I truly meant to update this blog more often and I realize that I haven't done that in over 2 weeks. It has been a very busy and frustrating 2 weeks. I guess I will try to update this now.
So last time I was on here Elizabeth was finally showing her true colors with feedings. Well things went downhill fast from there. She started having very bad episodes of gagging and retching later on that week. They had upped her volume of fluids and solids to 135 grams of each and Elizabeth just couldn't handle it. She has always been very volume sensitive and that is exactaly what happened then. So they decided to add Prevacid back into her medication regimen and also to lower the volume amounts back down to 90 grams of each. Over that weekend I fed her as I normaly would with no expectations and no fighting with her. Needless to say, Elizabeth had by this time figured out she didn't have to eat for me, so she basically sat there for 15 minutes and took very few bites.
Week 3 of the program started out well. SHe wasn't having any more gagging or retching. But we also had figured out that Elizabeth was way too smart for her own good. It was decided that if a therapist or doctor needed to talk to me about something that was happening with feeding, especially if it was a negative behavior Elizabeth was doing, that it needed to be talked about with out Elizabeth being around. She was listening to everything we were saying and then doing exactly that....i.e, acting up, gagging(behaviorialy), refusing to eat....you get the point. So thus began a regimen of Elizabeth being taken to play while I talked with the therapist about the meal she had just finished. This seemed to help tremendously with the negative behavior patterns. At home she was trying to teach me the new feeding program by getting her glow worm and bringing it to the table when she ate. She would take a bite of food, show me her clean mouth and then reach over and push her glow worms tummy to make it sing. When I told the psychologist and therapists this it was decided to put me in the room to observe.
So on Wednesday I was put in the room the first meal to just observe what was happening, but by the end of the meal I was giving her her tangible reward. The second meal I was prasing her after every bite and giving her her tangible reward. By the third meal it was decided I would feed her with the therapist sitting in the room guiding me. The fourth meal was the same, expect we learned very fastly having the therapist in there telling me what to do was not a good idea, as again Elizabeth was listening to everything and started to act up when the therapist told what to do if she did!!! So it was decided when we came in on Thursday I would feed Elizabeth with a "bug" in my ear. In other words, the therapist would be behind the two-way mirror and I would have a earpiece in my ear for her to guide me.
Well, Elizabeth decided she wanted to get a viral tummy bug and needless to say we didn't make it into the program on Thursday or Friday. She ended up just having half pedialyte and half formula in her tube the whole weekend to give her tummy a break and to get over the wonderful viral bug!!
Monday we went back in and they put me in the room feeding Elizabeth and I had the bug in my ear. All 4 meals went really well and they said I was doing a terrific job. Monday night I had to feed her at home just like I did at the program. They sent the food home for me to feed her and some supplies. It was the first meal I have ever had with her at home where I actually enjoyed it. There was no fighting, no stress, no bargaining and she even finished the whole meal in her allotted time. I was so happy and relieved to see that she could do it at home with me.
For the last 3 days I have been feeding her at the program and at home by myself with just some guiding with the bug in my ear. Today at our family meeting they said that Elizabeth now has 9 preferred foods in her diet. I couldn't believe she actually had that many foods she was eating on a regular basis. We also decided instead of trying to work on a new texture and move away from the smooth purees, we were going to try to increase her volume of solids and liquids again little by little to see if we can get her off her tube completely and comfortably for her. This is going to be our real challenge because of her volume sensitivity. However, they did also increase her Prevacid dosage as well today.
Once we get her to a volume where she doesn't need anymore tube feeds, then we can look at trying to change the texture of the food she will accept and eat properly. She also decided today that she was going to feed herself. Even though she is on a non-self feeder protocol, she is allowed to feed herself, if she picks the spoon up and puts it in her mouth correctly with in 5 seconds. The minute she doesn't do this, then I am to finish feeding her the rest of her meal.
It is very different how she eats her meal. It will be interesting to teach ehr teachers at school how they have to feed her her lunch and snack each day. She has 3 foods on her plate each time, and then her squeeze bottle of Pediasure. She gets to pick out a couple of "tangible rewards" toys, books, dvd, bubble, etc (these toys, books, and such are only given to her at meal time, she doesn't get to play with them any other time). She gets to start her timer and begin her meal. She is given a cue to "take her bite" of the first food on the plate. She takes that bite, immediatly gets a specific verbal praise "great job taking your bite of...., or I love how you cleared your spoon, etc..." then 5 to 10 seconds to play with the tangible reward. Then the reward os taken from her and she is cued to take her next bite, which is the second food on the plate. then the praise and tangible reward. Then cued to take the next bite, which is the third food on the plate...then praise and tangible reward. Then told "it's time for your drink", which I give to her via a squeeze bottle. Then again with the praise and tangible reward. This rotation continues until the timer goes off or she finishes everything. If she finsishes everything before the timer goes off, then I have to take the timer to 10 seconds and start it and let it go off. The timer ALWAYS ends the meal.
I know it seems very confusing, but once you see it, it makes sense and it works, so I am not knocking it by any means!!! i am happy she is eating. I can't wait to see what she weighs tomorrow.
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