WEEK 1

So we survived Evan's first week of the intensive feeding program!!!! It was only 2 half days, but we survived it:) The social worker was just happy to see us come back the next day.

So why is Evan in this therapy is a question we get asked often. It's very hard for people to understand why a child won't eat. The older generation looks at us like we are crazy when we say Evan won't eat. We hear comments like "just feed him ice cream" "hand him a chip, he will eat it" "just don't feed him, he will get hungry enough and eat". Let me just tell you all....Evan WILL NOT eat no matter what you put in front of him or however long you don't feed him. He's actually happier if you don't feed him! There is a window in time where you learn to eat and you associate positive thoughts with eating and Evan missed that window. He associates things going into his mouth with negative thoughts. We had to shove a tube down his nose and throat for 10 month at least weekly (sometimes multiple times a day) so that's what he remembers. He also has reflux and aspirates liquids (small amounts of fluid go into his lungs while drinking) so he sees eating as very painful. Also, you and I know that when we eat with our mouths, our hunger pains go away. Evan doesn't know this feeling because he sees getting tube fed as making his hunger pains go away. So we have come to a dead end with feeding Evan and need to take the more intensive approach.

So this is what brought us to the intensive feeding program. For those of you that don't know, the intensive feeding program is run by Spectrum Health and is at the Mary Free Bed campus in Grand Rapids. It's five days a week for approximately 6 1/2 hours a day for 8 weeks. Evan has feedings at 9:30, 12:30, and 3:30. Only Ryan and I can take him but they will allow my mom or whoever else may feed him to go to caregiver training. For the first 3 weeks, Ryan and I are not allowed to be in the room for Evan. We sit behind a one way mirror and watch and listen to the therapists work with Evan. They are going to start all over with him and try and take away behaviors he has learned. Thankfully, he doesn't have many negative behaviors like swatting, spitting, or screaming...he is very passive and just keeps his mouth shut tight.

The first day, I fed him first and Ryan fed him second. The therapists wanted to watch us with Evan to see how he is. He drank like a champ but would only take approximately 2 bites of food in the two feedings. The next day parents are removed and the therapists take over. They didn't do any of their "protocol" feedings, they just wanted to start building a relationship and trust with Evan. So he hasn't experienced the new way of eating yet. Friday, he had his first melt down. And if you know Evan, he does not have melt downs! He was throwing himself backwards and sobbing. All the moms that were there (there are 8 total families in the program right now, Evan is the newest admission) told me it's to be expected. The therapists told me that there are 3 things kids can control: eating, sleeping, and toileting. We are taking away Evan's control of eating and he is not liking it. We may see a different Evan than we are used to:(

So it's going to be a long 8 weeks. Gia is not allowed there so time with her is going to be limited:( My work is being amazing and allowing me to take off 1 day a week so Ryan only has to miss 1 day a week. We've been through a lot and for a lot longer so we can do it. And the end result will be worth it!

So I will keep this blog updated for those who want to follow along on our next journey with Evan! I have full faith he will do amazing like he always does. Always accepting prayers to help us along the way!

Lindsey