Thursday, February 26, 2009

7 Down, 1 To Go...

All 5 pictures from Lilly's Birthday on Feb 18.
Picture 1: Kenzie as a "mountain climber" (Kenzie and Chance's mom Miss Billi )
Picture 2: Lilly and her cake
Picture 4: Lilly, Kenzie, and Kenzie's new friend Amaya
Picture 5: Kenzie's favorite walker

We are finally in the homestretch and we really just can't wait to go home *or at least Jordan and I can't. Kenzie loves it here. I really think she's going to miss having older kids around all the time. In the last 7 weeks I swear Kenzie has turned from baby to toddler before our eyes. I don't know what happened to my little baby that used to just sit on my lap patiently. Now shes trying to climb on things, run with her walker, crawl away from me, and play games all the time. Her receptive communication skills have grown so much. Although kenzie still doesn't speak words she now signs even more. She also understands everything we tell her and follows commands really well.

Tomorrow Jordan will get here and start his training. It should be fun to watch. As far as Kenzie's meals and drinks go, shes doing really well. Since we switched to an ounce of formula and 3oz of puree foods at every meal, we have noticed an increase in vomiting but we think her tiny stomach just needs to adjust. Also, I have really begun to see a trend in the vomiting as well. In the meals that I feed Kenzie with distractions (ie. people around) her vomiting must be down like 95%. I wonder if when Kenzie has distractions she stops thinking about how she doesn't want to eat, or how full she is???

Over the next week we will really just tweak and perfect everything for being home. Hopefully Jordan will become a pro feeder really quickly. When we get home our plan is to get a nutritionist and start to plan for therapies when we get to LA. We will meet right away with early intervention in NY. We will be busy for sure but as long as Kenzie's meals stay on track and we make that our priority, things should just get better. Jordan and I booked a vacation to Puerto Rico for the end of March. This is the first time since Kenzie was born that we have felt she is stable enough to go anywhere. We are so excited to take her away and just can't wait! I have a plan of what jars of food Ill need to bring, along with all of her formula and aside from meats, Kenzie should be able to eat the same as she is now for the 5 days.

I wanted to mention another little girl Isabella who we have never met but have been penpals with since we found out about KKI. She left the program back in July and was a true success story. She's had a rough couple of months and we have read her blog everyday. Jordan and I are so so happy to see that she's back on track and eating much better! I've talked to her mom a couple of times and her struggles remind us daily just how fragile these kids and their eating are. We really are hoping for only better and better days ahead for her now!

As usual thanks everyone for all the well wishes and cheering we get from you. I have never wanted to be home so badly as I do even though I've been so fortunate to meet great people here. 12 more hours till we see Jordan!!!!

Tuesday, February 24, 2009


Pictures 1 & 2: Kenzie's favorite nurse
Picture 3 & 4: Courtney Wagon ride with Poppa

So I can't spend much time posting because I have a horrible migraine right now BUT I just wanted to pass along the amazing news.

First, last night I decided to break the rules (shocking right???) and take liberty with where I gave Kenzie her snack at night. They said for me to feed her "where you feel comfortable" which really meant anywhere in the hospital but I decided to take her out. I took Kenzie to the mall and fed her in the food court. If I had asked the staff would have said no, so I decided to just do it, video it, and tell them after so they could critque me. People looking at us probably thought we were nuts, but Kenzie and I did great! We followed protocol to a "T" and kenzie finished drinks and food in under 17 minutes! When I told them this morning they were shocked at what I did but excited that it went well. They also said if Jordan is as good a feeder as I, then on Sunday we can take her to a restaurant and try it there. That's the last "scenario" I really think is important for us in real life.

Today was a landmark day! I started feeding kenzie 1oz of formula at each meal. We do it very slowly out of medicine cups but we did it! She did vomit each meal but not during drinks. I think just like when we moved from 2oz to 3oz of puree, her stomach now needs to stretch again to allow 4oz. For some reason Kenzie decided not to nap today so dinner and snack were a fight BUT the most important thing is that because I am giving her 4oz of formula during the day.... (DRUMROLL) Kenzie no longer needs daytime tube feeds!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Kenzie has been cut to 8 hours on the tube at night. She has surpassed the goals KKI put forth for her at their steering meeting and now hit our personal goals. Jordan and I are so so so so happy you can't even imagine! The only thing we need to do during the day is flush her tube with some water. It's really amazing!

I wanted to make sure I said thanks really quickly to Little Leena for the great stuff!!! The bag is going to be so cute when Kenzie takes Ballet with you one day! Also, to my boyfriend Gabe and his parents Nick and Elle... that sushi toy really made me laugh today! I swear it is my mission to get Kenzie eating sushi one of these days!

Anyway, we have 1 week left here and we will use it to train Jordan and hopefully gain the confidence we need to go home and stay successful. Hope everyone else is having a good night too :-)

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!!!