Days 2 and 3 of Feeding Program

So yesterday was day 2 of the feeding program. Elizabeth didn't sleep well the night before. She wouldn't go to sleep until like 10 p.m. and then for some unknown reason was up at 4 a.m. asking for a breather and then to go potty and then finally for another diaper to be put on her. By the time she fell asleep it was like 5 a.m. and I had to wake her at 6:30 to get ready for our day.

We started out the day with me feeding her, her first meal. It went pretty well. She had Captain Crunch with milk and then also some milk to drink and I want to say some applesauce. She ate all the applesauce and drank her milk and ate about 1/4 of the cereal. After her meal, we went up to the family room and she played with toys and watch a video until her next feeding session. Session 2 was done again by me. This one didn't go so well. She ate her baby food, refused the pureed ravioli (big surprise there) and then ate her go gurt. After that, it took me 15 minutes to get her to drink her 4 oz of milk!!! 15 damn minutes for milk and at that point I had had enough and called an end to the sesssion. After that session we went to the napping area, where she did lay down and was quite, but didn't sleep.

After her nap she had her 3rd Session of the day and it was the first session that the therapist got to feed her and I watched from behind the two way mirror. She did pretty good during the session. After the session we went and played some more and then she had her fourth session of the day which again was done by the therapists. Again she did fairly well, except she was hitting her therapist basically to get the therapists attention. The therapist will not look at, talk to, or interact in any way with Elizabeth unless she is properly taking a bite, chewing and swallowing. When E talks or does anything else, it is considered a way of trying to avoid eating. After her 4th session we went to Bill's house.

At Bill's she did ask a few times for something to drink and tried to tell me she was hungry, but I just told her that she eats at the feeding program only. We went to Walgreens and picked some things up and then went back to Bill's to put her to bed and this is where it gets interesting!!!

She got ready for bed and even got into bed with no problem. In fact she gave us both hugs and kisses no problem. We both left the rooma nd I went to make dinner and all of a sudden Elizabeth was screaming blood curling screams for me. So of course I went to see what was wrong. I tried to calm her down to find out what was the problem. She kept telling me that she couldn't sleep alone and she wanted me to lay down with ehr and she wanted to go home and she missed her daddy. The whole time just crying and screaming uncontrollably. I told her she was ok and that she ALWAYS slept alone with no problems and that she was over tired and she could cry if she wanted to, but she didn't need to scream like that. However, she did keep screaming. I let her get up to go potty and she still didn't calm down. She went back to bed and was still screaming like a banshee at the top of her lungs and crying non stop. I have NEVER EVER seen her like this!!!! I finally just walked out of the room to let her cry. Bill went in and told her that I was not going to come back in and that she needed to calm down and she could cry her self to sleep if she wanted but that she needed to stop screaming. I was almost in tears by this time, cause she was still screaming for me nonstop. It was like she was being tortured and she wasn't. I so badly wanted to go in and just lay with her and hold her like she kept screaming for me to do and to be completely honest, if Bill wasn't there telling her (which in turn told me) that I wasn't going in there, I would of went to her. He was completely and totally my strength last night. I did go in real quick and undo her food from her as I was scared she would either from throwing herself all over the bed or just on purpose to get my attention, pull her mic-key button out. Finally Bill left her room with her still in there screaming and crying. After about 5 more minutes of this she settled down and eventually fell alseep. This morning she woke up and said she didn't have very good sleep cause she kept crying last night!!!

Today she had all her meals with the therapist. By the 3rd meal they had an idea of what her feeding plan was going to start out as and had implemented it. At 2:00 p.m. I had a meeting with the whole team as I will weekly to discuss everything. First off they let me ask them questions, so I asked them about last nights fit at bedtime. The pyschologist said that they some times she behavior like that later on in the program when the children are really being challenged. She said that there are only 3 things children have control of that we as parents can't really control and that is eating, sleeping, and going to the bathroom. She said we have taken away her control of eating and we are in control now and that when that happens children try to find control in other ways by sometimes having "accidents" even though they are completely potty trained or trying to control when and how they will sleep. She doesn't think it was because of the start of the program, but maybe a lot of different things going on. She did tell me that I may see other things from Elizabeth that I have never seen before with her and that is why they have all the different disciplines involved ( i.e. pysche, medical, social) to help with these behaviors. They said I did things correctly by making sure she was safe and not giving in to her.

From there we discussed her eating. I can give her one meal a day at home at night for the moment. I am to do it just like I always have. However, it is to last only 15 minutes and I am not to fight with her or force her at all. If she doesn't eat it, then it is to be no big deal. But she can't have anything else either the rest of the night. They have decreased her tube feedings by 250 ml and 250 calories. They are also ordering a swallow study to find out how she is swallowing thin liquids, as they have seen her consistently coughing while drinking thin liquids. Until she has the swallow study, she is to have only thickened liquids to drink, even at home with her one meal. She can no longer have drinks all day long whenever she wants them. Her drinks are with her meals only, not even water!!! She also can't eat whenever she wants to....only at her scheduled meal times. Her scheduled one for at home is at 6 p.m. They also are trying to figure out the proper seat for her. Right now they have her in a 5 point harness type seat with only 1 to 2 of the straps being used. However, if need be they can use the other straps to restrain her from being able to turn from side to side in her chair if she is doing that to avoid eating. She is also having smooth to grainy purees only with one new food each time. In other words, she likes and accepts applesauce and yogurt no proble, so almost every meal will have that, then there will also be a new or not preferred food as well each time. She also gets only strawberry pediasure every meal as it has many more calories then even whole milk.

So for now that is what is happening with her program. I am very intersted to see how they have me handle the weekends though. RIght now E and I are at home and I actually need to go get her dinner ready for her. As I said before, I do plan to update this every couple of days.