Friday, February 20, 2009

Less Than 2 Weeks To Go...

Pictures 1, 2, 3: My little drama queen! (Such a great present Car) on her second favorite ride, the wagon.
Picture 4: the Buggy of course!
Picture 5: Kenzie and the man in her life

So our countdown has begun! We are now in feeding bootcamp. A lot has happened over the last 2 days. Yesterday, the feeders left the room and started watching from observation. Kenzie had my number! She decided to test me in every way she knew how and pulled out all the stops. She started with a lunch meal where her negative vocalizations (aka crying) were at an all time high. She refused a few bites, gagged, vomited, and didn't swallow all the way. BUT... I didn't miss a beat! I had no idea Kenzie's Behavioral Psychologist was watching but when I came out she was telling me what a great job I did. I think she underestimated just how much of an anal person I am. That or she just doesn't know me at all so she has no idea. I've been taking my notes over the last 6 weeks and I am not about to throw all this hard work away by giving into Kenzie or by messing up. Also, I think I'm harder on myself and Kenzie than the staff here is. When they would probably accept her opening her mouth as a swallow... I have her make more of the food all gone. The main point is that they loved seeing me in a "horrible" meal with Kenzie because they knew that they could now trust me to feed Kenzie on my own without screwing up.
So... last night I started feeding Kenzie a "snack" meal. A snack meal is the same as all of her other meals except that it happens at night and there is no staff present to take data. They also had me try to feed it in my room to see how Kenzie would do in a different setting. For 2 nights now we have done this and it's going really well. Last night Kenzie had some issues with her peas. I think maybe they were extra grainy or something because on every pea bite she gagged or vomited. I told the staff that this morning. Other than the vomiting we did great. Tonight, the meal was what I would consider PERFECT! Kenzie took all of her bites, never needed the nuk, did not refuse any bites, and did NOT vomit! Both nights staff and people came in and out of the room and even though she had some distractions for the first time she loved it even more. The other fun part of feeding her in the room was that I was able to skype jordan in so he could watch. What we did was turn the webcam towards kenzie and jordan would press mute at home. Jordan could hear and see us but Kenzie had no idea Jordan was watching. It was like he was here and in the observation room. It made him so happy to get to see.

The other new thing was that today they started adding drinks to Kenzies meals. After I finish feeding her, the feeder comes in and starts a drink session. Kenzie has to take 8, 1/8th drinks adding up to a total of 1oz of water. They have her drink it from little tiny medicine cups. If all goes well which I think it has today, Sunday we will switch from water to her formula. Every ounce of formula Kenzie drinks by mouth is a half hour less of tube feedings! Right now, Kenzie is getting about 195 calories a day by mouth from food and still 600 calories in her tube. Her food is still stage 1 puree and will remain that way for sometime as she's really not doing well with any texture. All in all Kenzie's progress has been really great and we are totally happy. Hopefully next week I'll be able to add drinks to my snack meal too.

Last but so far from the least are our many thanks. I can't believe how generous everyone is! Seriously... you really don't have to. Maureen, thank you so so much for the chocolate and bowling set. Aunt Betty and Uncle Richie we are introducing everyone to "jewish" baking because of you! To my mom's mahjong (ill never spell it correctly) friends - Toby, Cathy, Linda, Paula, and Lois, we have used the books in Kenzie's feedings and they are all so fun. Kenzie's roommate Chance even took one of them into the bathroom to sit on the potty (such a boy!) I can't remember if we thanked cousin Zachary for the bowholders so I'll do it again now. We can never obviously have enough room for bows. Weller Family, that chocolate went so fast you wouldn't believe it. The nurses were in and out of our room sneaking into the stash! Even though it was awhile ago, the entire Angel family... I really can't remember if I gave the shout out you deserve but thank you guys! I promise one of these days I will send proper thank yous to everyone, just I have not really had any freetime to do it. It's hard to believe but we really are so busy here all the time. Ok there... I think I got everyone and if I've forgotten I promise we are so happy every time something shows up here. It's really unnecessary! We are so lucky to have family and friends like all of you!

Grandma Eiee and Grandpa Billy came and love watching Kenzie eat and play. They'll stay here through the weekend and love her up because Jordan is on call. Jordan will come back Thursday morning and will start his training. We are joking about who will be the better feeder. Have a great weekend!!

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