Apparently I am not giving enough updates......sorry peeps.
If you're remotely interested in what an intensive feeding therapy program is like, please read on. If you have a weak stomach and/or only want to see cute pictures of Owen and Cooper, please skip down to the bottom.
So Medical Mumbo Jumbo - Owen is doing well. After a really rough weekend last weekend and a rough start to the week, he seems to have turned the corner on some of the eating stuff. He even took a bite during his last two feeds without inspecting the food like a private investigator beforehand.
His body reacted to dairy and sweet potato in a majorly negative way, so those two are still out, but we've added many new foods and some of them are really starchy, so we're hoping to see some weight gain soon! None yet, but soon. Real soon. (Right?!) Please tell me I'm right!
The biggest and most exciting change is that he no longer needs bolus (tube) feeds during the day because he now drinks his formula from a cup. WOOT WOOT! That is HUGE, people. HUGE. We will still be on the night feed for awhile, but baby steps, right? Please tell me I'm right! ;) We are also weaning him off one of his major medications and we're going to watch for signs of regression in his final week here. We're praying his body responds well because nobody wants him on this heavy drug for nerve damage if he can manage without it.
Monday starts our fifth and final week!
I felt like it would never ever get here.
Never ever ever ever ever.
We're both more than ready to go home but I'm trying to change my attitude from homesickness to enjoying the last few days of this time with just the two of us. I'm also trying not to be scared of our schedule once we get home!
So for anybody who is like "ummmmmmm, like, what the heck is intensive feeding therapy and ummmmmm, like, what the heck do they do up there all day?" Here is a look at our rules and daily routine:
1. He gets strapped into a car seat and eats every two hours throughout the day starting at 9:00 or 9:30 and ending at 5:00 or 5:30.
2. He is not allowed any food or drinks (other than water) in between his structured meals.
3. At the end of the day, after his final feed, if he would like more food, he can have some.
(He usually wants his hypoallergenic cookies.)
Rule numero 3 is one of the toughest. Easy to do here in this setting. But at home? That means if the older two have a snack or have something on their lunch or dinner plate that Owen wants as well, he cannot have it until the end of the day....This was difficult last weekend when they were here so I'm not really excited about that part. Well, lesbehonest, I'm not really excited about any part.......
4. Each meal lasts thirty minutes and thirty minutes only. If he doesn't finish, he doesn't finish and he doesn't get anything else until the next meal.
5. Owen has five seconds to take a bite on his own. If he doesn't, I say "take a bite" and put it to his lips. If he still refuses, I ignore him for ten seconds and then try again.
6. He has ten minutes to eat his first thirteen bites. If he eats them in ten minutes, he is allowed to watch a video or play for one minute. He then gets ten more minutes to eat the next thirteen bites of food and allowed one more minute to play or watch something.
After those twenty minutes, he has ten minutes to eat the final three foods (no breaks in between) and then he's allowed to get down and play.
7. If Owen spits, vomits, or throws any of his bites on the floor, they get picked back up, put back on the spoon, and offered again until he accepts. Yes, that means he has eaten a lot of food off the floor and yes, he ate his vomit once. Once seemed to be enough on that one thank goodness!
8. REPEAT FIVE TIMES A DAY.
(Hard at work at the hotel.)
RULES FOR ME: I have to ignore all behaviors and pretend they don't bother me. This includes but is not limited to kicking my chair, putting his hands in front of his mouth, crying, screaming, gagging, stretching excessively, saying he has to go to the bathroom, asking how many bites over and over and over again, refusing to open his mouth, talking incessantly to avoid eating, crying, screaming, asking how many bites over and over and over again, pursing his lips, trying to get me to play with him, and saying over and over that he wants to go home.
You may be thinking what I'm often thinking.....That is HARSH! WHY would they do that to a kid who already doesn't like eating?!
They do it for one very important reason. Owen has to learn how to eat. He has to learn that food is NOT the enemy. He has 6.5 years of medical trauma and eating aversion to overcome. That's a long time of painful eating. An adult with EoE once described it as feeling like you have a golf ball stuck in your throat when you eat. I can't even imagine. Sometimes the only way to learn things is repetition: doing it over and over and over and over and over and over again until it becomes habit.
Is it all doom and gloom?
Hellz to the NO.
We came here eating 15 foods. So far, we've added 15 more and still have some new ones we're trying next week! That is major progress, people. MAJOR! Wednesday was a big break through for us. For the first several weeks, we were trying to get Owen to keep his hands down and chin up during chewing to help decrease gagging. This was great for the gagging but became a battle of the wills with the hands. He was constantly stretching or playing with his hands, etc. which meant I was constantly trying to restrain his hands. Wednesday the doctor said, "let's not worry about the gagging for now and ignore the hand behaviors. If he gags, he gags." Major leaf turned. He still does all of the hand behaviors, BUT I don't try to stop him and he started accepting his bites much more willingly. Owen has always played with his hands. I think it's a distraction for him and this one move has decreased our battle time significantly. Less battle time is definitely a positive thing for our relationship and I think he feels like he at least has some control over his body while basically being "force fed." We're also trying more sensory diet (heavy work, jumping, brushing, etc.) before each meal to help relax him.
So.....this is how we are spending our time now and for a long time to come. It will be worth it. It will be worth it. It will be worth it. It will be worth it when we can come off the feeding tube and have normal family dinners one day. This is my mantra. Sometimes it works, other times I cry a lot. Depends on the day.....
and my monthly cycle....... ;)
Now enough medical and feeding therapy jargon.
Here are the aforementioned adorable Cooper and Owen pics taken after our evening swim.
Cooper has been a delight for us. He is coming out of his shell and showing some of his true colors which means he
may need probably needs some training, but overall, for a dog who was likely once abused and then found living on the streets, I think he's doing great! He's super sweet and trying to adjust to family life (in a hotel.) Lol.
Owen, of course, is 125% smitten to the core!
Cooper has forced me outside more for runs and walks. This plus nightly snuggles sessions has definitely lifted my spirits. I know this makes me pathetic. I really don't care. Shit gets lonely up here in Jersey.
And I haven't even seen Snookie once.
Lifelong dream. Denied.
(Mom - I know you've never heard of her. Reality "star" of the worst sort from Jersey. Google her if you need more info.) ;)
And that's a day in the Life.
Some of you may be reading this because you're considering feeding therapy or St. Joseph's. It is a wonderful place. They're tough on the kids but these kids need tough right now so they can hopefully go on to have a healthy relationship with food. The doctors and therapists there KNOW what they're doing, even when you the parent may not agree, and they will help your child if you follow their protocol. It may and probably will be a two steps forward one step back type of thing, but progress can be made. Feel free to comment or email me if you have any more questions.