Day Eight

Outside the UVA Battle Building.

Wow. We are worn out and ready to be home. Tonight is our twelfth night in a hotel. Thankfully the end is in sight with only three more sleeps until home. Today was a good day on the eating front, but I for one just hit a slump today. The build up of exhaustion and stress is dragging me down. Plus my daughter informed Polly this afternoon that she was busting her balls. Apparently I need to censor myself more as Olive has reached the language threshold where she can hear something once and tuck it away inside her little head waiting to repeat it and mortify her mother. The only redeeming aspect is that Polly didn't understand exactly what she had said. I certainly didn't clarify, and they moved on. So that.

Speaking of that troublemaker, she had a good morning. She didn't get nervous or throw up when we got there. I admit that I have been sitting next to her in the back of the car in a so far successful attempt to mitigate the odds that she will get anxious about our arrival. If only I could clone myself and do that at home to prevent her vomiting when we arrive at places like her Tumbletots class or school. But hopefully she grows out of that soon.

A firetruck sighting is a good start to any day.

She is already much braver than she was when we got here. She is now willing to be weighed without throwing a fit, which is a big step for her. Breakfast went well with Polly. Olive drank her milk, and she took a few bites of whipped cream cheese off of a spoon. She also was willing to try sausage, and she practiced biting pieces and spitting them out. And she thoroughly licked a piece of bacon. Polly also presented her with a mini muffin. She mentioned school and a boy from her class when she saw it because she had that for snack at school the week before we left. She has an incredible memory. She very bravely took two bites of the muffin, but then spit them out too afraid to try to chew it. It doesn't sound like much, but she had a positive attitude about breakfast so that was a nice way to start the morning.

This muffin is terrifying.

The dietitian, Sarah, sat in on breakfast to discuss our nutritional plan, and then I sat with her for a little while after in the lobby while Dain took Olive to play. Sarah admitted that it's a tricky spot to be in since Olive has been getting such an amazingly nutritious diet through her tube. She wants to help us facilitate hunger without taking away all the great nutrients. We talked about some different options, and she is going to write up a plan for us to switch a few things around in our blend to hopefully still provide nutrients while cutting calories so she can work on taking them orally. For example, we are cutting out her high calorie yogurt/peanut butter snack all together as that can be replaced with her milk intake. We are also going to cut the oil in our blends in half to take out fat calories. We will still give her a full dinner blend with about half of breakfast and half of lunch. And we will add a multivitamin to cover our bases on micronutrients. This will of course need to be tweaked regularly depending on her weight checks and her oral intake. Unfortunately today her weight was down. It was 10.45 kilos. Her previous weight checks were 10.4, 10.55 and 10.65. We have an appointment scheduled with her pediatrician for early next week to get a baseline weight at home.

Washing dishes.

After a few minutes of play time with Patty in the play area we headed to preschool with Crystal. The first thing Crystal had was a tractor book that actually had wheels and could roll around. Of course Olive loved it. They read it, and she played with it for awhile pushing it around and regaling Crystal with tales of her tractor rides. "Obbie go on a tractor ride." "Farmer drive." "Mommy sit by you." "My daddy go on a tractor." After that fun we looked at the globe since Olive had asked about it yesterday. It was a little advanced for a two year old, but we showed her where we live and where we are. Later in the day she belted out "up here in Minnesota!" so she was obviously paying attention. Then we all painted with water colors, with Dain showing up the ladies of the family. The painting ended in a power struggle because Olive wanted to be in charge of the paint and the water, and Crystal told her no. Typical two year old stuff. She recovered by moving on to the puzzle from yesterday that she had liked. She did that for awhile, and then we ended with time to play in the kitchen.

Putting on the Ritz.

Then we headed for snack with Polly. Olive was excited to see pretzels. She mostly likes to lick the salt off, but she took a few bites, spitting out the pieces. Then she dipped some in hummus and took small licks of that. Her favorite was the goat cheese that she took a few big licks of. Polly continues to try to get her to close her mouth around a spoon to get all the food off. That's really hard for her, but she's trying. She also took some nice small bites of Ritz crackers and then worked on keeping the crumbs in her mouth to work them down. She probably ate 1/4 of a cracker with a lot of encouragement so that's nice to see her putting the skills together of biting, chewing and swallowing even if it is very much a struggle at this point.

The Olive taco.

Polly also started to try to do some language testing, but Olive was totally messing with her. She pretended not to know words that she clearly does know. She was amused with herself and totally doing it on purpose. It took Polly all day to get it done and even then she just stopped when Olive hit two years and six months on the test because it was such a struggle to get her to participate. She would look at a house and say it was a dog. Or just pretend she couldn't hear Polly.

Lounging in the rice and beans.

We had a short break in the play area before Olive's favorite session with the occupational therapist Jen. First they did swings. Jen introduced a new one she calls the "taco swing." Olive loved it. They also tried another hammock swing that she was equally amused by. Then they worked on blowing cotton balls with straws to improve oral skills. After that, they made a construction paper pumpkin, and then they had a car wash, hitting on Olive's love of both cars and water. The soap was shaving cream, and they would rinse and dry. By Olive's special request they also played with the rice and beans bin at the end. Olive decided that it wasn't enough to bury her hands or the cars. She wanted to bury her entire self. She hopped right in and asked Jen to do that saying "bye-bye Obbie." Disappointingly for her, there was not enough beans or rice to cover her tiny bod.

Next we walked to grab lunch for ourselves before heading back to the kitchen for lunch with Polly. For lunch Polly presented Olive with cheese slices and tiny cookie cutters. They cut animal shapes in the cheese, and Polly encouraged Olive to try to take little bites and then keep chewing. The girl just hasn't grasped chewing yet. She will do one or two chews and then she spits out the pieces, not understanding that she needs to keep chewing and then swallow. Olive took a few good bites of spaghetti sauce (letting the noodles slide out of her mouth of course.) She was very reluctant to try the meatballs. She took a tiny lick but was unwilling to take a bite. She also drank her milk, but in case I haven't been clear about this, it is work for the adults involved to get her to drink the milk from her straw cup. It is a lot of saying ok let's take three more drinks and then we can see this, with cars and books and various things being the impetus for her to take those drinks. It's utterly exhausting in my opinion, and I really don't know how I'm going to do it by myself the four times that I will have to every day while Dain is at work. It's an untenable proposition really, and we are going to have to figure out a realistic plan for coming home. Olive is really all that I do. And that was ok in the beginning because she was so fragile and needed so much, but as she gets older we really need to find ways to balance our lives more.

Cheese party.

Following snack, we headed to the day suite for an outfit change for Olive who just gets absolutely covered in food at every session. At the end of today she looked like a human Cheeto. Her clothes have been destroyed on this trip. Olive took another three ounces of milk from her bottle before taking a short nap. After she woke up, we had a few minutes to play with Ms. Patty, who helped her make a skeleton art project. Then we had our last snack with Polly. This one was the worst of the day. She played with cheese mostly taking just a few licks. She didn't touch her creamy items, opting instead to suck on Cheeto puffs. She did get some crumbs of that though and was able to swallow them down with milk. She was clearly just tired. She was mostly playing with the cheetos by the end, delighting in breaking them up into crumbs. It was a battle to get her to drink her milk from the straw too. Polly enticed her with a truck puzzle book though, and we powered through. But I think we all walked out of there a little dejected.

Receptive language testing.

It's hard to hear that you just have to wait for her to get older to grasp these concepts. Polly said that Olive tests normal cognitively and for language but that maybe she is just emotionally behind her peers because she seems to have less of an understanding of contingencies than other kids her age. She said she may be more like a 24 month old in terms of her behavior based on her prematurity. I don't really know if I agree with this or what the point is of defining exactly what month she is developmentally in different areas. Olive moves at her own pace. We've accepted it. The girl didn't roll over until she was a year old. Three months later she started walking. We don't expect her to be exactly like her peers much like I wouldn't expect a full term baby to be exactly like his or her peers. Every child is different, and your expectations of who your child should be can really get in the way of the awesome person that your child already is today. Olive is really good at doing Olive. Even if it does bust my balls.