Thursday, May 14, 2015

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!
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