The Lie

As I sit here once again amid alarming machines and sterile walls I am compelled to tell the truth.... And the truth is I feel as though I am living a lie. Not one that I have told but one that is being imposed upon me by the well intention of others.

I am in a constant struggle with the fact the people think that I am something that I am most definitely NOT!

 "You are so strong." 

.... words spoken by kind hearts with the genuine purpose of supporting and encouraging me, but the truth is the more I hear them the more I feel as though I am living in a lie. 

So I want to set things straight and let everyone know...

My God is STRONG.

My child is STRONG.

But I am not strong, not at all, not even close. 

What I do has nothing to do with strength. 

I don't get out of bed in the morning because I have strength... but because I know someone is depending on me for their every need. 

I don't face appointments, procedures, or diagnoses with strength... I show up because my child's life depends on it.

On long hard days or when difficult news comes... strength is the last thing I am feeling.

Frequently, we are faced with hard decisions regarding our child's treatment plan, often given no real choices... forcing us to decided between paths of lesser evils. These are moments when my weaknesses are revealed and I am sustained only by the strength of my faith.

There are times when testing leaves us with no ideal outcomes to hope for... only new sets of fears and uncertainties.

I do all of this not because I have strength... but because I still have AIR left in my lungs. 

If what I did each day depended on strength I would fall short daily... there just isn't that much strength this side of heaven.

So please don't confuse what you are seeing as strength, the truth is what you are really witnessing is the depths of a parent's LOVE for their child.

There is place in our hearts that we are suddenly aware of the moment we first hold our child.

An extraordinary love is formed in the deep reservoirs of our hearts and is awakened within us the moment we learn of their illness.

I don't know where our journey will take us but as long as I have breath in me I will fight for my child.

And thankfully that doesn't take strength, just LOVE, for which there is certainly no shortage.

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!

Pole Break: In Honor of Feeding Tube Awareness Week

Do you remember that childhood game of tag where someone yells "Jail Break" and everyone runs in every direction as fast as they can?

Well, we play a very similar game every single day, only it's called "Pole Break!"  We love this time of day, it's when our favorite little "Tubie" gets his window (for my non-tube friends: that's the term used for getting a break from your tube feeds). 

Imagine being two years old and attached to an IV pole for 21 hours a day! 

Our little guy is now fed through a GJ-Tube, which means one tube feeds formula directly into his intestines while another tube lets the pressure vent from his belly. If his vent bag is at a lower level his vent bag will fill up with fluids depleting him of much needed daily fluids.

You can feel the excitement build and watch his little eyes light up when we say, 

"Cohen, do you want me to unplug you?" 

He usually replies with a squeal of joy. Then we stand back... when those connections come off he runs like the wind. It's wonderful to see him so happy.

Unfortunately, he has learned to sense when our game is coming to end and has started hiding in a desperate attempt to avoid getting "plugged back in" to the dreaded pole. It is the hardest part of my day... knowing that he wants freedom that I can't give him.

Someday little man... I promise! 
I know in my heart this is not forever! One of these days we will have a huge celebration. I have decided that we will mark the occasion by having a 

DESTROY THE POLE PARTY

In order to be invited to the grand event you must come up with a creative way to destroy this pesky pole!

Don't get me wrong I have the utmost appreciation for the job it is doing to keep my child alive, however I eagerly await the day when I can witness it's demise, a sediment that I am sure I share with our Tubie Buddies' mothers.

How can I love something so much that I desperately hate? Because it's my son's life source and for that reason alone I will forever be indebted to it. And as much as I love what it has given us... I will love seeing it go away even more.

But for now we will keep playing our game and enjoy the gift of our "window". 

For more information on feeding tubes visit our friends at Feeding Tube Awareness 

If your new to the feeding tube world and use a kangaroo joey pump you can watch our how to video here...

Happy Feeding Tube Awareness Week Tubie Friends.

Together we are teaching the world the true beauty of 

feeding tubes!

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

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!!

Pure Genius

Okay, just so you know I am in no way regarded as a genius... I know that may come as a shock.  

But let's be honest the true measure of intelligence is really whether the knowledge you have matches the need before you.  You can have a million degrees in medicine or aerodynamics but if your power goes out it's the electrician that becomes the most intelligent person in the room.  And if your car engine dies it's the mechanic in the scientific researcher's parking lot that is the genius.

My point is this, odds are that at sometime in our lives our area of expertise will match up with the immediate need in front of us... and in that moment we will have our opportunity to shine.  

So let me just say that what I am about to tell you is... Pure Genius!!  I know, it may seem a bit extreme to give my words such high regards but I think you will agree that my moment to shine proved to be a success.

My Shining Moment

Well, let me just say that five kids can create messes like you can't even imagine and this mama could go insane trying to keep up with the ongoing clutter.  So I came up with a scheme that was.... yep, PURE GENIUS!

Everyone in our home has chores and jurisdictions that must be attended to daily (yes, I am a Duggar fan). However, there are some days when those efforts just aren't enough. These were the days when I found myself turning into the relentless nagging mama that continuously chanted, "pick up this, pick up that!"  Not only was it annoying to them but it was also extremely exhausting for me.

The Game

Okay so here it is, the genius part... I created "Pick-Up Points".  I know it doesn't sound like much yet but hang on, let me explain. 

On random days (the ones where I want to pull my hair out from the piles of clutter) I declare, Pick-Up Point Time and all of the kids come running.  Seriously, they literally come running.  I then proceed to set a timer (the length of time depends on the depth of the mess) each child begins to run in every direction picking up anything and everything they can find and putting it all away.  I even hear them sometimes argue over who gets to pick up what.  

Genius..... right!  Now, I would love for you to believe that my kids are just so wonderful that they would clean up that easily with no outside reward however, I have my integrity to think of so I will be honest.

The Motivation

Points are given for each item they pick up AND put away, I stay close by to monitor this process.  There are also times when the game is not being played that I will offer a set number of points in exchange for them helping outside their jurisdiction or just for volunteering to do something without expecting a reward.  The kids collect the points which, can be used to purchase items at the store.  They can choose to use the points right away or let them add up so they can buy larger items.  

Participation in the game is voluntary and the kids still have their regular chores which, are set aside just to teach responsibility.  However, it only takes one shopping trip to motivate the non-shoppers for the next game.  Our current Pick-Up point exchange rate is 1 point = 1 penny (there young and it works).   Keeping the point value low motivates them to pick up more items (that's where the scheme definition comes from). There is also the added benefit of their competitive nature, I guess I get the blame for that genetic hand-me-down.

Regardless of why it works... it works!  In a matter of minutes my house goes from chaos and clutter to neat and orderly.  And this mama sits back and smiles... much nicer than the previous nagging mama... so it's a win-win for all.

This little game has revolutionized my life and given me back some of my lost sanity, well I like to believe that at least.  I don't know how long this will continue to work so for now I will just marvel in its wonder and enjoy the moment when for a fleeting instance I was a Genius!

1 Peter 4:10 Each of you should use whatever gift you have received to serve others, as faithful stewards of God's grace in its various forms.

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!!!