Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Sunday, April 24, 2011

Raising Awareness

Our Brainerd Dispatch article has been published! We are going to be featured in the April Issue of Health Watch Magazine in the Brainerd Lakes Area! It is available online now. Click HERE to be directed to it and it is on pages 16 and 17! You'll have to click on it to enlarge it - it's pretty small.

Our writer and photographer did an amazing job. I was fine to begin with but as the days went by I got nervous about our story being told. Rest assured, I'm very happy with the way it all turned out. Kara looks like an extremely healthy toddler, I always say, it's her insides that are a mess. I'm sure many people that know us, haven't had a clue that our littlest has these health problems. I hope this article does what I wanted it to do - raise awareness - for us in the community, for the medical profession in the community and for future FPIES families struggling like we did originally - may they not have to have quite the struggle that we have had.

We have made great strides across the nation with FPIES awareness, all in less than a years time. I have definitely done my part, advocating Kara's life to my fullest potential, and still not feeling like I was doing enough. I've taken phone calls with new mom's who have sent me messages stating their child just vomited profusely after eating rice cereal, and upon googling, came across my blog. Many emails from Moms and have most recently started an FPIES Midwest Facebook Group - vent away Moms, we are all ears!  :)

While I was going through the posts trying to write our insurance appeal, I was reminded of where we were last July. Struggling is an understatement. I came across THIS blog post, a post that was written at one of my lowest times in our struggle. This was my final quote "I wish there was someone in this state, or even area that has had luck with a facility and dealing with FPIES because Kara, and others are struggling."  Looking back at this post, written on August 23rd, is huge for me, to realize how far we've come!

1 comment:

  1. Love it!! Good job, mama, and good job, big girl!!!

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