It's been a LONG week

Well, we're almost at the end of the week and Eli's projected discharge date is June 14. He has been so brave and strong these past few weeks and has made so much progress. But it's been a LONG week.... But the good news first.

Eli has only been eating Stage 2 Gerber purees over the past several years. We've never been able to get him to eat table foods. The psychological side of it, the PTSD symptoms of remembering the pain that he had in the beginning associated with eating, has always played a factor in Eli being too afraid to eat anything but Gerber. Through his hard work and the dedication of the therapists and team here at OCH, Eli is TOTALLY off Gerber! All of his foods on his menu are now blended, real table foods! It is so exciting and I'm so proud of Eli and the progress he has made!

So now for the bad news.... Eli still really struggles with the fear aspect of eating. And I totally understand. Food has never really been pleasurable for him. And Eli is very smart; he understands that eating the wrong thing could result in a lot of pain or even be fatal to him. Because of that, he has hit a bit of a brick wall as far as his progress. Something as small as his food looking different, having a different colored speck in it, having a chunk that didn't get blended down, or his two separate foods touching each other can set off a total meltdown. Over the past week, he's refused at least one meal almost daily. And because of that, his weight has dropped. He was up a couple of pounds, but at his last weight check, he was down almost a pound. It may not seem like much, but for kids like Eli, every ounce counts.

And it's hard to not get frustrated with him. When he pulls his head into his jacket and refuses to eat, then lays his head on the table sending spoons and bowls of food pouring all over the place... I struggle with not getting onto him. Then he looks at me, with tears rolling down his face and all he wants is for me to hold him... I have to fight against every fiber of my being to not wrap him in my arms and tell him that it's all going to be okay. You see, OCH has a very strict Cognitive Behavioral protocol with feeding. Meals are filled with comments of "Good bites!", "Great swallowing!" and Awesome taking your drinks!", as well as comments of "Take your bites or the game goes away.", "Take your drinks and you can have your music back." and "Chew and swallow to your tummy and you can watch your show." Words and phrases are very restricted in order to keep from rewarding undesirable behaviors with positive reinforcement of attention. It seems harsh, but it really does work. But that doesn't mean it's easy for either of us.

My first time feeding Eli this week was met with a meltdown; total refusal of his food and tears... and sobs... and pleadings for comfort. I fought back tears through the entire meal. Then when we came back to the room and Eli quickly fell asleep, as he often does when he's overwhelmed, I had my own little meltdown of tears and sobs and wishes of comfort.

This process has not been easy, but we have seen our little victories. Eli is down from 10 hours of overnight tube feeds to only 6 hours. Gerber is out the window, something I thought we might never achieve. And each day, we are one step closer to coming home with Eli progressing in his eating. I fully expect more tears and struggles and meltdowns along the way. But we're making progress. ELI is making progress. I don't know many adults who could go through what he has and still have a smile on their face, but he does it every day. And at the end of the day, he's going to sleep with little successes under his belt.