I've found that, for better or for worse, "writing" my thoughts proves cathartic. This blog is for myself, as well as any of our family or friends who may be invested in our struggles with FPIES. It's also for anyone else who may be going through this rare and scary disease with a child.
We learned of Claire's diagnosis two days ago, just three days after her 6-monthiversary. I hope that this blog will have plenty of happy and triumphant stories to share, though I am aware that we have a long road ahead. I know that every child with FPIES fights a slightly different battle and every doctor has a little something different to say. I hope we can start a candid discussion so that we can ALL find an end quickly.
That said, here are some links to the very beginning of my research...
http://www.kidswithfoodallergies.org/resourcespre.php?id=99
http://pediatrics.aappublications.org/cgi/content/abstract/120/Supplement_3/S116
http://www.ncbi.nlm.nih.gov/pubmed/12671120?log$=activity
http://www.mja.com.au/public/issues/185_07_021006/all10609_fm.html
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I have no doubt that your willingness to fight this battle head-on with an open book will touch the lives of others in positive ways! I hope today was a good day!
ReplyDeleteGosh, Kristin! This is just like you!!! You take an extremely difficult situation and turn it into a way to provide information for other people who are searching for answers. You're an amazing lady!!
ReplyDeleteClairey will be kept safe and healthy under your watch. She is so very lucky to have you as a mother. I know you and her daddy and big bro will protect her and work through this.
We will do anything to help. We love our S-family friends!!