Protocol 101

Okay...here goes!

First of all, they say the big thing is to ignore bad behavior. Straight face and no attention.
See I tend to tell him "stop","dont do that", or when he yells, I say "now Ty" and stuff like that. When he threw something at the food or wiped his mouth out with the towel I used to have to have to try to feed him, it was funny to the kids or DH but remember...now they must ignore bad behavior...that means if they cant cooporate then they cant be there.

We started off at home with an empty spoon, remember? I literally fed him with an empty spoon.
At first he would fuss and bat it away. He would turn his head but we kept going. It turned into a game and he accepted the spoon. The child even force fed his toys with an empty spoon. I felt bad for doing it but he came to accept it. It was practice for the big game.

Slowly I added flavor. I dipped the spoon into grape juice. He fought and he batted the spoon but after a while he accepted it. We would have dry spoon bites and then I would throw in a dipped spoon.

When we got here they began almost the same process. After the toy selection it was dry spoons.
He has four sessions a day within an 7 hour time frame. Three 45 minute sessions and one 30 minute session. He is allowed a two hour nap or break in the day. He naps the entire two hours. He has a session and then a 45 minute break. Then another short session then another break. It goes on all day. During the break we see the nurse, nutrition, social workers (to see how we are coping with this schedule and the emotional results of eating no doubt!) and OT. We are busy all day!
Each session they play with him after his choice of toy. The toys are feeding toys only and he can only play with them there. Everyday for four sessions they would bring the dry spoon to his mouth and say "take your bite Ty" and hold it there until he would open and they would go through the act of giving him a bite. He had thirty seconds between "play bites". When he would get the "pretend" bite they would say "good job taking your bite". If he closed his lips on the spoon they would also say "I like the way you closed your lips on the spoon". And while waiting the thirty seconds they play...

They did this for a week. It drove me crazy...but he didnt mind it. He kind of liked it.

They next started waving and showing him a green card at the beginning telling him this:

I am going to give you a bite and if you bat it or turn your head, I am going to keep the spoon there until you take it. If you take it I am going to say "good job taking your bite". If you swallow it I am going to tell you "good job swallowing your bite" and if you spit it out its OK for now.

Then he would choose between two of the toys. Next they would offer dry bites and suddenly dip the spoon in food. It would be so many bites with the dry spoon and then a dipped spoon bite. They said the same thing. "Good job taking your bite Ty Christian". When his negative reactions slowed down they increased the number of dipped bites.
When it was continious dipped spoon bites they began the next session with dipped spoons and added increased pea sized bites just as slowly. They started each session with a choice of toys and the green card rules. They added "show me" thirty seconds after he accepted the spoon and waited a few seconds. Then they asked "show me like this" and opened their mouths wide. If he did not copy them, they took a coated baby spoon and put it to his mouth and he opened for them when it touched his lips. Sometimes he had food in his mouth he had not drooled out. They would then say "you need to swallow your bite".

He never swallowed these first bites. They contined on until they had run the trial out for a few days. When he did not swallow they decided to look at placement in his mouth. Go back and read March posts...I go into detail about how they moved up to the nuk brush dry, dipped and then with food.
Again they waved the green card and recited the rules except they used the nuk brush to demonstrate instead of the spoon. I thought they were nuts...I mean did he understand? They dipped the food up on the spoon kind of in a bunch and rolled the nuk brush so that the food stayed in a lump on top of the nuk brush. They then said "take your bite" and when he opened they kind of rolled the nuk brush on to the center back of his tongue to place the food. It helped a lot that I had used a nuk brush for a long time in his mouth so he knew what it was. It did not trigger a gag. It was not far enough back.
What it did trigger was a swallow!

So the protocol was as follows:
1. offer choice of toy (toys can only be played with at feeding and must be favorites)
2. recite the rules (there is a blue card rule that I will share soon)
3. Say "Take your bite"
4. When bite is accepted say "good job taking your bite"
5. after 30 seconds say "show me"
6. after 5 seconds say "show me like this" and demonstrate an open mouth
7. if the child does not open use a baby spoon to the mouth to open
8. if the child opens say either "you need to swallow your bite" or "good job swallowing your bite"

This is so simple its cool. He is on auto now. He opens right away and its seems with out thinking about it. I mean he plays and then when I say it he opens up with out looking up. WOW...

The blue card set of rules are the same except they say "when I give you your bite and you spit it out I am going to scoop it up like this (they demonstrate with a dry spoon) and put it back in your mouth".

After he did so well with the nuk brush and started swallowing more bites they maintained that for a week...I was beginning to think they were going to send me home using the nuk brush for feeding. UGH!
I was so happy they went back to the spoon. He again swallowed and didnt even notice it was a spoon instead of a nuk.

They then started placement trials again. On the right side, in front and on the left side. It seems he handled the food better on the sides than the front. I didnt care as long as it was a spoon again. By this point I was ready for texture and increasing the amount of food on the spoon. We were in week four...I wanted to start working on chewing. Whoa!

Two things I have learned. You cannot rush this. The long time using the dry and dipped spoon was necessary. The length of time using the nuk was necessary. Also slowly increasing the amount of food on the spoon is necessary. Each step is an opportunity for him to learn to use his mouth.

Get this...because he was tube fed, he missed important developmental stages in critical points that contribute to speech and ability to chew. We have to go through this slowly allowing him to catch up.

The payback will be increased verbalization and reduced (no more?) drooling. I am told he will learn to move and swallow his saliva as he learns to move food around in his mouth...it makes sense now.

I have a more to share and will soon. I need to post every day but lil man keeps me so busy. I have new respect for single parent families. Being here in Atlanta alone with him is not the easiest thing I have done, altho I must say I love our time together. Dad, are you jealous? Come on up! LOL!