Monday, August 8, 2016

"What Do You Mean He Can't Eat?"




Did you know that our Super Cohen has a very real Super Power....
He can live without eating food!



“What do you mean, he can’t eat?” people ask. Two years ago I would have had a similar response. That was before I knew people can survive without consuming food.


Cohen on a swing, wearing his superhero cape.
Cohen on a swing, wearing his superhero cape.

HPN Awareness Week is August 7–13, 2016. About 40,000 Americans,including my son, live on home parenteral Nutrition or TPN (total parenteral nutrition). Parenteral nutrition (PN) is the feeding of a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, salts, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no significant nutrition is obtained by other routes.
Our journey with TPN began in March 2015, when attempts to feed Cohen through his GI system failed. Cohen’s doctor describes his condition as idiopathic intestinal failure, which simply means we have yet to figure out why his intestines don’t function like they should.
All of Cohen’s nutrition comes from this amazing source of life sustaining medication. In the past,patients on TPN would have had to remain hospitalized to receive this type of treatment, but now because of advancements in medical equipment, patients like Cohen can live at home.
TPN is made especially for each patient; it’s a “made to order” form of nutrition, extremely specific to each individual’s blood lab results. In order for Cohen to grow at an
appropriate rate, he must receive continuous nutrition through his veins (or as Cohen says, he eats through his heart) and his infusion lasts for 20 hours. Unfortunately, this only enables him to be disconnected from pumps and IV poles for a few hours each evening, but this is his time to be like other kids his age. Watching him run, jump and play with his friends and siblings is a gift I will never take for granted.
There is no doubt that TPN provides us with many blessings, allowing us to live outside of the hospital. However, TPN does not come without risks, and should not be considered unless all other options of nutrition have failed first.
One potentially devastating side effect is liver damage, which can occur from long term use. Because TPN is administered through an IV catheter, there is also a great risk of life-threatening infections. Last February Cohen developed a fungal infection which progressed to what his physicians described as an overactive immune response by his body. He went into acute liver failure and septic shock. It was a very scary time for us, but we are grateful that he is doing much better now.
Because of the danger of infection, we must be vigilant in the way we care for Cohen and his IV line. This requires us to do weekly sterile dressing changes at the catheter insertion site. He must also avoid contact sports and swimming, because the line must remain protected and dry to avoid bacteria growth.
TPN allows him to do things like mop the floors,
dressed as Buzz of course!
We live in a world where food is the center of much of our daily experiences, such as parties, movies, and other events. But for someone who can’t eat, it can be another reminder of how different they are from others. This week gives us a chance to share a glimpse of what life is like for those who can’t eat food. For a 3-year-old, it means no swimming, and limited time on the playground. It means no birthday cakes or treats like other kids his age.
TPN is not easy to deal with, but it allows Cohen to be part of life. Our family strives to enjoy the blessings and gifts each day has to offer.
My hope is that by answering questions about TPN, we can build a pathway to education and understanding, breeding compassion and inclusion.

This is a very special week for us. It is our chance to remind the world that we are all beautifully different.
Visit the Oley Foundation for more information about living on HPN or enteral feeds.


HPN Awareness Week! 


August 713, 2016 



Please check out our friends at the Oley Foundation for more information about living on HPN or Enteral Feeds.


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Wednesday, June 1, 2016

A Letter to A Friend

A while back, I had a conversation with someone who revealed the true fears of her heart to me. It was apparent that her words were not at all intended to hurt me or judge our family's journey but truly express her very real fear.

I haven't been able to get that conversations off my mind. Her fears are not isolated to her, in fact I imagine that there are many others that share the same feelings as this beautiful woman, but have not found the courage to speak the words.

"I am afraid to have a baby, I don't think I could handle having a sick child."

Here is a letter to her and others that share her fear.

Dear Friend,

I do not begrudge you for your fear of being faced with the idea of living my journey, having a sick child can be frightening. None of us feel equipped emotionally, mentally, or even physically to keep up with the demands of caring for a child with special needs, but take heart there is far more to this journey than the struggles we face.

Your words of fear broke my heart. Not because you hurt me but because I can see that your fear is deep and has paralyzed you, denying you one of life's greatest treasures. I hope that my words can speak to your heart and paint a different picture for you of motherhood.

No one would ever choose to have their little one suffer in any manner. As parents we want to believe that our children will be born into a perfect world, never experiencing pain or disappointment, however that is not a reality for any of us. I can't promise you that your pregnancy will go smoothly without complication or that your child will be born with all of their parts working properly, but what I can promise you is this... their birth makes you their mother. In one brief moment you are instantaneously transformed into the most important person in the life of another human being, and that feels amazing. The fear you have now transforms into love, a love like no other.

Every journey of motherhood is full of ups and downs whether your child is healthy or not. For the first time in your life you will question every decision you make because the consequences effect more than the person in the mirror. But those decisions evolve you into an incredible person, one you never imagined you could be. You will struggle at times but in return you will find more joy than you ever dreamed possible. 

These little lives bring purpose and balance to a world of chaos. They remind us of everything good in the world and inspire us to find that same good within ourselves. Not all days will be easy but true happiness can be found in each of them if we choose to find it. 

There are many good reasons to choose to not be a parent but I pray that fear will never be one of them for anyone. Every life has purpose. Every life is beautiful. Every life is worth the cost that comes with living. Your greatest loss would be missing out on this kind of love due to fear.

So please dear friend do not fear my journey, for my journey is a good one and this little life that I have been entrusted with is worth fighting for. I would rather know a life with him, this way, than live a life never having known this incredible little spirit. 

All of My Love, 
A Mother of a Special Needs Child
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A Letter to A Friend

A while back, I had a conversation with someone who revealed the true fears of her heart to me. It was apparent that her words were not at all intended to hurt me or judge our family's journey but truly express her very real fear.

I haven't been able to get that conversations off my mind. Her fears are not isolated to her, in fact I imagine that there are many others that share the same feelings as this beautiful woman, but have not found the courage to speak the words.

"I am afraid to have a baby, I don't think I could handle having a sick child."

Here is a letter to her and others that share her fear.

Dear Friend,

I do not begrudge you for your fear of being faced with the idea of living my journey, having a sick child can be frightening. None of us feel equipped emotionally, mentally, or even physically to keep up with the demands of caring for a child with special needs, but take heart there is far more to this journey than the struggles we face.

Your words of fear broke my heart. Not because you hurt me but because I can see that your fear is deep and has paralyzed you, denying you one of life's greatest treasures. I hope that my words can speak to your heart and paint a different picture for you of motherhood.

No one would ever choose to have their little one suffer in any manner. As parents we want to believe that our children will be born into a perfect world, never experiencing pain or disappointment, however that is not a reality for any of us. I can't promise you that your pregnancy will go smoothly without complication or that your child will be born with all of their parts working properly, but what I can promise you is this... their birth makes you their mother. In one brief moment you are instantaneously transformed into the most important person in the life of another human being, and that feels amazing. The fear you have now transforms into love, a love like no other.

Every journey of motherhood is full of ups and downs whether your child is healthy or not. For the first time in your life you will question every decision you make because the consequences effect more than the person in the mirror. But those decisions evolve you into becoming an incredible person, one you never imagined you could be. You will struggle at times but in return you will find more joy than you ever dreamed possible. 

These little lives bring purpose and balance to a world of chaos. They remind us of everything good in the world and inspire us to find that same good within ourselves. Not all days will be easy but true happiness can be found in each of them if we choose to find it. 

There are many good reasons to choose to not be a parent but I pray that fear will never be one of them for anyone. Every life has purpose. Every life is beautiful. Every life is worth the cost that comes with living. Your greatest loss would be missing out on this kind of love due to fear.

So please dear friend do not fear my journey, for my journey is a good one and this little life that I have been entrusted with is worth fighting for. I would rather know a life with him, this way, than live a life never having known this incredible little spirit. 

All of My Love, 
A Mother of a Special Needs Child
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Monday, January 25, 2016

My FaceBook Farewell

Her words were simple, sweet and full of wisdom, "Mama can we have a FaceBook-free home?"

If I have learned anything in the past two years, through our journey with Cohen, it has been that family-time is precious. 

Unfortunately, it is also easy for me to take this gift for granted. Even though I desire to seize every opportunity to enjoy each moment our family has together, I often fall prey to
the distractions of the Internet. Usually, those distractions start out with a meaningful purpose but I often find myself lost in a sea of social media.

I'll be honest, I enjoy seeing my friends and their beautiful families, hearing about what amazing things they have going on in their lives, and especially the occasion when I get to encourage someone else for a change.


However, it's been a goal of mine for a while now to cut back on the amount of technology that streams into our home. 


The older my kids get the more valuable this decision has become. I can feel our time ticking away and with it the opportunities for me to connect with these amazing little people in
my presence.


That's the key, isn't it... To be present in our conversations, present in the moment... present with those that are in our presence.

It seems like such an obvious little observation, yet how often do we find ourselves neglecting those that are in the same room with us because we are virtually interacting with others?

What message are we sending to those closest to us? 


It took one little question, posed to me by my sweet, wise child, to prompt me to reflect on my goals for what I want my children to learn from me. 

My children deserve my attention more than anything else in the world, and doing so makes them feel valued. 

I want them to see me treat those people that are in my physical presence... valuable.

One of the many things I desire for them to understand is the significance of personal communication, the kind that can only happen when we look into another human's eyes. 

We all deserve to feel valued.

It frightens me to think that this is quickly becoming a lost art on our next generation. It is easy to just text or message someone instead of speaking directly to them.


The truth is, there is far more accountability when the words we say are spoken out loud to an individual, allowing us to see their reaction and feel their emotions. We receive a unique interpersonal gift that happens in those types of interactions.

But I can't teach this to my children if I don't model it, which brings me to my decision.


I have decided to leave FaceBook.... indefinitely.


Why? Because I can't turn back time... or stop it, so I thought perhaps I would do my best to try to create more of it. 


Using technology less will allow me to focus solely on the people that are in my presence... and lets face it, there is plenty going on right there to keep me busy enough!


Don't get me wrong I am not abandoning all technology. I will continue to blog, when time allows for it, to keep those that are praying for us up to date on our journey.


Please know that I will be thinking of you and keeping you in our prayers. I hope you will do the same for us. 

Remember, you can always reach out to me through "last generation's" means of communication... lol


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Saturday, December 19, 2015

And So You Climb.


Often people will say to me, "I couldn't do what your doing." Or, "I can't even imagine."

The truth is we all have something in our lives that is difficult, something someone else would look at and say, "I don't know how they do it." 

Each obstacle in our lives are opportunities for us to stretch ourselves farther than we imagined possible, showing ourselves what we are really capable of accomplishing.

I think I found a way to illustrate what I mean. Have you ever been hiking?

Or perhaps mountain climbing?






Standing at the foot of a mountain is intimidating to say the least. Imagine yourself staring up at this infinte peek  feeling fear and anxiety swirl through your mind. You know the first step will be the hardest and struggle with coaxing yourself to do this insurmountable task.

There is no other away around it and so you do the unthinkable and begin the impossible.

Each movement in the beginning is painstaking and rigorous  You calculate each move with precision and thoughtfulness. 

Every new step is harder then the last and inside your mind race thoughts of all that can go wrong. These plaguing demons taunt you with ideas of retreat... but something deep within you keeps you going.

For inside of you lies a strength that has never been tapped into, and before this moment you didn't know it even existed.

Each new step reminds you of where you were and how much easier it was to stand on the solid ground that you left behind.

But somewhere in the climb a change occurs, calculated moves become mindless extensions of your body. Although, the fears and doubts still rest in the back of your mind they are now overshadowed by the determination that carries you up.

Your body seems to know what to do without guidance and movements that once seemed impossible for you to make, become natural motions.


Finally, before you know it you are standing at the top, breathing in the accomplishment of your great feat.

But suddenly you realize that your celebration is short lived, for in your vision now sits the next mountain that awaits you... taunting you once again with insecurities.

Again, you find yourself consumed with self doubt and uncertainty. How can you climb THIS mountain when your muscles still ache from the last?

You know that only one direction exists... so upward you go with same trepidation that weighed you down on your very first step.

As you painfully battle your way to the top once again you gain new confidence in yourself and what your body can actually endure.

But in the light of this new peek, as you relish in your success of conquering the rocks below, your vision begins to clear and a familiar sight comes into view once again...

And so you climb.


We all have mountains in our lives... if we don't presently,we will before long. Instinctively we cling to the safety of the solid soil beneath our feet but staying idol on the ground will only inhibit us from experiencing the breath taking views above.

Choosing to climb means we choose to feel the pain of the journey; but by making that choice we have chosen the ultimate reward, the beauty of the peek.. and it is so very worth it!

I will continue to climb every mountain that is laid out before me, until the day when I find that I have climbed my way to the majestic gates of Heaven.

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Thursday, December 17, 2015

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. 




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!


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Thursday, December 3, 2015

What do you Hope for?

Have you ever had a hard time trying to determine which way was UP or DoWn... or <--- left and right--->? If you have ever felt lost in the DARK, trying to blindly feel your way out, you may understand where I'm coming from.

I have learned the hard way that every question doesn't necessarily have an answer. And that there are more colors than just  black and white.

In a world were your child's illness presents more questions than answers you  no longer know what exactly to hope for anymore.

When you're the parent of an undiagnosed child you may find yourself feeling as though someone handed you a menu of possible illness  and said,
"Please review the list of diagnosis and choose one to your liking." 

After quickly noticing a less aggressive, easily treatable one, you eagerly make your decision, only to find out there are no guarantees that you will get what you selected.

And so you find yourself fearfully waiting for an answer and questioning...
"How long will it take for them to return with a verdict and which one will it be?

Perhaps they will never return at all and you will be left wondering, 
"Where do we go from here?"
 What do you hope for when you live in the topsy turvy world where testing that comes back negative is not necessarily good news AND extreme measures of treatments that WORK are bad signs of prognosis?

What do you hope for when your child's constellation of symptoms don't fit into any one category, leaving doctors no choice but to run tests after tests?  In the end you are only left with more inconclusive information and uncertainty about your child's health and future.


What do you hope for when there are no good choices to hope for? It's simple...


You hope for another chance at today.

You hope for days without pain or hospital stays.

You hope for another opportunity to laugh louder, hug longer, and love deeper.

You hope for moments filled with lots of smiles and amazing memories.

You hope for wisdom to make the best decisions for your child, with no regrets.

You hope for answers and the strength to handle them when they finally come, no matter what they may be.


You hope that no one else has to feel this way and that someday children will never have to endure such things. And you pray that pain from your story will somehow have purpose, helping someone else that feels the sting of this kind of journey.

But above all else... you simply keep hoping, because without HOPE you have nothing!

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