Monday, February 16, 2009

We love visitors!

Picture 1: kenzie and aunt fay
Picture 2: kenzie and uncle scott
Picture 3: kenzie's funny face
Picture 4: Kenzie trying to smash daddys crabs
Picture 5: Jordan's aftermath

Yesterday Kenzie's Great Aunt Fay and Great Uncle Scott came to visit. They got here bright and early so they could see all 3 of Kenzie's meals. All 3 went amazing!!! Kenzie's primary feeders really can't believe her transformation. Also, the therapists that feed her sometimes or have taken data all have looks of shock on their faces when they look on. We really don't know what clicked in Kenzie's head but something is working. She is eating so fast now we don't even have time to click a timer. She probably takes 2 bites in her allotted 30 seconds for 1. Kenzie is now getting 9oz a food a day and probably has only vomited about 1 - 2 maybe total. We can't wait to see the nutritionist tomorrow because we know for sure there will be more tube cuts in store.

The new development with her feeding is that I am now in the room with her. I have gone back to my high school ranks and have joined her team as captain of the cheerleading squad. Yesterday at lunch when Kenzie looked up and saw me in there she started to giggle. Then she looked again and started giggling some more. She really loved having me watch her. Today, they promoted me and had me give Kenzie her 15 seconds of incentive every other bite. Kenzie was tired though for lunch today and although she ate all her food and did it quickly... she was very cranky and cried a lot. Hopefully dinner will go a bit better. I think tomorrow at either lunch or dinner I may start feeding her! I am very interested to see how she does with me since most of the practice I ever got before KKI was nightmareish.

This weekend when we introduced yet another food (corn) into her puree list, I realized I haven't blogged about one of the most important things I think about everyday here. Kenzie ate corn Saturday for dinner and had a bunch of diarrhea Sunday morning. Although shes been doing great digesting everything we have given her so far... her diet has been VERY limited. Besides fruits and vegetables all we have tried is rice cereal and oatmeal. We have not even given her anything we think she would react to until the corn. We are so happy on a daily basis about the improvement with Kenzie's eating we sometimes forget or try not to think about if the shoe will drop. For those who have just started following, Kenzie's oral aversion is due in major part to her lack of ability to digest anything for the first 8 months of her life. Kenzie could not tolerate breast milk. She also lost weight on Pregestimil (which is a few steps more broken down than regular formula). For 7 months Kenzie was on Elecare which I think something like 99% of the population can digest. If she ever had more than a total of 7oz a day, she completely stooled out and always had diarrhea. Kenzie was TPN dependant until July because of this. She used to sometimes have upwards of 17 stools a day. Until we found Vivonex Pediatric which is the formula she is currently on she never took a full daily dose of anything into her stomach. Vivonex is basically another step below Elecare. It has less fat than Elecare. Every time we go to a new GI dr, their first question has always been to us, "well what can she digest by mouth?" and we have obviously never had an answer for them because she wouldn't take anything by mouth. The more foods we introduce, the more we get nervous and less nervous (if that makes any sense). We get more nervous because we take one step closer to finding her breaking point, and less nervous because she is digesting everything so far. We gave Kenzie corn again last night at dinner to see how she'd do again and all seems to be well, so hopefully it was a one off thing. In about 2 weeks time we should finally get the results from the Dr in San Diego who is testing all 3 of us for a rare genetic condition but we really believe the results should be negative based on how well shes doing now. We might never know what is or was wrong with Kenzie from birth but as long as we can have her on a good solid diet, it'll be ok.

Now back to the fun stuff... We went for our regular Sunday breakfast at Jimmy's with Aunt Fay and Uncle Scott and then to dinner at Moe's Crab Shack. I was expecting a dive given the name but there were tablecloths on the table and it was much nicer than we expected. The food was super good and Jordans meal was worthy of the pictures above. Kenzie had a great time coloring with Aunt Fay and playing in the playroom with Uncle Scott and we were really sad to see them leave.

Tonight Jordan will go home and not be back until after his Vegas trip. It'll be about a week and a half. I was supposed to go with him originally but as usual... things in our life don't seem to work out as planned. When he comes back, I will be Kenzie's primary feeder and Jordan will get trained himself. I would assume also by then that we will have added a 4th meal in the evenings.

I don't think I ever got to thank Auntie's friend Lois for the great gifts and all of her students and coworkers for theirs as well but I really wanted to! One of these days you all will get thank you cards but my time has really been limited down here. kenzie's taking her usual nap now and hopefully dinner will go better than lunch... fingers crossed!

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