Thursday, February 16, 2017

Why Are People Committing to Eating Ice on February 28th?

Why would people forgo delicious treats and instead choose tasteless ice to eat on February 28th?

Its simple, because despite all of the negativity that we see bombarding our screens and filling up our minds, the majority of people are still good and caring with a deep desire to help each other.


Can you imagine living without tasting anything?

Let me introduce you to an amazing little boy that lives everyday without ever taking part in the most natural of all experiences. He lives without eating. At four years of age he lives only on a nutritional life support given to him through an IV, nothing enters his digestive system but ICE. 


When our family gathers around the table at mealtime, he sits and eats his ice, enjoying it as if it was food. Cohen reminds us everyday to appreciate the little things. He never complains, in fact he gives thanks for his ice before eating it and after each bite he says, "Mmm yummy."

February 28th is Rare Disease Day, a day set aside to remind the world that there are rare diseases equally devastating as many of the well-known ones. Most of these individuals have had long hard journeys seeking a proper diagnosis and still others, like Cohen, may never know the name of the monster that attacks their bodies. It takes an average of four to seven years to finally get a proper diagnosis and even then there is little hope for a cure due to that lack of understating of these illnesses.

As difficult as it is to imagine, there are people dying from diseases that cannot yet be identified by science or are far to rare to have success with research funding. Many of these people have been told, just as we have, that, "We are waiting for science to catch up."

Committing to eating ice may seem like an insignificant act of kindness to most people but to one little boy who lives life in isolation, it means a moment of inclusion. It will provide great encouragement to him and others who experience this kind of aloneness. If one person asks the question, "How can I help people living with a Rare or Undiagnosed diseases?" then this challenge was a success.

I remember living in a world where I didn't have to think about children suffering, nor watch friends anguish in silence. But that world is not the reality for the estimated one in ten people living with rare diseases. Let's make them feel valued on February 28th and break their silence. Eat Ice. Spread Awareness. Join the fight against Rare and Undiagnosed Diseases.

Take part in the, "I'm Eating Ice for Super Cohen" Challenge at Super Cohen's Crusade FaceBook Page

Get creative with fun ways to eat ice, post your pics and Cohen will be the judge on February 28th


Please visit  Rare Disease DayGlobal Genes or Rare and Undiagnosed Network for more information on rare diseases and how you can help.


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Thursday, February 2, 2017

Groundhog Day

Forget the little critter that pops it's weather predictive little eyes out of the ground to break the news of a longer winter to the world.  It's the iconic movie, Groundhog Day that fills the minds of my generation, when we think of Feb. 2.

Even the idea of repeating your BEST day, over and over again seems annoying and frustrating but living a bad day over and over again, seems unbearable.

Exactly one month ago to the day I sat in this very same surgical waiting room waiting to get my sweet boy back again. These walls are way too familiar, as are these feelings.

He is only 4, but....

14 15 times I have gone through Pre-Op evaluations with nurses and doctors.

14 15 times I have sat for hours playing and distracting him from the monotonous passing of time while we wait for our turn on the sterile stage.

14 15 times I have watched him bravely endure the details of this day.

14 15 times I have walked him through the cold double doors pretending to be listening to the small talk of the nice orderly.

14 15 times I have stood and smiled at a room full of blue hats and said, "No I don't have any more questions."

14 15Times I have watched his beautiful eyes roll back into his sweet head while he drifted off to assisted sleep.

14 15 times I have heard the words, "Don't worry mom we will take good care of him."

14 15 times I have kissed his little head and told him I loved him as I turned away, leaving him with a room full of strangers.

14 15 times I have walked down the cold hallway swallowing my tears, trying to pretend I was okay for the benefit of my concerned escort who asks, "Are you doing okay, mom?"

14 15 times I have felt an enormous lump in my stomach while I waited for his sweet little name to filter through the air for my turn at an update.

14 15 times I have been called into a little room to find out that we now have more questions than answers.

14 15 times I have waited to have him back in my arms, yearning for the moment that I get to stand by his bed while he slowly comes back to consciousness.

14 15 times I have wondered when does life get easier for my beautiful little boy.

14 15 times we have endured this Groundhog Day... we're ready for a new day.



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Wednesday, January 11, 2017

How Much More Can Our Hearts Take

I used to live in a world where I rarely had to think about sickness affecting children, let alone mourn the loss of them. I miss that world. I'm not sure how much more our broken hearts can take.

When Cohen learned about his dear friend Dylan passing into the arms of Jesus he collapsed onto my lap sobbing, "Not another friend!" These past two years have been difficult. We have had to say good-bye to so many friends and have others that are still fighting for their lives. 

Yes, "Another" sweet friend of ours has battled mountains that no child should ever have to and experienced life like many never will. And like so many of these young beautiful souls Dylan too created a legacy, in almost 13 years, he impacted the world more than most of us ever will.


We met this incredible little guy when we were first admitted to CCHMC three years ago. Daily, he would come and stand at our hospital room door trying to lift Cohen's spirits. If Cohen would cry he would come to check on him, bring him gifts, or offer to play with him in the hallway. These two bonded immediately. Neither can eat food which allowed Dylan to understand Cohen's life at a level I will never be able too. 

Last winter, after Cohen had gone into acute liver failure the two were once again on the same floor.  Almost everyday Dylan had a new gift for Cohen, encouraging his love for reptiles and dinosaurs, and spoiling him rotten. Dylan received a remote control car for Christmas and gladly shared it with my grabby little toddler, never complaining or fearful of him breaking it. I always knew when Dylan had visited Cohen while I was away by the sweet lingering smell of his famous cologne. His beautiful spirit was definitely beyond his years.

Many of Dylan's organs may have weakened over time but his heart was surely not one of them. Dylan was the most caring, loving, little boy that I ever have had the privilege of meeting. His roots run deep because of the dedication and love his parents Diana and Terry have instilled in him. It's no wonder Dylan was such a gift to others, he witnessed his parents modeling kindness daily.

Hospital days are difficult but those trials create bonds between families. Terry and Diana never shied away from loving on others in the midst of their own trials. Many times Diana would come and rescue me from my stress and fearful thoughts with her sweet smile and loving hugs. I came to look forward to our mornings by the coffeepot as we chatted through our sleep deprived foggy minds.

Terry and Diana, you are incredible examples of faithfulness. You have shined Dylan's light and shown the world what TRUE faith looks like, I am honored to know you. I will never forget the time when many of our families, that share this incredible bond, stood and prayed together at the RMH for Dylan and Mackenzie. God's arms were around us then just as they are now. 

I know that nothing can numb the pain of no longer hearing his sweet voice or holding him close, but please know you are not alone and you are loved.

My heart hurts so deeply for you right now. I am clinging to the hope of tomorrow, grateful that this world is not the end. My peace comes from knowing that one day we will be reunited with your sweet boy with the biggest heart.

Dylan, you left an amazing legacy for all of us to live up to. You set the bar high by your example of caring for others, even in the midst of your own struggles. You have challenged the world to live as you did, I pray we make you proud.
Please lift this wonderful family up in your prayers. You can see more of Dylan's amazing legacy by visiting his Facebook page Pray for Dylan Trevino 


        
"Me miss you Dylan." ~ Your little buddy Cohen
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Friday, December 30, 2016

Life in the Undiagnosed World: Our Journey for a Diagnosis

“Take him home and try to give him as normal of a life as possible.”

What is normal? For one extremely, amazing four-year old little boy named Cohen, normal, means absolutely nothing can enter his body to nourish him. He survives solely on nutritional life support. It means being hospitalized for low grade fevers, extremely aggressive medications to combat infections, and being confined to an IV pole everyday. Normal, means his time outdoors is limited, no swimming, or rough little boy games. It means, leaving the house with a heavy backpack which contains a large volume of infusing fluids. This is Cohen’s reality and he deserves a better normal.

This brave little boy’s entire life has been full of invasive procedures and hospitalizations. All attempts to feed and medicate him through his digestive system have failed, ending with violent vomiting and internal bleeding. His body can only tolerate ice chips, which must be vented back out of his stomach through a gastric tube. Due to lack of motility, even small amounts of water can cause hours of painful episodes where he screams, begging for help. An extremely large colon and intestines are another source of his stomach aches, requiring continuous venting of air pressure from his belly to reduce discomfort.

Two years ago, Cohen’s growth and development reached a critical point and his doctor placed a central line (permanent IV) in his chest. It is through this line that Cohen receives TPN (total parental nutrition). His daily caloric intake is measured through blood draws which ensure all of his nutritional needs are being met. This medical nutrition is administered through 24 hour infusion, seven days a week. Without this life sustaining medication, Cohen could not survive.

Cohen’s body is in a constant state of inflammation and any illness can send his immune system into extreme overdrive, shutting down organs in its path. Cohen recently had emergency surgery to remove his severally inflamed gallbladder which was dangerously near perforating. In 2016, he went into acute liver failure from an infection that progressed quickly, wreaking havoc on his little body. Therefore, even low grade fevers must be met with aggressive medications to prevent extreme inflammatory responses and sepsis. Since he becomes ill so quickly he must be transported by air. Cohen's medical team is six hours from our home and it would be to dangerous to drive that distance during an acute situation.



Severe food/medicine allergies and intestinal failure are just a facet of Cohen’s illness. His list of symptoms and diagnosis cross over into every system in his body. Genetic sequencing revealed two additional diseases, Familial Mediterranean Fever (FMF) and Factor V Deficiency (bleeding disorder). However, Cohen's physicians do not believe these diseases are his main illness. He has also been diagnosed with dysautonomia, which is an umbrella term used to describe a lack of communication in the autonomic nervous system. For Cohen, this means he has fatigue and issues with temperature regulation, making it challenging for him to be outside. It means he screams in pain when touching snow or sweats profusely in warm temperatures. Other evasive health issues include; antibodies in his platelets,  pancytopenia (all blood systems low, making blood transfusions and iron infusions necessary), hands and feet turning blue, chronic pancreatitis, as well as malacia in his upper and lower airway and nodules on his throat and vocal cords. 

Normal for Cohen means heartfelt conversations with amazing doctors which begin with, “I know you’re going to ask me some really tough questions that I am not going to have the answers for, and I am going to feel awful about it.” It’s hearing the words, “Everything we try for him is experimental at this point.” Normal, is not having a plan for lack of a diagnosis.

Our team of care givers includes gastroenterology, hematology, pulmonology, immunology, ENT and rheumatology. Although, this is an amazing team of physicians, at one of the top children’s hospitals in the world, they don’t have a name for Cohen’s illness. His care is coordinated between all of these services and their resources, but they are limited by the boundaries of modern medicine. 

Without a diagnosis, we have no prognosis or plan of care. Our best hope is to keep him as well as possible. For now we simply pray that the extreme measures used to nourish him, do not eventually destroy the same organs they are currently keeping alive.

Physicians have no more medical intervention to offer him. No more treatments. No better plan. We find ourselves with an unclear picture of Cohen’s future. Currently, our entire care team agrees that Cohen’s illness has yet to be identified by science. 

What does all of this mean for Cohen? We wait, hoping and praying that the science of tomorrow will arrive today.

When Cohen’s disease finally gets a name we will have hope for a better treatment plan and the possibility of a cure. For now we simply pray that our story connects with individuals who hold the possibility for answers. Unfortunately, until that day arrives he will continue to be a member of the undiagnosed world and remain on a journey for a diagnosis.

“Take him home and try to give him as normal of a life as possible.” The ugly truth is although we are frustrated and hurt, we know these words come from well-intended and equally frustrated physicians, not because they want to deliver this kind of news, but because they have no more options at this point.


This is Cohen’s normal. My question is, “How can we make it better?”



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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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