Monday, November 30, 2015

Hi-Ho, Hi-Ho It's Off To Mayo We Go...

Well...The time has come...
We are headed toward warm weather and sunny tropical beaches
Wait...colder freezing weather and not a palm tree in sight???
Bummer bears.
I guess we'll just have to convince our little reindeer to fly us up there before Santa needs him in a few weeks!!
So, we have been waiting for this appt for so long and while I am so sad because I know the litany of tests he will have to go through, I am trying to remain so hopeful that we can figure out what is going on with our sweet boy.
The two trials have been brought to a halt simply because while Neocate seems to be safe for him but we can't get him to drink it. We've tried EVERYTHING...sooo if anyone has any advice about that please email me at However, it smells like freezer burnt ice cream and old cough syrup so I can't really blame him.....
We also started our trial of grass fed, cage free turkeys and while it appeared we may actually have a safe food each passing day he is getting fussier and last night I'm pretty sure he cried more than he slept so I am anxious to see what his scans show tomorrow.
I had this really odd moment that I'm sure FPIES parents can sympathize with...he started eating a straw wrapper yesterday and I realized in that moment it is weird but it is actually safer for him to eat straw wrappers than food....and since he was kindof enjoying himself I just let him chew on it because I'm pretty certain their are no food proteins in paper....If only they were nutritious!

Tuesday, November 24, 2015


Well, the time has come -
Even the "dream team" (Angela, Cassondra & Me) are not going to be able to keep up with this little guy.
(Who has been getting more mischievous lately lol).
He is at 40+ oz of milk a day and Nessie & Bessie (my girls) are not even close to keeping up anymore.
Me and his new pediatrician are devising a plan. We are going to try the GAPS diet and supplement with a prescription formula called Neocate. If there is any hope for him to eat, this will be it. For all you FPIES families, you can find more information here:
The GAPS plan was actually developed by a neurologist seeking to help all the children she was seeing with autism, ADHD, etc. However, more and more FPIES families appear to be having success with the diet so I would like to "join that bandwagon." (Which I by the way have no idea where that phrase came from or what it really means lol?)
Neocate is a type of prescription formula that breaks the proteins in regular formula down into 100% amino acids which are the building blocks of protein making them easy to digest. They have some fun pictures if you'd like to see more about it on a cellular level but I'm still trying to process what amino acids are and recalling 10th grade biology so I'll just leave it to you guys if you want to do more research. ;)
We are heading up to Mayo Clinic in one week so we've figured if this plan goes south on us at least we will be in a safe and wonderful place that can hopefully help us find more answers for our sweet little boy!
And for now I will keep you posted if either of these turn out to be successful for us!!
(ALSO - If anyone out there, anywhere in this blogosphere has heard of our story from friends and would like to donate milk, I could never thank you enough...I currently have enough to last us through about the end of January).

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.