I thought that yesterday was a fluke. I thought that today, when Ginny saw the spinach again - and tasted the spinach again- she'd change her mind. Nope. I buckled her into her seat and had to walk back to the kitchen to get her 1/2 teaspoon of pureed spinach, and as soon as I turned my back without having fed her, she went NUTS. The girl just wants to eat. So she wolfed down her bit-o-spinach in record time and followed it up with an ice cube in her mesh feeder while I wolfed down my cereal and coaxed Ellie through her sleepy, painfully slow, easily distracted morning meal.
Once again, so far, so good. No scary diapers. No hiccups. No crazy gas or cramps. No reflux and, best of all, no vomiting. It would be amazing to start our food trials 2 for 2. It would be amazing and, to be honest, all the credit would go to the moms who have done this before us. The list of foods we're trying first- pears, spinach and lamb - have all been suggested by other FPIES moms. I love Wonder Woman and am really growing to like Boy Wonder more every day, but it has been the other FPIES moms I've 'met' via internet communities that have educated us, answered questions, calmed our fears and kept us from feeling crazy, lost and alone. So, our hats are off to all of you. We thank you. You rock :)
In addition to the spinach trial, we are also in the midst of a patch test for Ginny. Monday afternoon we visited Boy Wonder who applied small, watch battery sized 'patches' of soy, eggs and milk to Ginny's back. The patches will stay there until Thursday. (Our internet is down at home and I'm using the internet at a friends' house and don't have my camera so can't upload the picture of this now, but will soon!) As far as I can tell, the patches don't bother Ginny in the slightest. She doesn't even seem to know they're there -although Eloise is BEYOND crazy curious and dying to mess with them. This test is by no means foolproof and, recently, we've read that the results are more like 50% accurate instead of the 95% we'd heard before, but I'm still anxious to see the outcome. If any of the patches leave horrific marks, we'll know that food should absolutely be avoided. Should the skin not react at all, or react only slightly, we may consider trialing that food. Or not. Or maybe. Really, I don't know. In some ways, I just felt like we needed to keep making forward progress and trying SOMETHING to work out pieces of this FPIES puzzle.
So that's the news. If Comcast has us up and running tomorrow (are any of you laughing because you have Comcast and know it sucks too?!) I'll post pictures of Ginny's patches. Now, all together, everyone wish my Dad a Happy Birthday. Happy Birthday Dad! I'm hoping he got more than a 1/2 teaspoon of spinach to celebrate.
We named her Genevieve. We call her Ginny, G, Little G... and sometimes even Goob. She has FPIES - Food Protein Induced Entercolitis Syndrome. The road to a diagnosis was tough, and we have an even longer road ahead of us as we figure out just what we can safely feed her, and work to keep her growing healthy and strong. I'm blogging to keep family and friends up to date as we learn more everyday - and just maybe our story will help other parents as they journey and struggle with FPIES too.
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