OMG

Okay, Well he has a new trick.

Wednesday night, during the dinner feed, he spit out lots of chocolate milk. This was NEVER a problem. He decided to spit the milk directly into my face. He wasn't angry, he was hysterically laughing. This went on for almost 30 minutes. I would take the cup, say "keep it in your mouth and swallow" and he would spit it out. The sips got very small, but he would find a way to spit it out anyway.

I was covered in chocolate milk. My mom's walls and floor were covered in chocolate milk. (Those of you who have been to her house know, that her house is spotless, white, and everything is made of glass and has sharp corners).So imagine the scene.

I found it VERY hard to stay cool and calm. He kept laughing and the joy he got spitting this out was greater than my approval, playing with him , or any toy I had on hand.

I took off his shirt, beacuse he was having fun wiping the liquid with his shirt. I had to turn away from him and slowly count to 30 to keep cool before repeating the steps.

The feed took over an hour and he didn't drink more than 3 teeny tiny sips.

We called them on the phone and it was explained to us, that he is losing control and knows that liquid is controlled by him, it is the hardest to make him drink and he is smart.

We were doing the right thing and to stay strong.

He did this "milk trick" at all 4 feeds Thursday when we stayed home to practice. It did get less by the last feed, but it was still present. It also didn't matter if it was Phil or me doing the feed.

This morning we are back in hospital and he did it for the therapist, so she got to see him spitting it out. Crazykid.

We are down about 50% on tube feeds and if we can get him to DRINK then it could be over faster. He doesn't drink enough and needs these tube feeds to stay hydrated. The therapist saw our frustraions and reminded us to keep strong and that they are on call all weekend and will talk to us about concerns and any "new tricks" he discovers.

how it is

So we were to relax over the weekend. We relaxed.

On Monday, I did the 3 meals here, and they were a bit problematic, but we got through them, and I did not have the therapist in the room. They watched, but it was all me.

Tuesday was Phil. He did the meals with the therapist and then today he did the first 2 meals without her.

He still is inconsistent and tests us. He wil spit out food again and again, but we keep replacing the food. if he spits it out 12 times, we will give him the 13th bite. He eventually will learn this. It is exhausting and tiring and draining and really hard to ignore and stay relaxed during the meal.

I've been reciting poems in my head and song lyrics, to stay focused and calm.

Yesterday Phil almost burst out laughing at Adam's antics. He kept screaming, "Dad, Daddy, it's me. Look at me" over and over, but because he was spitting and refusing to chew his food for the therapist, Phil was ignoring him. It was difficult to keep it up, and it's even more difficult to remain cool and calm when replacing bite after bite after bite of food.

They are giving us the day "off" tomorrow. it's not really a day off, they are really just sending us home to practice at home. We have to do 4 meals tomorrow at home. So, this will take about 4 hours plus mealprep time. Then we will report and share with them on Friday how it went. They will also talk to us tomorrow on the phone if we have any problems so we can get questions answered before the next feed.  Then Monday is our discharge meeting and we are DONE. We follow up every 2 weeks for some time and hope for the best.

We entered here being 100% tube fed, eating nothing but  an occasional slice of Land of Lakes American White Cheese.

Now he will eat at a structured meal therapy session :3 ounces of food and drink 3 ounces of milk.

He will eat: grilled cheese, mac and cheese, broccoli and cheese, green beans, bananas, peaches, applesauce, scrambled egg, pancakes, yogurt, meatball, spaghetti and tomato sauce, chicken nugget, and mashed potato.

It's a struggle and will continue to be one on one eating for a while, but it's a start.

I think we can do this

Friday's last meal was a train wreck. Adam chewed me up and spit me out.

I was holding back tears, so frustrating. His bites were miniscule and he kept holding the food in his mouth, getting no reward, the next bite comes, now he vomits and then I had to replace the first bite and move on to the second bite. The therapist was reminding me that this is his choice, he can swallow pudding in less than 30 seconds. He is choosing this. It was really hard.

Afterwards, the dr was talking to me that maybe he doesn't feel hunger, they have cut his feeds so drastically, he should be hungry and he also isn't having enough bowel movements. She will bring his GI up to date and that dr. should have some recommendations to help. He may need to be put back on an appetite increaser or some meds to move his bowels faster.

She told us to take it easy and relax over the weekend.

my first feeding day- friday

today was and is super hard.

I am feeding him now with the therapist and breakfast was rough. It took forever. The steps feel unnatural and he vomited and I had to use physical guidance and he is holding his bites to attempt to stall the next bite from coming. At the end of the feed, the last step is me saying "Last bite, after this bite, we are all done". He then took the bite. Next we reward, praise and play for about 30 seconds. Then the toy leaves and I say "when you show me your empty mouth, we can go".

I ignore him until the bite is gone and he shows me an empty mouth.

Well, he held that last bite for over 7 minutes.

Very frustrating. Lunch was no better.

week 3 coming to a close

Well, we had the meeting Tuesday and it was interesting to say the least. 

Lots of questions got answered, it was about an hour long and I'm sure we will have more questions as the time progresses. Basically I will start entering the meal times on Thursday, but as a watcher, just sitting in the room. We need a lot of things for home to do these therapies 3 times a day and it seems like it will be easier if I buy his foods in bulk, prepare them ahead of time, measure them on a scale and store them ready to go. So, maybe I'll need to devote like each Sunday for meal planning and food shopping for the upcoming week. In the beginning, we will need to feed Adam one on one for at least 6 months three times a day, preferably with two us around to "block" him if needed- especially in the beginning. We thought our days were hard when we had to bring all his tube feeds along! Now, we really must get 3 therapies in each day with him no matter what. So, we won't be travelling to anyone's housepartypajamajam or tourist attractions or having "date night" too often in the next 6 months. 

Some other questions and answers we got were: There is no research based link or proof that he will have an eating disorder as an adult. His diagnosis is childhood feeding disorder and failure to thrive. They don't take into account that he won't like any of the foods, like they don't care, it is believed that since he is a new eater, he hasn't eaten enough stuff- like anything really- to know if it's good or not. Mealtimes are about teaching him to be compliant, use his lips, chew and swallow. They also said initially every new food he eats is confusing to him- like when you order a coke and you get flat sprite. You take a sip thinking it's coke and then make this face and are confused. He is confused all the time with anything new because it's all new, so he spits and reacts to that.

The last real important thing that was talked about at the meeting is that everyone that comes in contact with Adam and deals with food with him can not use any form of incentive or reward around any aspect of food. For example, you might be eating and offer him a bite of your cake. He most likely will say, "NO". It stays there. You can talk about how great your cake is, but you need to refrain from saying, "c'mon try it, we can go outside if you have a bite, or we can go play, or have a sticker if you eat this, or watch tv." Basically no incentive no reward of any kind no deal for a bite or taste of anything. 

If he wants it, he'll eat it. Please continue to offer him food and show him how great it is to eat. Also (if you don't mind) encourage him to touch your food. It's an early step, and they explained that he won't ever eat what he won't touch. But don't bribe him to touch your food- no "deals". 

Yesterday-Wednesday

Adam pulled new tricks.He took a day and regrouped for the counterattack. Now he's no longer aggressive. He's passively resisting. In those 3 feeds he did the following: Chewed forever- like a zillion bites, moved spoon slowly, smiled as he spit his food out, smiled as he spit food into his cup- into his hand and pulled his shirt up and spit it down his shirt. Each time he was met with them "forcing" the bite right back in, but it didn't stop him from trying. He also hid behind a toy to spit and took teeny tiny licks off the spoon. 

I guess it's best that he's doing it all now, so we hopefully have seen all he's got before we are alone at home with these antics. 

The psychiatrist was watching with me and commented that, since all these foods have been eaten fine with us here it's not the food. he knows these foods, that part was worked through last week. This is his personality now. This is him being clever and testing. This is all behavior. He's the kid that will come in at 10:31 with a 10:30 curfew. 

I think she's wrong. Adam is the kid that will come in at 2 am after Phil and I have gone looking for him and called the cops with a 10:30 curfew. Matt is the kid who will be home at 9:45, because he was worried there'd be traffic, and 10:31 when he's really mad at me, for spite.

THURSDAY- today

I went in and fed him. Breakfast was long and I was unsure of parts of the steps and hesitated when I had to use physical guidance. Lunch was slightly better and the last meal was similar. I had help, but worked through: him vomiting, spit it out, playing with spoon, dilly-dallying with liquid, and dropping food on floor on purpose. 

It's a start and I hope I'll get more comfortable tomorrow and this goes  bit faster by September, or he'll be eating breakfast at 5am in September to give us the hours it's going to take to get these bites in! 

what adam eats now

We are just starting our 3rd week and Adam now eats:
1. Cheese
2. Macaroni and cheese
3. Grilled cheese
4. Broccoli and cheese
5. Banana
6. Peaches
7. Yogurt
8. Chocolate pudding
9. Applesauce

It's awesome after 9 days!
That's roughly 32 one hour therapy sessions.

We have learned that Adam is a quick learner, it has taken him only two meals to be okay with eating a new food.  We have learned that Adam is stubborn and will try all the tricks he's got. When his yelling, hitting, spitting and vomiting didn't work, he tried new stuff like: chewing slowly, turning his head to spit out the food thinking that you or the people behind the mirror or the video camera can't see him, he also will smear the food into his shirt thinking that will end "the bite".

Tomorrow is the family meeting and then we will be brought into the therapy sessions and trained. I am nervous and hope that Adam does not smell fear.

Week 2 Day 4

So he's had 6 days so far of "eating school" and he really has learned alot!
Yesterday I felt was really terrible. All 3 meals were ugly. He blocked many bites with his teeth and would not let food in, he spit out preffered food for the first time- cheese. He actually spit at the therapist (besides the yelling and screaming and attempts to hit, which he's done all along) and he yelled the only "curse" the meanest thing he knows to say. He yelled, "Go Away".

We have had several weeks back in June where he began saying "Go Away". We explained how fresh that was and it's not allowed. It got him several time outs and that phrase disappeared. Until yesterday.

They also switched out the macaroni and cheese for applesauce, and all that negative behavior yesterday was in response to applesauce. Yes, applesauce.

It seems like we have quite a bit of data, and the doctor explained that Adam is consistently inconsistent. They are unsure why. Phil thinks it's because secretly Adam is the one collecting data on them. :)

He prefers and will eat: cheese, grilled cheese and yogurt. The yogurt part is awesome, he learned in the 6 days to lick the spoon clean, and willingly eat yogurt. He does not prefer macaroni and cheese, banana, and applesauce. In spite of that, there have been some meals and some bites within the meal that he will eat those foods and other times he blocks them. He also seems to call all the foods he doesn't eat willingly "banana". Afterwards I ask him what he ate (even though I am watching behind a mirror) and he tells me "cheese and banana." I also ask him how he did and he aways gets real happy and says he ate all his bites. So he is also learning to lie. :)

We all expected this morning to go as terribly as yesterday and we were prepared for them to use physical guidance: this is where they put pressure on his cheeks by his mouth and basically force him to open his mouth. However, Adam ate all the applesauce this morning. Who knows why.

For lunch today it was really interesting. They gave him cheese, grilled cheese, yogurt and banana. In that order. One bite of each. The first time he got to the banana he fought. I'm talking like he never fought yet. I thought yesterday was bad, well he pulled out everything he had. She applied pressure and got him to put in in and he would spit it out and then spit at her. She would put bite back in and he would yell, hit and then he made himself vomit. She put the bite back in and he vomited again. This struggle he had went on forever. I'm not exaggerating, like 20 minutes. The therapist was calm, cool, never raising her voice, only applied what was needed. Finally the bite went in and he swallowed it. He was angry with her and didn't even want the toy or praise. The next round he ate all the bites and was back to laughing with her until that banana came up again. This time the struggle lasted a small fraction of the time. Maybe 5 minutes. He swallowed. The next round of bites, went fine. Cheese, grilled cheese, yogurt. The banana's turn again. This time, Adam ate the banana with her hand over his hand on the spoon. He let the banana fall out of his mouth, but then he quickly picked it up and put it back into his own mouth before she could do it. The last round, he ate all the bites willingly.

He also has learned to eat his last bite very quickly. He learned when she says, "Last bite" if he eats it fast, he's done.

He was worn out from the lunch feed and pretty much fell asleep in seconds afterwards.

Also, Occupational Therapy yesterday and today were awesome! He made such amazing progress, he made a salami and cheese sandwich, played with sweet potato, pudding, mashed potatoes, and banana. He had fun and even let the food go near his mouth. He even took a few bites of kosher salami, of all things!

He is learning.

Week 2 Day 2 Eating School

So we had an uneventful weekend. We get to go home on the weekends, so we booked it out of there, hit a lot of traffic and got home several hours later, wiped out.

Adam was happy to be home, we did laundry and put it all back in the suitcase. Saturday night, Phil and I got a sitter, we really needed a night out and we laughed at a comedy club for several hours, great fun. Sunday night I headed back down here to Philly. Phil is staying home this week. He has to work and his graduate class starts this week, so he can't come.

I was nervous about doing the drive and all by myself, but it's all good, and the first day, Monday, yesterday was fine. They introduced another food, so it is: cheese, grilled cheese and mac and cheese. I am cracking up because it's all like the same food, but not to him.

Breakfast was ugly: yelling and hitting, clenching his teeth. He will eat the cheese and the grilled cheese, but not the mac and cheese. They brought in the blocker, but he wouldn't eat it. For lunch, they then put all the food on a spoon, to see if it was the spoon. He then ate the cheese  and grilled cheese off the spoon, and took a small tast of the macaroni and cheese, but wasn't real happy about it all. For the third meal, he still fought and some bites of the mac and cheese went in, and others didn't. No problem with the other cheese forms.

Today the stuck with the same number of bites as yesterday and the same 3 foods. 18 bites, 6 bites of each. For breakfast, he ate all his 18 bites, no problems at all. It was his primary feeding therapist and she does most of his meals, he seems to eat best for her and they can't have that, so they needed to see if it was the therapist, or if he's used to those 3 foods now. For lunch he had a new therapist and he ate all his bites again. Which might suggest that he's used to those foods. He also might have an issue with using a spoon, or the texture, so they might try another food on a spoon tomorrow to see what he does.

Last week and this week, it's all data collection and like a big experiment with all these therapists and doctors. They are trying to see what his deal is and what he will do and what he will tolerate and eat.

Today they explained to me some of the things I need to do to prepare for him to go home and to do this at home. Right now the plan for home seems like we will do a small meal like they do here around 6:30-7am, one at 4-4:30 and a larger meal at 7. These "meals" will be one to one at home each day, so I need to think about how to structure things to work around the attention he will need from me to get this done. We probably will need to talk and explain things to Matt so he is non -disruptive during these 3 therapies. Also our dinner meal will still be the family and Adam joining in and having fun with whatever we eat, but no pressure to him to eat during that time, it will be just social and fun with food (same with breakfast and lunch on weekends and hoildays) It seems like I will be in the kitchen from 4 till 8 each weeknight, with Phil taking 2 classes this fall, it will be a balancing act, hopefully 5th grade homework can be done mostly alone.

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.