Well this time I am updating sooner than last time. First off, I thought I would let everyone know what Elizabeth's preferred foods are: Ravioli, Beef Stew, Chicken and Mashed Potatoes, Carrots, Green Beans, Mango, Peaches, Applesauce, Yogurt, Pears, and Sweet Potatoes. I think this is an amazing list of foods so far! Of course it is all stuff I blend down to a smooth puree for her to eat, but still, that is so amazing!!
As of yesterday, Elizabeth is now on a self feeder protocol. What this means is that we are teaching her to feed herself in a timely and safe manner. I am still in control of the drinks though. So now when she sits down to eat, she starts her timer and then has 5 seconds to take a bite of her first food in the rotation. If after 5 seconds she hasn't taken her bite, I have to give her a verbal cue "Take your bite of (the food)." Then she has anopther 5 seconds. If after this time she hasn't taken a bite, I have to point to her spoon and say "Take your bite". Again I wait 5 seconds and if she still hasn't taken her bite, then I have to take her hand and put it on her spoon and bring the bite to her mouth and leave it at her mouth til she takes the bite. Once she takes the bite, I give her, her verbal praise and then 5 to 15 seconds of her tangible reward and then it is on to the next food in the rotation. So far, she is doing really well and I mainly have to use the verbal cue and only if she is distracted. I did have to use all the cues the very first meal, but after about 2 rotations of the food, sahe decided to do it the right way. So we are on a great track with that.
As for volume, she is currently at 120 grams of liquid a meal and 90 grams of food a meal. Starting on Tuesday they will be increasing the food by 5 grams a day until we have the amount of calories we need her to have to completely wean the tube feeds, or until she starts having issue with the volume and starts to gag and retch again. As I have said before, she is very volume sensitive, so we have to go very very slowly with this process.
I brought it to their attention that Pediasure and Simply Thick were very expensive and i just couldn't afford to by everything she will need when she leaves the program if she stays on these. So, they are starting to weam her over to whole milk, thickened with vanilla pudding. This will give her the same amount of calories as the Pediasure and will also thicken it to the nectar consistency that she needs to safely drink her liquid. I hope it works and she accpets it, because it is far less expensive then the alternative!!
Her weight is still only 16.35 kg, which is roughly 16 lbs. She hasn't gained any weight in awhile, but she also hasn't lost any either, so that is good. It will definately be interesting to see what her weight is on Tuesday as this will be our first weekend at only 375 calories from her tube feeding. At the start of the program she was getting all her calories, 1400 by tube. So I hope she gains or maintains this weekend.
I have asked them about extended caregiver training. In other words when we are going to start training other people to feed Elizabeth besides me. I have been feeding her for 3 weeks now, which is unheard of in the program. Normally they don't start caregiver training for even the parents until the 7 week. However, they said Elizabeth has dictated this whole time how things were going to happen in her care. SHe started to try to show me the routine the therapist were using for her at home, so they decided to put me in the room. They have said I am a very strong feeder and do very well and that Elizabeth does very well and should have no problem transitioning to other feeders and will probably show them what to do. WIth that all being said, they think it will still be a few more weeks before we bring anyone else in to train. They want to make sure the self feeding is going very well, her volume is where they want it, and that she has transitioned over to whole milk with pudding before putting anyone else in there. For me, this is very hard. Most parents have 6 weeks of watching and being able to get a break because they don't have to go home and feed at night or weekends, so a babysitter can watch their child and tube feed them in the mean time. However, this is not the case for me at all. I have been feeding for 3 weeks now and will continue to be the only feeder for probably another 2 to 3 weeks, so no break for me. I love Elizabeth to death, but right now it is her and I 24/7 and I feel like I don't get a break at all. I so want to get my sister trained, because she has been my life saver and reliever for the last 1.5 years and it has been such a welcome break when E goes to see Aunt Birdie. However, for now that isn't an option......
Overall though, things are going well!!
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