So as I write this we have concluded our first week of the feeding program. So far so good, although I truly am tired!!! I will start updating with day 4, which was Thursday. She had all four meals with her therapists and she ate every bit of food they gave and drank all of her pediasure. Remember though that it is like stage 2 baby food and only a total of 3 ounces of food and three ounces of milk. She did pretty good. They have been alternating between an Elmo camera and a Go Diego Go dvd for her reward. She has to take a bite and swallow and then she can take a picture with the camera or watch roughly 30 seconds of the dvd. By doing this, she seems to take faster bites and swallow faster as well. However, she still isn't swallowing all of her food all the way. They will sometimes have to tell her to swallow again. They ignore any behavior out of her that is negative or avoidance of eating and praise her every time she takes a bite and swallows. They even divert their eye contact if she is doing something bad and trying to get their attention. They will look at her again when she swallows or takes a bite. They don't give any of of the bad any attention,only the good. Thursday was the first day she took a nap for me. It was on the couch in the family room, curled behind my legs, by hey it was a nap finally. Also she has decided that she isn't goin gto hold her own cup and bring it to her mouth to drink, instead she is going to have them do it for her. The therapist said this is a very common behavior they see in children who have self fed and then have that taken away like she has. So we will see what happens when it is time to transistion her back over to feeding herself. I do know from what they are doing, her taking bites and swallowing is getting faster. When I fed her her meal Wednesday night, she ate all of it in the time I allotted her no problem. Before the program it would have taken her 30 to 45 minutes to eat it and now she will eat it in 15!!
Friday was pretty much the same as Thursday. But we did notice that she seemed to be coughing more and gagging a little bit with her cream of wheat. The therapist said it may just be that there were a few chinks in it that Elizabeth didn't chew properly before she tried swallowing it and that she would continue to watch her for this behvior. After therapy, we went to Bill's to stay the weekend.
For the weekend I was to feed her like I did before coming into the program. However, I did want to try to keep the times pretty much the same to keep her on schedule and I also only let her have 15 minutes to eat. SHe did pretty good eating her food, but I had a hard time getting fluid into her. So yesterday I had to call the dr from the program to see if I could give her some extra water through her tube. She had only peed twice by 5 pm and hadn't had a bowel movement, which was unlike her. Normally by that time of day she had peed 5 times and had 2 bowel movements. The dr allowed me to give her an additional 8 oz of water a day. I gave her 4 oz to begin with through her tube and woudlnt' you know it......with in 5 to 10 minutes of finishing the water she peed and had a bowel movement. I guess she was just a little on the dry side.
Also yesterday, my wonderful boyfriend, Bill got up with Elizabeth in the morning and let me sleep in, cause he knew how tired I was. He also made me breakfast. He is just too good to me. We also think we figured out Elizabeth's problem with sleeping at his house all of a sudden after 8 months. At home, if she wakes up during the night she can come and ask me for another breather or on occasion, she will climb into bed with me if she is scared about something. At Bill's she has never tried this and we think she thought she couldn't. Also about 2 weeks or so ago, in the middle of the night, we had her window opened in her room at Bill's and a fire truck went by sirens blaring and woke her up and scared her....she didn't cry out like I thought she would, but told us in the morning she almost did. So now she is scared of hearing a fire truck. There for we keep her window shut and we have explained to her, that if she wants me during the night or wants to get in bed with us, that she just needs to call out for me from the bottom of the steps and we will let her in bed with me or I can give her a breather. This seems to have alleviated her fears and temper. In fact this morning she climbed in bed with us at like 2 am. I know I didn't get very good sleep, because she takes up the whole queen size bed, but she was happy. I think from now on, I may just go back downstairs with her and give her a breather and have her go back to sleep down there. But thank God we finally figured out what the probelm was. Every night when we would be getting her ready for bed, she would just get so upset. So I started to think of what was different between home and there and then talked to ehr about it.
Tomorrow starts our second week of the program. I am still so exhausted from week one, but I know this is what is best for Elizabeth. I just wish that I had someone to come home to every night and relax with and talk to about all of this and help me through it. Bill is wonderful and I stay over there a few nights a week, but it's not the same. And he isn't Elizabeth's dad and this isn't his responsibility.
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