Day 17: challenges

Today was a bit more challenging for most of our meals. Which isn't necessarily a bad thing. This isn't a race to see how fast Whitney can be tube weaned, it's a really long journey to a better quality of life. I believe that this program was the jump start we needed to help us and Whitney be able to tube wean. It's good that we are all learning how to mange Whitney's behaviors here so can apply it at home. Speaking of which we only have 2 days left here! The first two weeks seemed to drag on while this week is flying by! 

Daddy got to lead breakfast again today! He did great working through Whitney's behaviors and figuring out how to calm her down and bring her back to the meal when she gets overwhelmed by the expectations. Whitney ate 1/2 a strip of bacon, 6 Cheerios, and 5 oz of milk! 

Daddy also lead for our stack time in our room. It was also pretty challenging and we could only get Whitney to eat one pretzel and 3 ounces of her milk. She said she was full and I didn't want to push her again this time. Then she said that she had to go potty! She's been a little bit constipated while here and that does not help with her appetite. So after she went potty she felt much better I think.

For lunch at 12 PM, Cameron got to join us! So it was just our family daddy mommy Whitney and Cameron. It was so interesting to see us all together and get a feel for how it would be when we go home. It was a bit chaotic with an almost 2-year-old with us. So daddy was in charge of Cameron and I lead the meal with Whitney. I could tell that Whitney was pretty overwhelmed with the situation. She did good at first it into Sun chips, but when I got out some chicken strips and fries for her to try she pretty much shut down. I had to stand my ground for a long time to get her to at least lick apiece. She also drank 4 ounces of grape juice during the meal. Meal lasted about an hour but half an hour in we excused Cameron because he was done. 

She ended the meal on a good note so we were able to go down to turtle talk afterwards! The kids love it and I heard Whitney talking all about being Tinkerbell for Halloween again!

They finally had a good movie playing at the theater, it was despicable me. They also gave out a free Blu-ray of that movie to everyone that came! Whitney was laughing a lot so it was really fun and nice to be there with her.

Daddy was with us again for our 3:15 PM snack and a therapist was in the room also. But this time I got to lead again so that we could let Whitney know that I was still in charge. She did a bit better this time and ate six goldfish, about a quarter of the string cheese and 3 ounces of her BKE. It was interesting to be able to tell apart how Whitney is feeling. For instance lunch it was definitely more of a sensory overload but for the snack time it was more of her behaviors like say no and laying down on the table. 

We relaxed for the rest of the afternoon until it was dinner time. Daddy was the leader of dinner and he did great with the new chart that we implemented during snack time. Whitney likes it I think and does good at putting the stickers on it knowing how it works. She ate half a teaspoon of her cheese quesadilla, a little bit of potato soup, over 20 small bites of a chocolate chip cookie, and 5 ounces of her juice.

After our shower I got Whitney to drink two and a half more ounces of her chocolate BKE and then we got to paint her nails. She didn't fall sleep till about 930 tonight!

Photos of the day: Our kids with our parents! I'm beyond happy that Whitney won't have to wear her back pack around all day and bring it everywhere we go when we get back home! 

Weight: 15.1kg that's an increase!