. day. that we are where we are and that she is as healthy as she is.
And with that, I'll be back soon with another update. I'll turn in my homework on time from now on :)