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!

Happy Days Are Here Again! (First Post Written By Jordan)

Pictures 1 & 2: Happy Valentine's Day!
Picture 3: Kenzie playing with her new friend Emilyean
Picture 4: Yet another buggy ride!
Picture 5: The shirt we bought Kenzie at Ra Sushi :Future Sushi Lover!

Well, it's Valentine's Day and Kenzie has given us the greatest gift! Excuse me for the cheesy title of this post, but it's the first time i've written and i can't really contain my (our) excitement. I arrived in Baltimore yesterday in time for lunch. It was the first meal i was able to watch in about a week. I knew Kenzie had some good meals while i was gone, but i wasn't really in store for how well she was doing. Yesterday at lunch and dinner, Kenzie ate 2 ounces of food in about 15 minutes without gagging or vomiting. Something must have clicked in the past few days, but kenzie swallowed the food as soon as it went into her mouth. Just 4 weeks ago, we would get excited if Kenzie opened her mouth to allow a dry spoon in her mouth. Now, she's eating 2oz of food!

Today was Valentine's day and, of course, Kenzie dressed the part. She ate well at breakfast so at lunch, her therapists changed it up a bit. Instead of giving her a toy to play with after each swallow, they used the incentive after 2 swallows. This hopefully would shorten Kenzie's meal and allow them to increase the volume at dinner, if she did well. At lunch, we couldn't believe our eyes. No vomits, no gags- but better yet, Kenzie ate 2oz of food in only 8 minutes. After nearly a year and a half, Kenzie finally looked like she was eating like a normal kid. Although we still have a long way to go and lot of therapy to endure, we were simply overwhelmed.

At dinner, the therapists increased her volume to 3oz and added corn for the first time. Amy and I looked on in complete disbelief. Kenzie opened wider than she ever has for every bite and swallowed every bite as soon as it entered her mouth. Kenzie ate so quickly her therapists stopped using the timer. As the therapist's looked on in shock, we were hysterically laughing in the observation room because it was so comical. The food couldn't go in fast enough. We couldn't believe this was our child! It was such a moment of satisfaction. We can't tell you how proud we are at the progress Kenzie has made. Our little girl has been through so much, yet you would never know it. She's such a happy kid with an incredible affect. What a great Valentine's Day gift our daughter has just given us!

Good News, Better News, GREAT News!

Good News... Kenzies poops have NEVER looked better! (She'll kill me one day for writing that but whatever)

Better News... Today was a great day! Actually the last few days have been really terrific! Kenzie is taking her bites and swallowing so much better than ever. She clears her mouth now without much effort and is starting to open around the spoon with more confidence. She very rarely needs the nuk too!

GREAT NEWS... We got our first tube cut!!!!! At current time Kenzie has been on 750 cc's of formula a day. Her rate has been 60cc per hour. That means she was getting her tube feeds for 12.5 hours a day. We have been trying to give her about 2 - 3 hours during her nap time and the rest at night while she sleeps so that we don't need a backpack or anything during wake hours. PO (per oral) Kenzie is now taking 2oz each feed and not vomiting up that much. Calorie wise it's about 100 calories a day. So today the nutritionist came in and told us that they would cut Kenzie's tube feeds 1/2hr per day or 30cc. We haven't quite understood why if shes gaining so much weight and taking in 100 calories by mouth, that they are only cutting 30 from the formula but we are so happy we don't really care much. We can find out Tuesday when the nutritionist comes back.

The Jtube has really changed our life for the better. With no vomiting and faster rate, managing tube feeds has become so much easier. My goal coming here was to have Kenzie leave here tube free during the day. Although my initial goal was to do that by having her take less formula all around and not so much at night either... at this point I dont care. If Kenzie can get cut 1 more hour while shes here in the next 3 weeks, I will be really happy!

If things continue to go as they are and Kenzie keeps finishing meals as fast as she has been, we are going to try and increase her volume from 2oz a meal to 3oz.

Sunday, I start my training. Sunday and Monday I will be in the room with kenzie while she eats to cheer her on. Tuesday I start feeding her with a therapist in the room to help. I am excited and nervous all at the same time. Jordan will get trained in 2 weeks so we both know what we're doing. Also, we got the green light to try chicken and turkey next week. This will be Kenzies first meats and we are very anxious to see how her gut will respond. The last plan they have in store for us that we know about as of now is that if I become solid in a week or so at feeding Kenzie, they will add in a 4th meal that I will do alone with Kenzie in the evening down in the feeding rooms. That means more calories and more tube cuts!

No time for pictures but I'll put some up tomorrow :-) Have a happy Valentines Day!

Thursday Night

Eiee left today right before we went to the aquarium. Luckily, she stayed long enough to see Kenzie eat some really great meals! Kenzie is now eating 2oz at every meal. Her vomiting is sporadic during meals but today she only vomited 25grams out of 180 for the whole day. To us that is a huge feat. We also saw something new with Kenzies development. They switched her protocol back to an incentive a few days ago. She's never really "gotten" it, nor has she had any interest in anything we've given her. Today we switched incentives at every meal to see if kenzie would respond to anything. At dinner we used a shape sorter. Kenzie wanted it so badly. The feeder told her to "make it all gone" and then she could have her toy. Kenzie looked at the toy, moved her mouth so quickly and then reached for the toy again. SHE GOT IT! It's amazing the difference between a 14 and a 15 month old. She is definitely growing up here.

We took a KKI trip to the aquarium tonight and really had a nice time. Kenzie loved looking around and it really kept her interest. They don't allow strollers int he aquarium here so all i have to say is thank god for the bjorn i bought today (yes i already have 2 at home but this helped!). Kenzie is heavy now to carry around at 19.7lb. The pictures above are all from the outing.

Time for my postout thank yous: Cousin Zachary I love love my hairbow holder. however did you know it would be the perfect gift?? Aunt Fay and Uncle Scott... mommy is eating the cookies as she types and I am sleeping with the teddy in my crib. Thanks so much!!

Wednesday

Picture 1: Kenzie's friend Anthony with Lilly
Picture 2 & 3: The dogs came again! Kenzie had a great time with them as usual.
Picture 4: Kenzie figured out that not only does pen write on paper but on her hand too!
Picture 5: Kenzie and her Eiee at dinner

I'm trying to figure out where I left off without going to read my blog but my brain is fried and I don't think I can manage it. Ok dinner yesterday... Dinner yesterday went really well! Again, we noticed that she threw up on the peas so I think we are looking into whether that's a texture thing or taste or what. Breakfast and lunch today also went so well with the rounded spoon that Kenzie was finishing her 1oz of food in less than 10 minutes. Because of this for dinner they decided to change her protocol again. She now has to eat 2oz! In terms you might understand... a normal jar of baby food has 4oz so its still a really small amount but we are making progress. Shes been taking about 40 calories a day right now PO (by mouth) and maybe now we can up that to about 80. Percentage wise thats only about 10% since she needs about 800 calories a day. The other thing they changed was that they added back the finger prompt for "kenzie open and take your bite" i had noticed about a week ago that she had stopped opening her mouth wide enough for her bite to go in easily. With a rounded spoon if her mouth isn't open it all "expels" and they have to put it all back in. So at dinner "L" prompted kenzie and pushed her mouth open wider which enabled her to get more of the bite in. Kenzie swallowed SO well! Some of the times when they asked to see her mouth she had already cleared it! The 2oz of food took only 17 minutes. Kenzie had a decent size vomit at the end of the meal which weighed out to 1/2oz which means she wound up eating 1.5oz. That's more than shes ever taken and we are really happy.

Eiee came yesterday and we've been having a good time with her. She's watched all of Kenzies therapies and we have had some yummy meals. Kenzies love for drawing continues and as you can see in the second picture, she has discovered she can also draw on her hand! (lucky me) In ST therapy today Kenzie took the tool she was supposed to chew on and tried to color with it. The therapist picked up on that and got out a crayon and coloring book. In between each bite, drink, and chew, Kenzie got to color. Usually kenzie's incentive in ST is either books or bubbles... we now have a new one. Jordan thinks she might take after her mommy and become an artist one day. Tomorrow, Eiee leaves in the afternoon and KKI has an outing to the aquarium! Jordan and I took Kenzie back in November when we had her evaluated here but she slept through half of it. Hopefully this time it'll be worth keeping her out late for. The aquarium in the Inner Harbor is really gorgeous and has an amazing 4D show.

I don't know if you read this allison and jason but thank you thank you for the great package!!! The kids all loved to play with the disney characters in the bath already and I have started reading my wonderful magazines :-)

Where we left off...

Picture 1: Kenzie at Nanami (sushi restaurant) giving the sign for "can I have it"
Picture 2 & 3: Kenzie and Lilly doing shaving cream art

Feeding wise the weekend was not good and I was looking forward to Monday coming so we had the team back and would hopefully make some changes.

Monday morning the team realized as I already had, that something wasn't working. I spoke to Kenzie's primary feeder about what she thought it might be and when it started exactly since we have changed so many things along the way. At breakfast, if I recall correctly, kenzie needed the nuk every time so at lunchtime we changed 2 things. The first was to make the food slightly thinner. It's still not as thin as a stage 1 puree baby food jar but not as thick as it had been all weekend. She is still on all fresh foods but with a bit less rice cereal added. Right away Kenzie had an easier time with it. Our primary feeder "L" also figured out something that is really making a huge difference. Kenzies protocol had been that she took her bite and was given 30 seconds to clear it. When the buzzer goes off the feeder tells her to show them her clean mouth. All weekend Kenzie still had a full mouth at the 30 second mark. "L" realized that if after few seconds she asked her to show her her mouth, as Kenzie opens her lips sort of push the food back in her mouth. She then says "kenzie, a little more... keep working" and again waits 5 - 10 seconds and asks her to open her mouth. When she did this almost every time, Kenzie had swallowed! She barely needed the nuk at all yesterday. Because of this "discovery" it will now be in Kenzie's protocol that whoever feeds her will have to ask twice during her 30 second time period for Kenzie to open her mouth. They also changed Kenzies use of the cell phone from a constant to an incentive. After she clears her mouth, she can play with the cell phone for 15 seconds.

Today, breakfast was kept the same as yesterday and negative vocalizations were kept at a minimum. She did well and at lunch I was told that we would make another change. They were now switching from her 20 bite session to 1 ounce of food however many bites that took Kenzie to eat. Kenzies been getting about an ounce every meal but this way they would know exactly. In order to try and get this done quicker since taking away the incentive didn't work, they were going to use "rounded" spoonfuls. Up until now when they give Kenzie a bite, the amount of food on the spoon is pretty small. They level out the top. At lunch today they were going to try basically a heaping teaspoon and see what happens. There is a thought process that says that the more food you put in the kids mouth, the more they realize it's there and works harder to swallow. So at lunch I was very anxious to see what would happen. Her percent of "expel" (what falls out of her mouth and needs to be put back in during the bite) went up a lot and her negative vocalizations were very high (partly because lunch is always a bad meal for her... shes very ready for her nap) BUT the rest went so great! I think she ate apples, bananas, and sweet potatoes maybe? Bite 1: Kenzie took her bite and after being asked to open her mouth the second time ... she had cleared the food. Bite 2: Kenzie cleared the food before they even told her to open her mouth!!!! Kenzie finished all of her 1 ounce of food in less than 10 minutes and about 9 bites I think? Timewise that's about half the time it was taking Kenzie to get approx the same amount in. She had no vomiting, maybe 1 or 2 gags, and no refusals. You should have seen our feeders face... it was a mixture of shock and glory all at once.

During dinner yesterday our behavioral psychologist came into the observation room to watch Kenzies meal and talk to me. She sees Kenzie at this point as not having really many behavioral food issues at all. She thinks most of her issues are a skill deficit. That's good and its bad. It's bad to her because as she puts it "I can fix a behavioral issue in a few days no problem" whereas a skill deficit can take days, weeks, or months for kenzie to hone. She did say that in a good sense if we go home and follow kenzies protocal to a "T" we should have no issues keeping it up because right now she isn't fighting us at all. We just have to find really good therapists in NY and Cali to help us with the skills. In about a week or so, I will start feeding Kenzie myself... I really think and believe that will only go better for her since she is always willing to do more for me than therapists unlike many older kids.

So that's basically where we stand. I'm crossing my fingers that dinner goes as well as lunch although with Kenzie one never knows. We always seem to have ups and downs. My mom is on the train now to come visit till Thursday and then Jordan comes friday. We cant wait!!!

More Pictures

Picture 1 & 2: Kenzie instructing us in the proper way to hold a pen. Her Grandpa “H” taught her this last week in an hour with a crayon. Now whenever she picks up something to write with, Kenzie repositions her fingers so she has it the right way.

Picture 3: Auntie, Tracy, Carly, Lindsay and Kenzie at Ra Sushi

Pictures...

Picture 1: Kenzie and her Great Auntie
Picture 2, 3, 4, & 5: Me and my babies

Sunday

Picture 1: (from left to right): Carly, Me and Kenzie, Tracy, Lindsay, and Molly

Picture 2: When we got ready to go out Chubby thought he could come with us. He jumped up on the bed, over to the nightstand and got in Molly’s dog bag. He sat himself down and waited to be taken out. It was SO funny!

Picture 3: Chubby licking Kenzie

Picture 4 & 5: Kenzie’s excitement over seeing the dogs!

First let me say that I really have the greatest family and best friends ever! Kenzie’s Great Auntie showed up on Thursday to come see Kenzie with lots of goodies for Kenzie, Lilly, and Chance. We took so many pictures that I will have to put them in a few different posts since I can only do 5 at a time. Kenzie had so much fun with great Auntie. Friday night we went to a sushi place in Fell’s Point called Nanami. It was a little place with tasty fish overlooking the water.

Then Saturday morning my friends Carly and Lindsay drove here. After Kenzies lunch they asked me to meet them downstairs as they had something big they couldn’t carry themselves. As I cursed them in the elevator for bringing us stuff that we didn’t have room or need for, Auntie was laughing behind me. We walked outside and the best surprise ever was waiting for us. CHUBBY! They went to Long Island, got Chubby (our dog) and brought him here for the night!!!! I have missed him so much and was getting so sad that Kenzie stopped remembering him. Anytime I asked her about Chubby she wasn’t looking for him anymore like she usually does. I always feel like poor Chubby has gotten the shaft since Kenzie was born and feel so guilty so you can imagine how happy I was to see him. We took Kenzie outside to see him (and Molly, Lindsay’s dog) but I don’t really think she “got it” until later. Later, we took Kenzie to the hotel so she could play with the dogs and you can see from her face in the pictures with her on the bed just how happy she was! She loves her doggie brother!!! Carly’s sister Tracy met us again and we all went to Ra Sushi for dinner. The music was loud and Kenzie danced half the meal. The food was delicious and I hope to go back there more in the next month. Auntie slept at the hospital last night so I could spend the night with my friends and Chubby. She did a great job and I actually slept without going crazy over what was happening with Kenzie. This morning after Kenzies meal, we all went to Jimmy’s for breakfast before the dogs came to see Lilly, Chance, and Kenzie once more before leaving. I was so sad to see everyone go. I said to them that I actually almost forgot that we were spending 2 months in a hospital last night. It just seemed so normal and fun (minus Jordan not being here).

Kenzie’s OT and ST sessions are finally going great! Shes really starting to explore with her mouth and we are even seeing that progression out of her sessions. Kenzie has never been a baby to put anything in her mouth… no toys, no remotes… no food, nothing. Lately that is changing. Kenzie loves to taste edamame and does that whenever it’s on the table. Last night she saw a rock (yes, a rock) and tasted it twice much to my surprise. I guess I have to start watching her. She also will take a cup of water and pretend to drink it. As for feeding we are sort of at a standstill right now. Kenzies stage 1 purees from a jar were falling out of her mouth easily. One bite would take 3 scoops to keep in. She swallowed them easily but we weren’t sure if she was purposely expelling the food or if she lacked skill to close her lips tight enough to keep it in. They decided to experiment and use thickened puree from fresh foods. What we found is that with thick puree she keeps the food in much better but she now has a lot of trouble swallowing. I guess now she lacks the skill to move the food around in her mouth and push it back to swallow. Because of this, her latency to swallow (time) has gone up a lot. Also, now since she is not clearing her bite on her own most of the time, they are back to using the nuk after 30 seconds. Now her meals are taking much longer with the same 20 bites. Tomorrow when her Dr comes back I will ask which is really better for her… quicker meals where she swallows on her own and maybe we can up her bite count, but expels… or longer ones where she still needs a lot of help. I really don’t know the answer myself but I do like to know how they come to make that decision. The other thing is that Kenzie’s negative vocalizations have gone up a lot too. I’d really like to go over with her dr when this started happening… did it happen when we took out her incentive with the books?, or when we started with the thickened foods? I don’t remember myself but do know that at one point she barely whined and cried at all so if we can go back to the graphs and look into it, maybe we can switch something back since the team really wants her negative vocalizations at under 20% each session and right now we are probably at 90%.

All in all it’s been a great weekend and thankfully we have less than a month less here. You’ll see that I have pictures in the next few posts as I can only fit 5 per post.

Happy 15 Month Birthday & Halfway There...

We have officially hit our midway point here at Kennedy Krieger. I can't say it's flown by, but at least having great roommates now is helping. Kenzie has made some big strides in OT and ST since they started giving her a more structured setting. Today she even took a rice krispy, put it in her mouth and did not gag or vomit! To watch that was amazing. In her meals, Kenzie is taking about an ounce of pureed food a day. It's not as much as we had hoped for but it's a start. The variety of foods has been increasing and now she has tried lots of different things. In that respect we are very impressed. Kenzie no longer gags and vomits at pears and really doesn't care when we introduce something new. She is having trouble propelling the food from the spoon to the back of her mouth so every time she takes a bite, half of it falls out of mouth. Because of this today they thickened up her food to see if the consistency is just too thin for her to maneuver. Watching Kenzie with the thickened food it seems that less falls out of her mouth but now she has more trouble swallowing. We suspect though that in a few days she'll get stronger at the swallowing and the thicker foods will probably be better.

We have also changed Kenzie's protocol a little. They have taken away her incentive and now are trying to have Kenzie just take bite after bite with some cheering between. They want to speed up her sessions so that we can up her bite count in the same allotted time. Breakfast and Lunch they left a video on during the whole meal but it seemed to turn Kenzie into a "video zombie". Kenzie has never been one to like tv and videos so much so Jordan and I asked that we take the video away and just put on music. Dinner with the music Kenzie seemed much more awake but she really really wanted the clicker and buzzer that they use. She kept pointing to it and using her sign for "give it to me." We have asked that they allow Kenzie to play with a tangible object that is electronic (the only things she seems to really like) while she eats. We are hoping that maybe tomorrow they add that in but understand that if that makes Kenzie not do what she needs to, they'd take it away.

As for food variety... the allergist here eased up on Kenzie's restrictions a bit and will now allow any vegetables, oatmeal, fruits, and rice cereal. The team goes food shopping this week so I am excited to see what they bring back.

I never really got to blog about Kenzies signing but it's really exciting. Jordan and I have shown kenzie baby signs for months because we know she will be delayed in speech. Here at KKI, they are big proponents of it too. About a week and a half ago, signs and kenzie just clicked. She now can really communicate with us. Kenzie does the signs for "give it to me", "more", "all done", "bunny" (her blanket... and we made up the sign for it), "here boy" and we are working on the signs for "book" and "thank you" She also really understands everything we say to her.

Yesterday, Grandma Daryl, and Grandpa H came to visit. They brought presents from Kenzies cousins Skylar which all the kids in the room are loving! Kenzie had so much fun with them as you can see above. Tonight Great Auntie is coming and is staying all weekend. Everyone here comments on all the visitors Kenzie gets and we always think how lucky she is!

Our friends Traci and John sent us some tv shows to watch that we've missed. We can't wait to find the time to watch them and are so excited. THANK YOU!!!

More later on in the weekend...

Twins for a day!

Today Kenzie and Lilly were twins. We got them matching outfits last night and Lilly was so excited this morning to put it on. They even had matching piggytails. I swear I need to get Kenzie a big sister.

Yesterday, feedings were not great. There wasn't much to report. She did take all her bites but she cried a lot, gagged a bunch, and vomited up anything we gave her. Today it was like a new person. I guess kids have their days too. Today kenzie didn't cry at all. She has now tried... pears, apples, mangoes & pears, rice cereal, squash, sweet potatoes, and carrots. She seems to be getting used to trying new tastes and gets better with it everytime. At breakfast today we stopped using Dr. Seuss books and Christina Aguilera as incentive. We started using a kids video and new books instead. Kenzie was getting bored with the same thing ever meal.

Other than that there's nothing much new to report. Grammy Daryl and Grandpa H come early tomorrow. They'll stay till thursday and then Great Auntie, Carly and Lindsay are coming this weekend. We get so many visitors and are so lucky!

I havent had time to send cards yet so I wanted to make sure I got to say THANK YOU THANK YOU to the Angels for the yummy gifts and to the Levins for the so so cute stuffed monkey. It's so much fun when something shows up here. It's really nice for you guys to think of us :-)

Signs Signs

Picture 1, 2, and 3: Kenzie's New Backpack

Picture 4: Kenzie with Jordan, Amber, and Barbara

We had a great weekend! Kenzie's therapies went really well (until tonight). They started introducing new foods like pears, apples, and sweet potatoes. For the most part, Kenzie takes all of her bites and swallows in the time limit they give her. She is also getting much better at moving the food back in her mouth without help from the nuk and feeder. Dinner was terrible today but we are hoping that was a fluke.

Our friends Amber and Jordan and Amber's mom Barbara came to see us today which was so nice! They watched one of Kenzies sessions and played for a bit. Yesterday, Grandma Eiee and Grandpa Billy came for the day. It was a lot of driving but really nice for Kenzie to get to see them both. I forgot to take a picture of them with her :-( but next time I will for sure!

We are slowly increasing Kenzies rate of formula and seeing what she can tolerate. As of right now she gets about 4 hours a day off her tube feedings. BUT!... we found out about a different backpack that kenzie can wear herself! We ordered it early this week and got it yesterday. It looks so cute on Kenzie's back. She looks like a little backpacker. At first when we put it on she wouldn't move because its heavy. But in the last hour shes forgotten about it and is moving almost as easily as without it. It is like a whole new world will open up for me. I don't have to follow her around with the bag and she can move about all by herself. You have no idea how great this is for us!

Kenzie is LOVING her room with Chance and Lilly. A few minutes ago she started crying because I wouldn't let her in the bed with them. Chance and Lilly are in Chance's bed watching a movie but because of Lillys cough we can't let Kenzie get that close. Today she was following Chance around the playroom and copying everything he did. They all play so well together and are so cute.

Jordan left today for 2 weeks. It's going to be the longest we've ever been apart but compared to a lot of other people here we are pretty lucky. For Jordan its the worst but hopefully 2 weeks and Valentines Day will come really quickly.