More Pics...

Picture 1: My diploma
Picture 2: My friend Anthony (Miss Patti's son)
Pictures 3 & 4: Hard at work
Picture 5: I love my daddy!

Pics...

Picture 1: I love Miss Patti!
Picture 2: BFF Lilly
Picture 5: Wagon Ride with Miss Patti

Home Sweet Home

Picture 4 & 5: Kenzies 2 main feeders
All pictures: Kenzie with some of her favorite KKI staff

Sorry I haven't posted an update but we have been busy here. I'm still working through unpacking all the crap we had being away for 2 months. Also, we are trying to figure out a good system to feel the most comfortable with feeding Kenzie here. Needless to say, we haven't sat down much in the last 2 days.

Kenzie's last day at KKI was mixed with emotion. Poor Kenzie didn't smile all day because she was in a Benedryl hazed stupor from the allergic reaction Wednesday night. Luckily the hives haven't returned. We probably will never know what caused it but as long as it doesn't happen again, I guess it doesn't matter much. We had breakfeast, a meeting, lunch and then packed up to go. As much as all I wanted to do was be home, I knew I was going to miss the friends I made there. I also knew Kenzie would miss how much fun she had everyday with all the other kids and in the playroom. I wish she had been in a better mood for her last day but what can you do.

More importantly Kenzie's stomach is still a mess. She is still having constant diarrhea and has now lost a pound and a half which is almost everything gained while we were away. We had to change her clothes Friday night 3 times while she slept because its so explosive that it just goes everywhere. To make matters worse, she is again vomiting up almost everything she eats. Meals are very trying and we are frustrated. We think its behavioral based on medical which means that Kenzie isn't feeling well so she really really doesn't want to eat. She forces herself to gag and vomit every time we present food to her. We are plugging along though and doing what we are supposed to... giving her every meal and not allowing her to win. We spoke to Kenzie's GI doctor and he said if we can't get a handle on the diarrhea by Tuesday, we will have to come in. We also went to her pediatrician who gave us tubs to collect her stool. We will test for CDIF, rotavirus and a bunch of other bugs she could have come down with while at KKI. Unfortunately, all these tests take days to come back so we just have to sit tight now. Of course our big fear is that this isn't something that will go away and somehow Kenzie has reverted to the issues she had since birth. We really are hoping at this point its CDIF because at least then we can treat it and move on. Our vacation to Puerto Rico is now questionable as its only 3 weeks away and if she is still not stable, its not even an option to go away.

The other bad news is that after months of Jordan and I worrying about Kenzie's length and being told to hang in... our pediatrician is now concerned. Kenzie is 16 months old now and has only grown 9inches since birth. She has fallen off her own curve and is not even close to the charts anymore. He wants us to see an endocrinologist. It's probably the only type of doctor Kenzie has avoided seeing so far. Another day, another worry...

Kenzie has been in a funk since we got back. She is cranky and whiney. I think its partially that she got so used to seeing her friends all day long at KKI and partially that she isn't feeling well. It doesn't help that I don't want to take her out now because I hate to think if she has something contagious, we would spread it.

I guess I should try and find some good news so that will be the fact that we are home!!!! Jordan and I are finally sleeping in the same bed together after 8 weeks apart and we have Chubby back. Kenzie loves having him around. I have a bunch of pictures to put up so hopefully I'll find time and energy to do it tonight. Fun Saturday night...

keeping it interesting and going out with a bang!

As usual and like many of the kids who wind up inpatient at KKI, Kenzie likes to make a normal day memorable. Kenzie had her snack at 6:30 (sweet potatoes, oatmeal, and banana applesauce - nothing new about them) and then her great friend Miss Patti took her for a ride in the wagon. Patti said she noticed something red on Kenzie's face during the ride and tried to wipe it off but thought it must have been because she vomited during the snack. We put Kenzie to bed around 8 and settled in for our last night here.

At around 915, I noticed Kenzie in a sort of half awake, half asleep state. She was moaning and writhing around uncomfortably. Kenzie is normally a very good and sound sleeper. After a few minutes, I started to pat her back and talk to her. When that didn't work I told Jordan it seemed like something hurt her because of her movements. He noticed that she kept grabbing at her diaper. I did what I always do and climbed into her crib with her so we could "spoon" and she would fall back asleep. Kenzie kept taking my hand and literally throwing it off of her. She did not want Bunnie, her blanket she cant sleep without and wanted nothing to do with me. Now we really knew something was wrong. Because it seemed like she kept grabbing at her crotch, we thought maybe her diaper rash got worse and I told Jordan we should change her diaper. It was pretty dark in the room with just a low dimmer on but when I took off her diaper everything seemed really red. We turned on a light and immediately saw that (and she will kill me for using these terms one day) her labia were filled with hives and all swollen. Jordan turned on a light and we stripped her naked. As it turns out her whole body had hives and a rash. The scariest part was that Kenzie's face, mouth, ears, and neck seemed to get worse every minute. We called for the nurse and told her to page the doctor on call but luckily we keep baby benedryl around and gave her a dose.

With all of Kenzie's allergic type reactions she's had, they have all been digestive and have never been anaphylaxic (sp???). This was actually one of the reasons the team decided to put Kenzie inpatient. They were always afraid something like this might happen. The benedryl worked and luckily we didn't have to give her any shot because her airways stayed open. Within 20 minutes Kenzie was smiling and ready to play! She really is amazing. The doctor decided to switch her overnight feeds to straight pedyialte from formula because he was afraid maybe her batch had been contaminated and the pharmacy wasn't open to make her more. So now we sit and scratch our heads as to what Kenzie ingested that caused such a systemic reaction in her. We know because of her face, mouth, and labia that it was something she ate but we have no idea what. We will make sure this morning that the team downstairs didn't put anything in her foods different but are pretty sure that they would never. If you were to see the kitchen they cook Kenzie's food in, it's pretty amazing and totally sterile. Because they have so many kids with allergies, every kid gets their own station, cooking utensils, blender, etc. Kenzie's station and bin in the fridge are marked everywhere with "high allergy alert" postits. It has always been one of the things I am very impressed by here. They really take kids sensitivities with the utmost caution.

The only thing we can possibly think of is that the sweet potato was a fresh batch of food they just made yesterday. Maybe somehow it had touched something (they puree fresh vegetables for Kenzie)?!? But what... so now we have one more worry with Kenzie and might need to get one of those pen things to carry around because we don't know what caused this. We always said, and I think I was recently talking to my dad about it, that at least with kenzie, if she couldn't tolerate something... shed just poop it out. We didn't have the worry of a full fledged allergic reaction. Now we do.

I finally convinced Jordan to stop checking on her and go back to the hotel at about 11:30. He was sitting there with a flashlight examining her to see if the redness was going down every few minutes. The doctor here told us to give her benedryl every 4 hours all night and watch her. So needless to say, I have been up all night. The good news though is that I should sleep in the car and in less than 12 hours we will be home!!!!! I will make an appt with our immunologist/allergist as soon as I can get in to talk about what happened and see if he can figure out what it might have been but we may never know unless it happens again.

On a really positive note, our nephew Zachary found out he is going to get a baby sister yesterday!!! Tracee and Adam are so so happy! I can't wait to pass down some of Kenzie's dresses and buy her some bows! Congrats :-)

We are leaving here around noon and I sooooo soooo can't wait to get in my bed tonight. I will post pictures of our last few days tomorrow. Right now I'm going to get dressed and pack up! Have a great day :-)

SOOOOO OUT of here

So we are in our final hours at KKI. Unfortunately, our last week at KKI has not gone as we had hoped. Instead of making final tweaks and improvements to our therapies, we are really trying to just hold Kenzie's head above water. Kenzie's stomach bug has really put a damper on everything. She is cranky and cries through her meals and therapy sessions. She vomits a lot more than the norm and she is falling asleep in her meals because she is so worn out from the work it takes to poop, vomit, and gag. We have not been able to increase her volume at all, or get her back to the variety of foods she was on either.

Pretty much we might be better off an home right now. We are afraid because of the rancid smell of it that Kenzie may have CDIF but they won't test her here because they will need to put her on isolation. They also won't put her on the Flagyl preventatively that would take it right away if she does. We have an appt with Kenzie's pediatrician Friday so we can get everything taken care of then, but it would be much better if we could know now. That way she would feel better quicker if it is in fact CDIF. We are now seeing for the first time how a GI bug affects Kenzie as compared to healthy people and it's not so pretty. I feel bad for the poor thing.

So the last few days kenzie has thrown some nightmarish meals at us. Every time the therapists come out of the observation room they say we are dealing with it well... but it's very hard because we know she's just not feeling well and doesn't want to eat. I really cant blame her... when I have a stomach ache I don't want to eat either. Jordan and I realized tonight at dinner that her vomiting during meals is for sure behavioral. She is gagging and vomiting as soon as she sees me go to give her the first bite. As for Kenzie's protocol, we have made 1 final switch. Kenzie's drink and meal session will no longer be separate. Kenzie now gets 3 bites of stage 1 puree food, then 1 drink of formula (which is 1/8oz). She no longer gets "15 seconds of incentive" and now just has toys to play with throughout her meal. I think overall that will be so much better as it makes meals even a tiny bit faster and will seem more "normal" to the naked eye.

Hopefully I will post again tomorrow before we leave here about how Kenzie is feeling but if I don't I should say that although the last few days have been pretty depressing, our overall feeling about KKI is that we are so happy we came. If someone should ever ask us what we think about it here, we would recommend it in a heartbeat. Without KKI, we never would have gotten Kenzie to accept anything by mouth. We really don't feel that we could have done this at home. I would say to anyone that they should go in knowing that they will need to fight for the things they think are best for their child, but in the end if the parent and team here can compromise... it should all work out.

If I had to change anything about this place it would be the way KKI places value on parent suggestion and input. For many weeks we tried to get the people here to listen to us about Kenzie's unique tastes. She is very unconventional when it comes to music and toy choices. She craves structure where many kids do not. I do feel had they listened to us sooner, Kenzie's progress might be even greater. I also really feel like they should have some sort of support group for parents after leaving KKI. One of the best things about being here has been that all the parents get to be in it together. Finding good therapists when we get home and when we move to LA is going to be really hard. If there was a group somewhere online or off... parents who want to share information about good and bad therapists, horrible days, and their progress day to day can do that. I know confidentiality is an issue but it should just be something that is offered so that parents who want to can open themselves up.

We are so lucky we found KKI when we did. Most people don't make it here until their child is 3. By then, their behaviors are so ingrained in them that it is a part of who they are. We really believe that kenzie's post KKI transition is going to be even easier because of her age. We can't mention our therapists by name on here but really want to thank each of them for all the effort they have put into helping Kenzie. I think a few of them have fallen for Kenzie's adorable charm and she is for sure going to miss all of them and the friends she's made. Personally, I think Kenzie is going to be mighty bored when she gets back home and only has me to play with!!!!

A Blip...

Well we thought we had a course of action for our last week here but Kenzie decided she had her own plan as usual. Yesterday morning we woke up to a fever, vomit and lots of what Kenzie's friend Lilly calls the "uh oh's" (aka diarrhea). The fever is now gone but the rest of it has stuck. The good thing is that because she had the fever, we know that this is not food related but some kind of bug. We are trying to get Kenzies stool tested for CDIF (she had it in June) because it smells pretty rancid. So instead of our usual 1oz of formula and 3oz of food, we have had to decrease to 1oz of food and 1oz of formula. Kenzie's vomiting during her meals was just out of control. Hopefully she will be better in a day or 2 and we can finish making the last bit of progress before we leave Thursday. We are so lucky though that only the fever and vomiting phased Kenzie. The "Uh-Ohs" are so normal to her that she doesn't even notice.

Jordan has been feeding Kenzie for the last 2 days and I have never seen him so nervous! It was actually pretty funny to see someone who performs surgery on a daily basis go into the room to feed his daughter. When he poured his first set of drinks for Kenzie, his hand was shaking like crazy. I was sitting in the observation room laughing at him. A meal or two later though and he is now a pro. Given that Kenzie hasn't felt her best she has been throwing him for a loop in there.

Grandma Daryl (Or MamEye as Skylar calls her) and Grandpa H (PopEye) came yesterday and got to see Kenzie for a day. We couldnt take her out because she hasn't felt well enough but we did get quality time here at KKI for our last weekend. Jordan and I literally are counting hours till we get out of here. We soooo can't wait to be home.

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!!!!

LANDMARK DAY!

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 :-)

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!!!

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!!

Feeding Your Child

Pictures 1 & 2: Lilli and Kenzie doing our laundry
Pictures 3 & 4: Kenzie trying hot fudge for the first time.

Picture 5: Kenzie doing her sign for "More" at dinner the other night

I don't think anyone can truly understand what it's like to feed a child that doesn't eat except for other mothers going through this. Until I sat down here to type this, I don't even know if I got the enormity of how great it felt. When I was pregnant all I wanted to do was breastfeed. I don't look down upon people who don't but for some reason it was just something I always wanted to do. I loved the idea of getting to give my child that time with me. So at 2 weeks old when I was stripped of that ability, it was truly heartbreaking. Few people know how hard it was for me to wean myself and watch as I would have to pour my milk down the drain, especially since some people try so hard and just can't produce. I was producing more than enough and yet my daughter was completely allergic to my milk. First, I was told my anatomy was too small to fit a baby and I needed an emergency C-section and then this. As a new mom I don't think you can feel more inadequate than that. I was lucky to overcome the horrible feelings I had about myself as a mother in order to take the best possible care of Kenzie but it is a constant struggle when I think of that time. To make things worse, because of all of Kenzie's issues, very soon after, she started refusing a bottle. Again, the normal everyday things mothers get to do with their children was something I'd have to do without. Some people find it annoying to have to stop everything to feed their babies or give bottles... but I assure you that if for some reason you couldn't, it would be missed. Jordan and I had to give up a lot in the last 15 months with Kenzie and the older she got, the more we saw the big differences between her and normally developing children. Sometimes we would try and make jokes about the fact that Kenzie refused to put anything in her mouth and sometimes we would remain silent while thinking how sad it was in our heads. But, for the most part we were able to be thankful that cognitively she was and is perfect.

To make things worse there have been other people who have said flat out to us "you know how it is" or "I totally understand you" when their babies aren't transitioning well from formula to solids... or when their children are a bit picky with textures. All this while their child is sitting in front of us holding their bottle. When we hear things like this inside we want to either cry or scream at them but we try and remain as polite as possible. But I guess I am finally venting... NO! We don't know how it is and NO! You don't understand. You can't possibly. We came here because our child was 100% tube dependant. She was also for a long time 100% TPN dependant because she couldn't even digest any formula we tried giving to her stomach. We so badly WANT to know what it's like but we have not been that lucky.

For the most part both Jordan and myself love talking to other parents about the normal everyday ailments that babies have. Ear Infections, Shots, Colds... bring it on. But feeding has always been a sore point because Kenzie's oral aversions are so abnormal and we both have always felt like maybe if we had done something different we could have prevented this (as much as every professional tells us we are crazy). As I sit and write this now, I've noticed its rare I let myself be so free with my thoughts to anyone other than Jordan but I think it's important for moms like me to get this out. I can say it aloud right now that for the last day I have fed my child! I would hardly say that the way she is eating is normal by any stretch of the imagination but she is taking food by mouth, and I am the one giving it to her. Also, for the most part, even though she is far from happy, she is not fighting it!

I caught myself during my lunch with Kenzie and really just couldn't believe it. I have fed now 4 meals of 3oz each of totally pureed foods to her. She has tested me already but I didn't miss a beat. Saying things like "Kenzie, open big" and "Great job swallowing" are becoming second nature to me. Ignoring her bad behaviors and resisting the urge to coddle her when she vomits are becoming easier and easier as I can see what a difference it makes. I guess I don't need to give many details on how my feeding Kenzie is going as my post probably says it all, but in short, after all of the worry a few weeks ago whether KKI was the right decision for us at Kenzie's young age; Jordan and I now know we have done the right thing. Kenzie will one day get off of her GTube and we will work hard everyday to make that happen as soon as she will let us.

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!