Day Seven

We pumped ourselves up this morning with sporty apparel
and "Eye of the Tiger."

It's 80 degrees and sunny here. That makes it pretty hard to have a bad day. Our Tuesday was decent. We made it to UVA on time without anyone throwing up. A solid start. Unfortunately Olive was not very cooperative for breakfast. She refused most everything. The only item that piqued her interest was mini M&Ms. She did a good job of putting those in her mouth and keeping them in. Of course once they started to melt too much she felt the need to spit them out. But she sucked the candy shell off of ten of them so that was good to see her actually interested in something. She was otherwise not willing to follow Polly's commands to try something else. It was frustrating. Polly keeps using words like "tenacious" and "strong willed" to describe Olive, and she says that Olive is more determined than most kids to do what she wants to do. This of course is not a surprise to us. We've lived it for almost three years. She also adds that if she wasn't so tenacious she wouldn't be here. That makes me a little sad to think about, but it's true. We're lucky to have her, and she's fought to be here. I remind myself of this, and it minimizes the gravity of her feeding issue. We will get through this. Polly thinks within eighteen months Olive will be an eater. She says she has too much going for her to not figure it out. 2016 tube removal? I'll take it.

M&M tongue.

After snack we played with Ms. Patty, and she gave Olive another book to keep. The books are donated to the hospital, and it is such a great program. We have quite the collection going. Today we received "It's Time to Sleep My Love" and "Monkey Truck." Next on the agenda was preschool with Crystal. Olive is much more enthusiastic about this now. They started with reading a firetruck book, which Olive loved since she has a small obsession with any type of vehicle: bicycles, cars, trucks, planes, motorcycles, boats and most things with wheels. Cement mixers and tractors are especially delightful to Olive. That's our girl. After the book they did a shapes puzzle. Olive surprised us and really focused on it for a good twenty minutes. It's fun to see her mind work as she tries to figure something out.

Preschool.

Crystal had to pull her away from the puzzle she liked it so much. Then they did some art with markers and masking tape, and we ended with free play time with the kitchen. Olive says "wash dishes with Ms. Crystal" at random times so we know she likes it a lot. She puts everything in the sink before washing it all one by one, down to the corn on the cob and piece of cheese. It's great imaginative play.

After preschool came snack with Ms. Polly. This one bordered on disastrous. There were tears and screams and a lot of emotions. It started ok. Polly offered her lime yogurt, whipped berry cream cheese, and easy cheese. She refused the first two and took the tiniest lick of the cheese off of her finger. Polly wanted to help her and have her take one big lick. She flat out refused. She's at the age where everything is a battlefield, especially if it involves the scary world of food. And it becomes a power struggle. Polly threw it down that mommy and daddy were going to leave if she didn't taste something. She screamed and threw things on the floor. Polly warned her again. Olive held her ground. And then we were asked to leave. Cue the hysterics. Olive wailed and screamed. It was so hard to listen to as we waited in the hallway. I realize the point of it. Olive can't win every time. But every fiber of my emotional being wanted to run in there and scoop up my child to protect her from that sadness. I also had the mom guilt that she was somehow going to stop trusting us because we abandoned her.

Hey Olive, make yourself at home.

We were also just waiting for her to throw up, and any time she gets really worked up she tends to do that. Polly told her what she needed to do for us to come back in, and she did finally take a big bite. It felt like an eternity, but I'm sure it was only a minute or two. And she miraculously didn't throw up. We've never really had to discipline her too much before, so it was a hard cold dose of reality for the girl that is used to her parents catering to her every whim. Lesson learned. But she was an emotional wreck after that with her puffy red eyes. She didn't finish all of her milk as she has been doing for pretty much every session with Polly. Every day seems to hold the good, the bad, and the ugly. This morning's snack was the ugly.

Luckily Ms. Jen was our next appointment. Olive's new phrase du jour is "what's next?" And her eyes light up when we finally say it's time for Ms. Jen. She always starts with a gross motor activity to get Olive moving and get out any nervous energy. Today's activity was riding on a toy car on a little tour around the floor. Olive was pretty focused on the fact that the car had a phone attached to it, and she kept picking it up and saying "hello?" But once we made it a hide and seek game where Dain would run ahead and hide around the corner she made her way around the big circle.

Jen explained to us that it was actually kind of difficult to think of activities for Olive because in the occupational therapy world she is very high functioning. So Jen is trying to work on some new skills but also focus on ways that we can try to ease transitions and calm Olive's natural trepidation when encountering the unknown. Jen suggested trying to use some of these strategies before eating times, which is actually a great idea. For example, swinging calms her and doing an activity with lots of movement like running and jumping definitely helps to take her mind away from her nerves. Our minds are already spinning as to how we can incorporate some of Jen's ideas into our home life. An egg swing chair might be a nice installation in our living room, which has remained without proper furniture or a coffee table since Olive came around. More important things to buy and do.

After the car, Jen and Olive worked on some fine motor skills. They used tongs to pick up cotton balls. Olive hasn't quite grasped the skill yet. She still uses one hand to put the cotton ball in the tongs before squeezing it. It's painful to watch the struggle. Jen said it's a great "pre-scissor skill" to work on. I have honestly never considered Olive's scissor skills. She would like to use them at home, but you better believe I hide them. But apparently this is the age she should start learning. Jen has learning scissors that are more like tongs with a loop at the top. They worked on snipping pieces of "snow" from construction paper. Olive did better with Jen helping. After that they did the rice and beans bin, which Olive loves. So much so that she got in. Just climbed right in. And then she proceeded to have Jen bury her hands and feet, and they took turns hiding cars in it. It's the little joys in life. She was beaming. Jen makes a great picture schedule to show Olive all the activities with the last one being "shoes" meaning it's time to go. Olive isn't a fan of that activity, but Jen promised to see her tomorrow and do more swings. So that'll be fun.

Hanging out in the rice and beans.

After OT we had some free time as Polly was unable to have lunch with us today. It actually worked out perfectly because it meant we got to sit outside on a gorgeous fall day. We went to the Mellow Mushroom pizza place across from the medical center. It was delicious. And Olive actually did her best job eating all day. We didn't pressure her. We just offered her food and let her do her thing. She did a great job licking all the salt off of pretzels and taking a few bites. And she dipped a few in hummus and took some good licks. She also licked parmesan cheese off of soft pretzels we ordered, and she took about five good licks of the marinara sauce they came with. She liked the cheese so much she was even willing to dip her finger in it and lick it off, which Polly tries to get her to do with crumbs to get used to them in her mouth. She also drank four ounces of milk with a little encouragement. It was nice to have a meal without the stress of having a showdown with a two year old every minute.

After lunch we took a nap in the day suite. And by "we" I mean Dain slept in a chair while Olive slept in my arms in my chair. It's hard to resist her sweet voice saying "mommy rock you to fweep" before nap. We've created a sleep monster, but we've had enough battles over eating that I just wasn't willing to battle over naps on this trip. So I gave in to her demands and literally rocked my almost three year old to sleep. It's on the list. Believe me. Eating. Sleeping. Getting rid of pacifiers (that she still uses at sleep time.) Oh, and potty training. Just thinking about that list makes me want a nap.

After nap came one more snack with Polly. Olive took a few tentative tastes of guacamole, and a few tiny licks of goat cheese before she shut down. And then she shoved a bowl of chicken noodle soup at Polly sending it flying. I was horrified. Our child is defiant. Polly was very stern with her, pushing her away from the table and saying "no" very authoritatively. But they moved on. Olive took another taste of the soup, and even licked a noodle too. Polly put the noodles on a spoon and asked Olive to give them a kiss. She complied right away. The only problem is that it resulted in a spoon of noodles to Olive's forehead because the girl thinks a head bump is a kiss. She just leans her forehead into your head to kiss you. In all honesty we didn't dispel this notion for awhile because we are total germaphobes, and we certainly didn't want Olive giving kisses when she was itty bitty. She does now kiss with her lips, but you have to specify for her to use her lips because the head bump is so engrained. It's interesting to see that with a nonthreatening command, Olive complies right away. Of course she could kiss those noodles because that had nothing to do eating in her mind.

Guacamole? Meh.

So snack was kind of a bust. Polly said Olive is clearly sick of her and that she had more desire last week. That is disappointing of course, but there's not much we can do to change Olive's internalization of everything she's experienced these past ten days. Her world has changed in a major way. She is now responsible for some of her calories, and that is a big shift. Polly really wants us to try to cut calories to try to stimulate Olive's hunger. She did the math on it and told us that Olive can grow on a very small amount of calories relative to most kids her age based on her weight checks and her calorie counts. I've known this for awhile. Doctors and dietitians have told us a super high number of calories to give her. We tried, and she would projectile vomit because she was being overfed. So we didn't feed her as much despite what we were told. Everybody is different, and she just so happens to need fewer calories. We'll meet with the dietician again tomorrow but for tonight Polly instructed us to give Olive just water for her lunch blend to try to bring out that voracious hunger. So she received two ounces of breakfast blend tubed in the morning with nothing else tubed. She was running on the milk she drank and the small tastes she took. We hesitantly gave her four ounces of water in her tube before heading to the park this evening. The poor girl is obviously hungry. She was almost lethargic at the park just wanting to swing. It's hard to purposefully not give your child what you know they need, but this is the only way to get her eating. I'm 100% sure her empty belly turned her into a little zombie. But she doesn't know how to fix that with food. Instead she turns to milk. She drank nearly 9 ounces of milk after the park. What!? That's more than we even thought her tummy could hold at once.

Clutching her craft projects.

And then she did an amazing job at dinner. She modeled many of the skills that Polly has been trying to get her to do. It's reassuring to know that in a lower stress environment she's willing to try. We were laid back about it and let her do her thing. She bit down on her spoon and took bites of goat cheese, which is so awesome. And she happily placed Cheetos on her molars to practice chewing. She is such a turkey, refusing to do these things for Polly. She's really just a girl who does things on her own terms. And while that's an incredibly frustrating thing for us to deal with right now, it will serve her well in this unpredictable life.  A nurse told us when she was a few weeks old that she would hold her own on the playground. Yes you will baby girl. We're all energized for tomorrow. Olive is now like the energizer bunny after getting all those calories plus about half of her regular dinner blend. She is serenading Dain to "fweep" with her rendition of "Row Row Row Your Boat." Bring it on Wednesday.