Water on Our Wood

Lately, we've kind of had a string of not-so-great news. To be honest, I started feeling a little defeated as Todd and I spoke about the results of Cohen's biopsies from his lung bronchoscopy. And then somewhere in our conversation my wonderful husband reminded me of an amazing and frequently overlooked Bible story.

His words fell over me like a blanket of comfort, lifting my spirits and changing my perspective.

Todd said, "Remember the prophet Elijah? This is just more water on our wood, honey. Let them soak it so all the world will see just how remarkable our God is when he lights our fire; leaving no doubt as to who is responsible for our miracle."

Later in the day Cohen started running a fever. Because he has a central line he must be admitted and treated for a possible line infection. And now we must sit in the hospital for three days, waiting to see if his cultures grow bacteria... just more water on our wood. 

The prophet Elijah had a BIG job to do and he did it in a BIG way. He devotedly demonstrated the amazing faithfulness of our God, and so will we.

So go ahead and soak our wood 

if it will allow God's 

blazing fire to be undeniably recognized by all!!

1 Kings 18:20-39

20 So Ahab sent word throughout all Israel and assembled the prophets on Mount Carmel. 21 Elijah went before the people and said, “How long will you waver between two opinions? If the Lord is God, follow him; but if Baal is God, follow him.”

But the people said nothing.

22 Then Elijah said to them, “I am the only one of the Lord’s prophets left, but Baal has four hundred and fifty prophets. 23 Get two bulls for us. Let Baal’s prophets choose one for themselves, and let them cut it into pieces and put it on the wood but not set fire to it. I will prepare the other bull and put it on the wood but not set fire to it. 24 Then you call on the name of your god, and I will call on the name of the Lord. The god who answers by fire—he is God.” Then they called on the name of Baal from morning till noon. “Baal, answer us!” they shouted. But there was no response; no one answered. And they danced around the altar they had made.

27 At noon Elijah began to taunt them. “Shout louder!” he said. “Surely he is a god! Perhaps he is deep in thought, or busy, or traveling. Maybe he is sleeping and must be awakened.” 28 So they shouted louder and slashed themselves with swords and spears, as was their custom, until their blood flowed. 29 Midday passed, and they continued their frantic prophesying until the time for the evening sacrifice. But there was no response, no one answered, no one paid attention.

30 Then Elijah said to all the people, “Come here to me.” They came to him, and he repaired the altar of the Lord, which had been torn down. 31 Elijah took twelve stones, one for each of the tribes descended from Jacob, to whom the word of the Lord had come, saying, “Your name shall be Israel.” 32 With the stones he built an altar in the name of the Lord, and he dug a trench around it large enough to hold two seahs[a] of seed. 33 He arranged the wood, cut the bull into pieces and laid it on the wood. Then he said to them, “Fill four large jars with water and pour it on the offering and on the wood.”

34 “Do it again,” he said, and they did it again.

“Do it a third time,” he ordered, and they did it the third time. 35 The water ran down around the altar and even filled the trench.

36 At the time of sacrifice, the prophet Elijah stepped forward and prayed:

“Lord, the God of Abraham, Isaac and Israel, let it be known today that you are God in Israel and that I am your servant and have done all these things at your command. 37 Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”

38 Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.

39 When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”                                                    

The Storm: A day in our hospital life

We already had a busy day planned when suddenly a great commotion over Cohen's PICC line and whether it was causing swelling in his arm created a major storm. I had an arm list of places I was expected to be and somehow the more the day went on the longer the list grew. 

Here is a glimpse:
7:30- Pre-Round evaluation

7:45- Mad dash to the cafeteria to purchase the biggest most caffeinated coffee I could find.

8:20- Pulmonologist arrives to Cohen's room to evaluate and take history. She was the first to comment on Cohen's arm. She also ordered x-rays and blood work.

9;30- Head to the Ronald McDonald House to pick up my two oldest girls to take them to their appointments.

9:50- Arrive back at hospital for the appointments.

11:15- Head to the playroom where the lovely Child Life Specialists have taken our super hero for a little play time.

11:30: Back up to our room where our nurse checked out his arm and requested an evaluation from the VAT team (the IV experts).

11:40- Fortunately, Rounds (the hallway gathering of  the medical team where we determine the plan of care for the day) were running behind, so I made it back just in time to participate. I was upset when I thought I would miss it because of the girls appointment. Because of Cohen's history it is so important for me to be there when they decide his plan. A very sweet Child Life Specialist hung out in the room with Cohen and the girls so I could actually hear the plan...lol

11:50- VAT team arrives, measures and evaluates his arm. She was concerned and made the decision to order an ultrasound to determine if the PICC line needed to be pulled and replaced.

12;30- Headed down stairs to get the girls over to their grandmother so that I could get Cohen to
x-ray. Our wonderful nurse went with us so that she could sit with Cohen while I rushed the girls over to the RMH where mamaw was waiting at the side door.

12:45- Wait for x-rays and remember that I was suppose to be in my home health evaluation at 1:00, once again my wonderful nurse stepped in and volunteered to notify her and reschedule it for later in the day.

1:20- Back up to the room when our sweet friend Amy (front desk coordinator for our floor) informed me that several home health people have been calling trying to reach me and that one was suppose to be here at 1:30. That makes 3 different home health people that had been trying to meet with me. Then, Amy sweetly asked me if I had eaten yet today.... hmmm that thought had not yet had a chance to enter my mind. Nor was ordering food a possibility since I apparently had a guest coming to train me on our home pump.

1:30- I was informed that Cohen's ultrasound would be at 2:30 and that a home health nurse would be here at 4:30 for my TPN training.

1:40- A very special girl visited us with a gift that finally broke me to tears, giving me a little Sunshine through the storm.

1:50- My pump training begins

2:20- Cohen falls asleep... of course, just in time to be woken up again.

2:50- Ultrasound transport arrives. Cohen was rudely awoken with a glucose prick test on his finger and then swept away to ultrasound... my sweet boy just rolled with punches.


4:15- We headed back upstairs. Amy asked again about the status of my food intake, which sadly still had not occurred... however the major headache had arrived.

4:30- Our home health nurse arrived but kept getting important phone calls so our training was became more and more delayed.

5:00- She finally looked at me and said, "You have had a long hard day and you look exhausted, let's just do this tomorrow." I think in that moment I heard angels singing.

5:30- Ordered food!

6:30- Finally, for the first time all day put food in my mouth!!!

7:00- Settled Cohen in with a movie so I could run over to the RMH to give the girls their nightly medicine and give some good night kisses.

8:00- Back to the hospital to give my little superhero his bath and nightly cuddles.

10:00- Finally got him to sleep and yep....you guest it, I CRASHED!

Sunshine Through the Storm

Yesterday, in the midst of our crazy day our front desk friend Amy appeared at my door. When I opened it she introduced me to a beautiful young lady named Zoe,

Zoe told me that she had spent a lot of time in this hospital on her journey to heal and now she wanted to bring a little joy to someone else in the midst of their own journey.


She handed me a sweet little giraffe for Cohen and then to my surprise an amazing  gift of $100. I could see the love in her eyes and the joy she had from being on the "WELL" side of the hospital door. Finally, the emotion of the week caught up with me in the gesture of one incredibly sweet girl.  I couldn't fight back the tears any more. She was just the sunshine I needed in the middle of our little storm.

It is so humbling to be on the receiving end of such an incredibly generous gift.

I will be forever grateful to you sweet Zoe and the gift of joy that you gave me when the weight of the day was at it's peek.

The House that Love Built: The Ronald McDonald House

This  House is a blessing to so many families every single day, I don't know how we could do this without them. Most of us go through our lives never expecting to depend on others in such a way and then suddenly without notice our lives halt and we find ourselves on the receiving side of giving.

I pray that one day soon our family will switch sides and become a giver once again, however the next time around we will have a much different perspective.

Our journey has taught me an invaluable lesson; giving in any form is an immeasurable gift to those that need it most, while receiving is extremely humbling and will forever change you for the good.

Thank you to the Ronald McDonald House and to everyone that gives of their time or money to make this a home to families like ours. 
You can help make this house a home.

Ronald McDonald House News Letter

This Little Light

On the corner of a busy street sits a big house full of people seeking a lot more than just shelter. In the middle of that house there is a beautiful light. And although most never notice it in the midst of the grand fixtures of the beautiful atrium, it's there, hidden behind the glass of a high window.

I can't help but feel nervous every time my eyes wonder in that direction, praying that it's illumination is muted with darkness. Ironic, since typically it is our desire for lamps to provide light, however not this one, for the silence of it's darkness means hope. I often avoid looking for fear of what I might see and then one day it happened... 



The light in all it's splendor was aglow peering from behind the glass of the highest window. My heart sank and began to ache for the recipient of it's illumination, for because a light left this world this light now shines.

This beautiful fixture stays lit for 24 hours whenever a child of this "home" returns to their eternal home. 

You can't live here without knowing and falling in love with other families. We become each others biggest fans and cheerleaders, supporting each other in ways others can't. So when that light shines for one, it breaks the hearts of all.

The truth is I can't help but feel connected to this light in a very special way, for if it had been standing here many years ago.... then it would have been lit for my sweet little sister. It was just before this house of hope was built that she went to her eternal home, in the very same hospital that I now seek help for my little ones.  

I have often visualized this little light 
specially lit in her honor, in celebration of the beautiful light that she was to  those that loved her, just as it has been for so many other children of this home. 

Fight or Flight

Imagine a room full of smiling strangers all making over you and playing games and then suddenly holding you down against your will. Now, imagine that you're only two years old and through your tear soaked eyes you see the one person in the world that you love the most and cry out to them for help... only to have them aid in your immobilization. Out of desperation to break free from the pain that they are inflicting, your fight or flight kicks in but since these strangers have eliminated your ability for flight.... you fight with all of you have.

How do you convince a two year old to lie still while a well meaning medical team painfully inserts a tube past his stomach into his intestines? How do you convince him that he needs this to stay alive and that your not trying to hurt him but desperately trying to help him?

The answer is you don't, honestly, I don't even know if I fully understand it. How did we get to the point where it is necessary to inflict pain in order to help him? These things that Cohen must endure are for his well being and that is an emotionally difficult place to be as a parent. 

This month has been exhausting to say the least. My little ones have had more than their fair share of pricks, pokes, and personal invasions but they have come through them all with sweet smiles and brave hearts... I am so proud to be their mama! 

People ask me all of the time, "How are you so strong?" but the truth is I get my strength from these little ones. I am only as strong as they need me to be at that moment. Don't get me wrong I'm not exempt from stress and fatigue, I just don't have time to give into them.

During an interview today, for an upcoming Ronald McDonald House newsletter, I was asked to recount our experience here. It was the first time that I had stopped to really take in what we had been going through. Together we have endured four surgeries, inpatient stays with three different children, an MRI under anesthesia, testing that lasted over three hours, accidental tube coming out, one trip to the ER and countless appointments.

When your in the midst of a battle you don't stop to reflect on what is happening around you, you just fight through each trial with every bit of your strength. 

My greatest lesson from all of this is that we must seize every opportunity to replace our brokenness with joy every day.

My perspective of life has dramatically changed over the course of the last two years, giving me a new appreciation

for each day spent with those I love. I have been humbled countless times by the generosity of others and have seen just how much good really exists in the world.

Although, this year the Christmas season has looked a little different for us... I know we will appreciate it more than ever! 

Flight Night

After four days in our local hospital my hopes of remaining close to home faded quickly.  As I found myself face to face with two gentleman dressed head to toe in flight gear and standing in our hospital doorway, my mind began to replay the events of the day.  I was desperately trying to remember how we came to be at this point.

First, let me say I have come to love our "small town" hospital and pediatrician's office, they've earned the right to be called our front line defense for Cohen.  They know us and they know what to do when he is having a reaction.  We have developed a relationship with these wonderful people and they are part of our "Team".

So for us to be able to stay close to home for this battle was a blessing for me to say the least.  But with the passing of each day I was warned of the impending transfer to our "Big" hospital.  After a few days I thought we had possibly dodged the proverbial bullet but then it happened...

Cohen wasn't getting better and one of our very trusted "team doctors" made the decision that it was time to get him to Cincinnati.  I felt like someone had kicked me in the stomach... our other kids were here at home, Todd was here, friends and family that could help us.... they were all here.  But everyone agreed that this was the best plan for Cohen.

As his doctor began to make the arrangements for the transfer he periodically come in to update me on what was happening.  At one point I was told that they were trying to determine whether Cohen would be going by helicopter or plane.  I was informed that if he went by helicopter I would not be allowed to fly with him.

The idea that I would be at best a 6 hour drive behind him was frightening for several reasons. Besides the obvious of having a sick child whisked away from you, there was much concern about Cohen's severe allergies. On several occasions at our "Big" hospital  I intervened, preventing several mistakes that would have made him extremely ill.  Who would advocate for him if he was flown there alone?

I did they only thing I knew to do... I got on my knees and began to pray... I asked my friends and family to pray... and I sent out a Facebook call to prayer.  I was desperate and scared for my little guy.

I spent the passing time holding and comforting my sweet baby boy and praying.

The news finally came, they would take him by plane and I WOULD be able to go with him (Praise The Lord), however I would only be able to bring a very small bag with me.... seriously, I would go with only my toothbrush in my pocket if it meant being able to stay with him!!!

Now, in my doorway stood our transfer team who quickly introduced themselves and informed me; "That my child was now under the care of Cincinnati Children's Hospital and that they would do everything they could to keep him safe and comfortable during the transfer process."  My head was still spinning from the events taking place and I could tell from the look in Cohen's little eyes he was feeling the same.  

I placed him on their gurney (which must have cost more than most people's vehicles) where he was surrounded by computerized equipment and emergency gear.  He looked so small lying there.

We began to make our way down the hall and I could hear the whispers of onlookers making their speculations as to what was happening to my little guy.  His sweet nurse (now friend and "Team Member") came out to hug me and give me her love, leaving these people that I have come to trust so dearly was hard and added to the emotions building inside of me.  

On the ride to the airport I sat quit and unable to speak (something very uncommon for me).  I have watched movies where the scene shifts to slow motion and the events of the moment seem to drag on... and now I found myself living in one of those moments.  Todd tried to arrange to meet us at the airport but we were already to far in our route for him to get there in time.  I am certain that seeing him would have probably released all of the emotions I was so desperately trying to hold back.

It was pitch black when our ambulance pulled onto the runway where "our" plane was waiting for us. I had been here many times but I had never seen it look this desolate and lonely. I quickly became aware of the fact that the only people at this airport where here for the sole purpose of taking care of my son.  I quickly dismissed the thought for fear of becoming overwhelmed with emotions.

Two pilots and another transfer member were standing by the nose of the plane waiting to introduce themselves to me. Their kind attempts at trying to make the mood a little lighter was lost on my foggy mind.  I watched as this giant gurney was attached to a mechanical arm that lifted it and it's precious cargo onto the plane.  

I was then ushered inside and given a seat close to Cohen's head where he could see me.  My strong little boy had never uttered a peep this whole time and now searched my eyes for reassurance.   I held his little hand as we began to taxi down the runway.

When we started to ascend Cohen suddenly began to scream and tears of pain rolled down his little cheeks.  The flight nurse quickly came to his side and attended to him, I would learn later that the changing of altitude was creating even more pressure in his already gas filled belly.  The nurse was able to vent his G-tube and reduce some of his discomfort.   He finally settled and fell asleep.

I had never been on a plane this small. I am not a big fan of flying to begin with...  and on this little gem I was able to look out of the cockpit window, a view that I was not entirely comfortable with apparently!  

The trip took us about 45 minutes.  During the flight I had a chance to finally catch my breath and attempt to take in everything that was happening.  I kept looking at my sweet little guy thinking about all that he had been through.  This isn't  a situation that you every think you will be in with your children.  And now here I was thousands of feet in the air with complete strangers that I was completely depending on and trusting with the life of my child.

I watched as we passed over hundreds and hundreds of lights, each representing people that were going about their daily lives.  I tried to think about the everyday things that I would have been doing and certainly taking for granted if I were home.  I wondered how many times people in similar situations had flown over my house and seen our "going about life light" glimmering below them.  It was thought provoking enough for me to make a commitment to start praying for the planes and helicopters that pass over me each day.

When we finally arrived there was an ambulance and more transfer team members waiting to escort us to the hospital.  This proved to be another long silent ride with me still to emotional to speak, for fear I would start crying and not be able to stop.

The night was long, Cohen's IV blew while we were in flight and a new one had to be placed. The hospital has a team that is designated to specifically put in IV's for kids's like Cohen (he has a lot of scar tissue from all of his IV's and is very hard to stick).  Even with this special team he had to be stuck more than once to finally get his new IV started.  

Todd and the girls arrived the next day... and my heart never felt so full!!  I couldn't hug them enough. Cohen slept most days still, which allowed for me to spend some much needed time with the girls.  My wonderful husband knew just how hard the events of the passing days had been on me and was trying to provide me with as much reprieve as possible.

I was doing well and had been holding it together and then it came time for Todd and the girls to go back home.  Now, I am not a real big crier, I mean I do... just not very often or over little things.

And then it happened...

I was trying to check them out of the Ronald McDonald House when one of the SIX sweet ladies behind the counter said some very well intended words... "I hope you have a safe trip home."   Now, up until this point I had not shed a single tear, maybe I was just to exhausted or perhaps I hadn't let myself fully take it all in, however for some reason this was the straw....

These poor unsuspecting ladies were suddenly staring at a blubbering lady that was trying to get out the words, "I don't get to go with them." Between my uncontrollable sobs and feelings of humiliation (I hate crying in front of people much less strangers) I was a mess and I was trying to hide it from my girls.  Fortunately, they were off getting a snack for the road and missed the whole scene.

These wonderful ladies did their best to comfort me and went out of their way to do all they could for us.  I am so grateful for the kindness of the people that work at the RMH.

It has taken me awhile to be able to write about the events surrounding our flight.  It was a difficult time for our family and it wasn't something I wanted to revisit in my mind.  Now, that I am sitting here in the comfort of my home and have been able to keep our little superhero out of the hospital for awhile, I can fully appreciate the experience and what it has taught me.

For now I am taking each day one at a time, appreciating every opportunity to be together as a family. And reminding myself that; there is joy to be found in each day and although some days you may have to look a little harder than others.... never give up, it's there!

Feeding Cohen: How To Setup a Kangaroo Joey Feeding Pump

Our littlest bullfrog doesn't do things conventionally... so why should eating be any different.  For the past nine months he has required enteral feedings to survive.  He had a NG tube placed last September but was later switched to a gastronomy tube (G-tube) because he can't eat food and refuses to take in his formula orally.  Our little guy is on continuous feeds for 22 hours a day, which requires us to refill his formula every four hours around the clock.  

The idea that your child needs external resources to thrive is difficult to digest and can be very stressful at first.  We were just kind of thrust into this new life and given very little instruction on how to navigate through it.  Although, I was given a brief lesson on how to run our pump during our discharge, my sleep deprived overwhelmed mind was less than focused. So when an IV pole (which required setup) and a bag full of supplies finally arrived at my door at 11:00 at night I was feeling slightly defeated to say the least!    

I have created a video, which explains the basic steps of setting up an enteral feed.  I hope this information will become a resource for others that are trying to feel their way through this process.  

Just remember you are not alone and things will get easier as you become acclimated to this new way of feeding your little one. 

1 Peter 5:7 Casting all your anxieties on him, because he cares for you.

Life With An NG Tube

I wonder what I would say to her....

I wonder what I would say to the woman I was a year ago... that exhausted woman that sat at the bedside of a sleeping, sick little boy covered in bruises from unsuccessful attempts to hydrate him. Discouraged, feeling helpless and unsure of what was happening to her perfect baby, wondering why she couldn't make him better, why she couldn't feed him, and unaware of just how sick he was.

Where would I even begin when trying to explain the course of the year that awaited her or the fight she had coming.  She was so naive to the coming events of countless doctor appointments and hospital stays that spanned across four states.  She had no idea that her precious baby would endure 50 IV sticks, 3 surgeries, countless (literally) countless blood draws & x-rays, as well as 11 hospital stays in four different hospitals before he would turn 19 months old.

The woman in that hospital room that night had no idea that she was about to be thrust into overcoming her insecurities... to be the one that would find her sons disease and then confidently present it to his unfamiliar healthcare providers.

She had no idea that soon she would learn how to run equipment that she had never even heard of up until this point in her life.

She had no idea how many times she was about to watch her child look at her through fear filled eyes, desperately urging her to rescue him from the tubes, needles, and procedures that he had to undergo.

She had no idea that her secret urge from years ago of wanting to be a nurse was about to become a reality in a way that she had never envisioned.  Or that she would be taking on that role for one of her greatest joys.


So what would I tell her...

I would start with... Your faith is about be tested so hold tight to what you know. Trust in the one you have given your life to.... the same one that you dedicated your son too.  You are about to experience some the most difficult days of your life but you will weather the storms, not because you have obtained super strength but because you trust in one that does.  You are about to experience love in the truest form from your family and friends and to see why God placed these people in your life.  You are about to understand the real reason God created an earthly church and filled with people that lift each other up when their strength is depleted.  Take heart because although you are about to face many struggles, you will also experience great blessings, so embrace them when the come and use them to propel you through the difficult times.

      ~~~~~~~~~~~~~~~~~~~~~~
I believe that if that same woman could have peered into the future she would have had a few words for the me that I have become.  I think she would tell me that she is proud of me. Proud of how I stood up for my sweet baby. Proud of how I listened to my instincts when everything around me suggested otherwise.  Proud of how I learned to overcome my insecurities and speak up when Cohen desperately needed me too.

You won't hear me say this very often... but I am proud of me as well.  I'm  a constant work in progress and I'll be the first to admit that I am far from perfect but for just one moment I am going to hold my head high in accomplishment... and be thankful for my successes thus far.

The truth is we all share one commonality... one absolute for all of us....   At one point or another we are all guaranteed to experience pain.  And although it may not look the same for each of us and will certainly affect us each differently, you can rest assure we will all be changed... either for the better... or the worse.  So I will make a choice... I will allow my pain to have purpose.... choosing to bring meaning to the struggles that I have hurdled.... allowing what was intended for evil to be used for good.

My hope is that you will allow  our pain to receive its purpose through the way it impacts your hearts.  Our family does not live in sorrow or sadness but we celebrate everyday as a new beginning filled with hope and promises from our God.  We will continue to face the trials of this life, not as loners lost in confusion but as children sheltered in the arms of loving Father.


I pray that the strength that resides in our little superhero will permeate into the lives of all who hear his story, allowing our Pain to be transformed into Purpose.














Isaiah 40:28-29  "Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak"

Living In A FPIES Fog

FPIES-Our beginging

Our Little Puzzle

Our Little Puzzle: Cohen Update

Have you ever spent countless hours working on a puzzle only to find out as you neared the end there were valuable pieces missing?  Sections come together but without these key pieces the image is lost... and so the frustration sets in as you frantically search for those clues necessary for revealing the BIG picture.  Now hold that thought!

Meet our little puzzle....

And quite the complicated one I might add, but with every new appointment we learn more and more about our little superhero.  Our doctors are doing their best to help bring as much clarity as possible to our situation.

One of the most difficult things I have heard thus far is....."We may never know why."  I am a person who likes to research and find answers to problems and it is hard to except that sometimes there just aren't any.

I spend countless hours pouring over my sons's medical records, lab reports and searching for information on the computer, it is my job to keep looking!  When you are dealing with something rare and undereaserched you become the expert for your child!  I have learned some valuable lessons along this journey...

~Even with well-intended physicians you may not receive the best advice, in fact in our case it was quite dangerous.

~Although I don't posses a medical degree I am the expert on my child's illness, not discounting the valuable knowledge of medical professionals but every doctor can't be an expert on every illness.... so we searched for ones experienced with our disease.

~I must always listen to my instincts.... going against incorrect medical advice is not only acceptable but my responsibility.

~People aren't perfect and there are no exceptions in medicine, so I must be prepared for mistakes and have the courage to confront those making them (despite all that was written in Cohen's chart about NO FOOD and the allergy alert bracelet on his leg stating FOOD....they still tried to feed him).

~I have the most amazing support system of friends and family and I don't know where I would be without their love and generosity.

~God's grace is ALWAYS sufficient and will see me through!!

Our Newly Discovered Puzzle Pieces
We met with our new GI, Dr. Putnam at Cincinnati's Children Hospital and I found myself hearing some familiar words.  Much of what he said confirmed what our allergist at Johns Hopkins had stated, but he went a step further.  He was very honest in his explanation.  He discussed with us what is known about FPIES, there is far more that they don't know and may never know, and that they have theories that desperately need research.

Here is the break down on what he believes is going on with OUR superhero:

• Cohen is a severe reactor and we may never know why he reacts to so many foods.

• Refereed to him as a severe hypersensitive immune responder: 

So in other words... When we get sick our bodies respond by creating antibodies so that it will recognize the illness the next time and be able to fight it off easier (pretty awesome handy work God).  For some reason Cohen's immune system responds to food the same way and according to our GI the more we feed him the sicker we are making him.

• Dr. Putnam's theory:  Stop all food trials for as long as we can in an attempt to reset Cohen's immune system and hopefully reintroduce foods later without reactions.  There are no guarantees but we have nothing to loose.  He was very passionate about educating people that children like Cohen only get sicker the more we try to force food on them, which only supports why he is so resistant to eating food. To Cohen FOOD = Pain

• Then we asked the burning question: Are we dealing with an extremely severe case of FPIES or is there more going on?  His response was, "Yes, that is our big question and we will try to figure out more but unfortunately, we may never have all of the answers."

Where Does This Leave Us Now?  
It was determined that Cohen urgently needed a G-tube placed because of his increased risk of aspiration as well as other concerns.  After the surgery we were admitted into the hospital and began the daunting task of gradually increasing formula feed rates and concentrations.  Cohen didn't tolerate the faster rate at first and began to loose weight.  We finally managed to increase both and stop the weight loss, however we never regained any.  Since home he has lost a little more and is weighed weekly by his pediatrician and monitored for belly distention.  Our little man has also been having more issues with blood and mucus stools, which only leaves us with more unresolved questions.

In our FPIES world we are usually left with many uncertainties, filtering through symptoms as best we can.  This is very difficult for the type A in me (yes, I have a slight obsessive compulsive side.... there you go honey I admitted it).  I like concrete answers, written in black and white.... this living in grey is a struggle for me.

So I have learned to triage....deal with what needs attending to at that moment and not dwell on the unknowns of this illness.  I am a work in progress, learning to turn things over and worry less...

God, grant me the serenity
To accept the things I cannot change,
Courage to change the things I can,
and wisdom to know the difference.

We will continue to fight and advocate for our little superhero and diligently work to keep him thriving.  Life isn't easy but it isn't suppose to be.  Our situation makes us far more sensitive to others and what they are dealing with.  My older children look at life differently because of the strength that they see in their little brother.... what a beautiful reminder for all of us that true joy doesn't come from this world!!!