Wednesday, December 23, 2015

Just A Spoonful of Sugar...

....makes Corbo's tummy feel sad.
(Sorry, we just watched Mary Poppins last night)
So....he's going on strike lol
We returned from Mayo with probably what you could only describe as more questions than answers unfortunately...he has a fatty liver, was anemic from only breast milk, and has inflammatory GI responses from all food...but still not many answers as to why....
But then, Corban's doctor called after Corban's genetic testing came back last week.
They believe he was born without a gene that processes sugar correctly (along with FPIES). Congenital Sucrase-Isomaltase deficiency (CSID) for all those smarty smarty pants out there. ;) They have to do more testing in February to confirm this but it's a wise assumption according to his doctor who is the smartest (and sweetest little man in a bow tie you will ever meet). :)
(Dr. El-Youssef)
CSID and FPIES are not the funnest pair unfortunately-not really a pair like peanut butter and jelly but they came as a pair none-the-less for Corban so now we have a better starting point.
The part that hurts my heart is the fact that he failed his Neocate formula which meant he didn't simply have a food protein intolerance. (Because for those who may not have read my previous post it is broken down into amino acids so there are no food proteins present).
But Jesus did something incredible at just the perfect moment...
Just as I was running low on milk,
and my sister,
and Cassondra,
A friend from high school which I hadn't seen in 12 years called me the last night we were in Minnesota!?
She lived a couple miles from the hospital and heard through the grapevine I was there and do you know what she had...
300 + oz of milk for my little man!! (PLUS more to give when I needed it)
(Sooo that's her from a google search I found of her shaking a random man's hand 10 years ago because I haven't seen her in so long ) - Sorry Becky!!! :(
It was such a miracle you guys - and while Becky provided the milk I knew Jesus was behind that  All.The.Way. I can't explain it, but I knew in my heart as we were going from doctor to doctor we weren't going to get any easy answers, and it was looking further and further from there being any chance he was going to be able to eat food right now...

but in tears in that hotel room, with not much milk God showed up..

in a BIG way.

It was just the encouragement me and Dave needed after a week of difficult and  discouraging tests.
So, to conclude -
as hard as it is to answer questions about Corban's health, God clearly wanted to remind us He is walking with us step by step. (I know that in my heart but it's just nice to have "real-time" reminders from time to time) :):)

(I'm also praying He pours heapfulls of blessings on every girl who is so selflessly helping keep my little man chugging along-chugging heftily along I might add lol!!)

And, speaking of difficult questions, Clara presented us with quite the difficult question last week...
After being near the last to see santa, and him explaining to Clara his reindeer were waiting for him on the roof; we were doing some shopping when out of the corner of her eye she saw santa in the parking lot...
Climbing into his TRUCK.
So, before we know it Clara is desperately trying to get our attention from across the store nearly crying in confusion..
"Mom & Dad...why is santa driving a truck!?!"

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