Sunday, May 17, 2015

Water on Our Wood

Lately, we've kind of had a string of not-so-great news. To be honest, I started feeling a little defeated as Todd and I spoke about the results of Cohen's biopsies from his lung bronchoscopy. And then somewhere in our conversation my wonderful husband reminded me of an amazing and frequently overlooked Bible story.

His words fell over me like a blanket of comfort, lifting my spirits and changing my perspective.

Todd said, "Remember the prophet Elijah? This is just more water on our wood, honey. Let them soak it so all the world will see just how remarkable our God is when he lights our fire; leaving no doubt as to who is responsible for our miracle."

Later in the day Cohen started running a fever. Because he has a central line he must be admitted and treated for a possible line infection. And now we must sit in the hospital for three days, waiting to see if his cultures grow bacteria... just more water on our wood. 

The prophet Elijah had a BIG job to do and he did it in a BIG way. He devotedly demonstrated the amazing faithfulness of our God, and so will we.

So go ahead and soak our wood 
if it will allow God's 
blazing fire to be undeniably recognized by all!!

1 Kings 18:20-39
20 So Ahab sent word throughout all Israel and assembled the prophets on Mount Carmel. 21 Elijah went before the people and said, “How long will you waver between two opinions? If the Lord is God, follow him; but if Baal is God, follow him.”
But the people said nothing.
22 Then Elijah said to them, “I am the only one of the Lord’s prophets left, but Baal has four hundred and fifty prophets. 23 Get two bulls for us. Let Baal’s prophets choose one for themselves, and let them cut it into pieces and put it on the wood but not set fire to it. I will prepare the other bull and put it on the wood but not set fire to it. 24 Then you call on the name of your god, and I will call on the name of the Lord. The god who answers by fire—he is God.” Then they called on the name of Baal from morning till noon. “Baal, answer us!” they shouted. But there was no response; no one answered. And they danced around the altar they had made.
27 At noon Elijah began to taunt them. “Shout louder!” he said. “Surely he is a god! Perhaps he is deep in thought, or busy, or traveling. Maybe he is sleeping and must be awakened.” 28 So they shouted louder and slashed themselves with swords and spears, as was their custom, until their blood flowed. 29 Midday passed, and they continued their frantic prophesying until the time for the evening sacrifice. But there was no response, no one answered, no one paid attention.
30 Then Elijah said to all the people, “Come here to me.” They came to him, and he repaired the altar of the Lord, which had been torn down. 31 Elijah took twelve stones, one for each of the tribes descended from Jacob, to whom the word of the Lord had come, saying, “Your name shall be Israel.” 32 With the stones he built an altar in the name of the Lord, and he dug a trench around it large enough to hold two seahs[a] of seed. 33 He arranged the wood, cut the bull into pieces and laid it on the wood. Then he said to them, “Fill four large jars with water and pour it on the offering and on the wood.”
34 “Do it again,” he said, and they did it again.
“Do it a third time,” he ordered, and they did it the third time. 35 The water ran down around the altar and even filled the trench.
36 At the time of sacrifice, the prophet Elijah stepped forward and prayed:

Lord, the God of Abraham, Isaac and Israel, let it be known today that you are God in Israel and that I am your servant and have done all these things at your command. 37 Answer me, Lord, answer me, so these people will know that you, Lord, are God, and that you are turning their hearts back again.”
38 Then the fire of the Lord fell and burned up the sacrifice, the wood, the stones and the soil, and also licked up the water in the trench.
39 When all the people saw this, they fell prostrate and cried, “The Lord—he is God! The Lord—he is God!”                                                    
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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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