Week 2

Well we have the first full week under our belt and it was a GREAT week!!!!! The protocol feeds started Monday and he rocked at it! He did so well that they advanced him to actually getting "food" on the spoon on Tuesday:) Ryan was with him on Monday and he kept texting me all day on how well he was doing. I was shocked when I came on Tuesday and saw for myself. I've NEVER seen his mouth open so big. He's like a little robot, they saw Evan open and touch his chin and he opens! AMAZING!!!

So what is a protocol feed? Last week they trial and errored several things to find out what works best for Evan (what seat to feed him in, what utensils work best, and what type of cup to drink out of). At the start of each meal they say "Evan, we are going to eat and drink now. You are going to start your timer and when it goes beep beep you are all done". They have Evan hit the start button on a timer and they begin. The timer lets Evan have an expectation on how long his feedings will last. He also knows that when the timer goes beep, if he is in the middle of either eating a bite or opening his mouth, he's not officially done until he's completed his task. They are very persistent with him and they will not give in to bad behaviors. They have a different approach to bad behaviors in fact. Where you and I will try and convince him to take a bite by talking to him or saying if you take a bite I will do this, they won't even pay attention to the behavior. They say if you make a big deal out of him not eating, he will learn he gets attention from the bad behavior and continue it. Therefore, if he keeps his mouth shut and won't open when they say open, then they keep the spoon or squeeze bottle at his lips and say open your mouth every 15-30 seconds until he will. They will wait until he does it before moving on. I really think these people have the patience of a saint!

So Monday, they started the protocol feedings without any type of food or drink. They used a dry spoon to put in his mouth and a dry squeeze bottle to get him used to having each of those things in his mouth. They told us to expect to do this for at least a week or two before introducing anything. They were so happy with how he handled the first day of protocol feedings that the next day they introduced pediasure off the spoon!!! And he did GREAT! The psychologist sat with me to watch how he would do and told me to expect bad behaviors because it was new to him. But there weren't ANY bad behaviors:) She was shocked ans said Evan made a liar out of her. He took about 2/3 an ounce each feeding which wasn't enough to decrease his tube feeding amounts but it was a great start! And imagine trying to drink a glass of water off of a spoon, it would take much longer than if you were to just drink it out of a bottle/cup.

He continued to do well the next morning so they decided to put liquid in the squeeze bottle also! He was going warp speed through the program. However, this back fired and he resisted:( They decided they were pushing him way too fast and they needed to slow down. So the rest of the week, they just would do pediasure off the spoon and continue to work with the dry squeeze bottle.

Today, he ROCKED!!! Since Thursday, we have been able to decrease his tube feeding by one ounce because he was consistently taking an ounce by the spoon. Today, he is doing even better and I've been able to decrease his feedings by 2 ounces!!! They are scraping the bowl to get him all of the pediasure by the end:) They also increased his feeding timer to 12 minutes up from 10 minutes because he actually acts disappointed when the timer goes off. He loves his therapists Amanda and Scott! They are once again talking about retrying the squeeze bottle on Monday:)

So we've had a great week! I actually look forward to coming here instead of dreading it. I'm excited to see how Evan eats. Today, we celebrated the graduation of another kiddo from the program. I got tears in my eyes thinking about when Evan gets to graduate! I'm already planning his graduation party:)

Today is Gia's 4 month birthday! It's hard to not be with her during the day. I only get about 5 hours a day with her and this weekend I have to work. But I know she's being loved on by grandma, aunts, and great aunts! And like I've always said....This too shall pass! This is just a short period of time and the results will be well worth it! Have a great weekend:)