Tuesday, April 24, 2012

The Bravest Boy I Know.

See this sweet face?



Pretty adorable huh?

 He's my nephew. 
Of course he is adorable!
 I only associate with adorable. 

Looks like an extremely healthy little boy, right??


Like a beast! :)
 Right??!?

Would you believe that Matthew has a rare disease called FPIES (Food Protein-Induced Enterocolitis Syndrome)? It's a very rare disorder, in which Matthew's cells in his digestive tract reject certain proteins in most foods. 

Would you believe that for Matthew's first Birthday, he didn't get to eat a Birthday cake?? Instead he got something even more awesome. . .coconut sorbet.
 He loved it. It had a candle and EVERYTHING. 
Why sorbet and not cake?? 
Many of the ingredients in the cake would make Matthew very sick. That yummy coconut sorbet would also make him VERY sick later,  just like many other foods that sweet boy has put in his  sweet chunky belly.  So sick that when he has a reaction he has to go to the ER immediately.


The frustrating thing is that not many pediatricians in the U.S. even know what FPIES is. Some people are driving hours and hours to just find answers as to why their little ones keep throwing up when they are eating rice cereal, oatmeal, and even soy products. Obviously parents turn to the word allergy, but apparently finding an allergist that knows what FPIES is also very difficult. 

How does he look so healthy, you ask?? 



Well I've mentioned before how blessed I am to have married into such a wonderful family, and Amanda is nothing short of that. . .WONDERFUL.
 I am so blessed to have her in my life.


Amanda is keeping Matthew a thriving little boy because of her breast milk. That's right, her milk is one of his only "safe" foods that keeps him such a happy healthy baby. His other safe foods are pears, potatoes, carrots, broccoli, spinach, avocado and corn. Amanda has to be very careful of what she eats so as to not to cause a reaction through her milk. 

Amanda sacrifices some of her favorite foods to keep her little man safe.  She spends her day reading food labels, calling restaurants and companies getting clarification on ingredients in foods.  She spends hours going to doctors, allergists, nutritionists, and geneticists. Matthew not only has FPIES, but something else is going on in his little body that no one has been able to put a finger on exactly. They are getting closer though. THANK GOD. 

Amanda  is Super Mom. 


  Amanda's website is  HERE. She is an incredible resource and FPIES advocate so feel free to contact her with any questions. She is so awesome that she has put together a food SURVEY to help those with FPIES find what foods seem to be "safer" to trial. It is such a great resource that pediatricians are  actually using it to direct FPIES parents to. . .

Did I mention she is Super Mom?


Some other great support sites are:
FPIES Foundation - A website started by FPIES parents less than a year a go to get the word out.

FPIES Group Page on Facebook

FPIES Group on Baby Center




Matthew also has an AWESOME big sister, Abby,  that is a great help to her Mommy & Daddy. As much as she loves to share she knows that she can't with Matthew. She has to make sure to be very careful to not spill or drop any of her food in case Matthew happened to pick it up and eat it. She's only 2 going on 15 and she's AMAZING at watching out for her little brother.


They are BOTH such a light in our lives.


If  for some reason you think someone you know may have a severe food allergies, please feel free to contact me by clicking the link at the top of this page or go to Amanda's website and click on the CONTACT button there. Again, FPIES can be a hard diagnosis to make since so few people even know what it is. Lets help get the word out.  



We hope you are having a great week. We made it through MONDAY!
Lots of Love,
The Boffs




4 comments:

  1. Hey, you redesigned your blog! I love the font, and the sides are so pretty...it looks terrific :)

    You make me sound WAY better here than I am...there's no way we could do this w/o all the wonderful family support we get. This post just shows how amazing our family really is, you are the shining example ;)

    Love you bunches, and thanks for being such a wonderful aunt to both Matthew and Abby!

    Love,
    Amanda

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  2. Great post! Precious kids. :)

    p.s. I love the new look. so pretty and spring-y. (ha, I know that's not a word but oh well.)

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  3. This is so sweet! What a great family. I hate that he has this, but you are right, we should spread the word! I'll repost it soon for sure, too!

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