tag:blogger.com,1999:blog-1947957832192035290.post1895650054854889988..comments2018-01-03T19:29:43.283-06:00Comments on FPIES & Mud Pies: Our Boys, Our Journey, Our New World...: FPIES = Feeling Powerless In Every Sense.....Joyhttp://www.blogger.com/profile/05801049405099115795noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-1947957832192035290.post-10635626644649705452010-09-30T14:08:50.943-05:002010-09-30T14:08:50.943-05:00The responsibility we all feel to keep our LOs saf...The responsibility we all feel to keep our LOs safe is something words can not describe. My husband and I often have this same discussion. It is like we keep talking and explaining and talking and explaining and yet we are still alone fighting food and lack of awareness. The work everyone has done to build awareness and offer support lifts me as a mother so that I can then continue to manage the daily life of my little one challenged with FPIES. As he is getting older it almost seems hards and at times like I have run out of ideas. The post here and across the web give me hope that answers are to come. Our LOs will be amongst the strongest out on the playground and in life, they have been fighting since day one and will keep on fighting until we have answers. <br />Thank you for all you do to support all of us out here facing this diagnosis with you.Unknownhttps://www.blogger.com/profile/10308167679486678136noreply@blogger.comtag:blogger.com,1999:blog-1947957832192035290.post-67041925788133006562010-09-17T21:18:15.474-05:002010-09-17T21:18:15.474-05:00Heather- I feel your frustration..."Someone h...Heather- I feel your frustration..."Someone hearing my crys meant the world to me." that was all I needed as well. I just needed direction/confirmation that this is what is ravaging my little boys gut for so many months. Direction gave me a plan of action and a plan of action gave me a pain free little boy, and a pain free little boy inspires me. <br />FPIES is such an isolating diagnosis....for a first time mom as much as for a 4th time mom. I suspected something was not right for many months before I brought it to my pediatrician's attention for help-- convinced I wasn't doing something right. <br />It has been a long journey, that is not over yet....<br />Thank you for your support.Joyhttps://www.blogger.com/profile/05801049405099115795noreply@blogger.comtag:blogger.com,1999:blog-1947957832192035290.post-27971497621453087772010-09-17T21:15:01.045-05:002010-09-17T21:15:01.045-05:00Katie- I read your comment and I had an emotional ...Katie- I read your comment and I had an emotional breakdown! Thank you for letting me know that my words helped you. I know this is how I felt/feel about other FPIES moms that have traveled this road before me as well. There is such a connection- that only the families can understand, a "language" of reactions that only those living through it day in and day out comprehand. How do we convey this to the medical community? I have to believe that they would help if they knew...if they knew the pain our little ones go through, if they knew the stress it puts on the family....<br />I like your statement...Our Little Ones are the hero's that carry more than most every could bear....and we have the honor of being their voice until theirs is heard....<br />Thank you...that helps inspire me when things get tough...Joyhttps://www.blogger.com/profile/05801049405099115795noreply@blogger.comtag:blogger.com,1999:blog-1947957832192035290.post-54323093625912411772010-09-13T14:32:32.143-05:002010-09-13T14:32:32.143-05:00I have welled up tears in my eyes as I read this. ...I have welled up tears in my eyes as I read this. I only most recently have been able to deal with the lack of support and have had the burren eased (past 5 mths). It only came after one year of going to appointments with different doctors trying to get someone to listen to me and unprofessional office staff and inappriopriate tests done and a host of other issues that I got the 'satisfication' from a allergist to tell me "I suspect FPIES"! Someone hearing my crys meant the world to me. Nothing has changed regarding my son...I imagine it won't for awhile. You go girl and I will join you in the awareness and the fight. I wouldn't wish my feelings of isolation to anyone with a infant/child with FPIES !!!Heatherhttp://www.facebook.com/heatherwelkernoreply@blogger.comtag:blogger.com,1999:blog-1947957832192035290.post-14634833646223568862010-09-12T19:22:28.516-05:002010-09-12T19:22:28.516-05:00Joy, I was half way thru this post before I had an...Joy, I was half way thru this post before I had an emotional breakdown. I'm so sorry that you also have to carry this responsibility...but please know that you have written what I am unable to put into words. Thank you for making me feel like someone understands. <br />Our LO's are the heroes that carry more than most ever could bear... and we have the honor of being their voice until theirs are heard...Katiehttp://community.babycenter.com/profile/katychkanoreply@blogger.com