Saturday, February 14, 2009

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!

Friday, February 13, 2009

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, February 12, 2009

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, February 11, 2009


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 :-)

Tuesday, February 10, 2009

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!!!

Sunday, February 8, 2009

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


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


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.