T- 3 days

T minus 3 days until we hop on an airplane and travel to MN to visit the Mayo Clinic. I have been feeling a mix of emotions as the time draws nearer. I mostly feel deep gratitude for how smooth and evident the Lord’s hand has been all over this process. It started with a conversation with a friend that led me to think about going. I have known about this specialist there that has done research on our rare disease. Just the fact that she has seen patients with our condition is helpful. I called Mayo Clinic thinking I would have to jump through many hoops and many phone calls to make this trip happen. This was not the case. The First Lady I talked to took down my insurance info and set everything up while on the phone. She registered me and told me to send all my medical documents over.  I thought this next step would be difficult so I went in person to two of my doctors to see about getting my medical files. Both places had me sign a form and printed them out right there on the spot. Whaat??? I expected to be directed to another building wait forever to sign papers and have them mailed. Nope not the case. I scanned all my documents and explained to them that I wanted to meet with a certain Neurologist at Mayo who had expertise with our disease. I told her we were willing to fly out and could spend a week. The doctor then called me herself and got more information about what we hoped to achieve at our visit. She then said she would set up apts. and procedures, and labs for us and looked forward to meeting with Both Noah and I. We got our apt. Schedule soon after that. Not only was that process smooth but we found out that Noah’s transplant Fund would cover the expenses for our trip. The Lord has provided for everything and I feel such deep gratitude. I wish that were enough, but I also feel very anxious. I’m nervous for some of the answers to some tough questions we have. Nervous for new information. At the same time I’am Hopeful. Hopeful to see someone that understands this disease and could possibly give us some encouraging news. New possibilities. I’m trying to pray boldly believing that God is big enough to give us some relief from the hardship of this disease if he chooses. My head knows that I should be ok either way trusting that his plan is Better than my own but my heart wants some relief.

Would you all pray for this trip? Pray that we would get answers regarding Both of our heart conditions. That we would get some clarity on Noahs lungs, that we would hear some encouraging new advances regarding our muscle disease, that we would get good encouraging answers to our questions. That we would process information well. That we would help Noah process things well. That we would be a good support to one another. That we would lean on the one who is bigger than disease and hardships.  

I was encouraged this week by Joseph’s story in the Bible. The suffering of Joseph physical, mental, and emotional agonies had been allowed by God so that Joseph could fulfill God’s plan to save many lives. I want to have a response of willingness, faith, humility, and meekness so that God can use me to fulfill his plan.  We would appreciate your prayers so much. Hoping to blog updates for you all during the week.

Melody