Thursday, February 5, 2009

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...

Tuesday, February 3, 2009

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 :-)

Sunday, February 1, 2009

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.