Journal

Journal entry by Tiffany-Jerad Norman

Our family had a great weekend celebrating Myron & Cindy's (my in-laws) 45th wedding Anniversary at Camp Quaker Heights in Eldora.  There is something about that place that is so special and peaceful.  The weather was perfect and it was a time for  just relaxing and spending time with family.  Jerad and I were able to get away for a few walks while we were there and God's presence was so real. We both have so many fond memories of that place including, family camp, young adults retreats, and family gatherings.  To be honest I didn't really want to leave there and face the reality of this week and preparing for Jaden's upcoming surgery.  Sometimes the unknown is difficult because we are not in control.  The path we walked this weekend was long, uphill, and exhausting but every time we became tired we ran into something beautiful.  It reminded me that in the trials God always shows up and never leaves us.  He knows the big picture and we are called to trust and have faith in our tour guide.  I have included some pictures we took along the way that were breathtaking and reminders that God walks with us through the uphill battle of the unknown and also reveals to us His beauty along the way.  We ask for your continued prayers as we prepare for the unknown in the upcoming days!!


Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.  James 1:2-4

Journal entry by Tiffany-Jerad Norman

We received the call this week from Mayo Clinic letting us know that Jaden will be having surgery to remove the thickening and to relieve the pressure from his heart and increase the blood flow.  They will also be placing and ICD (implantable cardioverter defibrillator).  The ICD is a preventative measure to detect if Jaden develops an abnormal heart rhythm and will deliver an electric shock to restore it back to a normal heartbeat.  His pre-op physical will be in Minnesota on Friday July 13 and his surgery is scheduled for Monday July 16.  It will be an open heart surgery that will take 3-6 hours.  We are thankful that they are getting him in soon because Dr. Ackerman said it will be about a 2 month recovery.  He should have a good month to heal before heading back to school.  There are a lot of other things that Jaden would rather do with his summer but they say that his quality of life should improve quite a bit once he is fully recovered. As I look at the picture that I placed of him on this page in his baseball uniform, I am reminded of how good God is.  Jaden has always been told that he could never play sports and now he is able to play baseball.  In the big picture we know that sports are only a small part of life but to a 14 year old it is important. This is something he can add to his answered prayer list.  We are grateful for God's constant presence and comfort through this situation. Please pray for us as we continue to process what things will look like and pray for Jaden as he is pretty nervous about everything.  Thank you to so many of you that have walked with us through this journey and continue to support us!!
Jaden’s Story

Site created on June 28, 2018

Jaden was diagnosed at age 4 with Hypertrophic Cardiomyopathy during a routine preschool check-up.  Hypertrophic Cardiomyopathy (HCM) is a thickening in the heart muscle (usually located in the left ventricle) which affects the blood flow to the heart.  It is usually considered genetic, however, we have not confirmed it anywhere in our family yet.  Jaden was initially diagnosed by Dr. Chandramouli at Pediatric Cardiology in Des Moines .  In 2008 we decided to get a second opinion at the University of Iowa where the same diagnosis was confirmed . In 2013, we decided to bring Jaden to Mayo Clinic in Rochester because they are considered a center of Excellence for this disease and have an actual HCM clinic.  From 2014 until now he has been followed by Dr. Erik Edens at the U of Iowa.  We recently we received a letter informing us that he would be leaving the U of I so we decided to bring Jaden back to Mayo for his yearly check up and see Dr. Michael Ackerman. He is a doctor that has spent a lot of time studying HCM and the genetics involved with the disease.  He has also spent a lot of time assessing the risk of sudden cardiac death in children. We were seen by him on May 30th to find out that Jaden's disease has progressed enough to need surgical intervention.

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