The Undiagnosed: Cohen's Update

Timehop can be a wonderful thing... most of the time. I often find so much joy in looking over past pictures and memories... but every once in a while one stops me in my tracks and I find myself face to face with reminders of the difficult times in our journey.  

Today was one of those days...

When I read over the post from two years ago I was filled with so much emotion. 

Johns Hopkins: A Match Made in Heaven

I was in awe over how eerily correct some of Dr. Wood's predictions were (I had forgotten about most of them), but I also felt equally mad about the ones that did not come true... the ones I hung my hopes on.  


As much as I hate to admit it, there have been many times along this path when the wind has been sucked out of our sails.

This past entry reminded me of the hope that I had put into those steps of the journey, only to be left with the crushing feeling of our new reality. Johns Hopkins and the great Dr. Wood were simply one of many stepping stones on our way to healing, but even in knowing that, the sting still lingers. 


However, I am glad that I didn't know what the past two years would hold for Cohen; I'm afraid I would have focused on the fears and struggles and missed out on the joys that were hidden in between. 

Now we are at a new place yet again.... and I can't help but feel very disconnected from our old world of FPIES, a world that two years ago I clung to. Sadly, because of where we are in this journey I feel that I can no longer identify with the majority of that community. 

I realized some time ago that our story is not a typical progression for most kiddos with FPIES and our presences in that world only creates fear for those that are dealing with ONLY that condition... unlike us.

It was also very difficult to watch the world that was suppose to be ours, pass us by. We were suppose to progress like others and outgrow this like others... but our time never came. And instead we began to take steps backwards and in directions I never new existed. It pains me to admit that I had begun to grow a little bitter. Soon it became painfully obvious that we were dealing with more than the diagnosis we had been originally given.

So at this point I don't know where we fit in and to be honest it's a struggle some days to keep from feeling isolated and alone. 

Being medically fragile, with an unknown diagnosis, is like living between worlds. We don't have the support of any group or the comfort and camaraderie that comes along with diagnosable illness communities. 

And our tubes and lines make it blatantly obvious to the "well" world that we are not one them either.

We often stand alone, left to simply wonder about prognosis and question every decision we make because we have no literature to guide us, or support group to validate us. 

Our recent trip to Cincinnati left us with yet again more questions than answers. 

Because Cohen's constellation of symptoms don't fit into any, one single, diagnosis we are left crossing over into many areas of grey. One of our lead doctors believes that we are dealing with something so rare that it has yet to be identified. Another thinks that what we could be seeing is an inflammatory response to EVERYTHING that enters his little body. At this point we are left with only theories and not concrete conclusions.

The painful truth is Cohen's doctors just don't know why he is the way he is... 


So we wait..... for more test results, some of which may take up to a year to get back and with that there are still no guarantees for a diagnosis. 

Life in the undiagnosed world is difficult and scary. We don't know the real monster we are fighting and because of that, this battle is unfair; leaving us with only Whats? and Whys?

But that doesn't change our stance on Hope nor will our faith be shaken. Once again will be still and quietly wait for His guidance and be grateful for the doctors that God has put in our path. 

This past week one of our physicians told me words that helped heal my heart just a little, he said... "I can't even imagine how difficult and frustrating this is for you as parents. I wish I could give you better answers right now. But I want you to know I will not give up, I promise."

We believed then.... We believe now and We will forever continue to BELIEVE!

Here I am Lord: Cohen's Update

During the past few days I have replayed the events of last Friday's meeting with Cohen's doctor over and over again. Asking myself, "How did we get here?", pouring my thoughts over every question and answer.

Although I have struggled with sharing the details of this portion of Cohen's story, I am passionate about allowing others to see the work that God is going to do in him; ensuring that He receives all of the glory when Cohen's day of healing finally arrives.

Earlier today I watched Cohen's FPIES awareness video, reflecting on the path that we have traveled.  I found myself longing for that season of our journey back, a place that I would have never imagined desiring to be again and yet I would give anything to be there now. 

Last week while Cohen was in surgery we met with several of his caregivers but the most important meeting was with his GI doctor, who leads Cohen's care team. 

As he walked into the room I watched his every expression, trying to prepare myself for the words that I had been anxiously waiting to hear for several weeks. His demeanor made it obvious as to where the tone of this conversation was heading. I knew right away that whatever he was was about to tell us would change the course of our family.

He paused for a moment before he began to speak. The results from the genetic tests we did several weeks ago while Cohen was inpatient were back... the ones that I had never given a second thought too.

He had prepared us for a long genetic journey of unanswered question after question, so I knew that these preliminary tests were just a starting point.

But He tested positive to one of them.... and now somewhere in his words my brain had to do a 180 degree turn in order to keep up. He  informed us that this genetic condition is not THEE condition that is shutting down our sweet little boy's digestive system.

We understand now that Cohen's FPIES reactions are only symptoms of something larger and unfortunately, Cohen's illness goes far beyond that diagnosis. 

No one expected Cohen to test positive to the very first genetic test. However, they feel that this genetic condition and his FPIES are possibly being activated by another genetic condition that we have yet to uncover. 

In the coming month we will be seeing a Geneticist, Immunologist, Rheumatologist, and a Mitochondrial Clinic to help point us in the right direction. 

The best case scenario would be for immunology to come back with identifiable abnormalities, which would give us something to treat. At least then we would have the possibility of doing a bone marrow transplant to reset his immune system. 

Prior to our meeting my biggest fear was a bone marrow transplant. I never dreamed that half way through our conversation with our doctor I would be almost begging him for the chance at having one. 

Unfortunately, if it is in fact genetic we can't do anything except try to stay ahead of pending problems, like organ failures and other complications that come with long term Total Parenteral Nutrition (TPN) use (which is how Cohen is now fed, totally bypassing his GI system altogether). 

Our GI feels like Cohen will probably never come off of TPN, which means he believes he will never eat, words that would have crushed my spirit if it wasn't for my belief that he will be healed.

We also questioned him further about the children he had previously mentioned to us (the ones that Cohen shares a similar illness progression with). I had once been so excited to hear him say that Cohen fit into a group of children which share similar symptoms, it had never occurred to me to be concerned about that group. 

Oh how quickly a moment in time can change your life. I watched my husband quickly switch into doctor mode, as he asked Cohen's doctor to be honest with us (and honest he was)...  he said of the five children, three have passed away (ages 3, 7, and 21) and he lost contact with the other two. This news proved to be the biggest emotional blow to my heart, it just wasn't something I was prepared to hear.

A few weeks ago this same doctor was fighting for his own life and God saved him, giving him the opportunity to now fight for my son's life. Not only do I believe in miracles but I also believe that God has already set into motion the plans to heal our little Superhero.

Our wonderful doctor has already discussed Cohen's case with several of his colleges that we will be meeting with; they believe that we will learn a lot in the next few months, helping us better understand this BEAST we are up against. And although, we are at a place that no parent every wants to be, we know that God is in control and that He will provide everything we need to get through this season of our life. 

The good news is that Cohen has gained over 4 and a half pounds since starting TPN and is a very happy little boy, no longer in pain daily. His central line placement last Friday went very well. He is now stronger than he has ever been, finally receiving the nutrition his  little body desperately needs. 

We will joyfully count these and every single wonderful blessings that comes our way along the path to Cohen's healing!

A few months ago I discovered a song that impacted me like no other has ever before and I couldn't sing it enough. I longed to be drawn closer to God as I recited those powerful words and now He has given me my chance. 

Well here I am Lord... where my trust is without borders, right where you have called me, where my faith will be made stronger in the presence of my Savior.

I believe with all my heart that one day Cohen will be healed!

I will not complain...

Last week my big problem was that my washer decided that enough was enough and went on permanent strike. I was just thankful that it's financial timing was perfect, however I can't say as much for it being considerate of the pending snow storm.

After selecting the beast that would tackle the massive aftermath the old one left behind, we waited for it's highly anticipated arrival.  And then the snow came and the washer didn't...

And so I complained... a little... or perhaps a lot.

Twice my washer was brought within 400 yards of my home... and twice it was taken away because they couldn't get through the blizzard remnants to get it into the house.

But now I will no longer complain because 3 days ago life reminded me what a real problem was, knocking my washer and weather problem significantly down in the rankings. Cohen started getting sicker and we were having to consider the possibility of heading to Cincinnati.

Washer and storm problem status reduced too... just a terrible inconvenience!

I will not complain because... 48 hours ago, it was a done deal... we were told that it would probably be best to get him to Cincinnati and so we started making the arrangements for our travel.

That's when I petitioned my friends for prayers! 

Then 24 hours ago... I found myself involved in a furry of phone calls and blood tests in an attempt to figure out the best treatment plan for our superhero.  Our doctors in Cincinnati were corresponding with each other trying to figure out a plan, unfortunately, we are on uncharted waters with Cohen. Every illness is complicated by his FPIES, which requires us to carefully weigh treatments so they don't do more damage than the illness.

My little boy is so very strong and even through the pain of repeated blood work he would smile with tears streaming down his little face and then thank everyone when it was over. 

Then last night we saw the result of countless prayers....

I was still trying to get home from the doctors office when our amazing pulmonologist in Cincinnati called and I heard her speak the most beautiful words.... "Let's treat him at home for now and just keep a close eye on him!"  One of the advantages to having a doctor in the home and I am sure a major factor that played into her final decision. She gave me her number and instructed me to notify her in the event that he declines in the slightest. He is doing well enough now that we all feel comfortable with this plan.

Waiting to be taken to it's final resting place.

I could have done a happy dance.... however I was still sitting in my car!

What washer and storm problem??

I will not complain because nothing else matters right now... 

Cohen and I were suppose to be 6 hours away from the rest of our family, in a hospital with my little superhero... but were not.... were home. And although he isn't out of the woods just yet I have confidence he will be better soon and we will be giving God all the Glory.

I know that your prayers are responsible for this battle's victory and I can't thank you enough. Please keep praying us through the rest of the war, your faithfulness is making a difference in the life of one little superhero.

Did I mention we get to stay HOME? 

It's safe to say I'm extremely happy to have my entire family under one very snowy roof... I will never take that gift for granted!

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! 

'Tis the Season for FOOD... the four letter word!

I use to love this time of year and all the fun that comes with it but this year is a little different.

As much as I want to get into the spirit I just can't help but feel a little less than festive. 

Have you ever stopped to think about how much food plays a role in our celebrations? I never gave it much thought aside from the occasional post dinner jokes about excessive calories or overindulgence. 

Although, this little four letter word, isn't the real reason for our celebrations, it is pretty hard to ignore when your child can't eat anything! 

And let's not forget it isn't just the lack of eating that's the problem, it's the missing out on all of the memory making fun that involves FOOD!

Honestly, it isn't even the fact that while everyone else indulges on mouth watering treats while my little guy slurps up shaved ice, that causes the biggest sting to my 'mother's heart'. 

It's the pumpkin carving and patches, trick-or-treating for candy, turkey and pie eating, Christmas cookie making... FUN... that I will miss the most.

I guess the hardest part is letting go of so many holiday traditions that we have had since our first child was born. 

I know that our little superhero will not miss these things, in fact he doesn't know any other way... it's me. I'm The One!

It will be me that misses getting to see his squeamish smile when he touches slimy pumpkin guts for the first time.

I'm the one that has to let go of not getting to watch a messy face toddler plunge into the thanksgiving fixings.

I'ts me that longs for the perfect image of all of my children gathered around a table with endless smiles as they cut out and decorate their Christmas cookies... while sneaking licks of icing when they think no one is looking!

I'm the one that is missing out on him doing the same family traditions that have become synonymous with the holidays.

Now, trust me I realize that I am blessed to even have the opportunity to share these holidays with my little guy, and I will not let anything keep me from soaking up every moment... but I would be lying if I said, "It doesn't hurt a bit."

Please don't get me wrong, we won't let this keep us from making wonderful memories, we are just going to have to get creative and find new ways to make jolly holiday fun. Very soon I will begin to relish in the joys that come from our new traditions... I promise!

But for now, Thank you...

... for not judging this special needs mama for letting her feelings of sadness surface for just a moment. 

... for allowing me to mourn the loss of the "normal" care free way of life that we use to enjoy. 

.... for supporting us in more ways than we could have ever imagined.

... for going above and beyond to make our little superhero feel included.


I feel better already!!

By the Light of the.... Little Pump

I have recently become aware of new talent that I have unknowingly developed. Isn't it funny how you can move through your day and not even realize that you have picked up odd habits.

I don't mind to admit that our little superhero has challenged everything I know... or thought I knew about child rearing. Nothing with Cohen has seemed to follow suit with his four older siblings.  But I have had to learn how to grow and stretch my understanding of parenting in order to accommodate his unique needs. Along the way I have not only learned many things about myself but I have apparently developed new gifts as well.

So what is this new talent you ask...

Well, awhile back all of our bedroom clocks decided to retire themselves and for one reason or another they were never replaced. Now, it has come to my attention that I have found another more unconventional way to tell the hour throughout our long nights.

A short while ago I realized that I have been periodically waking and looking at the level of Cohen's formula to determine the time. Because Cohen has the same rate every night, I can tell how much time we have left for sleep by looking at how much formula he has left in his bag. It's a strange gift I know and one I had been developing for longer than I realized.

Who knew that when we welcomed that glowing little noise maker into our bedroom that I would find another extraordinary use for it (I mean besides its, sustaining the life of my child one).

I guess you could say that this is my little way of turning lemons into lemonade!

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