Thursday, January 28, 2016

The Good, The Bad & The....

Because let's face it...there is no Big U(Ugly) here...Unless Corbo is getting his diaper changed...that can get a little rough!! He would wear those saggy bottoms however, I have no idea because I wouldn't like a wet diaper! :)
So, back to my original thoughts...I have handled his condition in two separate ways since he was a baby and for the first time this morning I realized there was a third way...a more honest way...and it would work BEST. So that my friends is how we are marching forward!
(Or Partying could really look at it a couple ways)!
For a while I pretended everything was literally, absolutely fine (Sorry I like adverbs). People would ask how he was doing and I would respond, "Great!" "Wonderful!" "He has a sore tummy but we're alllllll good!" And then reality would set in and I would go to make him lunch and remember...there was nothing in my cupboards I could feed him. Rice cereal & Banana's sent him to the hospital barely escaping surgery and his second eating experience sent him into shock and we nearly lost him. So food can kill him....quite literally. I would try to believe people when they would say..."its just a little spit up" but hear his doctor say, "Amber, his throat looks like a war zone. He is not an average baby and this is not reflux. His body literally is trying to show you that he can't eat when that happens. Please remember that."
I'm pretty sure our moments at Children's Mercy and comments from those doctor's led me into phase two which was....I am most certainly going to lose him AT.ANY.MOMENT.
In this phase me and Dave stopped all food trials for 3 months...(which was recommended by his doctor's but a herd of elephants couldn't have gotten me to feed him back then even if it wasn't). If he so much as burped, I ran him to urgent care just to make sure he was going to be okay. I also didn't really take him anywhere. If I could have built a baby bubble without legal ramifications, I would have built one and put him in it. ;) And while we were over the top protective, we did notice something amazing happen. He had vomited/spit-up since he was seven weeks old when I tried supplementing him one afternoon with Enfamil. However, over those 3 months from August - October his whole system healed and we didn't even see one speck of anything. We saw that Corban and his momma's milk was a beautiful thing and he even started napping!! So we knew....when he's feeling well everything stays where it should and makes it through in the perfect amount of time. Those months were heaven. :) (While we were a terrified mess).
But now...
now we work to find a happy medium.
We have high days, low days and everything in-between.
(This would be a high day because you know when you can create this masterpiece you must be feeling okay). ;)
So, me and Dave have been navigating somewhere in between trying to find a balance. We have trialed about 25 foods so far and all but one have been a fail (more to come on that). He does spit up...more often than not...and sometimes he vomits. ALOT. Sometimes the other side of things stops moving but with every food trial we learn more about this disease. We don't take him to the doctor every day or run him to urgent care at the first spit up....I mean we see enough doctor's the way it is but we have a better handle I believe now. In Omaha, we have Dr. "T" from Jenilee ;) And Dr. Shakir...straight from heaven I believe.
 And while we are still over-protective, I realized we don't have to live in either reality we used to...we can be both positive and honest.
Someone: "How was your day Amber (or Dave?)"
Either of us: "Well, Corban napped well and Clara and him had fun chasing one another but he did spit up 2 times so we just have to keep an eye open in case it gets worse."
Easy Peasy. :)
We can express that our days are still filled with both good and bad things (as any normal person's is) because that is life and we don't have to pretend we're peachy king. But I don't believe God would want us covered in ashes that read "I Hate FPIES" in the middle of the street in downtown Omaha either.
(I may or may not have considered that from time to time).
That is what we're striving for!!
So, there I am feeding him outside our home (at Chic-Fil-A of couse) because let's not get too crazy...I tried at my second home. And guess what. He PASSED! Corban can eat sweet potato's. There's no spit up, no vomit, no stoppage, no extra and he sleeps!! (I did randomly feed him a different brand in the store one day when he got fussy and that was a massive fail - lesson learned)! So, for his bday Corban is requesting Happy Baby Sweet Potato's ;) ...All joking aside you are looking at his bday cake! :)
I seriously love feeding him now - I didn't realize you could take feeding a baby for granite but momma's of kids with food allergies will cheer for this is MASSIVELY exciting to be able to feed your baby on a spoon...REAL food.
So for The Good, The Bad & The Cute...
The Good...
Corban can EAT one REAL food.
The Bad
There are about 5,000 things we still have to trial...And Mayo's diagnosis of CSID (The sugar gene deficiency) doesn't really fit with him passing sweet potato's so he is having a lot of procedure's this upcoming Monday. We had to wait to do these until he turned One so we're desperately hoping we get more answers.
The Cute
My sweet sugar sleeping soundly AFTER eating food - this was something I didn't imagine could happen 8 months ago!!
*And as a side note...his sister is also doing well lol. (She has recently been re-enacting the phantom of the opera).
JK - We were at the Omaha Children's Museum with some friends...if you are visiting the area you DEFINITELY need to visit. We all decided this was our favorite children's museum ever!!!! (Thank you Mrs. Bennett)! ;)

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