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

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

And so you find yourself anxiously anticipating 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 sitting, waiting and 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 measure 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 another opportunity to laugh louder, hug longer, and love deeper.

You hope for good days 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.

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

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Tuesday, October 27, 2015

Bennett's Light

My hands tremble and my heart aches as I write these words.

Sweet Bennett is now dancing with the angels.

We were so blessed to have been given the chance to live, if only briefly, in the presence of this amazing little girl. 

You didn't have to be around her long before you were awed by her intelligence and boldness.  The mere sound of her sweet little voice would captivate your attention. And that beautiful grin of her's was undeniably contagious... just take a peek at one of her pictures for proof.

A few weeks ago Katie Anne, Bennett and Diana came to the Ronald McDonald House to celebrate Cohen's birthday with us. It meant so much to us to have them come, especially since Bennett had not been back since she left for home last winter.

Katie Anne wasn't sure how Bennett would react to going back but when they pulled up to the house she told her mommy, 

                   "I'm not afraid at all."
Bennett helping Cohen open his presents.
 They weren't there long when Bennett noticed Cohen's backpack for his TPN. She tugged at me and said words that will echo in my heart forever. Although, they were very simple words... they represented so much.
 "I used to have a backpack like that... WHEN I was sick."
Katie Anne gave a chuckle and said, "Yeah, WHEN she was sick."

The beauty I found in that moment was that Bennett was no longer living in her illness. She no longer saw herself as sick anymore. 

What a blessing to know that in the eyes of this beautiful little girl her illness was a thing of the past and all she knew at that moment was joy. 

When they left Cincinnati her parents were forced to make an unimaginable decision.  

Their decision meant discontinuing extremely aggressive treatments and taking Bennett home to enjoy whatever time they had left with her. 

Doctors told them that they would most likely have only a few weeks to a few months left together... but God had a different plan.

At the time they had no idea if they were making the right decision for their daughter, what parent would, but that prayerful decision proved mightily to be the right one.

Their decision ended up allowing Bennett to be Bennett again. She got her spunk back and was able to live in a world free of hospitals and medical treatment again. They took trips together and spent hours playing, cherishing every moment they had together. And when she had a bad day... she was able to retreat to her own room with her own toys... She had her coveted independence back.

It was the faithfulness of her heartbroken parents that gave her those gifts.

December 13, 2011- October 26, 2015

Katie Anne and Billy are amazing parents, who have chosen to share the beautiful story of their little blue-eyed girl in hopes of helping others. 

And OH how Bennett's story has done that.. and so much more. The light that shined  from this little girl has brought joy to those who knew her, hope to those who hurt, and compassion to those who have never walked this kind of journey. 

Because of Katie Anne and Billy's unwavering faithfulness Bennett's light will continue to shine farther than anyone could have ever imagined. Lives have... and will continue to be touched by the legacy of this beautiful little girl.

Make no mistake about it, Bennett's light has not gone out, in fact it is shining even brighter now from it's position in heaven.

How can our aching hearts not be filled with joy when we imagine you dancing with the angels?  I can almost hear you speaking those sweet words again... "I'm not afraid at all."

Now is your time to dance sweet girl... your shining light will forever guide the rest of us towards home.

B is for Bennett

The Story of the Lamp

Bennett's CaringBridge Journal
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Monday, October 26, 2015


I  must confess, the words that follow were written from a place of deep brokenness.

But know that although my heart is heavy and my spirit broken, my faith will never waver. 

Recently, I have felt the tears of mothers that lost their children, I've hugged little ones about to loose a parent, and heard discouraging words from my own child's doctor.  Unfortunately, these are just a glimpse of the heartache that surrounds me right now. But although I am broken... I am not crushed.

"'For I know the plans I have for you,' declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

My heart has ached more in the past few weeks than it has in a lifetime. I vaguely remember the days when I didn't have to think about illnesses and children dying. I used to live in a world where those things were distant concerns that didn't impact my day to day, but today they plague my every thought. 

I hope you understand that my words are real and deep and come from the core of my soul... they are the voice of my brokenness.

And it is because I have witnessed true pain that I cannot remain silent.

I feel compelled to ask you the question that lies closest to my heart. How can we do any of this without God, without the realization that there is something more? 

I have seen God's mighty hand over me and my children, I have felt His presence during fearful moments and rested in His reassurance of a better tomorrow.

And though I have searched thoroughly, I have not been able to find any earthly resource that can offer me those things.

Yet, still I hear and see others who feel this faith is merely a weakness on my part... that there isn't really anyone out there listening to my prayers... that my faith is a crutch to get me through difficult times.

But let me ask you this... who has more at risk, the one who believes and is right... or the one who assumes there is nothing more, denying the ruler of the universe and choosing to  live only for this brief moment in time?

If I am wrong than I have lost nothing, but if I am right.... then I have gained eternal life.

My gain is True Life... not this painful earthly existence.

My gain... is a greater joy than can be found on this side of heaven.

My gain is an eternity filled with peace... no more fear or suffering.

My gain is a reunion with all those that already wear their crown of jewels... and a spirit that never experiences death. 

What do you loose if you search for the truth... listen to your heart and seek out a bigger purpose for your existence? 

You were created. You have a purpose. You were intended for so much more.

What you have been searching for your entire life... can't be found in any of the things this world has to offer. 

You will not find your peace until you find your maker. He waits for you and your pain... and He longs for your love.

"Come to Me, all who are weary and burden, and I will give you rest. "Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. Mathew 11:28-29

It is through my brokenness that I am truly healed. It is because of my weakness that I can be strong. It is by His grace that I have purpose. And although I have felt great pain along our journey I have received unimaginable blessings each and everyday. 

My eyes have seen the wondrous gift of His love through the miracles that surround me daily.

Make no mistake about it, there is HOPE and his name is JESUS.

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