This morning, along with 7 other dedicated moms, I am proud to announce the launch of The FPIES Foundation.
When your child is diagnosed with FPIES, doctors don't have a packet of information to give you or a website to direct you to. It is difficult to find another family to turn to for support and advice. An FPIES diagnosis is isolating and scary, in large part due to the simple lack of information available about it. We hope to change this. We hope that no family struggles alone again, but can find one another, information and knowledgeable medical professionals using our resources. We hope to educate medical professionals so they, in turn, are able to help more families, identify FPIES earlier and avoid additional complications.
I am so proud of what we have accomplished. I am so proud that it aches in my chest... and this is just the beginning. There is so much in the works, so much more to come! It feels WONDERFUL to be doing something so proactive - especially as FPIES is such a reactive condition (feed something to your kid and wait to see what happens). We did this for Genevieve - and for Brendan, Sam, Samaya, Carter, Kara, Bridget and Ellie... and we did this for YOUR FPIES kiddo too. You are not alone!
Wednesday, August 31, 2011
Tuesday, August 16, 2011
Newsflash!
It's been a long time. Again. I used to be a prolific little blogger and now... time flies, days pass, and blogging falls lower and lower on my prioritized 'to do' list. Yes, I really do have one. I think all the time about my friend who is a mom of 7 and wonder at how she gets so much done every day and worry about the lack of accomplished items on my to do list. Wipe noses? Check. Wipe butts? Check. Feed little monkeys? Check check. Feed myself? Yeah.... soon :) Clean the house? Yeah.... soon-ish?
But we do have some updates. Wanna hear them? You're reading this, aren't you? So I'm guessing the answer is yes. If not, stop reading now. Okay, here come the updates....
1. Ginny's FPIES story was recently featured on WGN news. Really. Crazy, right? As you all know, we've RAVED about Wonder Woman and, via a friend of mine who works at the hospital with which Wonder Woman is affiliated, the hospital's PR department got wind of our story, pitched it to the news and... there we were, on the news. They interviewed me for well over 30 minutes and it was a little nerve wracking knowing that they'd be editing that down to about 2 minutes. In my usual style, I didn't remember to do much advance planning for this and was left wondering, the day before, just what we should wear and what they might ask me. John said they would surely ask about our first trip to the ER and that threw me. Of course they would ask that. Why wouldn't they? But I can't think about that, much less talk about it, without getting choked up. I went over and over it in my head, thinking of ways I might tell that story without getting all teary eyed. That didn't work. They asked, I got choked up and, to make it worse, followed my blubbering with nervous, crazy laughter. Oops. Overall though, I have to say that the crew that was here was lovely, Wonder Woman rocked (and, we found out afterward, was sick as a dog the day they interviewed her but she toughed it out for us!)and we feel like it will really help get the word out. Wonder Woman let me know that she was surprised and pleased by the number of colleagues and patients asking her about FPIES. Hooray! So... you wanna see it? If you watch it, you MUST promise not to make fun of me. Promise? Okay, here it is. Oh... and the Goob looks so cute :)
2. We have more food passes. Hooray! Genevieve has added raspberries, asparagus, grapes and raisins, plums and nectarines, potatoes, safflower oil and CORN to her safe food list. Yeah, I am a proud mama and watching that kiddo happily gnaw on an ear of corn really makes me smile. Thinking of her eating an ear of corn at the pumpkin patch this fall makes my heart soar! This makes our safe food list pretty big, but it's amazing where soy and rice (and oats)lurk, keeping us from so many packaged food - and still mostly anything from a restaurant. But.... every day is better. With the pass of eggs, we found another ice cream safe for G. She umm.... well, she loves it.
3. As big as our safe foods list is, we have some foods on there that no longer really figure in. Ginny refuses millet and quinoa. I wonder if she was so overloaded for so long that, in light of new options, she is just no longer interested. Funny, right?
4. Without a doubt, Genevieve's favorite meal would include salmon baked with a little bit of butter and lemon juice, grilled asparagus, blueberries and Haagen Dazs five chocolate ice cream for dessert. I am already planning to serve this to her for her birthday. Yes, her birthday isn't until November. Yes, I am giddy excited to have so many options for her this year vs. the banana, quinoa muffin she had last year.
5. Genevieve is doing incredibly well. She looks healthy. She smiles and laughs and follows her big sister around like a baby duckling. We live in a monkey see, monkey do world and the sound of my two girls laughing together, and having them get to share so many snacks, is an overwhelming, heart wrenching joy. We are so blessed that, despite our early fears, FPIES has touched our lives in (comparatively) a very mild way. There are others who are struggling. Just thinking of these kids, these families, makes me cry. Not to preach, but if you know anyone struggling with a chronic illness, don't forget to reach out. Pray. Make a meal. Babysit. Just listen. Support makes all the difference.
But we do have some updates. Wanna hear them? You're reading this, aren't you? So I'm guessing the answer is yes. If not, stop reading now. Okay, here come the updates....
1. Ginny's FPIES story was recently featured on WGN news. Really. Crazy, right? As you all know, we've RAVED about Wonder Woman and, via a friend of mine who works at the hospital with which Wonder Woman is affiliated, the hospital's PR department got wind of our story, pitched it to the news and... there we were, on the news. They interviewed me for well over 30 minutes and it was a little nerve wracking knowing that they'd be editing that down to about 2 minutes. In my usual style, I didn't remember to do much advance planning for this and was left wondering, the day before, just what we should wear and what they might ask me. John said they would surely ask about our first trip to the ER and that threw me. Of course they would ask that. Why wouldn't they? But I can't think about that, much less talk about it, without getting choked up. I went over and over it in my head, thinking of ways I might tell that story without getting all teary eyed. That didn't work. They asked, I got choked up and, to make it worse, followed my blubbering with nervous, crazy laughter. Oops. Overall though, I have to say that the crew that was here was lovely, Wonder Woman rocked (and, we found out afterward, was sick as a dog the day they interviewed her but she toughed it out for us!)and we feel like it will really help get the word out. Wonder Woman let me know that she was surprised and pleased by the number of colleagues and patients asking her about FPIES. Hooray! So... you wanna see it? If you watch it, you MUST promise not to make fun of me. Promise? Okay, here it is. Oh... and the Goob looks so cute :)
2. We have more food passes. Hooray! Genevieve has added raspberries, asparagus, grapes and raisins, plums and nectarines, potatoes, safflower oil and CORN to her safe food list. Yeah, I am a proud mama and watching that kiddo happily gnaw on an ear of corn really makes me smile. Thinking of her eating an ear of corn at the pumpkin patch this fall makes my heart soar! This makes our safe food list pretty big, but it's amazing where soy and rice (and oats)lurk, keeping us from so many packaged food - and still mostly anything from a restaurant. But.... every day is better. With the pass of eggs, we found another ice cream safe for G. She umm.... well, she loves it.
3. As big as our safe foods list is, we have some foods on there that no longer really figure in. Ginny refuses millet and quinoa. I wonder if she was so overloaded for so long that, in light of new options, she is just no longer interested. Funny, right?
4. Without a doubt, Genevieve's favorite meal would include salmon baked with a little bit of butter and lemon juice, grilled asparagus, blueberries and Haagen Dazs five chocolate ice cream for dessert. I am already planning to serve this to her for her birthday. Yes, her birthday isn't until November. Yes, I am giddy excited to have so many options for her this year vs. the banana, quinoa muffin she had last year.
5. Genevieve is doing incredibly well. She looks healthy. She smiles and laughs and follows her big sister around like a baby duckling. We live in a monkey see, monkey do world and the sound of my two girls laughing together, and having them get to share so many snacks, is an overwhelming, heart wrenching joy. We are so blessed that, despite our early fears, FPIES has touched our lives in (comparatively) a very mild way. There are others who are struggling. Just thinking of these kids, these families, makes me cry. Not to preach, but if you know anyone struggling with a chronic illness, don't forget to reach out. Pray. Make a meal. Babysit. Just listen. Support makes all the difference.
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