Growing Pains

Ethan is close to his three months of age and we are filled with joy to see the beautiful development of new life. He recognizes certain nurses by the sound of their voice. He enjoys music and toys like other babies. Ethan is attentive, smiles when he is happy to see mommy with his bottle and recently enjoys figures of animals projected onto a home made screen set up by his nurses. Unfortunately with his beautiful developments comes the heightened risk of making his skin condition worse. His constant moving has helped form many dime sized blisters on his body. The comfort of feeling his hands on his face has led to more than five blisters. We apply medihoney on his face wounds to stimulate faster healing and try to prevent scars while fighting bacteria. Our short term goals are to finish off the antibiotic treatment Ethan is receiving for a blood culture that came back positive for infection on the 16th of January. He will be receiving the antibiotic treatment through the 27th even though his most resent blood culture has tested negative with no bacteria growth even after 3 days. After his treatment he will undergo the G-tube procedure and we will be instructed on how to feed him using the appropriate methods. We will have to find a good balance between how much Ethan is comfortable with eating by mouth and how much we will be placing through the tube. Our long term goals are to have Ethan evaluated by the experienced EB bone marrow transplant team in the University of Minnesota. We have contacted the team and have faxed over Ethan’s medical records. We are now awaiting on a consultation appointment to develop a relationship with the team with hope that Ethan can become apart of another bone marrow transplant success story. In all of this, we strive to not be subject to narrow tunnel vision and keep the whole picture in mind. It is more difficult than I originally inquired but we try to not stay down when we are stomped on by daily disappointments. We strongly believe that the Lord God Almighty has big plans for each of us. Our struggles condition our faith for future trials and responsibilities. When I think of the unfortunate probability my son has of living, I am well aware of the potential this circumstance provides for Gods glory to be manifested for all of us to have the honor of witnessing. God’s wonders carry more weight than what has been established to be true in the physical world. I feel blessed to understand in depth, the facts about the disease my son has and how everything works, in order to best handle each obstacle and make the best decisions for his health. The more your understanding is of how things work in the physical world the stronger your faith needs to be because God’s miracles do not fit into our limited understanding. When we see wood that has been soaked in water, the more we understand how difficult it is for those logs to be set on fire the stronger our faith needs to be to look beyond the physical and believe that God can do it, even though, those around us can only explain why it can not be done. One simple prayer from a person of faith and God will send fire down from heaven and set those logs on fire. This is the level of faith that we are being conditioned to have. God is alive and working through Ethan. In less then 3 months God has moved the hearts of thousands through Ethan, that’s more than most of us can hope to accomplish in an entire life time. It is not easy to be a light for the world or to be a servant for the sake of Love within our nations, to think of others before thinking of your own wants and needs. But we have been called to do this against what we desire. I desire to hold my son and watch him thrive. I desire to see my son’s journey to becoming a man. If my children could live past my own expiration date than I would have what I desire most, but what we desire most means nothing without a relationship with God, the Love, the Joy, a purpose, the very meaning of life. So I will place all my desires in the hands of the Lord, and thank him for what I have, which is much more than the nothing I was born with. We are not alone in our difficult circumstances and we are not the first or last to see our innocent loved one endure this disease but we will never go without Love from our father in heaven so we hope you are as encouraged as us to face your daily struggles, acknowledging that there is always a way, it only take the right mindset, an appropriate positive attitude derived from thanksgiving and appreciation and a relationship with God so that you may experience the Love that makes it all worth it.



9 thoughts on “Growing Pains

    1. Continuing to stand with you. When our son, Jesse was diagnosed with a terminal cancer in 1976, we found ourselves at Children’s Hospital at Stanford. He lived.We walked the halls as you do, now it is known as Lucille Packard. Jesse lived, despite the prognosis. Continue to dare to hope. We stand with you and Ethan.πŸŒ„D&K.


  1. I Gatta say I have been so moved from the moment I read about you baby boys story . After reading this blog , I have felt the love you have for our lord , giving me more hope for our world . It’s a hard life , and some don’t have it as good . It is so beautiful to me how strong your bond is is with GOD even after all this pain , GOD is always good ! Thank you for giving me eyes to appriciate what I have around me I am to a mom and I can’t give Anough thanks to our lord for giving me the appertunitty to expierance motherhood stay strong , you are an amazing mother !


  2. You n your angel have inspired my life profoundly . I am praying n will continue praying for baby Ethan n you n hubby. God bless


  3. Baby Ethan we are praying for you! You and your family have touched my heart! May God’s peace that surpasses all understanding be w/ you, your sister, mom & dad!


  4. Thank God for Ethan and his family! Their sacrifice will continue to be a salvation for many. I have been moved and my faith abounds! RIP Ethan as I know you are surrounded by loving people like my husband, Andy and my Grandma Neoma!


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