The Good, The Bad & The....

 

CUTE!

 

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 all.day.long....Why 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 forward...you 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."

 

See.

 

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).

 

Happy.Medium.People.

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 statement...it 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)! ;)



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!?!"



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

 

Oh.nope.

 

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!!

 

(hehe)

 

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 amberguderian@hotmail.com. 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!

 



GAPS & NEOCATE

 

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:

 

GAPS

 

NEOCATE

 

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).

 



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.