Friday, November 13, 2015

Corban's Story

I decided to begin this blog at the beginning.
This is my brave little man Corban.
I wanted to share Corban's story because over the past 5 months I have laughed, cried and been encouraged by other families willing to share their children's story about life with FPIES (Food Protein Induced Enterocolitis Syndrome). FPIES is a non- IgE mediated allergy that does not have the typical adverse reactions kids experience such as hives, breathing difficulty, etc. It is basically their GI tract rejecting food so you cannot tell until hours later if they are allergic to what they have eaten (in the acute form~vomiting, lethargy, shock) and days later (in the chronic form~Bloody diapers, mucous stools, diarrhea or Ileus's). They have overactive T cells that attack everything their body ingests.
And lets be honest - it is NO.FUN. (understatement of the century)
Corban was born full term at a healthy 7 lbs 10 oz. He was perfect and happy and gained weight at a rate that could make an NFL player proud.
At 7 weeks I started supplementing with Enfamil. He started vomiting much more often but that's normal doctors said so we decided to try some different hypo allergenic versions. He continued to vomit, so we were given some reflux medication and sent on our way. He was still gaining weight so his pediatrician wasn't too concerned.
At 4 months old, Me and Dave decided that maybe we could simply feed him rice cereal with his milk and then we wouldn't have to supplement.
Around this time, we also began the other typical first foods such as banana's, peas, etc. He became even fussier, started experiencing horrible smelling diapers (with blood), and continued vomiting.
We gave up on his pediatrician's help at this point and decided by day 3 of the horrible diapers to take him to the pediatric urgent care by our house. During the 1st visit, his x-ray showed signifigant distension and colitis but they were certain it was a bug he picked up.

Two days later he was vomiting across the room and I knew in my heart this could no longer just be a virus. They did another x-ray at urgent care and this time the doctor rushed in to let me know they wanted him taken by ambulance to Children's Mercy Hospital. His x-ray showed an ileus (a bowel obstruction) that would possibly need surgery. (Side note - I'm not really that fancy pants to know what an Ileus is, but quickly learned some new medical terms I'd never heard of before this).

That was hospital stay number 1, but doctor's still were not able to tell us what had caused the ileus (besides this supposed virus he'd picked up).
So, 3 days later we were headed home with the instructions to try eating again after 10 days.
So we did....

Corban seemed fine afterwards, so I laid him down for his nap about an hour after he had eaten. Exactly one hour after that I heard him screaming at the top of his lungs. I ran upstairs and picked him up at which point he vomited halfway across his room. By the time I made it downstairs he had vomited what seemed every last drop of water in him until he was completely limp and blue in my arms.
It was horrible, and awful, and scary and sad and I thought I may lose him.
At this point, it was actually a nurse I spoke with on my way to the hospital who suspected him of having FPIES. We could never possibly thank her for her diagnosis because so many families go months, and sometimes years without a diagnosis and our son was diagnosed at 5 months old.
He is still such a happy, loving little boy in spite of all he has been through in his little life time. At this point, I have my life (and his) to thank for the girls who are donating their milk for him as that is all he can eat at this point.
We love you Aunt Angela & Cassondra!!

We are triple teaming this and I cannot ever repay them for this amazing gift~ Serioulsy I couldn't, you guys are amazinnnnngggg!!!
We just got back from hospital stay number 2 unfortunately - This time it was brought on by Apples & Avacado's.

I just love the fact that he still smiles though. I do not know what he will be able to eat. It is frightening and maddening and incredibly sad, but I will not forget what Clara told me nearly half a year ago during those late night hours in the ER.
 "Mommy, don't forget, God gave us Corban for a reason."
And she was right, as much as I would love to take this from him, or fix him, or honestly just do anything that could help him, I have to remember there is a reason God entrusted him and his disease to us. It is hard, but it is possible to find joy if I choose to and I pray it teaches me a perseverance and endurance that lasts and can trust God in anything. It is testing me to my limits, but tests can be a good thing.
And as for this little guy -
well he is stronger than I'll ever be.

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