Day 12: Rock 'n' Roll

When we left the room for breakfast today I said to Whitney, "ready to rock and roll!?" She was like what!? Haha. I said it to her all day and soon she would say that I'm rock and she is roll.  But Whitney really did "rock and roll" today at her meals!  

For breakfast Whitney ate little bites of toast and strawberry, and drank 6 1/2 oz of chocolate milk boost kids essential! She still whines a lot and gets distracted. If she is feeling too overwhelmed or anxious then she starts flapping her hands and playing with them and making noises with her mouth. We use to ignore this last week but this week I'm trying to use it my advantage. I give her some sensory input and try to see what her hands are, sometimes they are horses or monsters. So I try to be creative and involve them a little bit then Whitney seems more willing to continue eating. 

Snack went well also with Whitney eating one small apple slice with peanut butter (awesome that she dipped it a few times), 4 teddy Grahams, and 2 1/2 oz milk.  Afterwards she got to go to the play room for lots of fun! I can actually hear her from our room, having fun! 

We turned our mat over to reveal a town and map to drive on! Fun! 

Lunch went pretty well I think but Whitney told us she was full so we asked her to eat one more goldfish cracker to be done. But she gagged on it and threw up everything. She had "only" drunken 4 oz of BKE and 5 goldfish crackers. Maybe she was full or maybe she simply gagged. Hard to tell but we are all still leaning about how her body can tolerate all this food and we are trying to help her understand how her body feels. It's a learning process for sure and one that will take a long time to understand. She drank a little more after her emesis and was coughing a lot. 

Shorty after lunch was the big team meeting! A volunteer came to sit with Whitney while she watched Bolt on the computer. He said our room was big and wondered how long we were here for. So I happily told him why we were here and about Whitney!  Anyways the meeting was awesome and so positive! I'm so happy that Whitney meet and or exceeded all of her goals!! I'm excited for my husband to learn how to co-lead and lead the meals. It will be so helpful for our whole family! 

Here is an outline of our meeting:

We got a nice package from our friends from Breathe of Hope (CDH awareness group)! She even contacted my husband to add a little something special to our package...a bath and body works candle! And hand sanitizers just for me! Smells so good even when not lite! We also got a nice letter from our friend Grace!

Whitney watching her movie Bolt! 

So we got to do something new for snack! The Therapist suggested we go some place else, to kinda prep for the weekend outings. I jumped at the chance to go anywhere else but our small room we have our feeding sessions in with the therapist.  So we went outside to see how she would do in a new setting.  I think it went pretty well and maybe even a tad better than usual. Her intake wasn't great   and she was distracted a little by all the new things but it wasn't hard to get her back to eating. She ate a one apple slice, 3 ritz cheese mini cracker sandwiches, and 3 1/2 oz of BKE. It was fun actually and I thought Whitney looked so beautiful  eating in the outdoors! 

Whitney and Sarah! 

We stayed out side for a while longer. Then went to the "library" for a book, movies, and to play with the iPad. 

Dinner went well too! Whitney ate  a 1/3 piece of her bacon, a little banana, a few bites of pancake with butter, and 3 oz of grape juice. She got to have fun in the shower afterwards! 

For snack, I introduced to her the goodness of milk and cookies. ;)  She totally ate 1/4 of a regular-large sized chocolate chip cookie and drank 3 oz of milk. We still have to show her how to dunk the cookie in the milk but this is definitely going to be a thing around my house now! I'm excited to bond with Whitney on a whole new level! 

So we get to go out of the hospital tomorrow and I'm so excited! But I'm also freaking out about actually depending on food to keep her fed and not the tube! This is a huge jump for me! I'm so nervous and I'm going to bring my tube feeding supplies. I don't know how else to calm my self and feel safe. I will probably do this till she is completely weaned from the tube. But she will not receive a tube feeding while we are out trying to generalize her skills in the community, not even water!  And I'm super excited to see my baby boy and husband and family! Stay tuned for tomorrow's blog about our adventures! 

Weight: 15.1kg