Monday, February 23, 2009

New Day, Same ____

This weekend we had a great time with Eiee and Poppa. We went to Jimmy's twice and the Green Turtle too. Kenzie had so much fun with them (as you can see in the pictures). As for meal sessions, well, they are really going amazing! Kenzie barely ever vomits with me anymore (im biting my tongue as I say that) and is usually pretty comfortable and happy. I have been feeding her, her "snack" in the evening in our room upstairs. There are distractions with people walking in and out, family members around, and one night Chance was even in the room. For the most part Kenzie and I don't miss a beat. I have learned that as long as I can tune everything else out, she sticks to her protocol and timing. 3oz is now taking less than 12 minutes 90% of the time and sometimes even less than 11mins.

Drinks were a different story. This weekend Kenzie had a new feeder for her drinks session and she was not happy. The protocol is that I had been giving Kenzie her meal and then the feeders leave the observation room to come into the feeding room. I sit next to Kenzie while they proceed to get her to drink an ounce. Lunch was beyond terrible on Saturday. She cried and vomited, and cried and vomited some more. Kenzie has a 15 min time cap on sessions so at the end of 15mins she had only taken 3/8 oz. It was a huge wakeup call to Jordan and I that she has not forgotten her bad behaviors at all and will bring them out whenever something new is presented or she is scared. I had suggested doing the drinks before i started her meal without me in the room because i know she does better that way but they didnt listen. By dinner the feeder came out and told us that drinks were being discontinued alltogether for fear that she was crying so much she was at risk for aspiration and the feeder didnt feel safe even trying. Needless to say I was REALY upset and made it known. First, I felt like that goes against everything they believe here in this program about ignoring bad behaviors and rewarding good. In Kenzies eyes she was being taught that she cried so much and vomited so much that she now didnt have to drink anymore (ie: she got out of doing what she didnt feel like doing). This can start a whole pattern. We've been down that road before. The other reason I was so upset was because at our steering meeting weeks ago we had discussed the importance to us about teaching kenzie how to use either a straw or a sippy cup so she would have some sort of independance with drinking. Its just not age appropriate for a 15 month old to walk around with a cup... or if i send her somewhere for someone to feed her drinks with a medicine cup. They had promised us they would work to teach her in her therapies even though I understood it would never make it into her meals but then they never did (and trust me i asked repeatedly). So... i was in a pretty crappy mood and let it be known to the staff here. Luckily, they listened to me! Last night they brought drinks back in but did it in the way I had asked. They did her drinks session first with me out of the room. It went really well. Kenzie took her ounce of water within 5 minutes. Then I came in to feed her dinner and that went really well too! This morning was the same but at lunch they had me feed Kenzie her drinks. Theres definitely a learning curve and I was not confident but all in all it well ok. Tonight should be more of the same and I am not sure if they will want me to do try drinks on my own yet tonight for snack.

I also spoke to Kenzie's OT today and again reiterated how important it was for Kenzie to learn how to use a sippy cup or something to that extent and she listened too! I was so happy when I came to pick kenzie up and found out that kenzie drank a little more than half an ounce of her formula from a modified sippy cup! Hopefully tomorrow we will switch from water in her sessions to formula.

While Kenzie napped today I got my first lesson on how to make Kenzie's food. Because of Kenzies unknown GI conditions her variety of foods is pretty limited and everything we make is pureed down in a different way. I will leave here with a cookbook. Right now Kenzie eats fresh squash, sweet potato, carrots, corn, apples, bananas, pears, peas, mangoes & green beans. She also has eaten from earths best jars: turkey & Veggies, chicken & sweet potatoes, and a whole bunch of fruit mixtures. She is still at a stage 1 but they will take a jar of stage 2 food and blend it to turn it into stage 1. In order to make the consistency correct for some foods they add rice cereal. Today we made carrots, pears, and peas for Kenzie. I tasted all 3 and the peas seem to be grittier but they were definitaly smooth. We are giving them to her for dinner tonight. If she doesnt do well with them I might not make them at home. They take a lot of work to make because they need to be steamed, then strained by hand and then pureed. But it was really fun learning how to make the stuff. Tomorrow or the day after when she needs more I will help learn again. Also, Ive asked them to teach me how they puree some regular foods like toaster strudels for if Kenzie can ever digest that. They literally can almost puree anything here. It's pretty amazing.

As I was typing this Kenzie got such a cute package from her good friend Leena! Awhhh its so cute and I can't wait for Kenzie to start ballet so she can use that bag for it! Thank you!!!

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