Tuesday, March 24, 2015

A New Journey

The blog has been silent for a long time not for lack of material but mainly for lack of time.  But we are about to start a new journey and I thought it an appropriate time to breath life into this old blog.  

Many of you know that Leo does not eat by mouth.  He is entirely g-tube fed for all of his nutrition. Leo has received feeding therapy through Early Intervention and now through his school.   You don't realize how difficult it is to teach someone to eat until you actually try to do it.  Leo does not know how to swallow.  He wants to eat.  He attempts to eat.  He pretends to eat.  He makes a huge mess pretending to eat but the fact is he just does not know how to swallow and move the food to the back of his mouth.  He also does not have the endurance for eating as he sees no purpose to it.  He is never hungry with a g-tube.  

Jordan went with Leo and I to Hershey today and we made a quick trip to Chocolate World!

Psalm 139:14

"I praise you because I am fearfully and wonderfully made your works are wonderful, I know that full well."

God has definitely designed us in a very intricate way especially when it comes to eating and swallowing.  

The time has come.  No surgeries on the horizon.  Leo's health is stable.  So today we took the first step to enroll Leo in what I am calling Eating Boot Camp.  Today, Leo had an evaluation at the Hershey Feeding Program.  Within minutes, Leo had them wrapped around his finger.  He is such a little flirt. They saw Leo's potential as he attempted to eat.  Leo was accepted into their program.  

Now the hard part-getting insurance to agree that this program is necessary for Leo to learn to eat. I spent some time tonight sending emails to some of Leo's therapists and doctors asking them to write letters in support of Leo going to Hershey.  Once we have letters of support the program will contact our insurance and negotiate payment.  

Then comes the hard part.  Leo and I will be at Hershey for 3-5 weeks from 9 to 4:30 Monday through Friday and staying at the Ronald McDonald House at night.  We hope to come home on the weekends.  The only way this will be remotely possible is because Mom-mom has agreed to move in and help Jeremy out during the week.  

While we are there they will be able to decrease his g-tube feeds, allow him to feel hunger and also have 8-10 feeding sessions in a day. They will monitor input and output and also his weight.

The main reason I am reviving the blog is so that as you follow this journey to Leo learning to eat you can pray for us. We would appreciate prayer that insurance will approve the program with no problem. We would also appreciate prayers as we figure out how to navigate life at home while Leo and I are away. 
While there we stopped at the Ronald McDonald House and got a tour.  It is a beautiful house.  We are hopeful that we will be able to stay there while we are in the program.

1 comment:

  1. It sounds like a wonderful program. I will pray that all the HMO details will fall into place for such a necessary training. So many details to arrange...such a loving God to provide for Leo and his family.