Tuesday, February 10, 2009

Where we left off...

Picture 1: Kenzie at Nanami (sushi restaurant) giving the sign for "can I have it"
Picture 2 & 3: Kenzie and Lilly doing shaving cream art

Feeding wise the weekend was not good and I was looking forward to Monday coming so we had the team back and would hopefully make some changes.

Monday morning the team realized as I already had, that something wasn't working. I spoke to Kenzie's primary feeder about what she thought it might be and when it started exactly since we have changed so many things along the way. At breakfast, if I recall correctly, kenzie needed the nuk every time so at lunchtime we changed 2 things. The first was to make the food slightly thinner. It's still not as thin as a stage 1 puree baby food jar but not as thick as it had been all weekend. She is still on all fresh foods but with a bit less rice cereal added. Right away Kenzie had an easier time with it. Our primary feeder "L" also figured out something that is really making a huge difference. Kenzies protocol had been that she took her bite and was given 30 seconds to clear it. When the buzzer goes off the feeder tells her to show them her clean mouth. All weekend Kenzie still had a full mouth at the 30 second mark. "L" realized that if after few seconds she asked her to show her her mouth, as Kenzie opens her lips sort of push the food back in her mouth. She then says "kenzie, a little more... keep working" and again waits 5 - 10 seconds and asks her to open her mouth. When she did this almost every time, Kenzie had swallowed! She barely needed the nuk at all yesterday. Because of this "discovery" it will now be in Kenzie's protocol that whoever feeds her will have to ask twice during her 30 second time period for Kenzie to open her mouth. They also changed Kenzies use of the cell phone from a constant to an incentive. After she clears her mouth, she can play with the cell phone for 15 seconds.

Today, breakfast was kept the same as yesterday and negative vocalizations were kept at a minimum. She did well and at lunch I was told that we would make another change. They were now switching from her 20 bite session to 1 ounce of food however many bites that took Kenzie to eat. Kenzies been getting about an ounce every meal but this way they would know exactly. In order to try and get this done quicker since taking away the incentive didn't work, they were going to use "rounded" spoonfuls. Up until now when they give Kenzie a bite, the amount of food on the spoon is pretty small. They level out the top. At lunch today they were going to try basically a heaping teaspoon and see what happens. There is a thought process that says that the more food you put in the kids mouth, the more they realize it's there and works harder to swallow. So at lunch I was very anxious to see what would happen. Her percent of "expel" (what falls out of her mouth and needs to be put back in during the bite) went up a lot and her negative vocalizations were very high (partly because lunch is always a bad meal for her... shes very ready for her nap) BUT the rest went so great! I think she ate apples, bananas, and sweet potatoes maybe? Bite 1: Kenzie took her bite and after being asked to open her mouth the second time ... she had cleared the food. Bite 2: Kenzie cleared the food before they even told her to open her mouth!!!! Kenzie finished all of her 1 ounce of food in less than 10 minutes and about 9 bites I think? Timewise that's about half the time it was taking Kenzie to get approx the same amount in. She had no vomiting, maybe 1 or 2 gags, and no refusals. You should have seen our feeders face... it was a mixture of shock and glory all at once.

During dinner yesterday our behavioral psychologist came into the observation room to watch Kenzies meal and talk to me. She sees Kenzie at this point as not having really many behavioral food issues at all. She thinks most of her issues are a skill deficit. That's good and its bad. It's bad to her because as she puts it "I can fix a behavioral issue in a few days no problem" whereas a skill deficit can take days, weeks, or months for kenzie to hone. She did say that in a good sense if we go home and follow kenzies protocal to a "T" we should have no issues keeping it up because right now she isn't fighting us at all. We just have to find really good therapists in NY and Cali to help us with the skills. In about a week or so, I will start feeding Kenzie myself... I really think and believe that will only go better for her since she is always willing to do more for me than therapists unlike many older kids.

So that's basically where we stand. I'm crossing my fingers that dinner goes as well as lunch although with Kenzie one never knows. We always seem to have ups and downs. My mom is on the train now to come visit till Thursday and then Jordan comes friday. We cant wait!!!

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