Baby Jeren's Journey to breathe

Jeren was born January 11, 2013 to Jennifer and Justin Scheff. His birth was much anticipated to make Jaxon (age 4) a big brother and friend for life. Due to genetic abnormalities little Jeren has spent most of his life back and forth in the hospital not getting to spend much time with his brother. He has been through 7 surgeries, had many procedures, and continues to fight. More surgeries are in the future to keep him developing. He has been diagnosed with: A breathing abnormality called Pyriform Aperture Stenosis (small nasal airway) that causes respiratory distress, Ocular Albinism which is the lack of pigment in the back of the eyes allowing vision. This disorder has caused Jeren to be blind with a corrected vision of 20/1000, Kidney inflammation causing an enlarged L kidney and ureter, and a Seizure Disorder due to abnormal brain activity on the L interior lobe. Myoclonic episodes, and night terrors are resulting from the stress and medical interventions. All of these abnormalities are results of a genetic deletion of the short arm of the X chromosome. This includes a complete deletion of three genes. After genetic testing, geneticists have determined this type of deletion and connection between the small airway and the eye disorder have not been discovered. Research and journal articles are underway to help families in the future. As of now, future medical issues cannot be determined as no research exists. This family is under much emotional and financial stress. Trying to plan for the future care of Jeren and continuing to provide for the needs of the family, we are asking you to be part of their village...Remember, it takes a village to raise a child (African Proverb).

It's not only children who grow. Parents do too. As much as we watch to see what our children do with their lives, they are watching us to see what we do with ours. I can't tell my children to reach for the sun. All I can do is reach for it, myself.
-- Joyce Maynard
Anger is welling up inside me. My adrenaline has been pumping hard, my teeth hurt from clenching, and I know the next person to say something wrong may get an ear full even though it's not their fault. I hate feeling this out of sorts with my emotions. I hate feeling angry and frustrated. I hate watching my baby suffer. I hate that every little step forward is a roller coaster ride backwards. I hate that my family is constantly on edge. I hate that we have been in and out of the hospital since January. I hate that my boys can't be at home together. I hate that as soon as we relax we are back on edge. I hate that my genetics passed pyriform and ocular albinism on to my kids. I hate that there isn't a magic trick to make this all better. Each time we end up rushing back to the hospital failure seeps through my pores. What could have we done better? Are we advocating enough? Are we making the best decisions for Jeren? The questions go on forever. My brain thinks and rethinks and brainstorms solutions....and then starts the pattern all over again. I am a thinker and a brainstormer. I like the control of finding an answer and solving the problem. I like to take care of everyone and keep everything balanced....with this situation I simply can't. My easy going happy little boy changes in seconds to a frustrated, arching, drooling, posturing mess. He puts his hands on both sides of my face and begs me to do something to fix his uncomfortableness. He trusts me to help him. Tears running down my cheeks in anger, I have to tell him it will be ok when I really don't know the answers. This is the time I start begging and bargaining with God...again. I pray as I bounce my little one up and down in my arms hoping the rhythm of the bouncing and the sound of my heart will help him relax. Up..down....side...to side....up....down...side...to side. Over and over until my arms burn and match the strength of the conversation God and I are having. I can't and won't give up this battle to give Jeren a normal breathing life. I won't let him feel my spirit sinking. I want him to keep fighting the battle so he can follow God's plan. I want to be his comfort until he learns to ask God himself. Drool is running from his little mouth down my shirt onto the floor. He is working so hard to bring air into his lungs. He closes his eyes for a second to refocus his crying. He takes a strangled liquid sounding breath and tries to force air through the stent with no luck. He is angry too. His little toes kick and pound against me trying to let me know he is struggling. "I know little one. I know...Mama's struggling too." Keep us in your prayers! xoxo The Scheffs