Eating School

We started Eating School. One week down. 

We needed to attend an intensive feeding clinic- there are only a few on the East coast, and Adam is pretty much 100% fed through a tube.  Adam's trach was always his first priority, it was removed in May '09 and we thought he would eat more when it was removed. All our energy went to removing that trach- and rightfully so, breathing and speaking were paramount.

Beginning last summer when his trach was removed, we focused on the feeding issues, increasing feeding therapy to twice a week, going to his gi every 6 -8 weeks instead of 3-4 months. Changing up his feeding schedule (including us getting up at 5 am and staying up till 1 am), trying new medications to increase appetite and engaging in behavior therapy. We thought school would help too. He attended school full time this entire school year, where he got no tube feeds during the day- he was with other children eating 3 times a day. No. It didn't work. We investigated long term intensive programs and did a 4 hour evaluation back in March to get him into Chop's feeding program. 

We were unsure until 2 days before we were set to go, if we would be able to go due to insurance and the cost. Given the quick notice I was freaking about packing and trying to get it all together, the lists of what to bring are extensive. We also will basically be gone and living out of a suitcase for over a month. 

WEEK ONE 

We started on Tuesday. It was an exhausting day. We got there by 8:30 and met with a ton of different people: nutritionist, feeding therapist, psychiatrist, nurse,  MD, nurse practitioner, and occupational therapist. Everyone asked a bizzilion questions and many were the same. 

We spent a lot of time in a little room, Adam was wiped, tired, and needed to run. We also had to feed him in a room while they all watched us through a one way mirror. I found this creepy and they said, "oh, we just want to see how a typical meal is at home". 

Well, we don't normally feed him after utter exhaustion, without him eating for 5 hours, in a tiny room with little stimulus, in a weird wooden chair and table, with you guys watching us. 

The meal was funny because I had to bring food that was preferred and food that he rejects. So, he ate tons! He ate an entire piece of turkey. Which was crazy. I actually was laughing because we must have offered meat to him every meal for two years and he's never eaten it. But on that day, he dove right in. He also drank, ate more and asked for more food. It was a pretty abnormal "normal" mealtime. 

On Wednesday he had three meals with a feeding therapist. All the meals are videotaped and we watch through a one way mirror.  She started with a food he likes- cheese. He ate all this bites with no problems. Each bite he takes is immediately rewarded. We have done things like this in the past and I can see why they don't want anyone to just do their program without being trained. There are subtle differences in the language and movements of the therapist that are different than what a person might normally do, even when the person knows to reward. He ate all his bites- no problems. 

Occupational therapy was also on Wednesday- it was an hour and really fun. Adam loved it. The therapist was cheerful and laughing and it was play without any pressure. He had a blast painting with peanut butter and making me a jelly cracker sandwich.

Thursday- Breakfast was no problem. During lunch they decided to introduce another food- banana. He wanted no part of that banana. He fought her, yelled, screamed, threw the food. During dinner they tried again and brought in another therapist to block him. She stood behind and prevented him from using his arms to block the food. He was yelling and really fighting them. Whenever she would get a bite in his mouth, he got praised and rewarded even though he spit it out immediately. 

Friday- Breakfast- today they would not reward him for taking the bite- he had to swallow it. So, he was given back each piece that he spit out at her. It was frustrating and exhausting. But every time he spit it out she would put it right back on the spoon. They also had to have the 2nd therapist block his arms again because of the hitting. Lunch went fine. He ate every piece, it was as if he was a different child than the one from breakfast. Dinner- they switched the therapist and he fought all over again. Yelling, hitting the works, He was spitting it out and she gave it right back to him. 

My impressions/feelings so far

• it's hard to know what's best for him. I mean, Phil and I constantly talk about all this and if it was me at that age acting like that, I'd want my parents to do everything that they could and I'd say to them now, why didn't you just make me. Well, that's want we are trying to do-change his behavior and make him eat. 
• no one prepared me to how I'd feel watching him struggle and fight like that. The doctors go over the techniques and I signed a waiver and all that, but they should really talk to parents about it. I was crying and laughing afterwards and during and the emotions for the parents should be discussed. 
• I have like a ton of questions. I am constantly writing down questions and asking the psychiatrist  and therapist things all week- I have so many more questions that I didn't get a chance to ask and hope they will give time for this next week. 
• there is a lot of down time. much time to kill. I am also a germfreak and used a bottle of sanitizer and my knuckles are chapped from hand washing. I hate absolutely hate staying in the hospital and all week it was like over a hundred outside making walks in the city difficult. I found a quad of grass and old buildings that every college has a few blocks away at upenn- that was fun to unleash Adam and let him run around safely and there is a bookstore a few blocks away that I took him to today, but there isn't enough stuff nearby. I am going to research that this weekend and try to find something to do. 
• they don't take into account naps- the nap room is not good and it was too hot outside so each day I found a chair and held him- he was fine, but I was very uncomfortable and I wish they had plastic couches in non infectious areas of the hospital.
• It's strange to watch him when he can't see me. He looks right at me and then I realize he's looking at himself in the mirror. This led to me visualizing Adam jumping up out of his chair and scratching a hole in the mirrored glass, smashing through it and yelling "Womack". I can't help but see him as Sean Connery in The Rock. This thought makes me laugh and then I relax. 
• The days are super long, super tiring, and it's hard to not be home afterwards.
• I realize this sounds all negative- I don't mean it to be. This is a long road and we just took the first steps. I am grateful we can take this road and so thankful.