Thursday, August 20, 2015

FPIES Don't bother me.....FPIES Don't Bother me!

(Just as an FYI, that title is to the tune of "Shoo Fly" ;) )
 
 
So how was everyone's week????
 
 
If you didn't...
 
Load up the family SUV,
 
Pack it full of one moderately recovered bulldog,
 
 
 
Three tortoises
 
One 6 month old
 
 
 one 5 year old who thinks she's 16,
 
and
a chiapoo who has anxiety issues
 
 
and then drive 200 miles to pick up your sister's breastmilk...

 
than I have you beat. ;)
 
And if you're imagining a chiapoo sliding all around the tortoise tank in the back of the car while lunch box anxiously paced waiting for the lid to pop off so he could eat one, while my little man was crying because he isn't a fan of driving to NE, while Clara sang, "Please stop crying Corban!" over and over at the top of her lungs with her hands over her ears than you are imagining it correctly! ;)
 
But that's okay...We are all alive so I'll consider this trip a success!
 
However, I will back up a few steps so I can tell you why on earth me and my family were making this journey.
 
Do you remember how I mentioned that my little man is allergic to everything. :*(
 
Well, two weeks ago it went from bad to worse and he had an allergic reaction that caused him to go into shock temporarily. It was so scary, I can't even begin to describe the feeling you guys, but the silver lining was that the doctors were finally able to reach a definitive diagnosis.
 
Our little man has a condition called FPIES.
 
 
 
FPIES is very rare condition where Corban's body has a non IgE mediated immune reaction to the proteins in certain foods and unfortunately for our little guy we haven't found one food he can tolerate yet by mouth.
 
HOWEVER,
if there is any good news about this, it is that he can tolerate breastmilk, and so that has been and will continue to be his source of sustenance for the unforeseeable future until we can find a food his body does like.
 
That's where the beautiful part of the story continues...
 
since my body produces this much extra milk at a time (which could probably sustain maybe a premature mouse baby)...
 
 
 
my sister offered us the most amazing gift she could ever have given us...
 
Her milk!!!!
 
(A very excited family selfie with the exclusion of the Michelin man who apparently just wanted the milk and not to celebrate lol)
 
Because ironically, she just had this adorable little guy a few months after Corban was born as I mentioned a few posts ago...
 
I sense trouble ;)
 
Thank you, thank you thank you thank you Aunt Angela!!
 
So that is what the reasoning behind our trip...
 
But, The reason for my caravan carrying a petting zoo simply will have to wait for another post because this momma bear is a teensey bit exhausted...
 
I'll will however leave you with a few pics from the trip because I'm sure you were all anxiously waiting to see those... ;)
 
The above ground pool my mom and grandpa Jim installed for Clara before we arrived lol
 
Lunchy enjoying his new hamburger which I am happy to report he has not actually eaten yet
 
Party at Culver's!


Clara playing with her "namesake" Claire & sister Isla - And Burger King is always a great place to test out that ole' immune system ;)

 
 My amazing grandma with Corbo beans and Clara bear

 
 And lastly, Me celebrating after a successful lunch for Corban; courtesy of Aunt Angela!!!!
 
Thank you again sister bear - this little man literally owes you his life!!!
 
 


1 comment:

Carrie said...

We are on the other side of our FPIES journey. Audrey is 4 and she had her first reaction with her first food- oatmeal. Projectile vomiting 2 hrs after eating and went limp in my arms. At age 4 1/2 if she eats something that has oats she now just gets stomach cramps and sometimes diarrhea. She reacted to a few foods when she was under age 1 and then just the oats. She also had a swallowing disorder and very severe reflux. Our pediatrician told us it was not FPIES even though her symptoms were classic. They instead focused on her poor weight gain and told me to feed her more solids vs breast milk. I ignored that advice. We got to a great GI and I did not even mention FPIES for a year because we were figuring out other things. When I did, the nurse practitioner said that based on the records that they were already given they made the diagnosis when we first started seeing them. So we are still avoiding oats but it has gotten better. Breast milk saved us, she was breast fed until close to age 2. You are so lucky to have the diagnosis early.

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